Today is the last in a series of four rounds of Adriamycin and Cytoxan. I had been looking forward to it as the halfway point and thought I would be happier to see the day come. But instead I focus on the fact that after a 3 week hiatus I am onto phase two.. weekly Taxol for 12 weeks. And then I still won’t be done, it will be onto radiation. On the AC I had two good weeks out of three the first two rounds. This last round honestly left me feeling pretty exhausted right through. I’ve now developed allergies (never been a problem in the past) where my nose runs and my eyes weep constantly. Claritin doesn’t help and I’m hoping my Oncologist can recommend something else today. We have a lot of family events coming up in the spring – birthdays, one daughter graduating college, the other grad school, visits from family. I had big plans to celebrate these milestones, but not knowing how I will feel on weekly chemo, things are kind of hanging and that makes me feel unsettled.
When I started journaling about this whole thing I was determined to keep it light and upbeat but I’ve come to understand how disingenuous that is. No one can be positive 100% of the time, no one should feel they have to be. Of course I could choose to only blog when I am feeling positive, but I think more people can relate to the fact that in all aspects of life there are good days and really, really bad days and this fact is no less so when facing a life threatening disease, no matter how brave you want to appear to others (or how brave you think others need for you to appear). And I also think when someone comes along and reads these blogs they need to know that their negative feelings are real and valid and normal! And so is gallows humor if that’s what helps. Most days I can be depended on to make a really tasteless comment about cancer that will either crack someone up or completely disgust them. When it’s the former I appreciate their understanding of my comedic brilliance. When it’s the latter I channel my inner honey badger cuz honey badger don’t give a sh-t!
Today I am going to try and channel my inner glowworm and spread some sunshine.
We have 5 seasons here in Maine. Winter, Pothole (aka mud season), Spring, Summer and Fall. Fall is my absolute favorite but spring is a close second. I start planning for my garden now. We have had such a mild winter that I think it will be an early spring! Not sure how I will be feeling during planting time. I have had a little more fatigue with each successive chemo treatment and will be starting the 3 month course of weekly Taxol mid March. I’m sure the smaller dosing will mean less in the way of side effects. I expect some aches and pains, that seems to be the most common. All the more reason to get outside and keep moving! I’ve got this great new straw hat to keep the sun off my bald head and I can’t wait for an excuse to wear it. So.. besides my small herb garden, I want to put in a kitchen (salad) garden with tomatoes, peppers, onions and cukes, zucchini and summer squash. Loads of flowers of all kinds to attract butterflies and hummingbirds. I do something different each year in the front of the house and want to try sunflowers this year out back. My perennials need a good thinning out too. The bird houses and feeders need cleaning and filling. I.cannot.wait.to.get. started.
A more apt title would be All My
Heirs Hairs. That would be a great name for a soap, no? We all know that many types of chemo cause hair loss. Some cause partial hair loss, some cause complete hair loss (as in everywhere). So, it’s not unexpected. It’s not even all that terrible once you allow yourself to accept it. It’s even kind of fun experimenting with different looks. I thought I would be sad when my eyebrows went, but there are enough of them hanging on that I can fill in with a pencil. My eyelashes are thinning quite a bit too, but makeup helps. All in all, the reality has not been as bad as the anticipation, and that has been pretty much the case in all aspects of this journey with cancer. But some losses I just wasn’t prepared for. I wasn’t warned about it. I joked about it months ago, not thinking it would really happen, but it has and it’s terrible. Really, really awful!
Of all the hairs I have loved and lost the ones I miss the most are my nose hairs. Drip.. drip…
Seriously. Someone should have mentioned it.
