Hey cancer...

Life. Or something like it

2009-06-25T10:16:00.000-07:00

During the 3-day cancer retreat I went to in March I met some really wonderful people, including Beth, who had a recurrence of brain cancer at the age of 37. I received an email from her husband yesterday that she had passed away yesterday morning.

It’s so sad, not only because she is so young, but she was one of those people who, when you meet her, instantly increases the quality of your life. She was so graceful and full of compassion, and such a beautiful spirit. I really learned a lot from her at the retreat. I’ve been thinking about the unfairness of life and trying to understand how someone who has done a lot of good in this world has to leave it so early.

Good news and some thoughts

2009-04-14T10:05:00.000-07:00

Last week I had a mammogram done and met with my surgeon for the 1-year follow up. The good news is that there is no evidence of recurring or new cancer! I can breathe a sigh of relief for the next six months! Recently someone asked me for some tips on dealing with cancer... this is what I came up with:

The Top 10 Things I've Learned from Cancer

1. Keep a positive attitude about your diagnosis and treatment... you can curl up in a ball and cry for the next 12 months, or you can deal with it and move forward!

2. Find out if your friends and family know anyone who has the same kind of cancer and call them. Especially if you are still looking for a treatment center or a surgeon.

3. Forgiveness is the key to healing. If you are angry at someone, even in your distant past, it will impede healing. Forgive the people in your past and you will find peace.

4. Don't be afraid to call on friends and family when you need support. There are all kinds of things they can do for you when you can't do it yourself. From grocery shopping to laundry to scooping the dog poop!

5. Keep any negative people away from you while undergoing this process. You don't need that crap!

6. Support groups aren't my thing, so I blogged at places like "crazy sexy cancer" and "planet cancer." you meet a lot of people who understand what you are going through. There are also local cancer reatreats where you can go and relieve some stress, cry on people's shoulders and find strength. Harmony Hill on Hood Canal is awesome, and it's free!

7. Don't be afraid to laugh about cancer. Sometimes it's funny, like when you get a prescription for a "cranial prosthesis" (wig). I have a t-shirt that says, "hey cancer, you picked the wrong bitch!" It makes me feel good. (chucklenutshirts.com)

8. Ask your doctors lots of questions. Get their email. Research things online and then discuss it with your oncologist. If something doesn't sit right, don't let them bully you. Tell them you want to think about it, research it and find out what your options are. There is always an option to do something else.

9. There are some great books out there that are inspiring. My favorites were "kitchen table wisdom" and "crazy sexy cancer tips."

10. It's all about you right now, so take advantage of it. Play the "cancer card" when you need it and let people help you.

The end of treatment and other happenings

2009-04-03T14:05:00.000-07:00

I've been putting off writing this entry. First, radiation was a grind and I just wasn't up to it. But also, I am finally done with treatment and I don't know if I will be blogging here anymore. Much has happened in the month of March. Radiation ended on March 6. The last two weeks were pretty hard... lots of fatigue in the afternoons. I started getting some skin breakdown the last week and the week after I finished. That took another week to clear up. Other than being a little swollend and darker in tone, my skin is now doing great.

I was thinking that after radiation ended and my skin cleared up, I would start coming down sick. I didn't though, and soon enough found out why my body wasn't ready to get out of fighting mode. I had three deaths in my family in March. My grandma died the last week of radiation. My step-dad died just over two weeks ago and one of my uncles died last week.

My grandma was diagnosed with endometrial cancer not too long ago. It was too advanced for surgery and she opted not to receive any treatment. She was a great lady, who taught me how to crochet just last summer. I will always treasure the afghan she made for me a few years ago. I didn't know my uncle, but I feel very bad for my cousins and my aunt, because I know what it feels like to lose a father unexpectedly. It was an extra blow to an already stressful month.

My step-dad died in his sleep on March 18. He was ill, having been home from the hosptial for about a month, but we weren't expecting his death. I was at work when my mom called me and immediately left to go to her. His family came up from California and were really great. Did all the cooking and food preparations for when everyone came over after the memorial. It was a hard week, and coming back to work the day after the memorial wasn't easy either. Wayne taught me a lot... about having a good sense of humor and being nice to people. It was a joy to be around him because he was always laughing and in good spirits, even when he wasn't feeling well.

My brother wrote a really beautiful poem to his dad that we used in the program:

A father, brother, husband, and son

A coach, teammate, and soldier

You were generous and humble

larger than life and grounded in reality

you were strong, and you were brave

and when your strength was challenged

when life dealt you a few weak cards

you wore a smile, you persevered

and now, you can rest..

We miss your laughter

your stories, your companionship

you've touched so many lives

and we take with us your life lessons learned

and hold them dear with your memory

we miss you, and thank you

and we all love you

as much as you loved us

As much as that time was so difficult, I actually had something to look forward to. I was signed up for a 3-day cancer retreat at Harmony Hill the last weekend in March. I deliberated whether or not to go... I wasn't sure I would be able to concentrate on the task at hand. But, I did go and it was an amazing experience. Not only was I able to talk about cancer and the challenges of the past year and of those ahead, but I was also able to express my grief and lean on my new friends' shoulders. It was a wonderful three days of good, wholesome, organic, vegetarian food and not having to worry about or do anything. We did yoga and meditation and breath work and walked the labrynth, and I met some people who are truly amazing. I feel so blessed that I was able to experience the weekend and learn and grow from it.

Now that treatment is complete, I'm determined to do some reconditioning. I am starting a yoga class next week (with the instructor from the retreat) and I will be utilizing the personal training service at my physical therapy office for "athletic engineering." It's basically a physical-training program that will be geared for post-rehab patients. After that, I'm not sure, but I am determined to be in a better place by the end of the year as far as my physical, mental and emotional health goes.

I plan to pick up my "before cancer" blog, and if anyone wants to follow me there, you can do so at http://lunajewels.livejournal.com/ It's a "friends only" journal, so you would have to become a member of livejournal to read it.

Stress

2009-02-03T11:20:00.001-08:00

I am in my 3rd week of radiation. It's going well so far (after the horrible first day). My skin is rather pink and it's warm all the time. I am hoping it doesn't burn too bad.

Lots going on though that is stressing me out. Besides the radiation (obviously, being a daily event), my step-dad has been in the hospital for a couple weeks and just had surgery, my grandma just found out she has cancer, and my supervisor (the person who hired me and gave me all of the support I needed to switch jobs while undergoing treatment) just got laid off.

I've had an upset stomach off and on for a couple weeks and headaches with neck tension. Haven't had a headache in a really long time.

I'm hoping everything will be ok. I'm sending good vibes to my family and former boss. And, I'm back on the anti-nausea/anxiety pills to hopefully calm down my stomach.

Radiation totally sucks so far

2009-01-21T13:45:00.000-08:00

I had extra films done last week so I wouldn't have to have them done yesterday. Except, I had to have more films done yesterday. My case is "complicated." Between the deepness of the tumor cavity and the fact that they are also radiating above my collar bone is making for difficulty with the angles.

I finally got done at 5:00, got dressed and was trying to leave when one of the techs introduced me to one of the nurses. I told her it was nice to meet her but I had already met with another nurse last week and didn't think I needed to see her as well. She said that the doctor covering for my doctor (who is out this week) needed to see me after the films. I told her I didn't have time and had to leave, as my carpool is at 4:00. Luckily, I have an understanding sister. She glowered at me and tried to get me to stay, but I told her the doctor could see me another day and left.

I called this morning and left a message, apologizing for leaving and stating that I would be happy to see the doctor before my radiation appointment anytime the rest of this week. I didn't receive a call back by lunch-time, so I left another message reiterating the fact that I wasn't going to stay after my scheduled appointment, but if she wanted to see me today, I needed to know because I'm at work. Still no call back, so I guess they don't want me to see her today. whatever!

The only good thing that came out of it was that my appointment times got switched from 3:45 to 3:15. This means I won't have to come in early to try to get in before my appointment so I can pick up my sister at a reasonable time.

Today should be a better (and quicker) experience.

Progress

2009-01-15T08:31:00.000-08:00

I was taking a close-up look at my left eye in the mirror this morning when I saw them... two rows of tiny eyelashes springing up from the depths. I looked at my right eye. Yep.. eyelashes there too! I'm officially in a good mood today!

It's funny how perspective on life changes when one loses things like eyelashes.

My hair is also starting to spring back. It's currently in two stages, and I'm highly anticipating a third stage. First, there's the "chemo hair." That's the hair that continued to grow during chemotherapy. It's about an inch long, very thin and growing rather randomly on my head. Then there's the hair that has started to grow back since the end of chemo. It's buzz cut length, but also pretty thin. I'm waiting for all of my hair to start growing. I'm giving it until the two-month anniversary of the end of chemo and then I'll start freaking out if I don't see anything starting to grow.

Speaking of treatments, my third and hopefully final treatment starts on Tuesday. That's the radiation. I did the simulation on the CAT scan last week, where I was positioned, tattooed and had a "form" made for my head and upper arm. I go in today for another set of films and to talk to my radiation oncologist before starting actual radiation next week.

better

2009-01-08T14:22:00.000-08:00

I recently received an email from my cousin who was responding to a message I sent out to friends and family providing a treatment update.

She very simply said, “I hope you are better now.” I have been thinking about this since I received the e-mail, and I’m not sure I can even respond in a way that makes any sense.

I can no longer say, “oh yes, I am better.” Or, “no, I’m not better.” Or even, “I wish I was better.” It’s much more complicated than that. Being “better” depends on where I look back at various times over the past year. “Better” also has different components to it, the 3 main ones being, “better physically,” “better mentally,” and “better emotionally.” If I am “better” or “not better,” what part of “better” am I talking about? I will say that I am “better” in all 3 components than I was on November 28, my last day of chemo. But, am I “better” than I was in June before chemo started? Am I “better” than I was in May when I had surgery? Am I “better” than I was in March when I was diagnosed? It’s hard to say. Being diagnosed with cancer is a life-changing event for sure, and some of those changes include an intense period of growth that is still in process. All areas of my life are affected, from the emotional to the mental to the physical to the spiritual and to other parts that I can’t even recognize yet. These are things that probably wouldn’t have happened had I not been diagnosed with cancer. So, am I “better” now? Perhaps I can only apply “better” to how I am today as compared to yesterday. If that’s the case, then all I can say is, “I’m about the same.”

Happy New Year!

2009-01-05T11:31:00.000-08:00

Well, my break from SCCA is over, unfortunately. I had my port removed this past Friday, which is a huge relief!

I also started the radiation process today. I went in for the CT and simulation, where I was positioned and tattooed. I should be starting in about 2 weeks and will hopefully finish up the first week in March.

Happy New Year to everyone. My New Year's Eve was quiet.. I went to bed early and woke up in time to see the Space Needle light up. Happily the local fireworks did not upset my dog. She gave a little woof at the larger booms, an M80 I think. Otherwise, she and the kitties slept through it all.

Here are some pictures from the snow and from Christmas:

Cancer, Christmas and my Mental Health

2008-12-25T09:15:00.000-08:00

One thing I've discovered about being in active cancer treatment is that I am so involved in the treatment, and dealing with the side-effects that when other stressful situations occur, my frustration level almost immediately rises to red-hot. This happened over the summer when I had to deal with the plumbing issues and not being able to get a hold of the property manager. I also had a medical bill issue from February when I underwent the biopsy, and the billing department at the pathology lab were basically being idiots and I was biting my tongue trying not to tell them how I felt. Luckily I managed to survive both situations, but it was a lot of work and took up too much of my already low energy.

At present, I'm on a break from the SCCA and my biggest concern regarding my treatment is remembering to take my pills 3 times a day. No more skipping because I'm too tired at night, as there is medicine I'm taking that I can't just skip a day. So, when I was faced with a stressful and challenging situation, I handled it much better than I did the situations over the summer.

My very challenging and heart wrenching situation over the past several weeks has been the health of my 19-year-old cat, Kitten. It's a very difficult line between trying to keep her healthy and overdoing treatments that are going to impact her quality of life.

Over the past week or so, Kitten started getting weaker and weaker and was not very interested in eating or drinking. I think she was really having a hard time adjusting to losing 5 teeth, even though her mouth was completely healed. Finally, on Tuesday the 23rd. I called my vet at home. He is on vacation until January 6, but he gave me his home phone number in case I had concerns about Kitten. So, I called him and we met at his clinic. Kitten was dehydrated enough that she needed an IV. The vet also gave her several steriod shots to stimulate her appetite. I brought her home and gave her some food which she ate right away. I felt that she was going to be able to turn things around and would be stronger by the next day. However, as the day wore on, Kitten got weaker and weaker to the point that could no longer stand up. It's like her legs were boneless and she would just crumple when I tried to stand or sit her up. Since she was unable to use the litter box, I kept a puppy training pad under her. I was up all night making sure the pad was changed as needed and trying to feed her. I was still hopeful that the medicine would kick in and she would get better. But, at 4:00 am she had a seizure and afterwards I knew that she would not survive the day. I called the vet again and we said goodbye and now Miss Kitten is young and free and playing with Simon, who was always her best friend.

Out out damn port!

2008-12-23T09:58:00.000-08:00

I'll be getting my port removed on January 2. Bye, bye giant purple people eater!

Leave it to me to get all of the "rare" side-effects

2008-12-16T18:22:00.000-08:00

Ok.. tamoxifen. Can I just say muscle pain from head to toe? good times. Drugs are not really helping, although I'm not taking any narcotics. And, I don't want to. I can function, just really slowly and grimacing.

My doctor thinks the pain will diminish over time. We'll see. I hope so, because 5 years is a long time to live feeling like I've worked every muscle too hard in the gym.

Quick update

2008-12-12T21:41:00.000-08:00

Kitten came through her surgery with flying colors. She's a little more fragile than usual, but she's all about eating, so I think she'll be just fine.

Zusa has osteoarthritis in her hips. Not sure about her shoulder yet, but she's on anti-inflammatories and they are working well so far. Still waiting for that heated dog bed though. I Hope it comes tomorrow before the weather gets really cold.

In other news, I'm dealing with a lot of muscle pain all over my body. Not sure if it's the tamoxifen or what. Actually, I think it must be. I spoke with the SCCA pharmacist today who was no help at all. I'm so shocked.

I have a call into my primary care doctor about the lower leg edema. My left leg is more swollen than my right leg, although it doesn't hurt and isn't showing signs of a clot or infection. My oncologist doesn't really know anything about using diuretics, so I think that will be best managed with my doctor in Olympia.

