I don’t know how, and from what I could ascertain neither did my doctor, but apparently, one of the mysteries of chemo-therapy is that sometimes it can actually help to lower your blood pressure. This is usually a temporary little miracle that ends shortly after you finish treatment, but in my case, I seem to have managed to lose enough weight post chemo-therapy to alleviate the mild hypertension I had prior to treatment. I have to say I’m really glad because I REALLY hated taking hypertension medication. Continue reading Hypertension & Chemo
I feel like a broken record of late; I’m tired; I’m really tired; I’m really really tired. Not so much a physical tiredness like when my blood counts were low; I’m sleepy. I got away without a nap yesterday, but I paid for it today. I could not keep my eyes open. I had to give up on attempting to work; it’s not fair to the office if I’m nodding off as I try to code, so no billable work today. I actually passed out on the sofa twice today, and took a nap around 5:30pm, and I’m ridiculously sleepy right now. I have no idea whether or not this is related to my chemotherapy in any way. I hope it does, and I hope it’s over soon. I feel non-functional at this point. At least my cat is down with napping too. He and I are partners in sleep; I would love to think it’s because he loves me so much, but I think it’s because it’s cold out, and I’m so very warm. I throw off so much heat he actually starts out sleeping on me and has to move away later. Even still it’s nice to have a little buddy to cuddle with, and he’s very cuddly right now.
My hair is really beginning to grow. It’s nearly a half inch long all over now, with some bits being longer (I have yet to shave my rebel 2″ hair that survived chemo). I think I will even my hair all up this weekend though; goodness knows how long it will be by then. I hope this is a sign I’m getting back to normal in terms of my super human healing powers . It sounds funny, but I’ve always healed really quickly, overnight for minor things sometimes. It really beats what I’ve been through with chemo; I was beginning to feel like the patches of skin that peeled off because of the adhesives would never heal, but they’re nearly healed now. They were hideous looking for awhile there.
Well I have to cut things short because once again I’m nodding off.
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.
I can’t decide what is happening with my hair. Most of my life I’ve been a blonde. In the last few years I’d decided to go brunette. Of course under the sway of chemotherapy, I’ve gone bald. I actually shaved my head back in April when I lost a massive amount of hair in the shower a few days after my second round of chemo. Up until last week I hadn’t really noticed anything else going on with the hair on my head… The hair in other places… well all of the hair in my eyebrows with color have fallen out. I now have clear eyebrows. My eyelashes have thinned to the point that wind REALLY hurts my eyes. On a more positive note, the last time I had to shave my legs was back in April.
Back to the hair on my head… what was left of it after shaving was about an eight of an inch long and mostly clear up front like my eyebrows. Not blonde really… translucent. Around back it apparently has some color, but no one can identify it, somewhere between clear, blonde and possibly black in a few spots. I may come out of this with a brindle coat, who knows. Suddenly, sometime between last week and this week, I’ve found one hair on top of my head that is nearly two inches long, and three hairs along the right side of my head that are nearly an inch long. Seriously I have never seen these hairs before. I don’t know if they were in hiding or what. I know they didn’t escape the shave; my husband is an expert with the clippers, and he clipped me well. Plus I check my head pretty regularly, hoping for some hair, and I’ve never seen these hairs before. The rest of my head hairs are also starting to grow, slowly and very fuzzily… very very fuzzily. They’re maybe a little more than a quarter of an inch in length, but they are fuzz, fuzz, fuzzy. My husband thinks I should shave everything down to the same length. He’s probably right, and I probably will, but that lone two inch long hair of mine… I feel like it’s a little survivor. Somehow, even though every other hair on my head succumbed to chemo, that one hair grew long and proud over the last few months; a little rebel defying the laws of chemotherapy. I hate to cut it, but I probably should. I may just admire it for another week though. Afterall I’m in no hurry, it’s not like I have a big event to attend anytime soon. Me and my otherwise clear fluff top.
Throughout my chemo treatments, the seventh day after I receive the CHOP portion of my treatment has been the toughest for me. I know my body’s immune system hits its low point this day, and maybe that’s part of it; I don’t really know, but again it’s like my body is trying to purge itself of the toxins in it. It’s just so distressing that everything I try to eat just goes through me, even when I try things like cheese and white bread. I’m so glad this should be over soon though. I just sat around and cried a lot today because my stomach kept churning, and everything I thought of eating made it churn worse. I actually cooked myself some eggs for breakfast, and the smell of them just put me off for hours. Thank heavens my hubby was hungry.
I keep reminding myself how very lucky I am though. This is nearly over for me. I just need to relax through this last bit of treatment, and I’ll be well on my way to a total physical recovery. It’s just hard to focus sometimes when you feel really horrible. All I really wanted to do today was lay around in bed, wrapped in my blankets. I didn’t, I actually got out of bed and tried to work, but I don’t know how successful that effort was. If the past is any indicator though, I should feel better tomorrow, the next day at the latest, and this time I won’t have to think about how long until the next round. Thank Heavens.
I’ve been thinking a lot today about the future, a future with no more chemotherapy. I can’t wait until my body has its natural healing capabilities back. I burnt my tongue last week, and it’s still not healed. Usually a minor burn like that would be a few days healing at most for me. I also have this big red square around where my port is inserted. My skin apparently hates all types of tape adhesives, and starting with my applying emla cream (a numbing agent) and placing a special transparent bandage over it prior to chemo and continuing on when the nurses place the needle in my port and tape it down, my skin has blistered and become horribly raw, but now it’s going to have a chance to get all better.
