I'm a creature of habit! Mostly good habits, but habits nonetheless. Today I meet with my doctor. It is throwing off my routine because I shouldn't meet with her until next week before treatment, but she will be on her family vacation on Martha's Vineyard. I was there once many years ago and absolutely LOVED it, so I can see why it is a yearly trip that she takes with her family, her sister's family and her parents. I arrive at my appointment on time and check in...$30 copay. UGH...why can't all of the appointments be under one big chemo umbrella? Every time you walk in to see a doctor you have to fork out cash. It's like eating at an ala carte restaurant...annoying. I want the full entree and main course to be a full package with free refills on my Dt. Coke.
There's a new guy taking my stats today. Very nice man, but he's a talker...well, he talks a lot about himself and asks few questions about my health. I currently know that he started walking/running recently, wants to do a marathon someday, shops at the second-hand store for workout clothes because he keeps losing weight and doesn't want to spend money on clothes that he won't wear for long, he thinks that walkers should be able to "walk" the marathon, has considered registering as a runner and then will walk but is afraid he won't meet the time limit and they will open the streets, his wife doesn't really workout, etc...I don't think he has even taken my blood pressure yet. :) Seriously, he is nice though! I'm running a low grade fever, but nothing that he seems to be all that concerned about. Nurse Jackie stops in to say hello and she is thinking I'm getting chemo today...heck no!! It's only been two weeks! Let's not rush me!
What is nice about having appointments close to home is that the locations are small and the waiting is even smaller. As quickly as my stats are taken, Dr. Robinson is in the office with me to talk and do an exam. We chat about her vacation and family. I pull out my iPhone and notes that I take on my iPad...it is great that the two are in sync. We go through my questions and she answers each one... "Why am I out of breath so quickly?"...chemo! "Why are my eyes watering so badly that it looks like I'm crying?"...chemo (Taxotears). Why is my fatigue out of control?"...chemo! "Why does my throat hurt all of the time?"...chemo! I guess you can see where this is going. While chemo does wonders, it also makes you wonder and causes so many side effects. UGH! I then ask if I am able to get a massage...whoo hoo...the answer is absolutely and as often as I like! She actually encourages it. I knew I liked her for a reason...this just adds to the list.
Finally...we talk about Neulasta...the day after chemo shot that is kicking my chunky ass. To say that I have had a tough time with Neulasta would be an understatement. Days are spent in bed, tears roll down my face from pain, it hurts to move, to think, to breathe, etc. Strong pain killers have no impact on the pain. Basically, Neulasta is causing more pain than good. The reality is that we do not actually know if the Neulasta is the issue, but it is getting 90% of the blame. There is a good chance that the pain is caused by a combination of Neulasta and Taxotere, but we really don't have the facts yet. Dr. Robinson and I have an intelligent conversation about the drug and what it would mean for me to go off of it. It is used to boost white blood cells which are a part of the immune system that is used to defend the body against infectious disease and foreign materials (thanks, Wikipedia). While on chemotherapy your immune system is at risk. If my white blood cell counts go too low, I could easily get sick and then not be able to stay on my chemo routine. However, the risks outweigh the benefits with this shot - for me. So, she has decided to do a "live study" and I agree. Moving forward I will complete weekly CBC tests on Wednesdays. A complete blood count is used to monitor my white blood cells and many other things. By doing a weekly test we will be able to track my levels and see if I am at risk of jeopardizing my immune system. If we find that my blood counts go too low I can either go back on Neulasta or on Neupogen. Neupogen is similar to the first drug, but lower dose and given over multiple days. Bad thing...I would have to give it to myself. I am already making a mental list of nurses in my WE. The decision is made to go in this direction. Fingers crossed that my blood counts and spirits stay high!
Next, she does her exam. I'm still not convinced that the chemo is doing its job. I can't tell if the tumor is shrinking. To be honest, I really don't trust myself anymore. I have done years of self exams. I take pride in knowing my body. I have always thought that if my breast cancer comes back I would find it immediately. And here I am bald and going through chemo for a 9 centimeter mass in my left breast with multiple node involvement. Not a day goes by that I am not mad at myself for not catching it earlier...how am I a breast cancer survivor that was diagnosed with stage 3 breast cancer for the second time? How did I not know that my body was fighting against me? How did I get cancer again? Certainly, I shouldn't be the one checking my body...I clearly have no clue. Dr. Robinson is well aware of my fears and my lack of trust in myself...it is discussed each time that I have seen her. She is actually shocked that I am unable to tell the difference. She truly feels that the chemo is doing the job that it was "hired" to do. She steps back, raise both hands to give me a double high five for the results. Of course I return the high five, but there is so much of me that is worried. I think I need real proof...a scan, MRI, or something that will show me that it really is working. Hearing it and seeing it are two very different things for me.
Once I am done with my appointment I go to the front to schedule my weekly blood work, next round of chemo, etc. I'm still being complicated and using three locations along this journey. Some things are done at the main hospital, blood is drawn at the Homer location and chemo is done in Wheaton. I certainly know how to make things complicated. I enter all dates and times into the calendar on my phone. Apple is keeping me organized through this journey.
I grab lunch for on my way home and bring some for my Mom. While I was gone she was cleaning my home. Her help around the hose has been invaluable! Today she conquered the second bedroom that has turned into a walk-in junk drawer. The room that I rarely open, the cats are not allowed in, and things get tossed in when there is no place for it or when I am having company at my house. She did a great job and found some nice little treasures along the way. I spend the rest of the day/evening working and trying to catch up on all that needs to be done this time of year. My bed is turned into a mini office space at night. Pillows behind me to keep me up and a pillow on my lap to prop my computer. I'm spending a lot of time in bed. I simply wish that sleep would come easily to me.
I finally put the computer down late night and attempt to sleep.
XOXO,
Sue
If you or anyone you love is facing cancer PLEASE reach out to the American Cancer Society. Nobody should face cancer alone. http://www.cancer.org/ or 800.227.2345. 24 hours a day 365 days a year. WE are here for you.
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