I sent an email to my oncologist earlier this week because after doing some research about tamoxifen on the web, I discovered several studies that showed premenopausal women losing quite a bit of bone density on tamoxifen. Since I'm going to be on it for 5 years, I don't want to find out down the road that I have osteoporosis. I asked about getting a baseline bone density exam (DEXA scan) and a Vitamin D level, both of which she agreed to. It's weird though, that these things wouldn't be done automatically. Anyway, it just goes to show that you really do have to be your own advocate when it comes to health care. I can't imagine going through this without some knowledge of medicine. Even though I don't have an oncology background, I understand the basics. And, I work with a bunch of nurses, so that all helps :)

Some kind of normalcy

2008-12-09T07:57:00.000-08:00

It was very strange to look at my calendar for this week and see no medical appointments. Not one. Not only am I done at SCCA until January, I've also scaled back on physical therapy to every two or three weeks. It's a weird feeling when life has become one appointment to the next to suddenly not having any. I almost feel as though I've lost some part of my identity...I've gotten used to the attention. I think it must be a difficult switch from active treatment to follow up care. I'll find out this spring.

Yesterday the oncology nurse called me to talk about removing my port. She was giving me instructions, but then asked me if I was sure I wanted it removed. Uh, yeah. Why is this hard to understand? My oncologist told me I could keep it in for another year if I wanted. Why would I want to do that? Are they anticipating cancer coming back so quickly? Is there more chemotherapy in my future that I'm not aware of? Or, are they so used to little old ladies with horrible veins that they feel the need to try and talk all of their patients into keeping the port? Well, I'm having none of that. I want the thing out of my chest, for many reasons, including the fact that it represents 24 weeks of not-so-fun times that I just went through. So what if I might have to get an infusion every three months? Give me a damn IV. My veins are just fine.

I have decided against participating in the research study that I looked at last week. I want to get the Zoladex shot and don't want to take the chance that I might be randomized into an arm that doesn't include it. However, at this point I have to wait and see if my ovarian function resumes before they will start giving me the shot. That means getting my estrogen levels checked every couple of months and/or getting a period. I haven't had one since May and I certainly haven't missed it! One of the things that has to be watched carefully with the Zoladex is the potential of bone loss. There is another study that looks at three bisophosphonates which are drugs that help prevent bone loss. One of the drugs is Boniva and another is Zometa. Zometa is given via IV every month for 2 years, but still not worth keeping the port!

A week out from the last chemo infusion and I'm still feeling like I'm getting treatment. Last weekend was hard from the standpoint of not having any energy and still feeling very weak. I'm hoping by the end of the week to have a noticeable difference in my energy level. I'm also still dealing with constant eye watering, blood clots in my nose, and my nails are not done wreaking havoc on themselves. Also, my legs and ankles are still swollen from "capillary leakage." Gotta love that. I'm wearing my Crocs today because my ankles and the tops of my feet are too swollen for regular shoes.

So I've been getting to know my vet very well lately. Not only was Mea's eye injured by her sister.. she is all better after a few days of eye ointment (fun!), but Kitten is going in tomorrow for surgery. She has a skin cancer on her neck and an abscessed tooth. Those will both be removed and she'll get a dental cleaning as well. Kitten is 19 this month, but she is healthy. Her heart and lungs are strong and she's not suffering from kidney disease like a lot of old kitties. I'm pretty pragmatic when it comes to what I'm willing to do to prolong the life of an older cat. I wouldn't do something major that would impact the quality of her life in order to eke out another year or two. But, if by doing this surgery her quality of life gets better and we don't have to do anything else, then I'm all for it. I am also taking Zusa in tomorrow when I drop Kitten off. Over the weekend she started limping when she got up from lying down. Her left shoulder seems very stiff and I think she needs some anti-inflammatories. I suppose I should mention that Kira is just fine and doesn't need to go to the vet at all :)

I have completed 99% of my Christmas shopping. I haven't got anything for my Dad yet. I did all of my shopping online this year which made it easy. Over the weekend I also got everything wrapped. I guess I got tired of the boxes all piled up in the living room. Of course, now there are gift bags, but at least it's done.

I have also done a lot of shopping for me recently. All of this weight loss has been great, but I have no clothes that fit. I've been pretty successful shopping online for clothes. Only one or two things haven't worked out.

I have to say though that the amount on my credit card is quite scary. I have been putting off looking at it, but I finally did yesterday. The nice thing is that I have a sweet check coming from Aflac this week and I will be able to pay it all off.

Phase 3

2008-12-05T11:36:00.000-08:00

I met with my oncologist today for a check-up and to discuss the next step in the regimen. She talked to me about tamoxifin and all of the risks and benefits of taking it. We talked about whether it would be beneficial to stop estrogen production all together for the next 5 years. The research has shown that young women with aggressive breast cancer (that's me) have less likely recurrence of cancer than taking tamoxifin alone. Her recommendation is that I get this shot for the next 5 years.

There is an ongoing research study that compares tamoxifin to tamoxifin plus a shot to stop estrogen production. The study is randomized though, so I have chance of ending up in the tamoxifin only group. The research coordinator is going to email me the protocol and consent form so I can review them, but I'm not sure I want to risk being put in that group. There's nothing wrong with taking tamoxifin by itself, it is considered the "gold standard" of care, but I sure as hell don't want to go through this crap again and I'm willing to do what I can to avoid recurrence.

I'm so glad that I don't have to go back to SCCA until January!

Oh, and I have to share.. I just recieved these scarves that I ordered as an end of chemo present to myself. So pretty!

Weeks 23 and 24

2008-12-04T14:03:00.000-08:00

Well, I can't believe it.. I'm done with chemo! I'm very happy about that. Things were getting to the point where I was getting so burned out on going to SCCA every week that I was ready to snap someone's head off.

During the second to last week, I was having a lot of frustration and anger towards my oncologist and case manager. Instead of letting the anger go so I could approach my issues more rationally, I was feeling very emotional about them. Because of this, I met with the chaplain and told her what my issues were and that I just needed to let them go and get back to Center. She was really wonderful in helping me do just that. Now I feel like I can approach my oncologist about my biggest concern (not diagnosing a potentially serious side-effect at my follow-up visit and that the case manager is not tracking these trends) calmly and without being accusatory. I realize they are short-staffed in this area, but that is not an excuse for letting patient safety issues slide.

All of this is part of the reason why I refuse to go back to SCCA for the rest of the month after tomorrow's follow-up appointment.

On my last day, which was last Friday, I was fasting before my labs were drawn and I had forgotton that I wasn't coming in at 7:00, but at 11:30!! I got in early and then had a nice lunch at the little cafe. I have to say, they make a super yummy mushroom/cheese/potato soup. In celebration, I wore my "Hey Cancer!" t-shirt, which didn't make it easy for the lab tech, but I really didn't care!! At the end of my treatment, 5 or 6 of the nurses and tech staff came in and put on funny glasses and sang a funny song all while blowing bubbles. They took a picture of me and Jane, which is hilarious because the bubbles are going everywhere.

One of the questions that I need to bring up on Friday with my oncologist is when the port will be removed. I find it odd that no one has mentioned removing it (another little bit of frustration) and I have a feeling that if I don't mention it, she won't either. I might not say anything and just see what happens. I can always "suddenly remember" in an email to her later. One thing is for sure.. I'm not doing anything about it until January!

I met with the radiation oncologist Monday to start that process. They wanted me to come in tomorrow to do a simulation under CT, but I've put that off until January as well. That's mostly for insurance reasons.. I want to be sure I use up all of my out-of-pocket co-insurance for next year. A two-week delay in treatment isn't going to matter in the grand scheme of things. The daily grind of radiation is sort of looming over me like a black cloud.. that is going to be hard for me. But the radiation tunnel is much shorter than the chemo tunnel, even if there are more treatments.

On Thanksgiving my brother and I posed as twins for pictures. Ha!

Week 22

2008-11-18T11:01:00.000-08:00

Almost at the end! I can't believe it. The past 6 months have gone so fast, yet so incredibly slow at the same time.

The good news is that my hematocrit went up 4 points to 32% after taking last week off. I was able actually walk and breathe at the same time last week. It was amazing to feel good (at least in that respect).

I didn't get much of a dose reduction.. only 10%. They did some weird reduction in the numbers they use to calculate the dosage, so it might actually be more than 10%, but looking at the actual dosage difference, it's only 10%. I have to say that I don't think that's going to do much as far as alleviating some of my worst symptoms (anemia, neuropathy). Already I'm feeling more short of breath when walking short distances.

The newest issue is "capillary leakage." I've gained 12 pounds in excess fluid in my lower legs and ankles. I was put on a diuretic Friday, which is certainly making me pee more.

Ok, so anemia, neuropathy and now edema. Good times. Not to mention the constant eye watering and the nail issue. Speaking of which, I had to cut off another nail on one of my toes over the weekend.

I have to say, I'm getting a little annoyed with my oncology team. First of all, my oncologist has never talked to me about this 30 pound weight loss and then sudden 10 pound weight gain. I mean, shouldn't she have checked out my legs at my last appointment on 10/31? It was the infusion nurse who took the time to ask me questions about my water intake, how much I was peeing, whether my ankles were swollen, etc. She diagnosed the issue and then called my oncology nurse to say that I needed a diuretic.

When my oncology nurse called me later in the day to discuss the diuretic, I asked her if I needed to stop taking any of my other medications. She admitted that they aren't really very good at medication managment and told me to contact my family doctor about it. No one has told me how often I will need to come in for blood tests after the chemo is finished. I am on a very low dose of this medication and it's going to take awhile for all of the fluid to go away. This medicaiton tends to remove potassium and that has to be checked regularly. My family doctor also said my blood sugar has to be monitored regularly as well.

What's more, when I asked the oncology nurse who would be handling the long term management of the medication I'm taking for hot flashes, she said they should go away after chemo. Really? That's funny because my oncologist told me that taking the tamoxifan (which I will be doing for 5 years) will put me into menopause. Furthermore, I was already experiencing peri-menopause symptoms for 2 years before I was diagnosed, including hot flashes. I can no longer take the supplements I was using for them because they contain plant-based estrogens and the just isn't enough research to show whether or not they could contribute to a recurrence they way taking hormone pills would. So, I'm stuck taking a nerve medicine that for some reason reduces hot flashes as well.

It's all very frustrating, and I'm going to have a lot to talk about with my oncologist at my next visit!

Week 21

2008-11-10T09:41:00.000-08:00

No chemo this week!

It's really hard to say if taking a week off has made an improvement in how I feel. Working a full week has taken its own toll, so I think it's pretty much a wash. By Friday night, I was wiped out and fell asleep on the couch while trying to watch last week's CSI on the DVR. On Saturday I had an eye appointment in Olympia that I was dreading.. not because of the appointment, but I was so weak and wobbly that I wasn't sure I would even make it. I was in bed by 7:00 and even forgot to feed the dog her dinner :(

I felt much more recovered on Sunday. My mom came over and did some cleaning and laundry and my sister picked up some things at the store for me.

I've noticed more intense tingling in the tips of my fingers on both hands. I had a hard time putting in my earrings this morning. This could be a deal-breaker as far as chemo this week. We'll see.

I have tomorrow off, so hopefully I won't be as wiped out this week as I was last week.

Mmmm.. Gummi Bears

2008-11-06T10:23:00.000-08:00

I wandered to the dental office across the hall from my office this morning to get some ideas of how to deal with my swelling gums and bleeding when I brush my teeth. It turned into an exam, a new dentist and some dental products that should help and give me some relief.

My breathing feels a little better today.. I guess that makes sense - it's Thursday. I feel better just in time for another round of chemo. I'm glad I made the decision to not get chemo this week and hopefully I can build up some strength to get me through the final 3 weeks.

I realized last night that I will have to do all of my Christmas shopping online this year. I'm not going to trust that my red blood cells will miraculously multiply as soon as I'm done with chemo and give me enough energy and strength for that kind of shopping. I've put out requests for Christmas lists to my family so I can get started.

Some people have mentioned that I should have a "no more chemo" party when I'm done with chemo. I think I'm going to wait until I'm done with all my treatments and have a "no more treatment" party instead. Or maybe it will be an "I'm in remission" party. Either way, waiting until next spring makes more sense to me. I can't fathom having a party right now, and with it being holiday season.. it's just too much!

A change in the plan

2008-11-05T12:13:00.000-08:00

I had a very bad night earlier this week when my cat decided to bolt from the living room to the bedroom and used my sore and explosed toe as part of her pathway. It was the last straw in a day where I was really struggling to breathe and just do the things I needed to do. And trust me, I don't do more than what I absolutely have to!

I had a good cry and then felt better, but was still upset enough to want to call off chemo all together, and would of if it hadn't been so late in the day.

The next day I called the research coordinator and told her that I needed a break this week from chemo, AND that I wanted a dose-reduction for the final 3 weeks. Hopefully this plan will negate the need for another blood transfusion.

Yesterday I used the Dial-A-Ride system here for the first time. It worked out really well, even though I had to cross the street (on a pedestrian bridge over the street) to the Health Sciences building for a class.

Now that I have the disability placard for my car, I've been driving to work every day. It's so much easier on me physically than taking the bus. I'm able to park in one of the handicapped spaces in my building. And since my sister is back at work (reluctantly) after her maternity leave, we are carpooling again, so that makes driving even easier.

Good news regarding my toe and thumb.. they have finally healed on the surface and I don't have to wear the bandaids anymore.

Week 20

2008-11-03T13:43:00.000-08:00

My hct keeps going down. It was 28 on Friday. I saw my oncologist on Friday and there was lots of talk about dose-reduction, or skipping a dose. Ultimately, it was decided to give me the regular dose per the study protocol. Since the darbopoetin shot does not seem to be doing any good, they increased that dose by 25%. That is a very painful shot!

I am really feeling the effects of the anemia now. It was a hard weekend, but again, my sister pulled through and did a bunch of shopping for me. I've been talking with my oncology nurse about skipping this week's chemo... I know my hct is just going to keep dropping. I am skeptical that skipping a dose and doing a dose reduction will make much of a difference in the grand scheme of my anemia, since it takes so long for red blood cells to reproduce. My nurse told me that "it usually has a profound effect." However, I have bucked all the "usuals" with Abraxane. I feel like I am suffering more now than I did over the summer. Although, my doctor is pretty adament that the anemia itself is a result of the previous chemo. The fact that I'm still getting chemo, certainly isn't helping things. I have a call into the research coordinator to disuss this dose-reduction further. My doctor did say that she would prefer to go this route than do another transfusion. I don't really care, as long as it works!