Someone gave my name to this wonderful organization who sends a head wrap to any woman suffering hair loss due to a medical condition. The wrap, or “hug for my head” I received is absolutely beautiful. I love it and will wear it often. What was even better than the hat was the card signed by every member of the staff with a personal message to me. It will be kept and cherished along with all the cards I’ve received from friends and family. If you’ve never heard of them, here is the link. I would like to make the donation of a hug or two myself 🙂
So life lesson this week was no one wants to hear a cancer patient complain. Even a tiny little complaint will be met with a panicked “STAY POSITIVE”. I think I am fairly positive most of the time. I try to focus on the fact that I have had very few of the really horrific side effects that so many others in my boat suffer from and for that I am grateful. Doing a quick mental inventory of the people who I interact with daily, both in person and otherwise, I probably complain far less than most, especially about health issues. When I commented to a relative that I was struggling with my concentration and fatigue, the response made me feel like I should keep those kinds of things to myself unless I am sitting in my physician’s office and since I always have a family member with me during oncology visits, I now feel like I should temper the complaints even then, lest I upset someone. When I vented to some friends about how that response made me feel I was given a laundry list of excuses for the relative, again making me feel as though I should have kept my feelings to myself. One lesson I am taking from this is to be a good listener and not try to minimize other people’s feelings or, worse yet… tell them how they should be feeling. The second lesson is to stay positive. Even if you have to lie 🙂
Not the movie, though I did end up seeing that and it was okay. Not the tear jerker I expected. Or maybe I’ve toughened up over the last few months. Could be. What I’m talking about are my odds of finding the
write right word when I’m trying to get a thought out. I’ve always had a way with backward talking (I’m the only person I know with myface and spacebook accounts) but I always catch myself as the wrong word is slipping out. Lately who the hell knows what I’ve been babbling about? Chemo brain? I’m not sure if that’s even a real thing (as in medically acknowledged – trust me, I know it’s real!) or an urban legend. Another good term is brain fog. I started another blog and I’m not sure why. I got as far as naming it. Now I have to keep checking to make sure I’m in this one when I post something. I think I was going to blog about ebay. It’s becoming a pita to have to keep switching over and that one remains blank. I could probably combine them, but that would take effort. Bah. I’ll get to it. In the meantime it’s taking me all day to accomplish the smallest thing. Like laundry. Reading is nearly impossible and watching a television program sometimes takes more than one time through if I care enough to follow the storyline. Today I grocery shopped and was quite impressed that I remembered (almost) everything and with no list! Then I realized I left the house with no eyebrows. FML.
This is the weekend following my third infusion of the AC part of my treatment. As before, I haven’t had any terrible side effects but I am exhausted. Bone tired. I know I would have energy if I attempted to actually do something, but I feel like just giving into it, so I am. I am ignoring my little business, other than answering emails and packaging up orders. No new listings, no sales. I am ignoring the piles of tax receipts (really.. would the IRS come down on a CANCER patient if I’m late this year?) and trying to decide if any of my cancer related expenses are legitimate write offs. Yep..back on ignore. I should bundle up and get outside. I should exercise. I should clean, cook or organize something. I know I would feel better and probably sleep better if I did. Instead I will play a few more games of pogo yahtzee, cruise the message boards, catch up on the blogs that I follow and if I get really ambitious, shower and change into a clean pair of pajamas. This afternoon I will curl up under a quilt and watch the remainder of season one of Shameless with William H. Macy. This is a Showtime series about a raging alcoholic and his offspring. He will do anything for a drink or a fast buck. In one episode he thought he had testicular cancer and shows up at a breast cancer support group, where all the women were bald. It was hilarious, as is much of the show. Even when it should be uncomfortable or sad it manages to be funny. At least to me and my exhausted/chemo addled brain. One more day of mindless, Shameless, inactivity and then I’m going to show some ambition. Or not. I should probably work in a nap at some point…
And I was the baton. My mom brings me for my treatments every 3 weeks and soon that will increase to every week. The cancer center is 30 minutes from my house but only 15 from hers. My house is also 15 minutes from her’s, but in the opposite direction. Normally she picks me up making it a 45 minute trip for her. She’s happy to do it but I feel kind of bad, especially in bad weather. Yesterday my dad collected me, dropped me at mom’s and she took me to the center. Later we went back to her place where my husband picked me up after work. I’m happy to report no one dropped the baton and we were even fed and got to visit with my sister and her significant other! It was a nice day in spite of the reason for it.
