This last week was not an especially good one...nothing awful happened, but let's just say I am glad to be nearing the end. My "good" week only lasted a whopping three days. Thursday, Friday and Saturday I felt great! Tired, but healthy and feeling good overall. Then Sunday afternoon hit and you could not peel me off the floor. I was exhausted....and getting the tell tale signs of coming down with something - the aches, the chills....and a fever. It was only 99.8, so not time to call the Dr yet. I downed some C monster, snuggled into bed early and crossed my fingers that I would not feel worse the next day. Which I didn't...but I didn't feel any better either when Monday rolled around. After laying in bed all morning, I finally took my temperature at noon. 100.3. Shit. The Dr's office generally wants to know when you are around 100.5...and I wasn't there yet.....but they were always telling me I didn't call when I should so I decided to be a good girl and let them know and see what they wanted me to do. I left a message and nurse Julie called me back, and was consulting with a doctor while talking to me. Well....they didn't know what to do with me. They were not thrilled at the fever, but they didn't want to drag me in to run the numbers on my blood if this turned out to just be a side effect from the Neulasta shot (the white blood cell booster that I get the day after chemo. Yes, 7-10 days later you can get side effects from Neulasta. It is not my favorite shot. Not only does it make me feel like garbage, but it's over $600 out of pocket every time I get this shot. I have done the math. I could have a Chanel purse by now. I'd rather have a Chanel purse). Julie asked some more questions (how do you feel? like garbage. Can you still eat? yes) The fact that I could still eat made them happy, so Julie told me to take some tylenol and see if the fever goes away. If it doesn't go away, call them back. If it comes back tomorrow, call them back. If I feel worse at all at any point - call them back! Ok ok ok. I asked at what point did the fever have to get to in order for them to be concerned. She said anything over 100.8. Ok. Popped a couple tylenol, hopped in bed. And because I am obsessive I took my temperature 15 minutes later. 101 degrees. shit shit shit. Ok, the tylenol just hasn't kicked in right? Not calling yet. 15 minutes later....100.8 degrees. shit. Ok, not calling until it's been a FULL hour. An hour later, 100.3. Ok, phew going in the right direction. Two hours later it was back to normal 98.6. Crisis averted. It came back later that night, hovered at 100.6 (just high enough to make me nervous all night) and then *poof* at 11pm it vanished. So Tuesday, no fever...but just wiped from the last couple of fever days. And then it was Wednesday and I was feeling better.....but it was WEDNESDAY .....already. Crap, how did that happen so fast? So all I day Wednesday I ended up dreading Thursday - chemo day.
Chemo day started out normal enough. Bob was traveling so it was just my mom and I. I had almost convinced my mom to just drop me off, the nurses take such good care of me and all I do these days is sleep during the infusion - what lousy company. But as we were driving there for out 9am appointment she said, no I am coming in...it makes me feel better to be with you. Plus, I know she worries that something may happen and she likes to be there to make sure I am ok. Moms have a sixth sense I tell you. I was happy that she came.
We did not see Dr Kurup this time. Instead we met with the head nurse practitioner, Erin. I like Erin a lot, I have met with her before. She is smart, warm and very straight forward. We talked about my initial signs if peripheral neuropathy. I have mild symptoms in my left foot (and sometimes leg). It comes and goes and feels tingly like my foot is asleep. Erin was happy that it comes and goes - she said this typically means that it is not permanent and would go away after chemo. She said that the people they get concerned about are the ones where the symptoms come on strong and stay strong. We talked about my fever - most likely just Neulasta side effects. We talked about how this round was much much easier than last round (in terms of pain) and she was thrilled the steroids were working out so well. My numbers looked good (white blood cell count 5, platelets a little over 100) and so we were cleared to go. Off to the infusion room....