After the chemo infusion on Friday, I went to Ballard to the auto licensing place and got a temporary disability parking placard. I've also been in contact with the disability services office at the UW about using the Dial-A-Ride service to get to the hospital instead of taking the shuttle. Dial-A-Ride will pick me up right outside my building and I don't have to walk those 3 blocks to the shuttle stop.

There is a possibility that Aflac is not going to pay me for this round of chemo. My policy states that they will pay for each chemo treatment that has a cost associated with it. SCCA is getting my chemo at no charge because it's a research study. However, there is still a cost associated with getting the chemo into me.. the infusion, etc. So hopefully that will work out. There is also a provision for investigational treatments, although I'm not sure this falls under that guideline. I just have to submit everything and then see what happens and take it from there.

Week 19

2008-10-26T13:47:00.000-07:00

Baby Ben came over today with his mom and grandma to do some housework for me. Dishes, vacuuming, laundry and dusting got done today. I really need to think of something nice for my sister when this is all over because she is just awesome.

This has been another really hard week with side-effects. My hands and feet are becoming neuropathic and it's difficult to write and do anything that requires fine motor skills. My eyes are watering constantly and the skin under my right eye is getting irritated. The big issue though is this weakness I've been experiencing since about mid-week. My shortness of breath is better only because I am now forced to move extremely slow. My knees feel like they are going to give out on me and my thighs and arms just feel like jello.

I'm not sure what I am going to do about work. I mean, I can work, but getting there is an issue. Unfortunately it's not work I can do at home. I just need to decide if I'm going to take the bus or drive. Tomorrow I'm going to ask my doctor about getting a temporary handicapped parking placard. I probably should have done this a few weeks ago, since the state is slow about these things, but I wasn't expecting this weakness and I figured the anemia was going to get better after the transfusion. Speaking of which, my hematocrit dropped another point this week to 29.

On Friday while I was in infusion, the oncology PA came down to look at my nails. She was going to cut back my right thumb nail, but instead of lifting it off the nail bed, she just tried to jump right in, which of course hurt. Later, at work, I managed to get most of the nail off with my little clippers. There was a little bit of pus in the nail bed, so I've been putting silver gel on it with a bandaid and it's healing nicely. Both the PA and my infusion nurse suggested I get some extra sleep this weekend, so I did take some ambien Friday night and slept almost 12 hours and after I was up for a couple hours, took another 4 hour nap. It was a bit harder to get to sleep last night, but I did manage about 9 1/2 hours. I'm pretty wiped out for the little bit of housework I've done today and will most likely nap after (or during) the Seahawks game. Go Seahawks!! (please win!)

Here's another picture of Ben.. He's just so freakin' cute and he's seriously stylin' today!

Kindness

2008-10-22T12:29:00.000-07:00

I found out today that several people in the department I'm working in have inquired about donating shared leave to me. This is such a nice gesture and completely unexpected. I can't seem to build up any leave at the moment...I'm always using it up and at times have to take leave without pay.

Week 18

2008-10-21T18:22:00.000-07:00

My hematocrit keeps climbing, but I've yet to feel the effects. I'm still huffing and puffing my way through the day. My supervisor at the medical center found me some office space to work from when I need to, so I can just take the bus directly there and I don't have to worry about the shuttle. What I didn't take into account is that the street level is below the hospital entrance, so I have to do a bit of climbing. Yesterday I went up the stairs kind of fast because it was raining. When I got to the top, I had to sit down for about 5 minutes to get my breath back. By the time I got to the office area, I would get out of breath just walking across the office. I ended up going home at 12:30 and spending the rest of the day napping an in bed with my new humidifier on.

It probably didn't help that on Saturday, I attempted shopping. It did not go well. By the time I was at the checkout, it was hard to stand up. Thankfully my sister was with me and she carried all my groceries and even put the cold stuff in the fridge.

On Sunday I managed to accomplish something that has needed to be done for awhile, but I probably should not have done it alone.. that was to turn my mattress and change the sheets on the bed. I also had to "de-hair" my comforter, for all the good it did me:

It's great to have clean sheets, but I really paid for it on Monday and even today a little bit.

Besides my almost constant out-of-breath state, there are other annoying things going on:

I'm definitely starting to feel the numbness in my hands. It's very difficult for me to write. They hurt and feel tight and weird. I'm already on gabapentin for hot flashes and my guess is that after I talk to my doctor, I'll be seriously increasing the dosage.

It's very sad that when I blow my nose, I don't even notice anymore that it's all basically blood clots. My mucous membranes are so dry in my mouth and nose! My expensive ultrasonic humidifier with a silver strip to keep the bacteria at bay arrived on Friday and I think it's starting to help a little at night.. I'm not so stuffed up.

My fingernails. Probably the grossest thing so far... both my thumb nails are thoroughly discolored and now have fluid between the nail and the nailbed. They are smelly and gross. I have to soak them in this astringent mix a couple times a day. The nail on my right thumb is loose all the way to the quick (eewww) and on Friday, someone is going to cut it all the way back (yikes!). Today I cut it about halfway up, just to where the nailbed starts getting raw. I have to wear a band-aid all the time so it doesn't catch on anything. Plus, they hurt because the nails are flattening out. My other fingernails are in various stages, but aren't even close to as bad as my thumb nails. My toenails are starting to hurt, and I'm sure I'll be going through this with my feet soon. Hooray.

I'm 3/4 of the way through. 6 more weeks. I can hardly stand it.

Oh, the Weakness

2008-10-15T12:22:00.000-07:00

As part of my job, I have to go over to the UW Medical Center to audit research regulatory and subject binders. Although there is a very good system for getting there (a free shuttle 3 blocks away), I have been dreading the trip for the past couple weeks because the anemia makes it hard to walk very far. In addition to getting to the shuttle, it's a bit of a walk to the department I have to go to. Yesterday, I made the trip for the first time since I've been back to work. I was doing pretty good after I got to the department.. the research coordinator had all of the binders spread out in the conference room, so I didn't have to do too much lifting and carrying. However, after a couple hours, we had to vacate the conference room and I moved to a desk. This meant that every time I needed a different binder I had to go get it and lug it back. These are not small binders... many of them are 6" wide. After I was done, I had to walk back to the shuttle and by the time I got off the bus, the 2 blocks that were on a slight incline seemed like a steep hill. It was a long, slow, painful process and I still haven't fully recovered. My sister, bless her, got me dinner last night. I wasn't sure what the morning would bring, and although I was tired, I felt ok. I was supposed to go back to the medical center today, but my legs feel so weak when I get up to walk, that I've decided to wait until tomorrow. I have to be over there tomorrow anyway for my genetic counseling appointment.

In other news, my thumbnails are starting to get fluid under them and they are loosening up. I've also got some mild neuropathy in my hands. Hooray for the weird chemo side-effects.

Week 16

2008-10-07T11:35:00.000-07:00

Well this has not been the best time. I had a horrible weekend, unable to get up off the couch or out of bed without being seriously short of breath. My hct on Friday was 26. They ran some tests to make sure I don't have any clots, which I don't, so all my symptoms are from the anemia. My doctor called me at 4:30 on Friday to say I could get a blood transfusion if I wanted to.

I went in yesterday for the transfusion. 2 units took 4 1/2 hours to infuse, so it was a long day. Today I feel about 50% better than yesterday. My doctor says the anemia is a side-effect from the AC and it's just going to take time for my red blood cells to re-build themselves. The Abraxane (that I'm on now) isn't shown to cause anemia the way the Adriamycin does. Hopefully this transfusion will give my cells a little jump start to get busy!

I was going to go into work today, but I'm pretty dizzy and shaky... my body is getting used to all that extra fluid. Hopefully I'll be able to get back to work tomorrow. In the meantime I'm drinking electrolyte water and eating protein and hoping this shakiness goes away.

Week 15

2008-09-29T09:02:00.001-07:00

Last week was quite difficult, dealing with the effects of anemia. It's been very difficult to change how I do things in order to accomodate a lowered amount of oxygen in my body. I kept having to tell myself, "slow down, walk slower" which was a huge pain! At the parking garage where I park to catch the bus, I had to take the elevator DOWN. All these little things that you don't think about until you are forced to.

My labs on Friday still show my red blood cell levels dropping, with a hct of 27 and hgb of 9.2. If my hct gets to 25 we start talking blood transfusion. I'm confident, though, that my levels will be up this week. Today is the 10th day since I got the shot of darbo to increase my red blood cell production. Since red blood cells take 10 days to die and regenerate, I should start feeling better this week. I really hit a low point on Saturday though. I was very short of breath and quite dizzy when standing. It was hard to catch my breath even when sitting or lying down. By Sunday I was feeling better and today is even better than yesterday. This morning I had to get off the bus a block early due to a car accident and I managed to walk at a fairly normal pace to the cash machine and the coffee shop before going into my building, probably about 3 1/2 blocks all together, without getting too winded.

On Saturday I was supposed to go to Kitchen 2 Kitchen to make meals with my friend, but there was no way I could make it. She managed to do all of my meals as well as hers with the help of another friend and the owner, for which I am extremely grateful. I've been eating frozen dinners because I don't have the energy to cook, so this will be much healthier and better tasting! After the meals were dropped off, my step-mom came over and vacuumed for me and my sister did poop patrol in my yard. My brother-in-law even brought me some chicken pad thai for dinner. Despite the bad day I was having, it was wonderful to have a lot of help.

On Sunday my step-mom and dad came over and did some more cleaning and poop patrol (they brought their dog) and generally just hung out. It was nice to have them over and just have some company for awhile.

Today I'm back at work and feeling much better. I was going to talk to my boss about working 3 days this week and doing some work from home, but now I'm not sure I will need to. I think I'll bring it up as an "as-needed" thing, just in case my bubble bursts tomorrow.

When I walked past this car accident this morning, there was a mini-van on it's side. I have to wonder, how does this happen on a city street? I can understand it on the freeway or a rural road, but on a city street? I don't get it. Maybe it was t-boned, but it wasn't in the middle of the intersection. Weird.

Week 14

2008-09-24T10:10:00.000-07:00

This is my 2nd dose of Abraxane. My labs show that I am anemic.. my hematocrit is 29 and hemoglobin is 9.7, so I got a shot of darbypoetin to boost red blood cell production. It takes awhile though... a couple weeks. In the meantime, I have all the wonderful symptoms of anemia: shortness of breath, rapid heart rate, dizziness and of course, fatigue. My iron levels are fine though, and as of now I don't need anymore iron sucrose.

I've also noticed that with the Abraxane, I don't have a huge appetite. Normally this wouldn't bother me, but with the anemia it's important that I eat, so I end up forcing myself to eat sometimes, which is no fun!

I took a couple pictures on Friday, one of my IV bag and one of me getting the juice:

Back to work and a night in hell

2008-09-15T11:29:00.000-07:00

So far I have completed one dose of the Abraxane. I was doing very well until last night when I started getting severe muscle pains in my feet and legs. Add that to the 3-hour hot flash I went through and kitty antics that involved puking 3 times and knocking over a vase, well I just didn't get much sleep last night. Oh, and today is my first day back at work!

Yeah. It's going great.

Since I wasn't sure about the pain, I ended up taking a pain pill, a muscle relaxer and some Aleve, just to cover all of my bases. I had an email conversation with my oncology nurse this morning who explained that muscle and joint pain is a side-effect of Abraxane and to take 2 Aleve twice a day. She also said that the pain should diminish over time as I get more of the Abraxane. That doesn't quite make sense to me, but I sure hope she's right! This weird stabbing pain in various places of my body all day long is driving me a little bit crazy. The Aleve isn't taking the pain away completely, but it is damping it down a bit.

Other than that, I'm doing pretty good. I'm so glad to be done with the Adriamycin! Now that I've gone more than a week without it, I have noticed some of the side-effects are fading away. My biggest issue today is trying to stay awake after my crazy night.

I'm half-way there!

2008-09-06T08:38:00.000-07:00

I finished up my last dose of AC on Friday. YAY! I felt so good and energized yesterday after my appointment. My best friend and I even went out to dinner to celebrate.

This morning when I got my pills out, I almost cried. No more chemo pills! WOW.. it's hard to put into words what that feels like. Every morning I stared down at those 3 blue pills, not wanting to put them in my mouth and swallow them. Today, there are no blue pills! My energy level just spiked at that :)

Next Friday I start Abraxane, which is much easier on the body than the AC. I also go back to work a week from Monday. In order to get ready, I'm going to spend next week pretending I'm going to work. My plan is to shower every night and get up at my normal work time and get "ready" every morning. I also plan to leave the house every day and not take any naps. My sister and I are going to start walking every day too. Hopefully, by the time the 15th rolls and I put in a full work week, I won't be too drained and exhausted.

Week 10

2008-08-23T09:30:00.000-07:00

Well, I'm a little behind in my blogging. Actually, I haven't had much to say. Since I stopped working, my life has been sleeping and watching TV. Not very exciting. A few bad days here and there, with nausea (but no vomiting). Mostly, just fatigue and very low energy. Also, I have been isolating a bit, not wanting to talk much just generally not wanting to be the person with cancer, going through chemo. I'm sure some of you know what I'm talking about.

I've been getting acupuncture on a weekly basis, which has helped a little with the fatigue, but mostly with the accompanying "fogginess." Weekly massage therapy is really helping with all of the aches and pains from all of the sleeping.

I'm almost done with the AC, only 2 more treatments to go. That also means I go back to work soon. As I recall, I had 2 goals, well 3 really while I was off work: clean out the garage, unpack the 2nd bedroom and catch up on some work that I owe my boss so that I go back to work without owing any hours. So far I've done is the garage. I've done a little bit of work, but I don't know that I will get it all made up before September 15 (return to work day) and I haven't touched the 2nd bedroom, but it's on my list for today.

What really prompted me to work on the garage was that I got a dog this past week. I found her at the humane society and she is very sweet. Her name is Zusa and she's an 8 year old golden retriever mix.

That's it for now. I hope you all are hanging in there.

Today's craziness

2008-07-19T16:27:00.000-07:00

I managed to transplant a couple sunflowers and harvest some raspberries and peas this afternoon.

In addition, the plumbers are here to fix my broken sewer line.

This will be a very loud afternoon for sure. I hope they get it fixed today!

A major decision

2008-07-19T08:48:00.001-07:00

After staying home 4 our of 5 days this past week with vomiting, diarrhea and low level nausea, I have made the decision to go on medical disability leave for 8 weeks until I'm done with the AC.

