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 :)

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!

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.

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!

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.