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March March 4th, Group Email Message. Subject: New Routine Well, My life has taken on a new routine. One of the biggest changes is the fact that I require 24-7 companionship in case I suddenly get sick and cannot make it to the hospital on my own. This may not sound like much, but it's really a huge deal to me. I'm one who savors independence and time spent alone for drawing or writing or bouncing off walls. It also seems like a lot for me to expect someone to be around me all the time. I'm just not that entertaining. This week my mom is out here keeping me company. My protective white blood cells are gone right now so I have to avoid public places and most importantly, wash my hands all the time. My mom has been acting as the boundary police catching visiting friends at the door and preventing anyone with a cough or sniffle from entering. "Hi, you're not sick, are you?" Rolf, of course, says "no, I'm fine", rushes in and breaks out into a loud, prolonged coughing fit that leaves him doubled over and gasping for breath. It was classic performance on Rolf's part, Mom wasn't amused. The other big change is the horrifying daily routine of cleaning the catheter: Well, I haven't had good luck with "body tubing", and the new catheter is no exception. This sprawling contraption burrows under my skin by my nipple, tunnels up to my neck where it does a 180 and dives into a vein headed straight to my heart. It's purpose is to allow for easy access to my blood stream. That way blood can be taken, filtered for stem cells and returned, chemo can go straight to the big veins, and I can do blood drawing at home for the daily samples. Beautiful in theory, pain in the neck in reality.
A couple days ago the thing got clogged and wouldn't draw blood. I went in and had the nurses try it. After having me contort into strange positions they decided they couldn't either. Then they sent me down for a roto rooter in angiogram where they prepared to send a line up from my groin to scrape a clot off the inside end of the catheter. "We do it all the time!" However, the Xray showed that the problem was a kink, not a clot. Now they started saying "this is very unusual". I was give a skimpy conscious sedation and they proceded to jam the catheter back and forth through it's tunnel until the kink wore out (about an hour). Judging by how my chest has felt since, there must have been a time when both techs took on the doctor in a game of "tug of war" with my catheter. Now cleaning the catheter is horrifying because if it turns out clogged again, I know exactly what I'm in for. It's been finicky lately, but I'm giving it my all to keep it going. It has to last at least two more months, and I've only had it for a week! The other thing I have to NOT look forward to every day is the neupogen shot. As far as shots are concerned, it's about as painless as it could be, and Chris is about as nice as nurse could be (she gives good after shot hugs) I just happen to get all worked up whenever I see a syringe coming my way. Along with the neupogen I take other daily medications, a antibiotic and a blood thinner, which I feel crimp my style....
I've got some good stuff in my new routine, too! Although I had to quit going to my drawing class, I'm drawing at home almost every morning, painting in the afternoon if I still feel up to it and I'm not stuck in a waiting room somewhere. Mom has been working on a pastel drawing too. It's nice to see her at work. I haven't been sick enough to watch movies all day, but Christine and I have been slowly becoming addicted to "Tomb Raider" on our new playstation (thanks Steph!). If I ever stop sending out these emails, it's probably because I'm exploring some new dungeon in the living room. Stay tuned! ~J
March 7th, Group Email Message. Subject: Stem cells away! It all started five days ago with the neupogen shots. These shots stimulate your bones to make blood. Most of the real action happens in the marrow of your pelvis, spine, and skull. The docs wanted to stimulate these "bone factories" so they could collect the key ingredient, the stem cells, which later will act as an antidote to the high dose chemo. The neupogen shots have an exponential effect, telling the blood factories to produce double time, quadruple time, etc, each additional shot. Unfortunately, these factories are better at producing than getting the product out the door, and you can feel the blood piling up in your bones (some patients get by without ever feeling it but I sure did). I had some hints of "bone pain" on Saturday and Sunday, but by Monday afternoon my pelvis started to surge like it was having a party of it's own, and I wasn't invited. It pulsed an irregular beat, giving me the shivers, or sending my pelvis on involuntary gyrations, as if I was suddenly playing hula hoop. I could hardly sit still for Chris to give me another shot of neupogen. I couldn't conceive of my pain getting any worse. I was doing the maximum doses of pain relief without restraint. I did anything that could distract me. I watched a (luckily) incredibly suspenseful movie (The Professional). I struggled with a new server for my website. I wandered the house.