I've completed 5 treatments now, with 7 more to go and the side-effects are only going to get worse. My boss is very accommodating and understanding and she was in complete agreement. Plus, she doesn't have to pay me. LOL. Seriously though, I just started this job in March and I've used almost every hour of leave I have. In order to keep my medical and other benefits, I have to either work 8 hours or use 8 hours of leave time in a month. This will only affect August and I will have enough leave that I earned in July.

As far as money, I am incredibly grateful that I got the Aflac cancer policy last year. Not only has it helped by paying me for various treatments I've received, I also signed up for short-term disability. The only unfortunate thing is that I did not change my income level with Aflac when I changed jobs, so the amount I get is a little low. But, between that and the payments I receive for going through chemo and other things, I will get enough to cover what my paychecks would be.

In other news, my friend came over last night and shaved me head completely bald! No pictures yet though.

Oh, and in other OTHER news, there is a break in the sewer line leading from my house to the street so I am without a bathroom until they get the damn thing fixed! Argh!!

Baby Ben!

2008-07-16T01:00:00.001-07:00

Benjamin was born via c-section 7/15/08 at 11:03 pm. He weighs in at 10 pounds, 8 ounces! Mom and baby are both healthy and happy and very tired.

well that sucked

2008-07-15T09:02:00.000-07:00

Spending the morning puking up breakfast is no fun. My body was not happy with the juice I made and yesterday I suffered for it. I was feeling pretty miserable even after I was done throwing up, but I had a doctor's appointment in Olympia and was determined to keep it. I actually felt worse in terms of nausea at the end of the day and never felt like my stomach completely emptied out. This morning, I'm better and just trying to take it easy. I wasn't sure earlier when my alarm went off at 5:00 that I was going to make it to work. But, I've called my boss and said I'd be in by noon.

I put on a scarf to go to my appointment. It just feels so funny.. I can't tell if it's going to fall off or what. I took it off at the end of my appointment to show my doctor how I looked with a shaved head. She recommended leaving it off and I agreed. At least for the rest of the day. I don't know that I will go to work without something on my head. The buff I wore on Saturday worked pretty well.. maybe one of those. Plus, the thought of being on the bus and putting my bare head against the seat is super disgusting. And I know it will happen because I always sleep on the bus.

Today I'm driving for 2 reasons.. the bus stops running at 9:30 and my sister is due to go into labor any second now. She spent the night in the hospital and they've started inducing her. I need to be able to leave when she's closer to giving birth.

Yesterday morning before I drank the juice and all the puking started, I heard Mea rearranging the runner in the hallway. She was very, very proud of her handiwork:

A long day

2008-07-13T16:58:00.001-07:00

Yesterday was great. A lot of fun and a fabulous way to spend a hot day. First, Libbey, Jess and I headed to the Olympia Farmer's Market because my parents (my dad and step-mom; Libbey's dad and mom) were playing at the market. Also, I wanted to do buy some yummy organic veggies and fruits. We got there around 1:00. I went off to do my shopping and what was so cool was that at almost every place I stopped, the person selling told me how much they loved my t-shirt. Now, this is the day after I got my head shaved, and my first "bald adventure." I wasn't nervous, but I was brimming with attitude! Anyway, it was very cool to have all these people tell me they liked my t-shirt. One person asked where I was getting treated, which was fine. I was in a good mood when I went back to the tables and sat down in the shade. I was sitting there and people just kept coming up to me, telling me how much they liked my shirt and to keep up the good attitude. One woman even gave me a hug! Another woman wrote down the website so she can buy a shirt for her friend. I'm not used to being the person standing out in the crowd, and I don't usually like it. But yesterday, it was ok and I had a good time.

After my parents were done, we headed to their place in Shelton so we could go out on the boat. What a great day it was for being on the water! Of course, I had to stay in the shade and didn't do more than wade on the beach, but it was really lovely.

We didn't get home until 9:00 or so and I was just exhausted. I've been in bed all day pretty much and am just getting up to take some pills and catch up online. It was worth it though!

Feeling good today!

2008-07-12T09:32:00.001-07:00

It is done

2008-07-11T21:24:00.000-07:00

My stylist called to re-schedule my appointment for tomorrow. Since I can pull out handfuls of hair now, I just canceled. My sister has a trimmer and she came over tonight to do the deed...

The Beginning...

In-Process...

Circa 1983...

Fini!

The Pile...

Getting on the cancer train

2008-07-11T08:05:00.001-07:00

Sometimes when I am at SCCA I can feel people looking at me as though I'm being assessed. Wondering, perhaps, why I am there? After all, I am neither "young" or "old;" I appear healthy and I have my hair (well for today anyway). Maybe they are thinking I am with someone... always waiting for them. But then I get called back. Yes! I really am the patient.

I walk out of the lab with a big bandage on my chest, declaring, "yes! I have a port and I'm getting an infusion!" I realize that having cancer puts me in the cancer club, but sometimes I feel like I'm looking through the window of the train car and not being invited in. Maybe when I show up next week with a scarf on my head, I'll be on that train too.

This whole "cancer thing" seems so surreal sometimes. It's not really my style, to be the center of so much attention. That's something I usually avoid. When I got married, we went to the courthouse. No walking down an aisle with everybody staring at me. No thanks. When I got divorced, we did it through the mail. No court appearances, no talking to a judge. None of that. It took me 8 months to have a reception. Well part of that was the weather, but it's just not my thing. I like being in the background, greasing the wheels, running the operation for others. Making things happen behind the scenes and never having my name come up. But now, now it's the opposite. I'm poked and prodded and the object of extremely focused attention by nurses and doctors and techs. I still somehow feel that if I just stopped everything that no one would notice.. I could slip back into the oblivion of my life. It's tempting to try it.. just to see.

Maybe I don't want to get on the train after all. I'll just sit here with my headphones on and my face in a book, trying to blend into the surroundings.

It's time to shave my head!

2008-07-10T09:51:00.000-07:00

I have an appointment scheduled on Saturday to get my head shaved. It's none too soon, since today I have started to "shed." No clumps yet, just hair coming out very easily whenever I touch it.

I'm kind of looking forward to getting it done and over with. If ever there was a time to get your head shaved, the middle of summer would be it.

The down side is that it's screaming to the world, "Hey! I have cancer and I'm going through chemo!" I realize there are other reasons that women are bald, but I'm pretty sure the first thing that pops into people's head is "CANCER." So, taking the bus to work should be interesting to say the least. Now I'm going to be the one that people covertly stare at.

It's all right though. It really is. I've got other things on my mind and I have stopped worrying about what people think about me. After all, what you think of me is none of my business!

And so it begins..

2008-07-08T09:15:00.000-07:00

Well, the side-effects are here, I think. This weekend I had really bad heartburn. It's still not completely under control. I'm taking Zantac twice a day, but I can't say that it's actually helping. I've been using some Mylanta as well. It works sometimes, but not always.

I have this feeling in my throat like it is blocked a little bit, or that there is something stuck. I have to be sure I chew my food really good, take small, small bites and chase everything with water. When I take my pills, I can only take 1 or 2 big ones at a time. I'm used to downing them in 2 handfuls. Last night and this morning, it took about 10 minutes to take them.

This morning, about 20 minutes before I was due to leave for work I had diarrhea. It came on so suddenly and unexpectedly that I decided not to chance going to work on the bus and I called in sick. Since then I've had two more "attacks," if you will. Can I just say this? My butt hurts.

My mouth is getting really sensitive. I switched from my electric toothbrush to a really soft one, but my gums still bled this morning.

Last night for dinner I had cottage cheese and tapioca pudding. Yeah. Today doesn't seem to be shaping up much better. I see applesauce and broth in my future. I may make up some gatorade-equivalent in a bit if the diarrhea keeps up.

In other news, even though a plumber came out yesterday, the problem still isn't fixed! This morning I flushed the toilet, ran water in the sink and then took a shower. About 3/4 of the way through my shower, the tub started backing up and I had about 2" of standing water. I could hear air bubbles coming up through the toilet. It took about 10 minutes for the water to drain. Hmmm... I see a potential disaster coming on.

I have calls into my oncology nurse, the property manager and the plumbing company that was here yesterday. I really hope they all call back!

Release

2008-07-06T11:26:00.001-07:00

I posted this on my other blog a couple weeks ago, but I wanted to add it to the "cancer journey" blog as well. I've come to realize that forgiveness is a beautiful thing and once that weight is lifted, healing is so much easier.

Most of that weight was my ex-husband and the fact that I still had unresolved emotions surrounding that entire relationship. However, when I came home on Thursday after having the port placed and my first chemo infusion, I was thinking to myself that I should email him and tell him what has been going on with me. But, because I had been under conscious sedation earlier in the day, I decided I should wait until Friday to make sure that it was something that I really wanted to do and not just an impulsive thing.

I have reached the point where I have forgiven David, and all the people in my past, really. There is just no way to go through this process successfully if I am still hanging onto anger or resentment for the past. It's taken a long time to come to this realization, but there it is, and I am glad for it.

So, back to David. It was kind of funny because on Friday I had decided that I was going to email him at some point during the day when guess what happened? I got a message from him. He had seen my Myspace page where there is not a lot of information on it, but enough to know that I have cancer. Now that I've had a couple email conversations with him, I just feel really good. For the first time in months, or even a year, I want to do something that doesn't involve watching tv all day, or escaping from life in some other fashion. I want to work in my garden and do some cooking , or whatever.

I definitely feel like all of the things I've gone through in life have been preparing me for this next challenge. I mean, that's obvious, right? As humans, we go through some shit, we learn, we move on and hopefully we apply what we have learned to the next thing. But, the last few years for me have been very strange and difficult and I really didn't know why. I was hoping that it would lead to some magical release and my life would be smooth sailing from then on out. Wishful thinking, I know.

All along, the Universe has been putting me in situations where I could forgive, but I was never able to. Call it pride, or not learning lessons from a past life.. whatever it was, I wasn't going there. So, it's taken cancer to put me in a position to see all that was in my past and to realize that it just doesn't fucking matter. I've learned from those experiences and I'm moving forward. And, I'm taking all that I've learned and applying it to my current situation. If what I've gone through in the past is what I've needed to fight in the present, then how can I be resentful of any of it?

Garden update

2008-07-06T11:19:00.001-07:00

I have been so behind in my garden pictures. Here's how the garden looks today:

The rope is thinner than it appears

2008-07-06T09:43:00.000-07:00

To all outward appearances, I am doing very well. Even I think I'm doing very well.. coping with everything. But, I've come to realize that if my world starts to fall apart at all, my composure crumbles a bit.

Take this weekend's plumbing incident. I had an overflowing toilet and a backed up shower and I haven't been able to get a hold of the property management people. Now, I was told that if there was an emergency after hours to just call someone and I'll get reimbursed. I hope that's the case because the plumbers are here now.

I was very frustrated yesterday because I didn't know what to do and I couldn't get a hold of anyone who could help me. When I called a plumber, I was told that they would not be able to come out until they reached the property manager. Since all my calls were going straight to voice-mail, I knew they wouldn't be getting through either. This prompted me to leave a not-so-nice message on the property manager's voice-mail telling him that this was bullshit and I was practically in tears.

Not knowing what else to do, I went over to my friend's house for a BBQ and tried to forget about it for awhile. My sister called and told me that she had the same problem in a house she was renting and they were able to get Roto-Rooter to come out. So, I called Roto-Rooter. They weren't happy about the fact that I didn't own my house, but agreed to come out.

Then I found out that the husband of one of the women at the party is a plumber. She had him call me last night and he is here now snaking the lines.

Hopefully, alls well that ends well; but all the little things that happen in the course of everyday life might be enough to make me snap.

Chemo #3

2008-07-03T22:01:00.000-07:00

Well this was an interesting day. I got to SCCA at 12:10, about 30 minutes early for my lab appointment. I went to the finance office to get a detailed accounting of the SCCA charges because I've been getting some interesting statements and trying to figure out how they can charge $6000 for the day of my surgery. The only thing I had done there was the guidewires. Does that really cost $6000+? Apparently so. I then went to the lab and checked in, figuring I was in for along wait.

While in the waiting room, I pulled out my beat-up copy of Eckhart Tolle's "A New Earth." I'm almost done with the book, after laying it down for a couple months. As I was sitting there, I kept thinking over and over, "I don't want to be mad today." After what happened last week, I wasn't holding out a lot of hope. As I started reading in the middle of the chapter, "Your Inner Purpose," I felt a shift in my consciousness. Tolle writes, "The great arises out of small things that are honored and cared for. Everybody's life really consists of small things. Greatness is a mental abstraction and a favorite fantasy of the ego. The paradox is that the foundation for greatness is honoring the small things of the present moment instead of pursuing the idea of greatness. The present moment is always small in the sense that it is always simple, but concealed within it lies the greatest power. Like the atom, it is one of the smallest things yet contains enormous power. Only when you align yourself with the present moment do you have access to that power. Or it may be more true to say that it then has access to you and through you to this world...Anxiety, stress, and negativity cut you off from that power. The illusion that you are separate from the power that runs the universe return. You feel yourself to be alone again, struggling against something or trying to achieve this or that. But why did anxiety, stress, or negativity arise? Because you turned away from the present moment. And why did you do that? You thought something else was more important. You forgot your main purpose. One small error, one misperception, creates a world of suffering."

"...your secondary or outer purpose lies within the dimension of time, while your main purpose in inseparable from the Now and therefore requires the negation of time. How are they reconciled? By realizing that your entire life journey ultimately consists of the step you are taking at this moment. There is always only this one step, and so you give it your fullest attention. This doesn't mean you don't know where you are going; it just means this step is primary, the destination is secondary. And what you encounter at your destination once you get there depends on the quality of this one step...What the future hold for you depends on your state of consciousness now."

Reading these passages, I realized that it is really up to me to determine how well or how bad today's visit was going to be. I understood that if I stayed completely within the present and didn't dwell on the past or thought about what might happen in the future, then I would be able to explain myself clearly and without malice towards all of the people I would be speaking to today. I say "without malice" because when I walked through the doors of SCCA today, I was still a little hot about last week's "iron sucrose incident." Now I know that I don't have to be, that I don't need to blame anyone today for what happened today. I can just be myself and let the people do their jobs and take care of me. As a result, I had a very nice chat with the LPN who took my blood and got my port ready for my infusion. I had a very interesting and informative discussion with the nutritionist and was able to talk about the things that were important to me and didn't feel as though she didn't care that I prefer to approach my treatment in a holistic way, bringing in a naturopath and a few other "alternative" practitioners to compliment the treatment I'm already getting.