As usual, started out with benadryl....and zzzzzzzzzzzz. I heard Lina, my chemo nurse come over and switch out the bags once the benadryl was done. On to anti-nausea and steroids. Then about a half hour later I heard her come over and switch out the bag with Taxol. I don't know how far in I got, but I started to feel nauseous. I opened my eyes, asked my mom to get me some ginger ale. "Are you not feeling good?" I don't know....I don't know. She came back with ginger ale, I sipped some, closed my eyes again and willed the nausea to go away. It wasn't. It was all the sudden getting worse. Oh no oh no oh no.....I popped up, frantically tried to un-recline my chair and said "Mom, TellThemToStopTheDrip, TellThemToStopTheDrip!!!!!!!!!!!!!" She was frantically ringing the bell, trying to find a nurse. I was saying "stop the drip", but what I meant was I think I'm going to throw up. Which I did. In the wastebasket in front of me. Three times.
Lina came over, stopped the drip, whisked the wastebasket away, and plopped a cold wet washcloth directly on my head. And let me tell you, I love a wet washcloth when I am not feeling good....and now I am forever spoiled because normally (with hair) I have only put one on my forehead or the back of my neck. But when you can plop directly on your bald head....heaven.
My mom asked Lina to get Dr Kurup. She came out moments later, rubbed my back and was sympathetic....and gently said I am so sorry but we have to keep going, we will slow the drip down even more this time. I looked up to the taxol bag and we had barely made a dent. Lina got more anti-nausea drugs, told me they would make me sleepy, injected it directly into my IV and I was OUT. I don't even know how long I racked out for, but it was 1pm when I finally opened my eyes. My mom was still by my side and I knew she didn't want to leave me, but I also knew she must be hungry. I said I was feeling better and maybe we should eat some lunch? She went downstairs, picked up a couple sandwiches and I stayed awake the rest of time and we chatted. It was 3pm when we were done. We were both a little tired and both a little traumatized. As my mom told me later - no mother likes to see their baby get poisoned and then throw up.
Fortunately, it has only been up from there. It's now Sunday night, still no pain (knock on wood). I woke up this morning and felt like it started to creep in, but steriods+advil seem to do the trick to knock it back. I am tired....but definitely not as wiped as last time, so crossing my fingers that the rest of the week will just get better and I won't have to dip into the vicodin.
So obviously, the above stories were "the bad" and the "the ugly". Onto "the good"....
Last Saturday, during my brief "good week", Bob, Thomas and I were out and about for the day. It felt good to get out...nothing too exciting, just bummed around, ate lunch out, shopped. We were in a clothing store and this one store associate kept coming up to me. Can I help you find anything? Can I start you a fitting room? Are you finding everything ok? The last time she came up she was babbling a little, talking fast...a little nervous. "So, I have a funny story for you...well not funny so much, but um.........so my mom started chemo last Thursday...." she stopped, her eyes started to well up. I grabbed her arm, gave it a squeeze. She gathered herself and continued. "And, well I just wanted to tell you that it makes me feel so much better to see you ...out and looking....strong". I asked her how her mom was doing. She said not good, she hasn't been able to get out of bed yet. I told her that my first treatment was my worst and that the first 4-5 days were the hardest, but after that I always felt better and if her mom wasn't feeling better she should call the doctors because there is so much they can do to make her more comfortable. She nodded enthusiastically, said she would do that, thanked me and said again it made her feel better to see me out and about and that it made her realize her mom would be ok.
Bob was watching this exchange from across the room but didn't hear what we were talking about. When we got outside I told him what she said. He said, "wow - that must make you feel really good...you are an inspiration." And you know what? It did make me feel really good. These past four months I have only felt like a burden.....one more worry to add onto my family's life. I never thought I would make someone else feel better just by being out and about...and bald.
When I started going out bald I didn't do it for a fashion statement, or a political statement or any kind of statement. I just happen to be bald right now and if my husband still loves me, and my baby still loves me and my family still loves me....well then what do I care what a bunch of random strangers think when they see me? If anything I thought that people would avoid me, or think I looked like a freak, or just pity me. I never ever ever thought it would make someone feel better. So for the hundred people that see me and think I am a freak- if just one person sees me and thinks "my mom is going to be ok" or my girlfriend or my sister or my best friend....well, doesn't it make it all worth it?
You couldn't wipe the grin off my face for the rest of the day. I held my bald head high.
So that was my good moment. I've wrapped it up, put it into my pocket and am savoring it.
Oh, and P.S. - ONE. MORE. TREATMENT. TO GO.
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