chemotherapy

All My Heirs.

Posted on by mainelyhopeful

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.

Shameless laziness

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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…

Yesterday was the relay for chemo

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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?

If you are a fan of irony

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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.

Today I played the cancer card

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I got one of those annoying phone calls from an obnoxious telemarketer excitely telling me I had WON. He told me to grab a pen and I dutifully pretended to. Then he blathered on and on about my prizes while I filed my nails.  Finally.. the rub. I had to come (with my husband) to claim my prize and sit through a quick demonstration.  Now normally I cut these jokers off at the pass but I let this kid go through the whole spiel. And then I said “Oh next week? I won’t be able to make it. I’ll be receiving cancer treatments.  The week after? Sorry, I’ll probably be too sick”.  Awkward silence.  “Matt? are you still there?”   click.

I’m easily amused these days.

Look good, feel better? Not so much.

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Today I went to the Cancer Center to participate in the Look Good, Feel Better program. First, let me start by praising the program and the volunteers.  The volunteers give freely and generously of their time and were so friendly and upbeat.  They gave skin care and make up demonstrations.  (Apparently I have been doing it wrong for 35 + years). They even cut and styled two wigs.  We all left with make up and skin care products worth well over $200.00, donated by top brands. So what’s the problem you ask?  I went into this feeling pretty good.  When I looked around my heart kind of sank. Many of the other women looked like.. well… cancer patients.  Maybe I’m delusional and I do, too, but I really don’t think so.  And then, as women do, everyone started chatting.  There were the usual pleasantries, but a lot of talk of diagnoses, treatment and prognosis.  Not much of it was very positive. One lady asked me how I dealt with depression and I answered honestly that I haven’t experienced any (yet?).  She looked kind of skeptical.   Before we left one woman asked if I attended the support groups at the center.  They are held one Wednesday evening a month and I had thought about maybe going in the spring.  I’m not fond of driving all that way in the winter, at night.  Now, I’m rethinking that. Maybe I’m the world’s most selfish breast cancer patient but if today was any indication of what those meetings would be like, I cannot see myself voluntarily sitting through them.  I just can’t surround myself with cancer and sadness, depression and anger.  I was told if I ever have blood drawn or go to the ER to be sure to identify myself as a cancer patient and I kind of bristled at that.  Yes. I have cancer. I also have green eyes, a tendency to migraines and an irreverent sense of humor. None of those things on their own define me.  I refuse to be defined by a temporary medical condition and I don’t want to be around people who define themselves that way.  On the other hand.. as soon as I started this blog, I immediately searched for other blogs about breast cancer, chemotherapy, women with cancer.. and I follow several.  Not all are cheerful every day, but all make me smile or comment. Most of the bloggers that I follow are hopeful and see the humor in the same things I do.  Some are very spiritual and I find comfort in reading their words.  Some are brutally honest about not so great medical results, but not one has ever left me feeling so dark and sad as that meeting today. I can’t explain it but then I’ve never claimed to make sense.

I don’t know what I expected to get out of today. It seemed kind of rude to turn down such a generous offer and I thought it might be fun. Some of it was, but I left carrying the little red makeup bag that identified me as a cancer patient in case anyone needed clarification, a headache and a lump in my throat. And my wig was choking me.

The magic of ordinary days

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This morning it looked like a fairyland outside. We had rain yesterday, along with snow and some sleet. This morning the trees were covered with ice and the sun was shining.

Too nice to stay put, so we went out for lunch (I had a gloriously greasy burger and fries without the usual side of guilt), did some shopping then went to see Liam Neeson’s latest movie, The Grey. It was awesome! Go see it!

Finally a trip to the book store where I cleaned house! I got 9 hardcovers and the most expensive thing was the tote I bought to carry them home in.