Today for my oncology visit, I had the coordinator with me who is doing the study on how women with breast cancer organize their schedule, and really their life, in order to deal with all the appointments and information overload that comes in on a daily basis. She does one clinic visit as an observer and "fly on the wall." It was nice to have someone with me today to talk to, since I'm usually alone for these appointments. We got into the room and the MA took my vitals and I got changed and was sitting there with Andrea and realizing that my doctor was running late. I poked my head out and asked the girls what was going on and was informed that she was indeed behind. I mentioned that my chemo appointment was at 3:00, 15 minutes from now. The MA said she would call infusion to let them know I would be late, and I stepped in and told her that it would be a problem for me to be late because of my carpool situation. A few minutes later, Kay, my oncology nurse came in and suggested that Dr. Rodler could see me upstairs in the infusion room. I thought that was a great idea and I got dressed and headed upstairs. There was no pressure, no anger, no glares between sides, it just happened nicely. Now, I will say that I got a little annoyed when the MA wanted to take my blood pressure on my right arm. I don't understand why it's not noted very plainly in my chart or on the front of my chart that my right arm is off-limits. Andrea and I talked about it and I made a plan to discuss it with Dr. Rodler. I forgot, but I will write it down for my next appointment.

Dr. Rodler followed me upstairs and we talked about how things were going. I had a list of 10 or so things to talk to her about, including letting her know that what happened last week was unacceptable to me and that all I need is a phone call if new orders are going to be written so that I can stay in the loop. She understood and made a note and said she would be sure to let me know.

My infusion nurse this week was really great. She is a lot like me in that she is into holistic healing and alternative medicine and yoga and naturopaths. She was great to talk to and she mentioned the "Crazy Sexy Cancer" documentary to me. I had seen that, but it had been a while. She said there was a really great website and blog. I ordered her book and DVD when I got home (through Amazon as it's much cheaper). If anyone's interested: Crazy Sexy Cancer Website, Kris Carr's Crazy Sexy Blog and My Crazy Sexy Life holistic social networking site. Kris Carr's thing is doing the raw foods and juicing. Now, I don't have any intention of doing raw foods as a diet, but I was thinking yesterday about purchasing a juicer. If I have one glass of veggie juice a day, it would be all my vegetables for an entire day. So, I went ahead and bought a juicer tonight and a couple recipie books. I'm excited about this! It's been probably 15 years since I've juiced on a regular basis.

I told Cathy, the infusion nurse, that I hoped I got her every week. I don't know if it will happen since she usually leaves at 5:30 and after next week, all of my appointments will be at 5:00. But if I could see her every couple weeks, that would be great.

Speaking of next week, my sister started her maternity leave after work today, a week early, so starting next week it's the bus for me. I was planning on driving on Friday's, but I found out there is a bus to Tacoma about 4 blocks from SCCA, so I think I'll walk it next week and see how it goes.

So far, side effects have been fairly minor. My list is small:
-itchy/sensitive scalp (can't wait to shave my head.. really!)
-a toenail popped off last night when I was filing it (loosening of the finger and toenails is listed as risk that is "less likely")
-muscle/leg cramps (I got some tonic water with quinine, but the doctor doesn't want me to take it, so I'm trying muscle relaxers - on top of anti-nausea meds! I'm going to get seriously loopy. I'll see how it works this weekend, but I don't know if I can keep it up during the week.)
-fatigue (I'm increasing my walking time every day just a little to help combat it)
-sensitivity to the bactrim-the densensitization did not work (I've decided to stop taking it against my doctor's preference. the chances of my getting pneumonia is less than 2%)

Tonight as I sit here, I am noticing a little rumbling in my stomach. Nausea? I'm not sure yet, but I think I'll take a compazine to make myself feel better.

Chemo week 2

2008-07-01T11:51:00.000-07:00

It's almost time for my next chemo infusion. In terms of nausea, I just haven't had any and I'm extremely grateful about that. My infusions are a little off right now though. My first infusion was on a Thursday, last week was on Friday and this week it's Thursday again, and next week will go back to Friday. So, it will be interesting to see what happens after 6 days instead of 8 days.

Unfortunately, there was an "incident" on Friday when I went in for the second infusion. When I got into the room and into the chair, the nurse "reminded" me that I was to start on iron sucrose that day, and that the infusion time would take an extra hour. This was news to me! No one had called me about adding extra medication to my treatment. When I questioned her about it, she said I should have heard from the oncology pharmacist or the oncology nurse. She showed me the order, which was written the day before and no one had called me. The other issue was time. I'm in a carpool and had to leave by 4:30. Granted, it's just a carpool with my sister, but it would be very unfair for me to ask her to stay later at work, and adding that she's 8 1/2 months pregnant just made it worse. So, I told the nurse that I would not be getting the iron sucrose that day. I also told her that I wouldn't be starting anything new until someone called me about this medication. I also said that if I couldn't change my appointment times for the next 2 weeks, I wouldn't be starting this medication until July 18, after my sister goes on maternity leave and I start driving or taking the bus.

This kind of thing just really pisses me off! As if I have nothing better to do with my time but sit around at their convenience. I was talking to my friend about it and she had similar issues when she was undergoing radiation therapy in that every day when she got to the clinic they were running an hour behind. She was angry all the time about going in for treatment, and that's how I was feeling on Friday. I don't want to be angry when I'm getting my treatments! That isn't going to do me any good.

I think cancer patients are in a very vulnerable position and in large part have no choice but to cater to the "whim" of the treatment center. Whether they are running late or want to give a new medicine or whatever! I mean, what are we going to do, walk out? Not too likely to happen.

Monday morning I made a call to the scheduler and was able to re-schedule my times for this week and next week. Also, the pharmacist called me, apologized, and explained why she wants me on the iron sucrose. I don't have any problem with them making changes to my medications, adding or subtracting, or whatever they need to do. All I ask is that they give me the courtesy of a phone call! I will be seeing my oncologist on Thursday and will bring this issue up with her.

Yesterday I noticed a bit of a metallic taste in my mouth and when I was drinking a frappucchino there was a definite bitter aftertaste. This morning I had a cup of coffee and I noticed the same thing. So, I guess for now I will stick to tea and smoothies. I'm not going to be able to get rid of the metallic tasting saliva for the next 6 months, but I don't want to ruin my love of coffee either.

Today I went to the UWMC cancer center and met with their "beauty and cancer program" coordinator and did find a wig I liked. It's dark red with highlights and reminds me of the years when I used to dye my hair dark red. I need to get it trimmed and styled a bit though. The cool thing is that it's brand new and was free. I also got a scarf and 2 sleeping caps. I ordered several caps from Etsy that are all hand-made. I think they were originally designed for the operating room, but will do very well for me. And, they are really pretty. Here's a picture of one that I ordered:

I still may use my insurance to get another wig. I haven't decided yet. I've got the coverage and the prescription, so I should just do it. Between all of that and the things that MJ over on LJ is sending me, I should be in pretty good shape.

Yesterday I had a massage with a new therapist who is actually on my insurance. She is very wonderful and I'm going to really like her a lot. I learned some interesting things as to why my feet are hurting so bad. I've always been a believer and had an interest in foot reflexology, but I haven't looked at a chart in a very long time. Well the two places on my feet, one spot on the left and one on the right that hurt the most, correlate directly with breast cancer. The spot on my left foot corresponds to the right breast and the spot on my right food corresponds to the lymphatic system. I set up weekly appointments and will be spending a lot of time having my feet worked on! I also realized just how "nice" my body is being to me right now. There are some definite tight areas that I discovered yesterday, especially in my upper back, but I haven't had any pain. It will be good to get these worked out over the next few weeks and get back on a regular massage schedule.

I want to hire a personal trainer to work with me while I'm doing the chemo and after. I will talk to my oncologist about that, but I think it's a good idea. I want to find someone who has experience working with cancer patients and who (hopefully) isn't associated with a big gym. I need to call the breast cancer resource center in Tacoma and see if they know anyone.

I was thumbing through the Puget Sound Wellness Guide yesterday and ran across the BRCA story of someone I used to work with when I was at Madigan. I have never met her, but we used to collaborate on some projects together via phone and email. She works for the UW, so I sent her an email yesterday.

This weekend I'm kind of thinking of going to check out the Tall Ships, but I'm not sure I want to deal with the crowd. I don't really have any plans for the weekend except a BBQ on Friday with my sister and brother-in-law; and a party at my friend's house on Saturday. I think it will be a nice quiet weekend and hopefully not too hot!

2nd infusion today

2008-06-27T09:10:00.000-07:00

This has been such a long week.. it just seems like it has been going on forever. I think it's because I'm so tired. I still haven't had any major side effects from my first infusion or the oral chemo. I cut way back on the anti-nausea drugs this week, but got back on them yesterday and today in case I need them after this infusion.

I finally found some cute scarves and head coverings yesterday. I bought several that have UV protection in the fabric and I've tied them like pirate caps. Yesterday I was at SCCA and tried on some wigs. I couldn't help but laugh, they looked so funny! There weren't very many nice ones... most were super short and none were in a color I really liked. I did find a platinum blond one that was longer, but I'm not sure about how it would look. I asked the gal to hold onto it though. I'm going to go over to the UW and see what they have next week. I have a feeling that if I want to get a really nice wig, I'm going to have to go to one of the wig stores. I don't want to spend $2500 or anything, but I would like to get something that looks nice for the times when I want to wear one.

Day 5

2008-06-23T07:55:00.000-07:00

I am very surprised and pleased that I've made it to today with no noticible side-effects. I was warned that the first week would be pretty hard and I'd be feeling pretty crappy, but I feel just fine. I've had no nausea to speak of, although I have been dillegent about taking the anti-nausea medication on a regular basis.

I even managed to survive a fairly busy weekend. I did a little gardening.. mostly cutting back blackberries that were in the way of my peas. My mom and I practiced tying scarves and we made turbans out of t-shirts.

Other than being tired, I am doing well.

1st dose completed

2008-06-19T16:45:00.000-07:00

Well, I'm feeling pretty normal so far. At least as far as the chemo goes. I definitely feel like I had some sedation drugs today.. a little woozy. The worst part at the moment is that when the port was placed, the surgeon went through the jugular vein (I was expecting the subclavian) and so my neck hurts. Plus, it's just super attractive, I have to say.

My aunt called me last night and she was so funny. She said I should name my port. Now, I am not the kind of person who usually goes around naming inanimate objects (the Rat Patrol aside), so I wasn't too keen on the idea. However, after seeing the port this morning and the fact that it's purple, I can announce that the name of my port is the "Giant Purple People Eater." So, Aunt Gayle, there you go!

I am planning on going to work in the morning and hopefully will be attending a BBQ for a couple co-workers who got accepted to medical school and are heading back east. My sister will pick me up if I don't feel up to it and my friend will drive me home if I do. At the moment, I'm making potato salad.

Naturopath visit

2008-06-17T22:37:00.000-07:00

The naturopathic clinic I went to today is the one that the Swedish cancer center works with. It was actually on my list of reasons to go to Swedish instead of SCCA. Luckily I can go to SCCA and still go to this naturopath group!

We talked a lot about various interactions between chemo and supplements and about ER+ BRCA and various supplements. It was a really great visit and I'm very relieved and a lot less confused. I feel like I'm on good supplementation for the first 12 weeks of chemo and we will make adjustments for the 2nd 12 weeks when I switch drugs.

This makes me feel much more calm about Thursday and beyond.

Pharmacopia

2008-06-16T12:40:00.000-07:00

I just got a call from one of the pharmacists at SCCA who was reviewing my med list. I have been warned against flax seed and CoQ10 for the rest of my life. I've read such conflicting reports about flax seed and ER+ BRCA.. there are some physicians who say it is ok because flax contains phytoestrogens and others who say it's not ok.

I did some searching around on the internet for naturopaths who work with cancer patients and made an appointment for tomorrow at Northwest Natural Health. I'll bring in all my info and see what they say.

It's Monday already...

2008-06-16T11:16:00.000-07:00

Last night I was putting pills in my pill-box for the week ahead. No more supplements, at least until I meet with the nutritionist and find out what I can take and what I can't. The last pills I put in were for Friday, Saturday and Sunday and I was holding three blue pills of Cytoxan in my hand and just staring at them. It's hard to commit to something that is supposed to help me but at the same time has the potential to make my life hell for the next 12 weeks. As I put them in the box, I realized that they look like SweetTarts only thicker. That made me smile, realizing that the juxtaposition of a SweetTart is much the same as a chemotherapy pill.

Today I printed out some articles from the Mayo Clinic about how to manage some of the chemo side-effects. I also signed up for a class at Tacoma General Hospital, "Nutrition and Cancer: Separating Fact from Fiction." Hopefully it's worth the $20. Actually, what I'm hoping is that since Multi-Care is affiliated with SCCA, I can get a discount, but $20 isn't so bad to spend. It's for the dinner mostly.

Starting tonight, I am going to try and come up with a good regime for before bedtime. What I usually do is fall asleep on the couch, realize I need to be in bed and drag myself off. What I want to do is make sure I have some food together for the next day, and also start a nightly self-care ritual that includes lots of moisturizing.

I have also read somewhere that caffiene should be avoided while on chemo. Or, if not avoided, then limited. I may ease back on the coffee.. not that I drink a lot of it anyway, one travel-mug in the morning. But there are days that I supplement with a mocha or 2. I may also switch to tea. Tea makes my mouth dry and makes me more thirsty and I'm supposed to start drinking 2 liters of water/liquid a day. Here's the interesting thing though... if I decide to cut out caffiene completely and switch to tea, my only option for caffiene free tea is herbal tea. This goes back to the supplement question. I will add that to my list of questions for the dietician. Maybe I'll just drink peppermint tea. It's good for an upset stomach and it eases nausea. Pepperment and ginger... that would be a good combo.

I was out looking for scarves this weekend. I found a couple cheap ones at Ross. I tried them out at home, but I can't figure out what to do with all the excess material. It is really hard for me to learn how to do a 3-dimensional task from a piece of paper. I may sign up for the beauty class at SCCA just to learn how to tie the things. On the other hand, I'm not a big fan of frilly things and making bows and braids just seems a little silly. I used to wear head-scarves all the time in college. I just tied a knot in the back. It was very simple. Of course I also currently have the hair to help hold the scarf in place. I'm trying to find places to buy them more cheaply than I found in the TLC catalog I was given. $18 for a piece of fabric is a bit ridiculous. I may have to unearth my sewing machine and make some!

Driving

2008-06-14T08:48:00.000-07:00

I had to drive to work today so I can go to this naturopath appointment this morning. Driving from Tacoma to Seattle is annoying at best during rush-hour traffic. It did not help that I didn't get to bed until midnight (again) and so did not get up on time.