I still have a lot of treatments left, but they’re primarily for ensuring my long term recovery. I only have one treatment in the whole month of June, and it’s just Rituximab. After that I don’t have anything until mid July when I’ll have to get my overnight dose of cyclophosphamide at three times the normal strength. I’m not looking forward to it, but when that’s done all that’s left is a few shots to amp up my stem cells, a bit more bone pain, and three days of having my blood centrifuged, and I’m done! If it didn’t seem like it was all so far away I’d do a dance now. In all seriousness though it’s exciting to be this close, and it feels at this point like June will be a chance for me to get some of my health back. My body is typically pretty good at bouncing back from stuff; when I last had a bit of a break from my normal cycle of every two weeks and had a third week of recovery in between, I could feel myself getting stronger that third week. This will be practically 7 weeks with no cytotoxins; I’m feeling very good about that. Maybe my pelvis will even begin its rebuilding.
I was thinking today about when I might start to grow hair again (though the hair over my ears has decided to be a bit overachieving and is growing anyway… going to have to cut it soon). Currently it’s all fuzzy and blonde. I don’t know what color to expect it to grow in as; people have said it might come back white or black, maybe straight as it used to be wavy… who knows. It’s kind of fun to think it might come in all black and super curly :). That would be cool, but I’d take my natural blonde and curly as well. Whatever I’ll take anything that looks like hair at this point. I feel so bald lately because it’s colder out, and I hate hats. They make my head itchy. I wear them to keep warm, but it’s totally under protest.
I’ve also been thinking about when I’ll finally get a chance to start losing weight. It’s actually been hard keeping my weight up during the chemo, not because I’m not feeling like eating, but it seems like I can’t eat enough to keep up with whatever is going on… without ice cream anyway . Oh tragedy I know, but I have to eat a bowl of ice cream a day, or I’d be dropping a kilo or so a week. My big diet is going to start with dropping down to a bowl of ice cream every two weeks ha, ha, ha! Seriously though I can’t wait to start eating normally again. Because of all the stuff that goes on with my stomach on the chemo I have to have a protein shake everyday, which I don’t mind, but it’s a bit much sometimes. On the days when I have diarrhea I have to eat things like white bread and cheese, on the days when I’m constipated more normal stuff like salads and veggies and my good friend psyllium husk whose orangey flavor doesn’t even put me off; I just have it with orange juice. Goodness though, I’ve never had so much tummy revolt in my life. I had an iron tummy before all of this, I hope it gets back to itself soon after.
It’s exciting too that even with the problems I’ve had this week with my hip and pelvic bones it seems like my leg and pelvic area are stronger. I guess it makes sense that that sudden loss of muscle control I was feeling is nerve related; I’ll be overjoyed when that’s all working again and my crutches are back with the clinic where they belong.
Today I started my last full round of chemo. My port actually bled enough today for them to get a blood sample; the only trouble I had with it was at the end when they do the heparin lock, for some reason, the port didn’t want to take the heparin. They had to fiddle around with it, pushing the needle in deeper, wiggling it around; great fun!
I did speak to the doctor today about the sheath that’s formed over the end of the port-a-cath’s line, he said he suspects if you looked at most of them you’d see the same thing as it’s the body’s natural reaction to attempt to encompass a foreign body. He figures as long as it runs ok tomorrow, we should be ok.
One thing that has me really terribly annoyed is the fact that the clinic has somehow forgotten to schedule my next appointment. When I was in two weeks ago they’d told me they would take care of it, when I went in today they weren’t even aware I’d be in tomorrow for Day 2 of my R-CHOP treatment; I’ve been going here for 12 weeks now; my treatment doesn’t vary itself it’s quite standardized. Today they told me they couldn’t schedule my next appointment within the doctor’s timeframe (two weeks from today) because they didn’t have any appointments and don’t have any even three weeks out. I don’t know what’s happened to the place. They’re seemingly falling apart. In my husband’s words “They couldn’t organize a root in a brothel” — root is Australian for…. well you know. I just don’t know what’s going on, but I’ve been nice, calm, rational Jackie up to this point. If I go in tomorrow and they haven’t sorted this out I’m going to become She-Hulk… Jackie Smash Schedule! Seriously though, I’ve been a patient with a standarized treatment going in every two to three weeks regularly. They didn’t anticipate the appointments I would need. I feel maybe I’m somehow a substandard cancer patient; I’m not dying and so don’t need palliative care. In fact I’m seemingly cured, I’ve never looked particularly sick, though I’m tragically bald, still for my treatment to work as it should I need to complete it within a particular time period, and I will just say here and now they will have an appointment for me in two weeks; even if loud, obnoxious, indignant cancer patient Jackie has to rear her tomato red, shiny bald head and raise the roof of that place. I sound angry, don’t I? I’m a bit at the end of my tether after being badly jerked around over last treatments’ blood transfusion. I don’t particularly care to be jerked around, and since my accounts with them are currently all up to date, I do feel I have a bit of a right to expect a certain level of care.
Anyway, I’m not really angry, just averse to being jerked around, well more than averse; I refuse to allow it. It’s my health at stake, and I’m not going to risk that so that I can appear polite. I am polite, but if you step all over me, you can expect to see the ugly side of me. I’ve said it before, you have to be your own advocate when it comes to your health, because no one else will be.