Friday, November 11, 2016
Ups, Downs, and Updates
What's up? Well, I just celebrated another birthday, so that must mean something is going right! It's my last year as an official "40-something." Unofficially, this may go on for at least a few more years. :)
I also just added shampoo to my grocery list. Yea! It's satisfying to use shampoo on my head as opposed to washing my entire virtually-hairless body with the same body wash. I've been gradually getting some hair back since getting off of Taxotere, although it's too sparse and a lot more grrrray than I remember. Not ready to rock this look just yet, but fortunately, the weather is cooling off here in Texas so it's still headwrap season as far as I'm concerned. It seems I'm always cold anyway! Perhaps when Spring comes around, I'll feel more comfortable both physically and psychologically to go without any headwear. And maybe my hair will be long enough and cover enough scalp to justify a color job.
I still have no eyebrows or eyelashes. Why this is, I really don't know, but I try not to think about it too much. I can't give too much thought to my appearances, or I'll cry. (I also can't bear to look at old pictures from my past, or I'll cry.) Issues. Not dealing well with them lately. Try as I might to wear nice clothes and pretty headwraps and jewelry and such, I never feel good about myself and how I look. And that's because I look like death warmed over. I look like your stereotypical dying cancer patient: thin, frail, and cachexic (if you're not familiar with it, look it up ... it's your new word for the day. You're welcome!) My neck and chest and hands are sunken in, and I suffer from noassatall (There you go, another new word. Just kidding, I made it up, but you have my permission to add it to your vocabulary because it's a good one!) I am still dealing with over-watery eyes which has caused me to stop even trying to wear any eye makeup because it comes right off in a fairly short amount of time. As I've said before, I'm never far from my tissues because the water just pours out and sometimes people mistake this for tears. Which of course it is, except I'm not crying. I've self-diagnosed this as lacrimal duct stenosis, but am I really up for the procedure of having stents inserted in my lacrimal ducts?? Sometimes I AM! but most of the time I am not, so I live with the condition and resent my circumstances much of the time. Wow this has really turned into quite the rant!
I think if it weren't for my kids and their activities and events, I just wouldn't go out much. As I've said many times before on this blog, cancer has taken so much away from me. There is really little of the old me left. I'm in here, but I miss my old self. I miss hair, eyebrows, mascara, happiness, energy, strength, beauty, vacations, dancing, love, sex. I miss having a good memory and the ability to think clearly. I miss feeling respected. I miss being team photographer. I miss being a bus chaperone. I miss big family gatherings at my house. I miss the ability to wear a variety of shoes. I miss being outgoing instead of mostly keeping my head down and avoiding eye contact. I miss the days when cancer wasn't such a huge part of my life.
Well now I've gone and made myself sad. I know, I know, I need to focus on what I CAN still do. In my head, I know this to be true, but it's not always easy. Good thing I still have opportunities that MAKE me get up and out of the house, am I right? I am down, but things could be worse. For some reason, I am still here, having another birthday and checking my "sick" teenager out of school and typing this blog post on my new, big, and bright birthday-gift laptop. I voted. Last week we got to see David play his final freshman football game and hear his name called a couple of times over the stadium speakers. Go Mustangs! Now he's moving on to a completely different sport, wrestling. We watched as Bethany played percussion at her last high school football game and we proudly viewed her band make it to the finals at an area marching contest. We visited and toured a way-too-far-away campus as she considers where she will attend college. Go Warhawks! We excitedly check the mailbox for the acceptance letters and scholarship offers that are starting to arrive. Last night we enjoyed a concert by the University of Houston's Spirit of Houston and visited briefly with my college girl, Christa. Go Coogs! And I even "won" a dinner out and hotel stay at the silent auction. What in the world will I do with myself when all the kids are out of the house?? I know there will be less conflict and less mess!! But what's that they say about a messy house and happy life? I forget ...
Alrighty. A cancer update. I had my second go round of Gamma Knife Radiotherapy and supposedly they "got it all." Again. Hopefully that means that when they review my next MRI, scheduled for the day before Thanksgiving, there will be nothing to look at but a healthy brain, free of "lesions" or "masses." Right? I have decided that I will not have any more Gamma Knife procedures. Why? Well I guess they didn't give me enough sedation last time! The process of attaching the head frame needed before the actual radiation is administered is a painful and awfully barbaric procedure. The first time I did cry but afterward didn't recall it being that bad. This last time I also cried from the pain and ended up being in the frame for 4-5 hours due to the extent of the tissue that actually had to be radiated. And I was thinking, just because a person is sedated and doesn't remember some aspects of a procedure, doesn't mean it didn't happen. It seemed to take a long time to heal afterwards and my head was sore for longer than the first time. I decided that the neurosurgeon and his team of assistants should be required to EXPERIENCE the procedure before PERFORMING the procedure. I have a strong feeling that they would be much gentler with patients after experiencing it themselves. The application of the frame ... the tightening ... felt like my skull was being squeezed and it might just crack. Ever heard the phrase "I felt it 'down to my bones'?" This is it, quite literally. The snapping on of the different headpieces (I know this is a complete and total dumbing down of the actual terminology, but work with me here) caused a vibration, a jolt, to be felt IN MY TEETH. Really bizzaro, and I just felt like saying "HELLOOOO! Human in here! Can you guys take it easy a little bit?" It was all too much to take.
After doing some research, I found that a different procedure, well actually it's still stereotactic radiotherapy but using a different technique, is a LOT more appealing. The CyberKnife supposedly does the same thing to tumors, but does NOT require that a headframe be screwed into your skull beforehand. I'd call that a win-win. And what do you know, they are doing it at Baylor College of Medicine in Houston, which is where I'm being treated now. Join me as I shout "Woohoo! Bring it on!" Wait, I can't believe I just said that. I'm really not that enthusiastic about it, but zapping tumors without needing a metal frame sounds like an improvement to me.
Lastly, the Ibrance/Faslodex chemo combo seems to be working on the rest of my metastases. Still no more lung or cough issues, and my tumor markers are trending downward! Yes! Unfortunately the Ibrance is taking a huge toll on my blood counts, specifically my white cells and platelets. There were so low that I had to postpone starting my 2nd chemo cycle by 2 weeks! Instead of having just one week off in between cycles, I had 3. Not good for the cancer treatment. Low counts of course are contributing to my fatigue, and I'm more susceptible to infection. Trying to hug less and not shake as many hands! I am over the shingles, which thankfully was a mild case of short duration, but this week, I was "blessed" with a sudden-onset 103 degree fever (unknown cause.) Again, thankfully, this was short-lived and after starting on 2 biggy antibiotics (Cipro & Augmentin,) I no longer have a fever, but I do, however, have pretty severe diarrhea and a general icky feeling in my tummy. Ohhhh the joys of cancer treatment!!!
Fingers crossed that nothing else happens between now and my next procedure, the MRI of the brain on November 23rd, that will mar my nearly 2 weeks off from anything cancer-related.
Thanks for reading. Love y'all.