I do plan to drive on the days I have chemo starting July 18 (after my sister goes on maternity leave). My goal is to leave home by 5:30 or 6:00 in the morning. I still have a lot of hours to make up at work. My chemo appointments will be at 5:00 in the evening and I'm hoping traffic will be cleared out by the time I'm done.

Today, though, was a hour and 15 minute commute. If I work late tonight I will get home much faster than if I leave at my regular time of 4:30.

I just need to get to bed earlier so I can get up before dawn!

Diagnostic test update

2008-06-13T15:24:00.000-07:00

After 2 days of diagnostic testing involving IV contrast and a blood draw, my poor left arm is shot to hell. I suppose the port will be a good thing for just this reason.

I had the MUGA scan on Wednesday and it shows my heart function to be normal. Why am I not surprised!

The bone scan does not show that any cancer has moved into my skeletal system. However, it does show degenerative joint disease in my ankles, low back (L-5) and clavicle-sternum joints. I am not at all surprised by my ankles and low back, but I don't get the clavicle thing.

The CT scan is fairly unremarkable. There are a 3 spots on my lungs, 2 on the right and 1 on the left, but they are too small to do anything about. There is no way of telling whether or not they mean anything. I'm not worried about it.. this is what happens when you get scanned from head to toe.. any little thing shows up. Anyway, we will follow it over the years, but it won't impact the plan for chemotherapy.

I also had a bood draw this morning that I have not received the results from yet. I am back at SCCA this afternoon because I still have some redness on my breast and it doesn't appear that the infection has quite cleared up yet, so it's another 7 days of Cipro.

I've picked up all of my prescriptions for when chemotherapy starts, including the chemotherapy pill, zantac, ativan, compazine and bactrim. Because I'm a little allergic to bactrim, I have to go through a desensitization and work up to the actual pills. Also, the G-CSF injections have arrived. So, I'm all set... at least for the moment.

Tonight my friend is coming over for movie night.. that will be fun

Mini-melt down

2008-06-11T19:31:00.000-07:00

Well this was a very hard day. I realize I'm entitled to a break-down every once in a while but that doesn't mean I like it.

My thoughts lately have been that I really don't want to do this. Not that I'm not going to do it, or that I don't understand why I have to do it, or that I don't see the validity in doing it. But, I really, really don't want to.

Today when I was getting the MUGA scan done I was hit with the realization that this is now the time that I am doing this. The march towards chemo and the next 6 months has started and there's not a lot I can do about it. I managed to hold things together until the study was done, but afterwards when I was meeting with Kay, my oncology nurse and she was explaining about all the side-effects and all the drugs and this and that, I just got completely overwhelmed and I couldn't help from crying. I made it through the session though but asked if I could just stay in the room for awhile. I somehow even managed to convince her that I can give myself a shot.

I realized that I really couldn't go to work this afternoon so I called my mom and asked her to come pick me up. I spent the afternoon at her house and had dinner and now I'm home still feeling a little fragile, but much better.

One of the prescriptions I was given today was Ativan and I've started taking it. Hopefully that will be enough to calm the anxiety and get through the next week.

Tomorrow I get the Bone Scan and CT Scan done.

Chemo

2008-06-10T16:34:00.000-07:00

Well, I start chemotherapy on the 19th, right after the port is placed. The next 2 days are going to be full of diagnostic tests and whatnot. I have decided to enroll in a Phase II non-randomized study.

The first 12 weeks will consist of weekly infusions of Adriamycin (doxorubicin). I will also be taking oral Cytoxan (cyclophsphamide) every day. In addition, I will be injecting G-CSF (filgrastim) 6 days a week to help keep my white blood cell count up. I'll be doing the injections at home.

The second 12 weeks will be just a weekly infusion of Abraxane. This drug is not currently FDA approved for early stage breast cancer like I have, but has shown good results and in some cases better results as the Adriamycin.

I'll also be getting a couple anti-nausea meds to take home as well as taking bactrim to stave off any pneumocystis pneumonia. I'm sure I will also be taking calcium and vitamin D supplements, but I haven't met with the nutritionist yet.

I'm getting nauseated at the thought of all of this!

It's time to be overwhelmed again

2008-06-06T10:09:00.000-07:00

First things first. I called the paging operator yesterday before I left for SCCA to lodge a complaint about not getting a call back. I spoke with Patient Relations who will also pass this issue to the "Quality Liason and M.D. Coach" person. Dr. Calhoun did tell me that the paging operator would page the resident, who would page her and she would then call me. Obviously this did not happen and whether the fault lies with the operator or the resident, I do not know.

Dr. Calhoun determined that I have a mild infection. She put me on a 7-day course of Cipro and seems confident that this will clear things up. After that appointment, I had my blood drawn. By the time I was done, I was very late for my oncology appointment and ended up waiting almost an hour before I saw my oncologist.

Dr. Rodler and I spent a lot of time talking about what chemotherapy will entail and the different choices I have. There are not a lot of choices for women with early stage breast cancer, as far a chemo drugs go. I will most likely join one of the research studies we talked about. It's a Phase II, non-randomized trial, and I'm pretty comfortable with it. There are a lot of tests and appointments I have to do in the next 2 weeks though, including:

1. MUGA scan to check my heart pumping function
2. CT scan of chest and abdomen
3. Bone scan
4. Nutrition consult
5. Placement of a port-a-catheter. I will get this done on the day I start chemo.
6. Lab work

I also need to get a consult for a wig, which I think I can do at UWMC.

Is it any wonder I woke up at 2 am! At least I feel better, physically that is.

I hate being sick

2008-06-05T11:38:00.000-07:00

I'm feeling pukey again. Plus I have the chills. No fever though, that we can tell, but we don't have a thermometer either. I'm leaving in 20 mins. for SCCA.

well, crap

2008-06-05T08:40:00.000-07:00

I definitely have an infection going on. There is a spot in my incision (the axillary dissection site) that is red and infected and my entire breast is warm and pink and swollen. I have a call into Dr. Calhoun's nurse and I'm just waiting to hear back from her.

So this has been my morning so far:

-I got up at 5:00 and decided there is definitely something going on with my breast
-I took a shower
-I called the paging operator at 5:45. Now, both Dr. Calhoun and her nurse have informed me that Dr. Calhoun takes her own calls. I was instructed to call the paging operator and ask for her and she would be paged. However, when I called the paging operator this morning, I was told that she is not on call for herself and that Dr. Someone else is on call for her and he would be calling me back. Some resident, I assume. I explained that Dr. Calhoun told me that she takes her own calls, but the operator said no. Now, I wasn't going to have an argument with the paging operator. What pisses me off is the fact that it's 8:45 now and no one has called me back. I will be having a pointed discussion with Dr. Calhoun today when I see her, that's for sure.
-I cleaned the cat box and in the process, stepped in some cat puke and tracked it all around the kitchen before I realized what was going on. Luckily I wear Crocs slippers, so cleaning them was easy, but I was highly annoyed at the cats, not only for the puke, but they keep peeing outside the cat box and I'm changing the pad twice a day (I use puppy training pads all around the cat box).
-I got to work at 7:15 and my co-worker and friend who is also an RN took a look at my breast and agreed that I definitely have something going on
-I headed downstairs one floor for my first PT appointment at 7:30. My physical therapist is really wonderful and I'm very happy with her. She exclusively works with breast and gynecological cancer patients. We talked about my history and what the future plan is, but we did not do any therapy today. She also examined my breast and placed her own call to Dr. Calhoun's nurse.

Now, I am just waiting for the return phone call to find out what time they want me over there. Oddly enough, I feel much better today than I did yesterday. I did check my temperature last night and it was up a little bit at 98.9. I normall run low, about 97.7 or 97.8, so it's a little high for me. I don't feel that warm today though. I am starting to have some sharp pains in the axilla area, so I think this infection is starting to spread a bit.

That's it for now. More updates later.

Next phase

2008-06-04T09:40:00.000-07:00

I will be starting PT on Thursday. Luckily, one of the therapists recommended to me is in my building, so I don't have to go anywhere except downstairs. I've been trying to do some of the exercises that the nurse gave me after the drain was pulled. Let me tell you, it's a little painful. Ok, it's a lot painful. I'm sure at some point I'll be able to make a "snow angel," but not today!

Also on Thursday, I am meeting with my medical oncologist to discuss the chemo and treatments. I have a whole list of questions for her about this process. I'm not exactly sure when the chemo will start since one of the things I remember from my first meeting with her was that she will have me get a bone scan and CAT scan before starting any treatment.

I am not feeling well today and am really wishing I had stayed home. I'm freezing cold and have been eating saltine crackers which are not really helping. I may go home after a meeting I have this morning. This means taking the bus and probably calling my mom to come pick me up at the Tacoma Dome.

I'm also having weird hormone things going on since my surgery. With the PCOS, I've been basically pre-menopausal for the last 3 years with no real periods, just spotting on an irregular basis. But the day I came home from the hospital, I had started a period that lasted for a week. Another one started on Sunday or Monday. I don't get it.

Post-op follow-up

2008-05-29T09:52:00.000-07:00

keep meaning to update but I keep thinking about it at times when it's impossible.

At my post-op appointment last week, my surgeon said everything looked really good. I don't have to see her for 6 months unless there is a complication. She did not take the drain out at that visit, however, she did re-do the stich and it was so much more comfortable. She did say that she spoke with my oncologist and it looks like I'll be getting 6 months of weekly chemo followed by 6 weeks of radiation. So, about 9 months of therapy. I'm still waiting to hear from SCCA to schedule an appointment with my oncologist.

I went back to work on Tuesday which was a little daunting, but luckily all I have to do is sit in front of the computer or look up info in my building. All of my current files have been moved to the building I work in due to lack of space at the medical center. It's perfect for me this week to not have to shuttle over to the hospital and deal with everything there. Tuesday afternoon, I went back to SCCA and got the drain removed. It hurt like hell to have it taken out, but what a relief! I was cautioned though not to do anything strenuous (including pulling my wheeled laptop case) with my right arm for the next 1-2 weeks. It's very hard to be even more restricted, now that the drain is out and I can do so many more things! I also had a massage Tuesday night, which was so wonderful. I haven't had a massage since March when I moved. She just did a full body massage to get my circulation going and also did a little work on my shoulders and neck and my left hip, which was feeling very lopsided because I hadn't been able to sleep on my right side. Now that the drain is out, I have been able to lay on my right side a bit, which is very nice!

When I woke up on Wednesday morning, I felt so good.. having the drain out and getting a massage.. I felt almost back to normal. I had ordered some new bedding, which arrived Wednesday night and I could not resist putting new sheets on my bed! So much for taking it easy with my arm. I need to though, so that additional fluid does not accumulate under my arm where the drain was.

I'm going to take it easy this weekend and I'm sure everything will be fine. Does anyone know of any good books about dealing with chemo?

Finally, some good news!

2008-05-21T20:25:00.000-07:00

My surgeon called today with my path report:

The tumor is 2.5 cm
The micro-calcs are benign
The margins are clear
The lymph nodes are negative (except the sentinel node)

It's a T2N1 tumor and is Stage 2B

I don't know yet about the plan for chemo. My post-op appointment is Thursday afternoon and I don't think I will meet with the oncologist that soon. However, I expect to come away with a preliminary game plan for the future.

Otherwise, if this drain doesn't come out tomorrow, I may commit a crime!

Breast CA quilt

2008-05-18T08:57:00.000-07:00

My step-mom and her quilting group made this beautiful quilt for me. To get good close-ups, click on the pictures to see them on flickr.

Tired of this

2008-05-18T08:05:00.000-07:00

I just sent an email to my friend and realized it turned into a blog post for this morning...

I did ok with the heat, although yesterday was sooo hot.. 90 degrees. My mom is putting in a garden for me and I did a little physical labor with my left arm, trying to get the pond out of the flower bed out front. I got the plastic mostly out, but needed a 2nd arm to free it from the rocks and dirt. My friend came over and got it out and we started filling it with the various cinder and concrete blocks that the previous tenant had around here. The thing is about 4 ft deep! Mom is going to get some more soil, and she bought some herbs to put in it. It felt good to work up a bit of a sweat and I figured I need to get my left arm stronger anyway.

We went over to my brother’s yesterday for my niece’s birthday and I kept noticing that my shirt was damp under my armpit. For awhile I chalked up to sweat, but then I realized that I was leaking. For some reason, it’s leaking pretty steadily at the drain. All my brother had for gauze was US Army issue medic gunshot wound packs. It actually worked out really well as a big pad, but it was almost soaked through by the time we got home. I haven’t checked it this morning yet, but it hasn’t soaked through at this point. I am having fairly consistent lightening strikes down my upper arm and they are really painful! It’s weird that they hurt since I am fairly numb from my elbow to my armpit to the side of my breast.

We took the tegaderm off last night after I re-read the discharge instructions and it said to remove after 48 hours. When we removed the dressing from the lumpectomy incision, it took the steri-strips with it and started bleeding. I have a feeling that the scar is not going to be a nice one, but at least it’s on the underside of my breast. I am getting really tired of the drain and the dressings and all of this constraint. It’s frustrating.

The drain definitely feels like it’s pulling on its suture, and I’m not sure how I’m going to take a shower and let it just hang there. I can’t quite get the dressing changed on my own, although I’m trying. I don’t know how I can go back to work if I can’t even take a shower on my own and put on the aquashield.

Sorry, I’m full of complaints this morning. All in all, I feel good, I’m just frustrated and annoyed by the drain and the dressings and all of the weird sensations in my arm. Ah well, you did ask!

Several days later

2008-05-17T08:29:00.000-07:00

This is just a list of what is currently happening:
Ok, I am definitely tired of wearing the velcro "sports" bra contraption they put me in after surgery. Not that I am going to take it off, but it's starting to really annoy me.

After a bolt of lightening went through the back of my arm last night, I remembered what Dr. Calhoun said about "electric shocks" going down my arm post-surgery. She didn't say how big they would be and that they hurt!

I'm also starting to get achy down the back of my right arm, yet somehow I am also numb. The numbness is weird, because it makes things feel strange and I was worried for a minute that my upper arm is starting to swell up. I don't think that is happening, or if it is, it could be drainage from surgery.

As far as the drain, the fluid is getting less and less and it's turning lighter in color. Almost to the "chardonnay" stage. Dr. Calhoun went over the colors of the fluid in terms of wine. ha! This morning the drainage was under 50 cc for the first time. I am pretty sure it will get down to the magic number of 30 cc before my appointment next week.

My throat is still sore from the breathing tube and I'm still phlegmy at times.