Chemotherapy went well, blood work looked good and as usual the nurses were great. I had a new one this round. She was very efficient but joked around and the time flew right by. Though this was my 3rd treatment it was the first time I was actually in a chemo bay. I had a nice corner unit that was warm and sunny, a comfortable recliner and television. I had my “chemo bag” with a few comforts from home and a novel. Oh I should mention, not everyone was comfortable. My mom kept sliding off the poorly designed couch and was finally given a straight chair to prop her legs on. I was teasing her it’s because she’s so short, but that couch did look pretty uncomfortable. I offered her the recliner, but for some reason no one ever takes me up on that. Though the bays have a little privacy in the way of curtains you can hear what’s going on around you. One lady started walking from bay to bay, wheeling her infusion pump along, asking people about their diagnoses and treatment plans and going into great detail about hers. Mercifully she ran out of steam before reaching me. There was a bit of moaning and complaining going on and you didn’t have to look around to know it was coming from the men. My nurse said that’s usually the case and we started chatting how men generally do not take illness and pain quite as..umm.. stoicly as women do, which prompted this little joke from her:
A husband and wife presented to the hospital in labor. Once settled in they were told about a new experimental option where a percentage of labor pain could be transferred to the father of the baby allowing him to share in the experience while making it a bit easier on the mother. They both agreed. With the next big contraction he got 25% of the pain and exclaimed “That was nothing”, so they upped it to 50% for the next one. He still insisted it wasn’t bad at all and was starting to wonder what all the fuss was about. Finally it was upped to 75%. The baby was born, mother was happy with the small amount of pain and her husband was still amazed at how easy it was. Later when he returned home he found the mailman dead on the porch. HA!
I did end up fessing up to only taking half the prescribed dosage of the steroid following my last infusion. It wasn’t deliberate and I’m still not sure how I managed to mess it up, but I didn’t have that big steroid crash that left me feeling so bad the first time around, nor did I have the terrible acne that was attributed to the steroid. My appetite didn’t rage out of control and I slept well. I was prepared for a lecture and a list of reasons I had to take the higher dose, but am happy to report I can remain on the smaller one. Any time I can take less of any medication, I’m all over it, but especially this. I like to call it Forrest Gumping when someone in the family does something kind of boneheaded but it works out to their advantage. So this week I am proud to say I Forrest Gumped my way into less medication and less side effects. Chocolate anyone?
I was reading a blog this morning by keepthecalm, where she mentions the laundry list of drugs she is on and I had to comment. We spend a life time avoiding cancer causing poisons. Stay out of the sun, don’t eat foods with tons of additives, watch what you put in your body and on your body, eat organic, load up on antioxidants, etc. etc. You would have to live under a rock to not know all the things that cause cancer. Yet, you get cancer anyway. You do all the right things, you try to eat right and exercise, get plenty of rest, and either family genetics or just bad luck sneak up on you and bite you on the ass. Some things you just can’t predict, avoid or outrun. The irony is in the cure. To combat the cancer you voluntarily allow doctors to pump you full of poisons on a regular basis for months. You lie still while they blast you with (cancer causing) radiation, you subject yourself to MRIs, xrays and full body scans.. more radiation, more over a few months period than many people have in a lifetime. You read the short and long term side effects of the medications and find out that many cause cancer. Yup.. I will cure my breast cancer, but now I’m at a higher risk for uterine and ovarian cancer. My previously healthy heart may be weakened by the chemotherapy, I could have long term numbness of the hands and feet. Yet what real choice do I or any of us have? Better to kill the devil we know than worry about the one that may or may not rear it’s ugly head down the road. And if it does, we will use more poisons to kill that one and worry about the long term effects of those.
It’s not often you get to use the word brouhaha in a sentence.
As a current breast cancer patient I am sure I’m benefitting from Susan G. Komen, so I have been feeling a bit hypocritical about my rants over the past couple of days. I’m not flipflopping on my position, however. I still feel they were wrong and I’m still happy that Planned Parenthood got so much support in response. I’m still not sure how wrapping cancer up in a pretty pink bow helps anyone and I felt that way long before my own diagnosis.
If using pink kitchen gadgets and festooning yourself in pink ribbons makes you feel like you are doing something, that’s great. If a small portion of what you spend on those items actually goes into breast cancer research, even better. Pink handguns? really?
I’ve never understood how packaging artery clogging fried chicken in pink buckets and wrapping products made with cancer causing chemicals in pink bubble wrap exactly helped breast cancer patients. I bet it did help the companies who directly or indirectly cause cancer feel better about themselves (and make a lot of money off a public who can’t seem to see beyond the pink). I am not disputing the Susan Komen foundation has done a lot for breast cancer awareness. Have they done a lot to find a cure? I have no idea. My cynical side tells me there is no money in a cure.
If anything this whole cluster has reminded me to look really carefully at where funds go (and don’t go) before donating to any organization based on an emotional reaction. That’s not a bad thing.