whoa!
Well, I am thankful that the first round was “easy.” Round 2 has proven to be a bit more challenging.
The day of (6/17) wasn’t so bad. Matt Berry’s insanely wonderful new LP came out, and so I was able to enjoy it. I did get more nauseous, and earlier, so had to take some medication for that.
Tuesday’s Neulasta injection came and went. That evening, Shayne came over to braid what was left of my hair so that I could shave it. I really had not expected it to come out so quickly. They say 14-21 days, so I thought that I’d have a little more time. I should have taken it off a week before. We were able to save a bit of it. Shayne worked really hard to spare both my hair and my feelings. She spent at least 3 hours carefully combing, separating, and braiding the hair left on my head while I worked. She was amazing as sweet as always, and I could not have asked for a better way to make the transition.
After work, I asked John to help me cut and save the braids, and shave the rest of my hair off. At this point, I honestly looked like a Juggalo, and was almost happy to see it go. As we cut the hair and waxed each end, it really started to hit me. “I have a potentially deadly illness, am undergoing a slow poisoning to try to be rid of it, and am very, very ill.” All this from cutting hair off. A vanity. But it is a strong visual- you see yourself for the first time looking physically vulnerable. I hate being afraid, and seeing the fear reflected in my eyes made a huge impact on me.
Once we finished cutting the braids, John took the clippers to my head. My scalp was pretty sore by then, and it was not fun. I did end up with a fun pattern on my head (a la Pinhead from Hellraiser) and am lucky my head is not completely funky in shape. I’ve had a buzzcut before, when I was much thinner and younger. The blow to my self esteem has been pretty big. I have gained so much weight the last 10 years, and obviously am not getting any younger. So now, I am not only fat, but I am getting old, have cancer, and am effing bald. Wheee! Really sexy!
This summer was supposed to be my “work out, get healthy” start. We had set up the gym area in the study, I was working on my diet, and had finally started making progress on my damaged psoas. All that got blown right out the window and I am totally having a pity party for myself.
John was as wonderful as ever, telling me that my head is beautiful while gently shearing my head, and trying to make me laugh. We finished up, I showered and cried, then went to bed.
Wednesday found me feeling quite terrible. Swollen from the steroids, a bit nauseated, starving, and a little neuropathy had started. Thursday and Friday were even worse. I couldn’t stand for long, but could not sit very long either. My hands, feet, legs and mouth were tingling and numb, and in general, I felt like I was possessing the Stay-Puffed marshmallow man’s body. Nothing was working correctly, and though I did not have a fever, my body felt like I had a very high one. I spent most of the time crying, and trying to work or sleep. Sleep is elusive, and my new gp apparently does not think I need my RXs refilled. So, I am in a constant state of panic, and with the steroids and chronic insomnia (that I’ve had since I was a teen,) there has been hardly any actual sleep happening. Just a ton of me laying in bed, trying to stay positive and get maybe a few winks between having to get up to pee every 30 minutes since I have to drink so much water now. I chose a new gp a few months ago, more for convenience than anything. I loved my old gp, but she is all the way in the middle of Austin, and not associated with any hospital. Never underestimate the value of a doctor that listens to your concerns, discusses the issue and various options with you, and is compassionate in their care. It is more important than saving time and gas in the short run.
Yesterday was a little better, most of the neuropathy finally stopped, and the swelling was not quite as bad. I will say this week has injected some fear into my life. I am afraid of what the next 6 rounds of chemo will bring me, and what will happen after that. I know I’ve started on this path, and need to finish it, but I am questioning my decision to not just go full throttle towards surgery and go through this torture. I am sure had I done so, I would be questioning that decision as well. I just want to live for as long as I can, as well as I can like everyone else. This whole situation makes you question everything you do every day.
Not that any of this is revolutionary for anyone else. Billions of creatures before me have had the same thoughts in their minds throughout the history of the universe, and billions after will also. But that train of thought must stop, because making myself feel even more miniscule is not the way to go! I must find the place in this world where I feel I can do the most good in order to strive to survive. I sure miss being a teenager and not caring.
Today will hopefully be better, and maybe I can get some housework done. Also expecting a visit from some wonderful friends, Erin and Jay. This time I will remember to give her the xmas gift that I’ve forgotten several times. O.0
xoxox- dreaming of tacos and beer~ j
Posted in Uncategorized by Woodenleg with 4 comments.
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