Today will be my first venture out of the house. My niece turns 3 next week and today is her birthday party.

My mom, bless her, is putting in a garden out back. I wasn't going to deal with the garden until next year, but she is determined to plant some veggies! It's been weeded, raked, mostly leveled and the rows are done.

post-surgery update

2008-05-15T15:55:00.000-07:00

My surgery went really well. The unfortunate thing is that the sentinel lymph node did show cancer, so they had to do a lymph node dissection and I had to stay over night in the hospital. I'm home now and feeling pretty good. Hopefully the full pathology results will be back on Monday or Tuesday. My surgeon will call me when she gets them.

For now, I'm just taking it easy and hanging out with my mom.

MRI

2008-05-13T19:48:00.000-07:00

If I never have to go through that again, it will be too soon. Unfortunately, when I spoke with my friend, who is a breast cancer survivor, she told me she gets one every other year. {sigh}

About the time I thought my left arm was about to fall off, I was told I had 9 minutes to go. I just kept saying "breathe through the pain" over and over and thought about my lovely trips to Hawaii several years ago.

I'm so glad that's over!

Surgery tomorrow

2008-05-13T08:27:00.000-07:00

I haven't updated for awhile.. I think I've been trying to avoid all that is going on.. I reached a point a couple weeks ago where I didn't want to deal with it anymore, and why should I? Then I realized that is probably a very normal reaction to dealing with cancer and I'm sure I'll feel it again down the road.

My surgery is tomorrow and I'm definitely feeling a little anxious. I haven't been sleeping well the last several weeks, and although I have been seeing some of my friends and family lately, I'm feeling very isolated. I'm just really tired. I want to go to sleep and wake-up and have this all be over. If only that were possible!

I have to say that I am very grateful to everyone who is praying and thinking good thoughts for me. Knowing that you are there helps me to face the next challenge. As far as surgery, I am confident in my doctors of course, and I know things will be fine. But for today, I wish I could just stay in bed and hide away from the world. I'm leaving work early this afternoon and have to go over to the medical center for the lymph node mapping. Tomorrow morning I have to go get the guide wires put in, so the surgery itself won't be until later in the morning or even early afternoon. At least I get to go home tomorrow and not have to spend the night.

It seems like there is a lot of things I have to do tonight.. stupid stuff like bring the fans in from the garage because it's going to get hot, and put the garbage in the bin because garbage day is Thursday, but I need to get it all ready to go for someone to take it out on Wednesday. I also need to find some CDs I want to listen to during surgery and convert them to mp3s and put them on my iPod. They said I could listen to music in the operating room. I'm also trying to decide if I want them to use some healing statements. I kind of do, but I feel a little silly asking them to do it. Both my surgeon and the anesthesiologist have told me that they have done it before and if I want that, they are happy to do it.

I wanted to eat lightly today, but I didn't get around to making sure that I had anything light in the house. I've decided for lunch I will have a tuna sub at Subway and soup for dinner.

I also have to remember to take my work laptop home so that I can do some work later this week or weekend to make up for the 2 days I took off last week and for any extra time I might need off next week. The bummer about this being a new job is that I don't have much sick/vacation time built up.. only 18 hours.

Last week I ended up taking off Thursday because I could not sleep the night before. I was literally wide awake the entire night. Around 5 am I sent an email to my boss saying I wasn't coming in because I had appointment in Olympia later in the day and I needed to get some sleep so I could drive.

Friday was my pre-op appointment. I was going to work at the beginning and end of the day, but it just wasn't worth it for 2-3 hours. I still spent the entire day in Seattle. The meeting at SCCA went fine. It was nice to sit down with my surgeon and talk about how the surgery will go and be able to ask questions. It was in a very relaxed atmosphere. When I went over to the hospital to meet with anesthesia, that was completely different. You are just 1 person in a long line of people coming in that day. I felt like I was being processed. I was able to connect with the anesthesiologist resident when I told him about my experience at the simulation center a couple weeks ago. So, that was something. The nurse though.. it was completely ridiculous. On a positive note, when I went over for the chest x-ray, it took about 10 minutes.. in and out. So that was good.

I'm going to wear my "hey cancer" t-shirt tomorrow as my form of protest against having cancer. Maybe that will brighten someone's day.

I did not need this today!

2008-04-24T11:42:00.000-07:00

There was a Dept of Surgery staff meeting today, and the purpose was to show off the new surgical and OR simulation center. It all would have been really great if I wasn't actually scheduled for surgery in a few weeks. I really, really did not need to see a breathing tube insterted into a patient, his heart stop beating and then have to be shocked back to life. It's not like I was watching a video. I was in the OR room!! The patients are very lifelike.. they breathe, have heartbeats, talk and blink their eyes. By the time we got back to the lecture room, I was practically in tears. Then to top it off, during the lecture I was informed that there are 100,000 deaths per year attributed to miscommunication in the operating room.

When I got on the shuttle to go back to work, a bunch of people from Harborview were talking about all the things that can go wrong with the insertion of the breathing tube.. paralyzation of the vocal cords, etc. I put in my headphones and turned on my ipod. I feel better now, but I'm still really shaken by the whole thing.

Everybody keeps saying, "you'll be fine, you'll be fine" but I don't want to hear that right now. I think I need to talk to my doctor.. I don't know. I am not a happy camper right now.

Surgery

2008-04-22T01:59:00.000-07:00

I spoke to Dr. Calhoun for about 30 minutes last night. In reviewing all of my films with the radiologist, they both think I can move forward to the surgery. The radiologist at SCCA does not see this mysterious "3rd area" in the same way as the radiologist in Olympia. In fact, he recommends no more diagnostic testing and doesn't believe this area is of any concern. As disconcerting as this sounds, I have to believe that the guy who looks at cancer in MRIs all day vs. the guy who looks at the kitchen sink in MRIs all day knows what he is talking about. That being said, I will be very closely monitored over the coming years that if this area does start to look suspicious, we will catch it very early. I talked with Dr. Calhoun at length about it and I have faith in her assessment.

My surgery will be on May 14. Two guidewires will be placed under mammogram before surgery, and if for some reason it doesn't look like the area of microcalcifications will be amenable to excision at the same time as the cancer, then a biopsy will be taken of it. However, my surgeon feels that both will line up as they do in the films and will be excised at the same time.

Since my surgery is on a Wednesday, I may be able to go back to work on the following Monday. I'm going to be prepared to do some work from home, just in case.

Although it seems like a long time out, May 14th works very well for me. I have some appointments the week before that I'd rather not reschedule. Also, waiting until May means I'll get at least 2 days paid time off (1 sick day and 1 vacation day) that I will have accrued in April, but can't use until May. Plus Dr. Calhoun will be gone all next week at a conference, so her surgery schedule is booked this week and the first full week of May. So, it all works out.

I am feeling very confident about things, but it is 2:15 in the morning and I haven't gone to sleep yet. I'm hoping that after a cup of lavender and chamomile tea, I will be able to squeeze in 3 hours of sleep. I may be back to the sleeping pills for a day or two until my mind stops with the constant thinking about things.

A new thought

2008-04-17T20:19:00.000-07:00

People ask, "how do you live with breast cancer?" I haven't really had an answer... I mean, I am just living. But today I had this thought, it's not "how do I live with breast cancer?" it's "how does breast cancer live with me?" After all, breast cancer does not define my life, even though it will always be a part of my life. There will be times, like now, when cancer is a major part of my daily life and other times when cancer will be in the background.

There is this quote I like from a song that is posted on my info page,
"The storm is passing now
And when it does
I'll open my eyes
And I'll see it as a blessing"

Right now, I'm in the storm and under the clouds; but up ahead on the horizon is a clearing, and I'll get there eventually. There is a reason that the Universe has thrown this particular challenge my way. I'm not sure what that reason is yet, but I know that I will be a better person for it.

MRI issues / Cancer Documentary

2008-04-17T11:40:00.000-07:00

I was scheduled for a second MRI on Tuesday at SCCA. I picked up the ativan at the SCCA pharmacy and took it before my appointment. Unfortunately, the bus was late and the techs couldn't wait very long because they had other appointments. I thought I would be able to deal with the fact that I was squished in the machine. The coil they use for the breat MRI is really high. The main problem was that I couldn't breathe by the time they got me in all the way. After a couple tries, they cancelled the exam.

The weird thing was that the radiologist came out and said, "Well maybe we can send you to Overlake or somplace that has an open MRI." Two things immediately popped into my head about that. First of all, I was told that an open MRI would not give enough detail. Secondly, the entire point of this MRI was because the radiologists at SCCA supposedly weren't going to read the films that I had done in Olympia.

I was feeling pretty miserable about not being able to do this, so I didn't ask any questions. I was really on the verge of breaking down a couple times. Luckily, the ativan started to kick in and by the time my sister came to pick me up, all I could do was sleep. I slept all the way home and then went straight to bed and woke up about 9 pm. Of course, I was up until 1 am and then had to get up again at 5! I have to say, I don't understand people who take valium or ativan as a recreational drug.. all it does is put me to sleep!

I talked to Dr. Calhoun's nurse today and apparently Dr. Calhoun is thinking about what she wants to do next. I did tell Laurie that it didn't make sense for me to go somewhere else for the MRI. If that's the case then they can use the one from Olympia! I asked her if she thought I might get an ultrasound-guided biopsy of this mysterious "3rd area" and she thinks that is one of the options. I won't know until Monday though because Dr. Calhoun went home sick today.

So the waiting continues...

Did anyone see that cancer documentary on PBS last night? I thought it was very good, but it did start making me feel nervous about my cancer. I'm starting to get more anxious about just getting the tumor out and finding out if the cancer has spread. I am very confident that mine has been caught early and hasn't spread, but I'll just feel better when I know for sure.

I did like the last 30 minutes with Linda Ellerbee and the panel of physicians who treat cancer patients and who are living with cancer themselves.

A treatment decision

2008-04-12T13:05:00.000-07:00

After talking to surgeons in Olympia and Seattle at Swedish and SCCA, I've decided to go with SCCA for my care. I met with 3 doctors yesterday, the surgeon, radiation oncologist and medical oncologist. Although I didn't think it mattered, I like the fact that they are all women. My surgeon, Dr. Calhoun, is wonderful so far. She is very easy to talk to and has a great personality. I was also really glad to talk with the oncologists, since I haven't had the opportunity to do so yet. We are not sure yet that chemo is in my future.. a lot will depend on the sentinel node biopsy.

The next step is to get another MRI at SCCA next week. They want to evaluate the third area and determine if it really needs to be removed. Also, since my first MRI was such a mix-up, I actually feel better about getting a second one. This time though, I'm going for the Xanax!

It was a very long day. I checked in at 11:30 and we did not leave until 5:30. I've received a ton of literature over the past 2 days. Plus, my step-mom ordered a bunch of books for me that my regular doctor had recommended. I'm not sure when I'll have time to read it all, but it will give me something to do when I'm recovering from surgery.

Now that I've made this decision, I'm anxious to get the surgery over with. I feel like I've almost forgotten that I have cancer over the past few weeks while I've been busy moving and starting my new job. Unfortunately, that doesn't make it go away. I'm ready to move forward with my treatment and get into the process of healing.

Swedish visit

2008-04-11T09:17:00.000-07:00

Yesterday I met with a surgeon at Swedish. Today I'm meeting with an entire team at SCCA. The appointment is from 12:00-5:00. My gut feeling is that I'm going to go with SCCA. I haven't even met this surgeon yet, but it makes sense to get treatment where I work, and it's the one that feels right. I guess I'll know after today. It will be interesting to see if this surgeon says the same thing as the one I saw yesterday. If so, I'll mostly likely be getting additional diagnostic testing done to determine if the other 2 suspicious areas are cancerous. I'm still hoping to get a lumpectomy as opposed to mastectomy and I want to exhaust all options to go that route. Even if it means another MRI. Actually, it would be a biopsy under MRI. I'm not even sure how that would work. If, in the end, mastectomy is the most reasonable choice, then so be it. I'll go for the bilateral mastectomy and then get new boobs! A little light in my storm and not a bad birthday present when I turn 41 :)

Decision time

2008-04-08T19:33:00.000-07:00

I see two surgeons at the end of this week, Pat Dawson at Swedish and Kris Calhoun at SCCA. I've heard good things about both of them from various people. I'll make a decision on Friday as far as who I'm going to go with.

The appointment at SCCA will be very interesting.. it'll be almost a full day on Friday, and I'll be meeting with the surgical oncologist and radiation oncologist, as well as the surgeon.

Sometime on Friday I hope to have a surgery date set.

I'm still in pain from the biopsy

2008-04-07T11:23:00.000-07:00

Not huge pain, but it's kind of throbbing. It's not infected that I can tell, plus the surgeon looked at it yesterday. It's as though the tumor is inflammed. Ha! Serves it right.

Plus, I have a tension headache again :(

A decision

2008-04-07T10:38:00.000-07:00

I've decided to schedule the MRI

T-shirt I received in the mail today

2008-03-25T18:11:00.000-07:00

Thanks Aunt Gayle!

MRI update and other chaos

2008-03-23T08:26:00.000-07:00

Well these last two weeks have been pretty crazy.. between moving, my last week at my job, a conference and the MRI mix-up, I'm wiped out! In fact, I'm wishing I didn't start my new job until Wednesday, but it's too late for that now.

So the MRI results came back last Monday. The nurse at the surgeon's office called and said it looked good. I asked her to fax me a copy and when I read it, I realized immediately that it was not me! It talked about last mammogram and MRI being done in 2005 and a lumpectomy scar from 2005. I called her back and she called the radiology office and when she called me back she said they were going to re-read it. The tech and the radiology office suggested it was just a mix-up in dates, since the mammogram date was 02 Feb 05 and mine was 20 Feb 08. I told the nurse that there was too much wrong with the report for that to be the issue.

On Tuesday, there was a potluck for me at work and I was talking with a couple people about the mix-up and quite a few recommended that I get a new MRI done at a different location, because even when it's re-read, how do I really know they are looking at my film? So, I started getting a little nervous about the whole thing, talking to a lot of people, making phone calls. I called the surgeon's office back and told them that I wanted the surgeon to call me to discuss this. I called my doctor and left a message asking for her opinion. I also called the radiology office, asking to speak to the radiologist. That one did not work, because they don't let patients speak to the radiologist, and I needed to go through the referring physician. I knew that was not a fight I was going to win, and since I was already dealing with a tension headache, I let it go.

