Tag Archives: lymphoma

Attitudes

I don’t think it often happens that you’re faced with something in life that forces you to look at your attitude about life, but serious illness I guess is one of those things that does. I’d never before had any reason to think about my general attitude, but now that I do; I am so grateful for it. I’m not saying I don’t have my grumpy, pity party days; I think everyone does, but overall I generally focus on how lucky and blessed I really am, and I think the ability to do that is a blessing in and of itself. I don’t think there’s anything wrong with having the occasional poor me day here and there, but I don’t think you can accomplish much to pull yourself out of a crap situation if you allow yourself to linger on yourself for too long, and one question I’ve never been able to ask myself about anything is why me, because the instantaneous echo that floats back to me is why not me.

I never really thought about it before, but my attitude is, I think, part of what makes my life so full. It’s also part of what’s made it possible for me to get through this nasty treatment with some semblance of sanity, in spite of my foot stamping, grouch fest just prior to my stem cell mobilization chemo. I don’t know how attitudes are formed, but I want to thank whatever forms them for mine.

I also want to thank all the family and friends who’ve supported me through this. People have literally poured out support for me, and I can’t even begin to tell everyone how helpful and uplifting that has been.

Mobilization Day 2

I started the second day of my mobilization treatment today. I got to the clinic at 7:00AM and they started by pumping me full of saline, then my triple dose of cyclophosphamide, plus phergan and a bunch of anti-emetics. I slept through a good portion of that courtesy of the phenergan, and when I awoke it was pretty much down to my receiving two more liters of saline, plus Mesna (a drug used to counteract bladder irritation brought on by cyclophosphamide) at regular intervals All in all it wasn’t nearly as unpleasant as my last chemo, but I’m feeling pretty rough right now; terrible headache for the last few hours, and a persistent nagging nausea. Continue reading Mobilization Day 2

Day 1 Stem Cell Mobilization

Today I started my stem cell mobilization by receiving my last dose of rituxan (aka rituximab/mabthera). They started me out with a full bag of saline today, because the cyclophosphamide I will be given tomorrow can irritate my bladder and cause hemorrhagic cystitis and aggressive hydration (plus a drug called Mesna) is used to combat the potential bladder irritation. So I sat there for awhile while the saline dripped.

The nurse who accessed my port today told me that my port is in a little deeper than she’s used to seeing and because of that they should be using a little longer needle because the needle needs to sit near the back of the port for the medications to flow properly. I wrote before about a nurse making me sit with my shoulders stretched backward and my chest stuck out for nearly six hours, yelling at me whenever the drip slowed. Nice to know that could’ve been fixed by getting a longer needle into my port. The nurse today actually showed me how pressing the needle deeper effected the flow rate. It’s much easier to press on the port needle to increase the flow than to sit in an awkward posture for hours, but I won’t start cranking on about the nurses again.

So after my saline, they gave me some phenergan, the anti-histamine that makes me sleep like a stone… and grumpy if you try to keep me awake. Shortly after that the nurse who schedules all the procedures for my mobilization came to talk to me about everything that will be going on in the next few weeks. Thank God I have someone with me for these appointments because I was having trouble following her, and just keeping my eyes open really. She checked my arms for veins suitable to the harvest, and as suspected found none, so I’ll have to get a special line placed into my neck next Friday. I don’t remember much after all that.

So she left and I started to drift into slumberland, and along comes my oncologist. I don’t really even know what he was saying to me. Something about my rehab; something about how I’m feeling; I’m not even sure I was coherently responding to him.

Other than that things went entirely smoothly. I’m feeling a little tired, but that’s likely a response to the phenergan. Tomorrow I’ll be getting the cyclophosphamide… ­čśŤ blech.

Light at the End of the Chemo Tunnel

Whew! I am worn out after today. I couldn’t sleep last night for some reason, so I was up until 3:30AM then had to force myself to get up at 8:00AM to get ready for my rituximab appointment… so I was a bit of a cranky pants. Then at the clinic I had to wait an hour before I was finally called up for my appointment… timeliness is not apparently a strong suit of the medical profession. I’m not exactly a time Nazi, but my time is valuable, and an hour just seems a bit excessive to me. As I’m sure everyone can imagine, making me wait for an hour did nothing for my cranky pants; I think it just gave me an extra helping of grouch on the side.

Things were pretty uneventful, my port didn’t bleed for the nurse, but that’s pretty standard. I did get a boost of extra knock out from the phenergan though, and being tired already I was comatose for most of the treatment. When I did wake up it was to the beep beep beep of my rituximab pump going off because it was out of fluid to push; oh talk about uber grouchy cranky pants. If my evilness generated heat the pump would’ve melted. When five minutes went by with no one turning it off, I pressed the call button for a nurse, two minutes later I pressed it again, and two minutes later I pressed it yet again, which apprently sets off the emergency buzzer at the nurses station. I had no idea, I was just stewing in a pot of my own grouchiness. Suddenly five nurses turn up and yell at me for pressing the button three times. No one ever provided me any instruction on the intricacies of the call button, and trust me if I’d known it would make them shake their butts so fast I probably would’ve pressed it three times sooner. Anyway, I promptly fell asleep again while one of them pulled out my tubing. I think it freaked her out because when she woke me up she kept asking if I was alright, and my mouth was dry, and I didn’t feel like making an effort to talk so I was just shaking my head. Not one of my most charming days for sure.

The good news though… I have the time for my hospitalization appointment… July 16. Almost a month away, I pray my immune system will be healed and my blood and the rest of me will be stronger by that time. So end of July and this will all be OVER! Somewhere, in some parallel universe another me is dancing a jig and singing mad happy songs for reasons beyond her.

