Wow I thought I’d had bone pain before, but today has left me completely in awe of just what bone pain can be. The point of my daily double shots of neupogen/neulasta is to get my bone marrow to produce so many new stem cells that they burst from my bones into my blood stream. Apparently that takes somewhere between 5 and 7 days after you begin the shots, and mine has started, and it does feel a lot like my bones are bursting. Continue reading Neupogen/Neulasta and Bone Pain
My blog seems to have a theme lately. In case anyone’s missed it, I’m really, really, really, REALLY tired from my stem cell mobilization chemo. Just being upright seems to take more effort than I feel like I have in me, but I’m pushing forward. I worked six hours today. That was an effort, even though my laptop probably doesn’t even weigh 5 pounds.
The worst part of today though was that when I woke up, I was really shaky and sick to my stomach. I had to take some anti-nausea drugs and lie back down for an hour or so before I actually felt good enough to get out of bed. Still my stomach felt like I was on a roller coaster for a good part of the day. I’d feel hungry, and by the time I got to the kitchen to grab something I’d just feel too sick to think about eating. Hopefully all of this passes soon though. Before next week anyway. I’m due to start my stem cell harvest very, very close to the day that I usually have some of my worst side effects from chemo. I hope I’m not in the clinic and going through that, or worse in the middle of getting my neck catheter.
It’s weird to think that there’s a strong likelihood that next week at this time I will be finished with this. I can really start to move beyond all this structuring of my life around this treatment. I’m very much looking forward to that.
Alright, my chemo on Saturday was designed to wipe out my bone marrow so I can start up fresh… but I think it’s gone one step further and just done me in entirely. I’m so tired I can hardly stand to move, and the neupogen is making my bones so sore I don’t want to move anyway. Somehow I really super lucked out, and instead of getting one neupogen shot a day, I get two. Super! I get my choice of shooting into my tummy or my upper thighs. I’m starting to look like someone is beating me. I have bruises on my arms from blood draws, on my belly and upper thighs from the injections I’ve had to have, and a massive welt on my chest from my sensitivity to the adhesive they have to use around my port when they maintain the access line.
But I don’t care about any of that because I don’t have to have any more chemo! Yippee! This was my last treatment. I do not have to make plans for someone to pump poison into me anymore. All that’s left is to get a catheter in my neck on Friday, and keep going with these neupogen shots until I’ve got enough stem cells for them to use if I ever need a bone marrow transplant. I don’t mind them taking stuff out of me nearly as much as I mind them putting stuff in.
For now though I am so, so tired and weak I can hardly function. My mind is clear at least, but my body is so weak I can hardly sit up. I don’t feel like doing anything either. Nothing at all. Thank God I had a bit of interesting work to do today because it took my mind off how crap I’m feeling
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
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… 😛 blech.
Well I’ll be kicking off the start of mobilization tomorrow at 9:20am with a big fat dose of Rituxan. I’m not looking forward to it, but I’m resigned to it. The rituxan shouldn’t bee too bad though. I’ll just have to get up early & remember to put on my emla cream. I think I’m going to mention to my doctor tomorrow that I’ve had some insomnia lately. I don’t know whether that matters, but I figure I’ll let him decide. Continue reading Mobilization Begins Tomorrow
My mobilization anxiety is pretty well over, at least 85% over. I’ve heard from some people who’ve been through it, and they didn’t think it was so bad. I still wish I didn’t have to do it though. I hope my new hair doesn’t all fall out. It looks pretty, and it’s super soft. I just sit around rubbing it Continue reading Mobilization Anxiety Over
Today I got the paperwork for my stem cell mobilization, which starts this Friday, and I’ve had the strangest reaction. I don’t want to do it. I’m just starting to feel ok after months of being so tired and sick, and I don’t want to be sick again. I want my normal life back, and I feel like I’m going backward instead of forward. I was afraid this would happen if they made me wait too long to do this. It’s not like it really matters how I feel; I’ll still do it, but I’m not going to like it. Maybe I’m just building it up in my head too much, I just have this physical memory of the drug they’ll be giving me, and how sick it makes me feel when they give it to me. I can feel it now just writing about it, and it makes me want to take a vacation somewhere, where they don’t know anything about cancer. Continue reading Mobilization Set
This week my oncologist returns from a conference or vacation or something, and I will get the final word on whether I can begin stem cell mobilization, the last bit of my treatment, on the 16th or whether I’ll end up having to wait another month. I’m really frustrated at the possibility of having to postpone the finalization of my treatment. I’m not happy at the weight I’m at; I don’t feel like my body is happy here, and it’s getting increasingly harder to try to maintain this weight. I’m just not that hungry lately, and I’m not comfortable eating high calorie food just to keep up an unhealthy weight especially when the only reason I’d be being forced to do that would relate to how convenient the continuation of my treatment is to the clinic. I really hope the doctor will just let us go on with the treatment. I’m tired of all this to-ing and fro-ing with the clinic, and I’m tired of my bones aching. I want to get on with things so I can finally heal. Fingers crossed anyway.
I was beginning to think I would never get over this last round of chemo, but thank goodness it seems I’m finally moving out of the woods. This has been my worst ever for sure. Maybe I got food poisoning or had some sort of gastro-intestinal something on top of the chemo; I don’t know, but I’ve just been really unwell. Too unwell to really fully appreciate that, that was my last full dose of chemo :). It’s just washing over me today, tonight really as today was pretty rough too. I had a nap around 5:30pm though, and waking up from that and having a cup of soup has made me feel the best I’ve felt in days. I am tired again though, and it’s only 10:30.
I wonder how long it will be until I stop feeling so tired. Probably after the mobilization I’ll have a bit of tiredness, that and the requisite bone pain from the neupogen shots. I don’t know how similar it will be to the neulasta shots I’ve been receiving; they cause some pain, but it’s not overwhelming or anything, I have more trouble with the restless leg issues when they give me phenergan and rituximab. The neupogen may be worse though because they’ll be giving it to me for a number of consecutive days. I can take it though; it can’t be worse than the sneaky fractures.
It just occurs to me that I’m in the home stretch. I’m excited about the stem-cell mobilization. It sounds so futuristic. I could be cloned! Not really I guess, it’s illegal everywhere, but the cells to do it will exist in a freezer somewhere. It would be pretty cool to have a clone; like a super special twin I guess. Who knows though, I’ve never had a twin or a clone. I wonder who audits the frozen stem-cells to make sure they don’t confuse me with someone else? I’ll have to ask them.