A Followup to “The Day The Doctor Said “Cancer” – Chemotherapy”
These always end up being much longer than I anticipate in the beginning. When it comes to writing, apparently I’m a rambler.
The Short Version: I got sick, but Chemo is over. I dread ever having to do it again. I was having an amazing week of recovery as all was well, then I got a rash and a fever, went to the ER, was inpatient for a few days, and now I’m back home.
The Longer Version: Chemotherapy is done. Hopefully, for good. After I finished on Wednesday, I felt, well, simply put, awful. This made me dread the coming weekend and next week even more. The doctors painted it as the worst part yet.
Thursday was worse. My platelets had dropped to 47K. Consequently they scheduled me for a platelet transfusion Friday morning. I started the whole vomiting routine around 3:30 am and ached all over. Honestly, I don’t know how people do this week after week. I know my five consecutive day treatment isn’t necessarily the norm, but to do it week after week for months at a time, even once a week, I cannot imagine.
I crawled out of bed and reluctantly went in for my transfusion/infusion, whatever fusion, of platelets. I felt nauseous and the Zofran, my long lost friend from my 2013 subarachnoid hemorrhage, didn’t seem to be helping.
Platelet process went well. We went upstairs to Chemo. They could tell I was not well. They asked if I wanted a stronger nausea medicine through the IV. I just wanted to say “Drug me up sister, this is miserable.” But I refrained as I found most did not enjoy my humor like I do. You laugh or cry, I choose to laugh. But I digress. Whatever the drug, it was the good stuff and I started feeling back to normal very quickly. But I still had the pit I was supposedly about to fall into, in the back of my mind.
As I finished Chemo and they removed the midline some of the nurses gathered around to present me with a certificate of completion and have me ring a bell. They all cheered. As you can imagine, I loved all the attention. Not. I did NOT love all the attention. This was not just because I wanted to go home before the good stuff wore off, but also, as I rang the bell, I felt like I slighted those who go through a rigorous process of weeks at a time, losing hair, vomiting, loss of appetite, etc. This was a celebration of an accomplishment I didn’t feel like earned. My wife tried to help me feel better but telling me I got the “mother load” all at once and it was a feat to make it through. The real question is “Did I have a choice?” Some would say yes. I’m not so sure. But again, hat’s off for those who endure chemo for extended periods of time, over and over again, as I cannot fathom the torture they engage in.
I fully expected to vomit through the night Friday. Nothing. Surely things would go down hill Saturday. It was a beautiful day. Sunday? Nope, all was well. When was the impending doom coming? Monday I received the rare opportunity to go to Lawrence Memorial hospital twice, in one day, to have my blood drawn because they didn’t draw all the vials the first time. I am human, mistakes are made. But we called ahead and LMH required the doctor to fax the orders and/or use some digital system to make it known what he wanted done. He did that and I carried in the order that they had given me. They had two copies of the same thing, but only drew the 1st vial. Oh well, they gave me a $5.00 off coupon to use in the cafeteria. I guess that was supposed to make the second trip and stick ok.
Andi, Dr. Smeltzer’s nurse called to say my White Blood Cell Count was down to .7 or 700. Normal is 4 – 11 or 4,000 to 11,000. Needless to say, this is not good. As an aside, more than one of you has asked why my blood counts weren’t tested daily to see if I could get Chemo like they do with other people. As I understand it, the term Chemotherapy is a very general term for all kinds of different drug therapies within different time frames and regiments. Hairy Cell Leukemia basically attacks the immune system. Consequently, they know the numbers are going to be really low because the Cladribine is killing everything off. So there’s no point in checking, unless you have the super human ability to grow extra veins and arteries and they know they’ll have to give you some platelets. Back to the point. My WBC was not good. BUT my platelets were up in the 90’s, which is likely why I was feeling so good. I don’t necessarily understand that, that’s just what I was told.
Even being stuck twice on Monday didn’t keep me down. The week was going great. I spent time outside pulling weeds, of all things, because no one would allow me to touch any tools. I might scrap, bruise, cut, or lacerate something and get an infection. I was covered head to to toe in 80+ degree weather, hiding from the sun. But it was glorious. I was doing fantastic. The dreaded week was really nothing to dread.
Then Friday hit. I was tired. I thought I had just done too much on Thursday, so I slept for quite a while after the kids went to school. Around noon I noticed my neck started itching. There was a very light pink spot. Immediately I thought I picked up poison ivy. Oh why do you itch me so?! Awesome. As I moved throughout the day, not doing much of anything, I was dragging. Brandy noticed the now not so light pink rash on my neck. My body started to ache and I was feverish. Within the period of an hour I watched my temperature rise from 99 to 101.3
Brandy took me to the LMH ER. I stood outside while she “explained,” as only she could explain, to the guy at the counter that I couldn’t be in the waiting room with “this mess.” He got a little excited and ran around for a while before he came out to get me and take me to triage. By the time we sat down in the triage room the rash was raging down my chest and back. They immediately took me back to a room. The doctor stopped in, took a few notes and sent for the lab. Remember this is the place that had to stick me twice on Monday because they forgot the other vial – I’m not bitter, I just hate needles.
The lab tech told me up front she was going to have to stick me three times. 5 times all together?!? You have got to be kidding me?! I avoided 5 sticks last week with a midline. Smack my toe with a hammer or something, just stay away from me with needles! Somehow she got what she wanted, and I didn’t. I even tried to convince her to take at least one stick from her partners arm. I thought it looked like he had some fairly large veins. No dice.
When the lab results came back they informed me that I was neutropenic – my white blood cell count was terribly low – now down to .67, but I already knew this. In fact I told them when we came in. They must not have believed me and thought I was wearing the mask as a fashion statement. So, they pumped antibiotics into me, called the on call oncologist at St. Lukes East, then put me in an ambulance and sent me there. It was time to go inpatient. We arrived around the pleasant hour of 12:00 am.
Being neutropenic, everyone had the joy of wearing a mask into my room. They changed my drugs around and started giving me shots in my stomach to try to stimulate my WBC production. This was especially pleasant – more needles. After meeting with the oncologist on Saturday, turns out the rash raging over my body and likely the cause of my fever was from the chemotherapy drug, cladribine, interacting with one of the antibiotics that I was taking – SMZ/TMP. According to what the hospitalist read the night before when he was consulting with the oncologist at 1 in the morning, the rash only occurs in 10-23% of those who take the two drugs together. In other words, if it’s gonna happen, its gonna happen to me. Just like who else in the world do you know that’s allergic to Mango’s aside from me? They put me on benadryl, claritin, a steroid, a probiotic, and 2 different IV antibiotics for safe measure. They wanted to watch rash until it peaked, but also wanted to make sure the fever wasn’t from some other infection or something that was recurring.
Will someone scratch my back? I sure hope this rash peaks soon. Someone needs to tell that boy to pull up his pants. No one needs to see that! I have a staple gun that will take care of that sagging problem. But again, I digress. I had to remove the rings from my hands on Saturday because my hands were swelling with the rash moving over my body.
Alas, Sunday afternoon the rash was receding. It’s still over the majority of my body, just not out to my fingers and toes anymore. They say it may last up to a couple weeks. Since I was not having recurring fevers and the rash is in the process of receding, I got to come home at noon today. I go back for lab work Monday morning and meet with Dr. Smeltzer, the oncologist, in the afternoon.
As an aside, all in all, I was very highly impressed with the care and attention I received at St. Luke’s East. They are really top notch.