Having Fun

I had a good time today. I got a mandoline recently, the kitchen tool, not the musical instrument, and today I sliced some raw beet, rutabaga (called swede in AUS), parsnips and sweet potato paper thin and baked them to make something like potato chips (potato crisps in AUS), but from the veggies above; if you’ve ever eaten terra chips you’ll know what I’m talking about (you can’t get terra chips in AUS). Anyway, paper thin is not the way to go with chips, so I made another batch slightly thicker about 2mm in thickness, and that was just about right. Both sets turned out tasty, though the first batch cooked way too quickly and almost disappeared so they were more like the leftovers in a bag of chips. It was a lot of fun, Bernie has never had terra chips, but he really liked the flavors, and when sliced really thinly all of the root veg are delicious on their own. I always have had a thing for beets, turnips and rutabaga though, and parsnips taste like a combination of parsley and carrot to me, so I like them too, I just wish they were as crunchy as carrot.

I was reading about rutabaga and beets because I wanted to know the vitamin content, and I came across a favorite word for beets… mangelwurzel. It’s a term used for a really large beets grown in a certain part of England, and it’s not really used much anymore, but it sounds so much more fanciful than beet… mangelwurzel.

My pelvic bones are still sore and achy, but I find if I keep myself busy with stuff I can mostly ignore it. It feels funny, but not too terribly painful. What’s kind of cool is my butt which was feeling kind of numb but watery, now feels kind of normalish; still a wee bit numbish in areas, but more normal than it’s felt in a long time, which is kind of exciting.

In general I’m feeling much better now. I still get tired somewhat easily, but I feel like I’m getting stronger. It’s nice not to have that pervasive tiredness that I was feeling before my last treatment. I will be getting a dose of rituximab this week, but it’s never caused me any problems in the past, so I’m hoping that holds true this time around too.

Winter’s Come to Brisbane

It was 19 degrees Celcius here this morning, which is about 48 Fahrenheit; that’s cold for Brisbane. I even woke up feeling it, and I’m originally from a cold climate. It’s kind of refreshing, though a bit strange since I’m still not used to the flip in seasons. It seems odd to be getting colder for what I think is summer, but is winter here. Good old equatorial flip.

I ended up having to call my oncologist today to see when they wanted to try to clear my port line, only to find the on call doc yesterday didn’t leave him word there was a problem with my line… this was the same guy who wanted me admitted on a Sunday evening to have the procedure done. When I explained what happened to the receptionist, she told me the oncologist would call me back, but then she called back & said it’s nothing to worry about and the doctor isn’t concerned. If I had hair I’d scratch my head. I’m beyond caring at this point I guess. I just want my treatment to be over so I can start living again. I feel like a cancer prisoner, or maybe a chemo-prisoner.┬á

I love winter time, so it’s going to be great to be able to walk again in time for winter. I’m going to walk myself silly exploring this neighborhood. I moved here back in 2006, and I’ve barely left my yard because of this stupid tumor, but come August… look out neighborhood :)

Call Me Vampira

Sunday I get another transfusion, and I’m actually looking forward to it. I never realized receiving another person’s red blood cells would make me feel so good; I guess I’m a vampire convert. Today I was able to wander around in my yard and do some minor pruning on my potted herbs. I’ve been a bit sleepy, but I haven’t felt the extreme tiredness I was feeling after the last treatment; I wasn’t short of breath or in need of a bench the whole time, and I feel pretty good about that. So watch out all you O positive & O negative folks out there, I now know what I need when I’m feeling tired and run down :).

I really had the best time pruning today. I simply love pruning my plants. I have a gorgeous pineapple sage plant that was all the more gorgeous after some taming. My basil plants also needed a bit of attention; they were starting to look very straggly, now their neat and tidy and ready to bear more delicious leaves. I also got a thai holy basil because I really love the flavor in my Vietnamese pho, but my husband had to pot it for me. I also stood outside while he planted a gorgeous dwarf magnolia for me, he wanted my help making sure he got the depth of the rootball right, and help making sure he had it positioned just right. The rootball I was helpful with, but he noticed when we were done that the tree was a bit lopsided; it looked straight to me… I blame chemo eyes :).

I do think this round of chemo has caused me to lose my appetite a bit. I’m not nauseated, but my stomach jumps and heaves a lot even taking kytril and maxalon. It’s like some combination of a really intense hiccup and a burp, but the only sound is me gasping for air because it hurts and surprises me at the same time. At least it’s non-productive though, I don’t think I could take being sick at this point. Still I’m feeling better than the last time. I don’t get much of a break between treatments this time, so it’s nice not to be really unwell. I guess we’ll see how I’m feeling next week though… day 7, that’s the telling point.

I’ve been reading up on my stem cell harvest and I have to say it sounds intriguing, but pretty terrible. The blood thinner they’ll give me will apparently give me tingly, itchy lips… where do they come up with these side effects? I currently take a drug called neulasta the day after every round of chemo to help rebuild my immune system. For the stem cell harvest I’ll be taking neulasta’s predecessor, neupogen for somewhere between six and twelve days, and they’re promising me some pretty severe bone pain to go along with that. Bone pain, itchy, tingly┬álips, tingly tongue, mouth sores, mystery rash, chemo eyes, chemo brain, general stomach discombobulation… and that’s the cure :). Funny I only had leg and back pain as a symptom of the cancer, but I guess it was leg and back pain, soon to be accompanied by death, so I’ll suck it up and deal with my side effects, all the while looking forward to August when I should be on the mend for real. I think August is going to become one of my favorite months.

The count down to a delicious night of sushi begins soon! Look out August here I come.