First, of some basics on chemo for those of you who are reading my blog for education purposes. (I expect this to be almost none of you, but nonetheless...) Chemotherapy is giving via infusion, via IV, via the "chemo port" in my chest. There are premeds, given first, that prevent side effects and reactions to the chemo (read: poison) the nurses will be giving me later. The premeds take usually 30 minutes to an hour depending on what I'm getting. Normally, it's benadryl, some anti-nausea meds, and a steroid. Then chemo infusion usually takes usually 5 hours-ish. I get several poisons: One for prevention of bone destruction, one is for the colon cancer in my lungs, and then one to treat the colon cancer in my bones. Then there's something else that makes this stuff all work together better, but I'm not really sure on the details or how to spell it.
Mind you, my room is still 85 degrees at this point. I had been asking for 8 hours to get someone up to fix it. I was laying next to the ac blowing heat at 3 in the morning in a pool of my own sweat being willfully drugged. Finally, I lost it. In a tantrum fit for a 4 year old, I had had it. Crying and soaking wet, pushing my IV poll, I wheeled a recliner chair into the hall way, grabbed my phone, my teddy bear, and a sheet from my bed a laid in the hallway. (I found out later that the chair had wheel locks, which were not unlocked when I pulled it into the hall way - whoops). Crying, laying in the hall way alone, the bad nurse told me I couldn't lay in the hallway. I told her I couldn't lay in my room. Her "compromise of a fan" was not adequate. She did have the decency to get me more sleepy comfort drugs and rub my back a bit. Bottom line of the story: 20 minutes later a maintenance man fixed my ac and I was able to go back to bed.
The next day, Tuesday, was a blur. I tried to sleep as much as possible. I think my father was there for 6 hours total in the morning because he was there every time I woke up. I may have said 5 words total to him. I tried to eat something once. Threw up twice. My favorite pain management nurse came to see me. My second mom and a good friend also came to visit. Always comforting for me (Advice: hospital visit are personal and reserved for good friends. Always call a friend first before popping in. Trust. Otherwise it can be awkward.)
So here's where the sad/hard stuff starts: Tuesday was also the day that my mom had chemo. Bad planning on our part. We learned that we will need a lot more help on days that we both have chemo and on the days following. I was out of the hospital and feeling worse on Thursday. Pain was excruciating. Medication for pain makes me sick. My mom and I both were too sick to function. We called in a friend. As soon as she showed up to help, my mom fell asleep - one of us on each couch in the living room. I took more meds and applied heat packs. Let's just say, you know it's bad and you're sick when your doctor makes 4 calls to check on you in the course of 5 hours. (I will caveat this and say I have a very good doctor).
Thursday night, couldn't breath right. You may not know this, but when you feel air bubbling in your chest, it's unnerving to say the least. Midnight, I called my chemo-ed mom from the basement. She's a nurse who teaches stethoscope skills to nurses and lung sounds. She didn't answer. I called again. Then called the house phone. Then cried in pain. Kept calling until she answered and came downstairs. She listened to my lungs, gave me drugs, and came to sleep in the bed with me. I've never felt more relieved. Still having horrid bone pain, nausea, upset stomach, neuropathy, and general ickness. Some hair loss (It's suppose to thin, but I shouldm't be bald. I'll let you know...)
Friday, even worse. Pain, breathing problems, more general sickness. Trip to the doctor. Threatens to put me in the hospital. Did I mention that my mom and I couldn't make it to the doctors by ourselves and we had to call my second mom again to give us a ride? Yeah that.
Friday evening (good stuff) Surprise! My sister shows up from Oregon. I cried. My mom cried. Honestly, I was so drugged up I though I was looking at myself in a mirror. Note: We do not look that much a like. I think it was a gift. I guess it's just something about Lisa, but you just can't feel totally sick around her. She doesn't let you or you don't want to let her down or some combination. Eric showed up that night unplanned, but more expected than Lisa. We had a good weekend. My mom and I still felt awful and did little to add to the common good. I think the most productive thing I did was pick out bridesmaid dresses and turn oxygen into carbon dioxide. I dropped my laptop on my foot, which was not a smart move. It's now bruised and swollen and I'm walking with a limp. My sister also diagnosed my mom with shingles. Another step backward for both of us.
So here's the uplifting part that I realized at the end of the week long chemo from hell ordeal: We survived. My family rallied. We had guests visit. We ate, still laughed, were sheltered and protected. Added wine or whine when needed. I cried more than I have in a while. (Others did too, but I'll leave their names out to protect the guilty.) And in the end, I still feel bad. I still have pain; my mom is still tired and sick. But we survived and we will keep doing this. Add chemo, family, friends, love and repeat. We lived though this week. We may have worse weeks, we'll hopefully have better ones, but we keep fighting the good fight. Because we're survivors and this is what we do.
(And if I didn't make it clear, there was LOTS of help. I love everyone who carried me through this week. Too many to mention by name but I will say I love my sister, Eric, my parents, my brother for all the mini-tasks I gave him, my coworkers for covering for me, and Kelly for letting me be neurotic on Saturday.)
I've been anxiously waiting an update and when it didn't come, I just knew you were not having a good time of it. :( I am always constantly thinking of you and pulling for you both! Much love and hugs and positive thoughts. <3 <3 <3 XOXO <3 <3 <3
ReplyDeleteThat was so well written - I am proud of you for more reasons than I can put on paper! We were pretty pathetic, huh?!
ReplyDeleteAnd I am crying (read sobbing) yet again this weekend....this time I just happen to be seated next to a bunch of strangers, totally unaware that I have the bravest, most wonderful sister ever! Until they ask if I'm okay....then I share and am so proud.
ReplyDeleteI love you Patti:)
Wow, Patti. Not a dry eye here either. It's great you're writing it all down. You are all amazing. Brave. Freaking pillars. Sending love and thoughts for a better week...
ReplyDeleteI can feel your pain in your blog entries. I truly wish there was something I could do long distance. I feel like I should do something for both you and your Mom, since you've adopted Trent after we abandoned him. Please know that I think about your family daily and am praying for you two as well. Your courage is a lesson for all of us. Keep up the strong fight!
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