I looked at my bed and laughed because I figured I wouldn't be getting any sleep. I wandered up and down the hallway making exclamations like "AOUHWEE" and "YHOO". Then I would decide that I was too sore to walk. I'd then sit down for the little time it took to realize that I was too sore to sit. I called a nurse and asked about taking more drugs. She suggested I try a hot or a cold pack. I was in too much pain sit down with a pack so I wandered the halls until I got on Chris' nerves. She made me take a hot bath. It was incredible. No pain! Just soothing heat! Complete relief. I figured that I had about 10 minutes to get out of the tub, take a load of pills, and try to fall asleep before the pain came back. I got out of the tub and was proved wrong instantly. I had an Elvis pelvis shudder reaching for the towel UNH HUH! I was amazed. The pain is hard to describe, like hitting the funny bone on your elbow; you don't know whether to laugh or cry. I went to bed anyway. We fired up the heating pad, and after I could feel it's penetrating heat, I fell into delicious sleep. In the morning, I felt fine (fine is relative). It was almost a disappointment. Guess I figured that I was getting the hang of it, or looking forward to another day of not helping with the dishes... Anyway, here's where the good news comes in. In the afternoon I got a call saying that the blood I dropped off that morning had an incredible level of stem cells, and that It was time for me to come in to have them removed. The news was not only good, it was at least a couple days ahead of schedule.
The apheresis procedure was rather uneventful. I had a tense moment wondering if my finicky catheter would hold up to the machine's high speed blood sucking action, but all went fine. The blood gets sucked out, gets spun around, the stem cells squirt into a bag for freezing, and then the blood returns. It takes about 3 hours. I watched half a James bond movie, wrote a bit, slept a bit. The good news came that night at 8:30 when the tech called me. "We've collected a record number of stem cells!" She exclaimed. The goal was 5,000,000. From me we collected 39,000,000. "Some people can't give that many stem cells in 10-20 sessions, and you did it in one!" She explained. So, no more neupogen shots. Another step in my recovery is done. And enough stem cells have been collected and frozen that I have good insurance for future treatments. It's been an incredible couple of days. I have just completed a major step of my treatment. The news is good, but now I'm faced with the next steps. Not easier steps. Tomorrow a CT scan. Friday a new chemo starts. Monday, more chemo, and Tuesday I'm admitted to the University Hospital for a short inpatient chemo. Busy schedule, then the really scary wait starts. One final piece of business: There are now two ways to get my updates: by periodically checking my web site (now www.lymphomajournal.com) or by staying on my mailing list and getting emails. If you would prefer to stay updated by website, let me know and I'll take you off the mailing list. By checking via web site there should be fewer graphics problems and you can read em when you're good and ready.... Otherwise, I'll just keep you on my list, where you'll be forced to read my HORRORFYING stories to come. ~J
March 16th, Group Email Message. Subject: RICE Chemotherapy RICE may rhyme with nice, but it's really an acronym for my new chemo slushies. I just finished my first round. One down, 2-3 to go. Hopefully just 2 more. One round consists of two days getting infusions as an out patient and two days getting infused in the hospital. None of these days are particularly bad on their own, but all stacked up together makes for quite a challenge. Even more challenging now is just the thought of spending a whole month in the hospital after the RICE chemo is over. I'm already sick of movies, video games, TV, being lethargic.... Sick of being sick. I'm loosing all my hair again. Again. It's dropping like mad. luckily my eyebrows are stillhanging around, though I won't pull on them to test wether their rooted or not. My legs are silky smooth again. I feel like I'm 11!
March 22, Group Emailing. Subject: And time continued Well, christine kicked me off the playstation so I guess I'll do a little emailing. All's well in chemo land. I've returned to a more bearable level of functioning from the depths of the last chemo. I skied today, hiked yesterday and have been enjoying the spring weather throughout. I even did a little work in the yard with my nifty bacterial mask on. I had the energy to rake leaves for about 3 reps of 2 minute intervals. Then the mask really came in handy for when I worked on the compost a bit. Yuck! Spring weather has also given me the itch to travel. This evening I was watching planes traverse the blue, water filled air above the valley and wished I was on one. Until, of course, the familiar cancer babble filled my head saying, "you couldn't do that, your counts are low, you'd catch a cold and besides, you have Drs. appointments every day for the next three months!" It's hard to make fun, adventerous plans these days without them coming under the scruitney of cancer babble. I won't miss cancer babble. Or saying "gee, my counts are low". So, I'm feeling good. Know what that means? That's right, I'm about to start another chemo. I get rituximab tomorrow, a good weekend off, chemo monday at the Huntsman, and chemo Tuesday and Wednesday in the University Hospital. If all goes according to plan (insert laughter regarding the reliability of hospital plans here). I have about a month of these short, two week cycles before I'm admitted to LDS Hospital for a month, what I'm affectionately calling the big bang. Did I mention that my Lymphoma Journal website now officially has it's own home at www.lymphomajournal.com It's a heck of a lot easier to explain than my previous address, so share.
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