Cancer, Christmas and my Mental Health

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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!

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

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

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!

It is done

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

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!

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..

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

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

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

The rope is thinner than it appears

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

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

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

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

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

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

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

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...

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

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

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

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

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

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

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

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

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

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?