On Wednesday, the nurse called again to say that the results came back and she would fax me the report. I asked her if she was comfortable that it was my report. She said yes, but I wasn't really trusting her since she missed the first one on Monday. She did admit to me that she only gave it a quick glance before she called me, but that did not really make me feel better. I asked her to have the doctor call me to discuss the report and the mix-up. Now, he only works 2 days a week, Tuesday's and Thursday's. She said he would probably call me on Thursday.

Thursday morning rolls around and I'm at my conference all day. I did not sleep well the night before, so instead of sitting in on all the lectures (I was a seat-warmer anyway, which wasn't needed, because we had a good turnout), I helped out with registration and questions. I called the office again to find out if I could get an approximate time when he might be calling me back. My phone was on vibrate, and I usually miss those calls. I was told that he was in clinic all day and would probably call between patients. Unfortunately, I did not hear from him on Thursday, and was getting annoyed and had pretty much decided that if he can't bother to call me back, then I did not want to be his patient.

On Friday, he finally calls and apologizes for not calling me sooner. He said he wanted to be sure that everything was correct and he had reviewed all of my films with the radiologist to be sure that everyone was on the same page. He said that the mis-read MRI was not me at all (no kidding!), and that he was comfortable that the new report is my MRI, based on the fact that he reviewed all of my films and reports with the radiologist and that I have the distinction of having more than one area of concern.

I asked him how often do these kinds of things happen and he said it was the first time he had seen it. He said that the radiologist had put the films up on the screen, for some reason had stepped out of the room, and when he came back, someone had pulled up another woman's MRI, and didn't close it and didn't tell him that it was there. I asked the doctor what quality control measures HE takes to make sure he's reviewing the correct films. In other words, if I hadn't requested a copy of my report, when would he have caught the error? He said that when I would have come back in to discuss surgery, he would have reviewed all of my films, starting with the first mammogram, and would have seen pretty quickly that the MRI report was incorrect. All of that being said, and after my discussion with him, I felt much better about the situation and did not feel like I needed to get a second MRI.

The MRI itself shows the tumor and the area of calcifications, and a third, previously unseen area under the areola. The MRI was not able to determine whether this new area or the calcifications area are malignant. Based on this information and the location of all the areas, he feels that a lumpectomy is still feasible.

I asked him how often he sees more than one suspicious area and he said in about 10% of patients. I then asked him about the research that came out that I heard on the news about women who are overweight and tend to have more aggressive tumors, and whether that article would change his approach. He said that there is a 95% chance of no recurrence if the areas are removed via lumpectomy and there are good negative margins, and radiation therapy is completed.

I still haven't made the appointment for the 2nd opinion. I was waiting for the MRI and result, etc. I did get a call on Friday from the doctor at Swedish and I'm going to call them back on Monday. I'm also going to see a doctor at SCCA who was recommended to me by a vascular surgeon who I used to work with at Madigan, who is now at Harborview. Also, his mother had breast cancer and eventually died from it, so he's another great resource for me and I trust his opinions and recommendations.

I have finally made the move from Olympia to Tacoma. I'm living across the street from my sister, which is awesome. Also, we just found out that she's having a baby boy and that is so exciting. Little Benjamin is due on my birthday in July! I love my little house. It's funky and old with a green kitchen floor and avacado countertops and fridge. My sister and I will carpool to Seattle every day and when she's on maternity leave, I'll start taking the bus or the train.

My new job starts Monday and I'm so excited to be working for the UW and in a great position.

These are the good and positive things that counter the bad ones and help keep my head on my shoulders. As my chiropractor said, I'm not in denial about what's happening in my life and I'm dealing with it in a good way. My body is not absorbing (too much) all of the stress I'm putting it through. I've been reading Eckhart Tolle's "A New Earth" and am working really hard on not feeding into the ego, and sinking into depression, but just letting it all go to the Universe. I have a friend who goes to Al-Anon (something else I want to do.. to sort out the remnants of my ex-husband), and she has a little stone with the saying, "let go and let god." I like that. Although, in my case it's "let go and let the universe." That's what I'm striving for in my life. Not only in dealing with breast cancer, but in dealing and living in my whole life.

Happy Easter!

In Limbo

2008-03-10T20:46:00.000-07:00

It's been 7 days since my diagnosis. I am feeling almost ambivalent about it so far this week. Maybe it's because I'm busy with packing and getting ready to move that it's just not at the forefront of my mind 100% of the time like it was last week. Oh, I'm still thinking about upcoming appointments.. an MRI on Thursday and I need to schedule a 2nd surgical opinion. I'm waiting until after the MRI for that one though. Plus my doctor hasn't sent the referral yet. I have appointments lined up this entire week with the chiropractor tomorrow and acupuncture on Wednesday

In the meantime, I am packing up the house again (I just moved in October). I am relieved to have finally received word today that I will get the house I want to rent, across the street from my sister. One of these days, I must really settle down and actually buy a house! This house is great though, with an already dug garden in the back and flower beds in the front. I can't wait to get my hands back in the dirt. The kitchen is very 60's with avacado appliances and counter tops and a bright green and white linoleum floor. I'm hoping to lighten up the wood cupboards a little bit and change the knobs.

I had an appointment with my therapist today. I'm so glad I will be changing insurance in April, going from 12 visits a year to 50. She pointed out that the last 5 months have been quite eventful in my life... my divorce was finalized; my supervisor/co-worker left, making me the most senior (although not a supervisor) employee assigned to MAMC; I accepted a great new job offer at the UW; I'm moving; and I have been diagnosed with breast CA. I mean, WOW. She told me about a study that assigned points to certain stressors/major events in one's life and once 100 points is reached, one becomes more susceptible to infectious diseases (colds, flu, etc.). I'm way over 100, but I feel very calm about everything.

Everything about this job and this move just feels right. I can't explain it except it's a gut feeling. I am completely at peace about it. For some reason, the Universe has thrown this "little" wrench into things. I don't know why. But I have a strong feeling that I need to be working at the UW and fighting breast CA at the same time. Something is supposed to happen, and I'm excited about finding out what it is. Also, my new boss is very supportive of me. She is willing to not only hire me at the beginning of this journey, but give me whatever I need in order to deal with my medical issues. She has offered 50% working time (minimum required to keep the benefits), working from home and as flexible a schedule as I need. I'd be crazy not to take the job!

Back to packing for a little bit and then to bed.

Cat

2008-03-08T18:40:00.000-08:00

Cat is my chiropractor and she is super amazing. In addition to doing gentle spinal manipulation, she also does muscle testing http://www.goodhealthinfo.net/herbalists/muscle_testing.htm

Today we talked about some other therapies to help down the road, such as acupuncture to help with the side effects of radiation and chemo. She also greatly reduced my stress/tension/migraine headache by working on my back, neck and head. When she did the muscle testing, I came up strong on everything, except for being overwhelmed by too many decisions. She helped remove some of that energy block and got things flowing again and I feel so much better. I was able to have a good time with some of my family after my appointment.

She also referred me to a new massage therapist in Tacoma for after I move and change insurance.

All in all, I am very grateful to have a practitioner like Cat to go to, who can really help with the emotional and physical stress cancer is putting on my body. I set up a bunch of appointments for the rest of this month since my current insurance ends on the 31st. Then, I start all over again with my new insurance. woohoo!

too much information in my brain - massages - sick kitty

2008-03-08T08:30:00.000-08:00

I suppose it's normal to go through bouts of depression... I don't know if I feel depressed so much as overwhelmed. There are just so many decisions to make about the profound impact this disease will have on the rest of my life. I am doing my best to keep all of these thoughts in the back of my mind, since I can't make any decisions now. If I let them consume me, I might as well just stay in bed all day.

I have noticed that I've been very forgetful. I forget to clean the cat box, I forget things people say to me. I forget to write down questions to ask the doctors. It's just too much sometimes.

At the moment, I feel like my head is going to explode. I haven't had headaches in so long and I just hate feeling this way. I will see my chiropractor this afternoon and she will help immensely. I also must remember (somehow) to ask her for a referral to a massage therapist who will be on my new insurance and is in Tacoma. It will be too hard to see my therapist in Olympia after I move.

I think I'm also going to see another massage therapist in Tacoma who I know of who does not work with insurance, but her rates are really good and I could get some extra tension-reducing massages.

I woke up at 2:30 this morning to my kitty, Mea, sneezing up a storm. You know cats aren't feeling well when they just lay there and let you pet them and don't purr. I gave her some antibiotics and I think I have enough for a 10 day course. Hopefully she will be feeling better soon.

I don't want to go to school!

2008-03-07T06:11:00.000-08:00

Man, I'm tired today. I'm going to be late to work since I need to leave in 5 minutes and I'll I've accomplished is making coffee and cleaning the cat box.

I wish I could just stay home and stay warm and hide away from the world today.

But.. I need to not use my PTO. I need to keep at least 80 hours so when my last day at work comes (March 21) I'll get an additional full paycheck. That goes into savings for living expenses if I need them for taking time off down the road. If not, then I'll need that money to help pay all the co-insurance.

Luckily when I change jobs, my co-insurance will go from 20% to 10% starting in April.

Pink

2008-03-06T22:16:00.000-08:00

Ok, last post before I go to bed. Here's the question: Now that I have breast cancer, am I suddenly required to be an active advocate for breast cancer awareness/cure? I have to admit, taking up the pink ribbon banner makes me feel slightly hypocritical. While, I of course support finding a cure for breast cancer, being an advocate is just not something I've ever seen in my future. I'm not a big fan of putting myself out there in that way.

I've decided to do things this way: Right now I'm focused on my treatment and getting the best possible care to not only get rid of the cancer, but trying to make sure it doesn't come back. After that, when I've reached "survivor" status, I will have the time and energy to consider advocacy. In the meantime, I wouldn't be opposed to a pink t-shirt :)

Phone call from a new friend

2008-03-06T21:32:00.000-08:00

I had gotten the name and number of a woman who just had a mastectomy from a co-worker. She was seen at Swedish and we thought she had surgery done by the surgeon at Swedish I've been referred to. It turns out that she (Beth) had her surgery by a different surgeon, but she was still great to talk to.

Beth told me to just breathe and be patient, even though I'm feeling so overwhelmed by everything. She said there is no point in seeing an oncologist until after I have surgery, which makes sense to me. All the oncologist can tell me at this point are potentials and options and possibilities. I don't want to hear any of that stuff. I want to have my surgery, find out if the cancer has spread, and come up with a plan. Beth also said to definitely get the MRI. It's important and probably the surgeon at Swedish won't see me without it. So, I think I will call the surgeon I saw today and see if I can get that set up. Actually, I'm going to email my family doc, who is on vacation until Wednesday to see if she should set it up or if the surgeon should. I'm also going to call Swedish tomorrow and just verify all of that. If the surgeon in Seattle wants an MRI as well, I don't see the point of seeing her until I have that.

Another thing she mentioned was a test called Oncotype. It's for women with breast cancer with a negative node biopsy and positive estrogen receptors. I have the positive receptors, so I'm halfway there. The test can predict the chance of recurrence as low, medium or high. Low is 7-8% chance of recurrence. That's what Beth has, so she doesn't have to get radiation or chemo. Even though I don't know if I qualify for the test, I am going to call them tomorrow. I want to find out if my new insurance will cover the testing.

We talked a lot about sleeping. I have been really surprised this week at how easy it is for me to sleep. I don't sleep that well anyway, but I've pretty much slept through the night the past 3 nights. Beth is the same way. It's a coping mechanism for the stress.

Speaking of sleeping, I need to get some. It's nice to know I have someone else to add to my list who has been down the road I'm about to go down and who I can call with any questions or if I need to express my frustration and upsetedness to someone who knows what I'm going through.

First visit with the surgeon

2008-03-06T21:17:00.000-08:00

I was surprised by how open the surgeon was. He talked about the different options, but is inclined to start with breast conserving surgery, which works for me. However, before that determination can be made, he wants me to get an MRI of both breasts just to make sure there aren't any hidden lumps that weren't seen on mammogram. Since I have two areas of concern, the tumor and the micro calcs, if any others show up then I'm most likely in for a mastectomy.

The lumpectomy surgery would consist of taking out both areas in one large excision and also doing a sentinel node biopsy to see if there is any cancer spread to the lymph nodes. During the surgery, the pathologist will be able to determine if the node is positive or negative. If it's positive, they will take out about 1/3 of the lymph nodes.. basically all the nodes in the axilla. Although the surgery would be under a general anesthetic, I would go home the same day.

Since I plan to see another surgeon for a 2nd opinion, we didn't make any definite plans for the MRI.

Oh, and he said it is normal for the tumor to feel larger and closer to the skin. The biopsy caused the tissues to swell. At least I'm not imagining things!

I have breast cancer

2008-03-06T20:02:00.000-08:00

That's not a very nice thing is it? But, it's a part of my life now...

This has been a very crazy, busy week since finding out about my diagnosis on Monday. Between family, friends, doctors, and women I don't even know, I don’t think I’ve ever talked on the phone so much in my life as I have the past 3 days. I'm grateful for the attention though. There is nothing worse than being diagnosed with a terrible disease and then never getting a call or email.

The pathology report from the biopsy has some encouraging news in that the estrogen and progesterone receptors are positive. This means I can be treated with anti-neoplastic drugs such as tamoxifen.

Today, I have my first visit with a surgeon in Olympia. I have received some excellent advice and support at work and I feel that I am prepared to discuss the different options including lumpectomy vs. mastectomy, radiation and chemo options.

Ok, so this is weird. Before I had my first mammogram, I did not feel any lumps. My doctor had done a breast exam the week before and she did not feel any lumps. During the week between “abnormal mammogram” and “biopsy” I felt around looking for a lump. I finally found it after the ultrasound was done and realized where the radiologist was looking. I mean, I had to kind of dig for it. Now that I’ve had the biopsy done, this lump is so completely obvious on the underside of my breast, I don’t know how it could have been missed. I’m wondering if the trauma to the tissues associated with the biopsy somehow made it stand out more. Or, now that it’s become the object of so much attention, it’s just more obvious. I don’t know. Another question to ask today.

I made a 3-ring binder to organize this phase in my life. Lots of tabs with names like, "diagnostic reports" "pathology reports" "healing retreats" "correspondence" "other women with breast CA" "surgeon notes" It goes on..but it's a good resource for me to make sure I have all the information I need.

One of the challenges I'm facing is where I should get treatment. I'm currently living in Olympia, about to move to Tacoma, and start a new job in Seattle. So, hmmm... do I get treatment where I live or where I work? Do I get some treatment in Seattle and some in Tacoma or Olympia? I don't know right now. I'm seeing one surgeon in Olympia and one in Seattle, so I'm just going to go with the person who makes me feel the most comfortable.