For the whole day I didn’t once think about cancer or treatments and I even managed to forget I was wearing a wig.  I should do this more often and there is no reason not to. Working at home has always been a bit isolating and even more so now.  Right after my treatments, even though I feel well most of the time, I don’t have to be anywhere and it seems prudent not to expose myself to the germy public in the days immediately following an infusion if I don’t have to.  Before I know it, a week has gone by and I haven’t left the house at all.  Then I have to force myself to.  I’m going to stop being so cautious and get out there more. If I get sick, I get sick.  Six months is too long to play hermit.

Today’s giggle:  I must have been on automatic pilot when I got ready to go out today.  I stepped out of the shower and saw that I had plugged in my curling iron.  I should put that away for now, along with the hairspray and gel.

Making do

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When we arrived at the cancer center there were these huge blowers in the lobby. Didn’t think anything of it until I saw several groups of men in hard hats going through the doors to Medical Oncology. Had my lab work and was taken back for the nursing assessment where I was told the place had been under water yesterday!  A pipe froze and burst and they were shuttling patients to the hospital all day for chemo. Today they had made accommodations on site, so after the nursing visit I waited to see my Oncologist who was waiting on my lab results. The flooring had been pulled up on in the exam rooms and the baseboards removed. There was a lot of hammering and sawing going on and those huge blowers everywhere.  What is usually a very peaceful space was complete chaos. When the doc finally got my results and came in to speak with me she was asking me the same questions she had asked at my interim visit.  I answered them but after a few minutes couldn’t resist saying we had gone over all that last time. She didn’t realize I was here for a treatment or was so frazzled from the chaos that she forgot!  It was nice to see her in that human light. Not that she is the type of doctor to hold herself “above” her patients, but still.. it made me laugh. We finally got upstairs where they had transformed a conference room into chemo bays (but with no privacy at all). One man was snoring so loudly I thought he was choking and wondered why no one seemed concerned.  Another was getting sick and they had to stop his infusion and the Oncologist came to speak with him. They were just starting it up again when we were leaving a few hours later. My meds were not there, had not been ordered, so we had to wait for a bit. Once I got them it all went smoothly. I was sad to see  the man in the chair closest to me was a teacher from my high school. I don’t know what kind of cancer he has, he didn’t say and I didn’t ask.  He and his wife and my mother chatted the whole time we were there and when I was leaving he asked when my next one would be and wondered if he would see me again.  It was a very different experience from my first one, but the time flew by and I was grateful not to be shuttled to another building like the poor patients were yesterday.

Today was also the first time since my hair loss that I ventured out without a wig.  I have a beautiful wig but my scalp is still very tender and even with a liner it hurts. I have been wearing it more out of consideration for others. At home I wear one of those really soft sleep caps or nothing at all.  I even stepped out onto the deck with my naked head and quickly remembered the date!  Not going to do that again.  Today I wore a really pretty blue scarf that just happened to match my outfit. I felt more confident in that. I am certain even the most casual observer can tell I’m wearing a wig and it makes me self-conscious. Strangely, wearing a head scarf did not. Go figure!

I just want to add a funny that one of my Daisy girls posted for me today.  Thanks, Gumbo!

 

Shit Girls Say to Other Girls With Breast Cancer

Round two today

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My mother is picking me up shortly for the 30 minute trip (in the snow) to the cancer center.  This is round two of sixteen.  I feel much better going in. Last time around was two days after Christmas. I was exhausted, nutritionally a hot mess and scared of the unkown.  Still, everything went fine and I expect the same today. I’ve been eating better and trying to exercise every day. I had a good work out this morning, got my house in order and my orders out for my small ebay business.  I feel strong and optimistic. Bring it chemo.

I am consumed with having cancer today

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I don’t know why now or why I can’t seem to stay off the cancer sites or stop reading the reams of materials I have.  Maybe because my next treatment is coming up and I have a feeling I won’t be as lucky this time around. I keep hearing how the effects are cumulative and  recovery time between each is harder as time goes on. I think I’ll give myself the rest of the day to dwell and then I’m over it.  Until next time.