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
I got my apheresis catheter (vas-cath) inserted today, and I’m feeling it. I got up at 5:00am and had a little breakfast this morning, because my surgery was scheduled for noon, and I wasn’t allowed to eat six hours in advance of the surgery… I thought an early breakfast would stave off the hunger… think again, I was starving by the time I got to surgery. The procedure was a pretty simple one, supposedly as simple as my port-a-cath insertion, but jiminy first they delayed the procedure by two hours (and by two o’clock the nurses were starting to look like a little barbeque sauce and they’d make a passable meal). When they finally got me in there it was a like a little chamber of horrors.
First off they do the surgery in an x-ray room on an x-ray bed… narrow, cold, metal. I hopped up on the table and they started to prep me, bp cuff on one arm, oxygen feed, rub down the port with alcohol. Then the nurse who was supposed to access the port got started. Life would be easier if people would listen, but… I’d asked hours before for some emla cream (it’s a topical anesthetic that goes on my port to numb the skin before they poke me with their needles), everyone kept saying it would take too long to take effect, but it only takes 30-60 min, considering my waiting time… it would’ve had plenty of time to kick in, but alas no one could be bothered. I also mentioned my port needed a longish needle… that was proven when the needle they popped in wasn’t long enough and they had to pull it and push a fresh one into my chest. Thanks for the double access, it really didn’t hurt enough the first time.
At least they were able to use the port for pushing my meds and no one had to engage in the hunt for a viable vein. Once that was all set they covered me in pink antiseptic goo and stuck a special adhesive mat to my face. Then they gave me the nicest drug. It made me feel a bit floaty, but it was supposed to put me to sleep… no luck. So they either cut into me then or stuck me with a local anesthetic, whatever that hurt like heck, and everyone said you’re not supposed to feel that… you have the drugs ladies… make me not feel it :). After that it was done, I was ushed out to the hall to wait two more hours to be set free. Thirty minutes later the anesthetic kicked in and I fell asleep :).
They woke me an hour later letting me know they were going to let Bernie come wait with me. I think maybe he threatened someone in the day surgery because no one had bothered to tell him that my surgery had been delayed, and he was starting to get really worried that something had gone wrong. We were both happier waiting together though so that was nice. Also, he prevented me from cannibalizing a nurse by providing me some sustenance whilst we waited. After another hour, they rolled me up to their day surgery recovery, separated us again, and made me get dressed by myself. I could really have used a hand. My neck is basically taped to my chest, and the catheter is inserted into the veins in my neck, so every minor head movement hurts a lot. They recommended Panadol (Tylenol in the states) for the pain, but I’ve gone for the Panadene Forte (Tylenol with codeine) they gave me for my hip because this hurts about 10,000 times more than my hip does. I can’t believe I’m going to have to sleep with this thing in my neck and my neck taped to my chest. Good luck to me on that one Anyhow, five days from now and it’ll be gone, and I’ll be a POST treatment cancer survivor.
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.
Today I worked up the energy to go the Pumpkin Patch to look for a gift for one of my workmates who is about to be blessed with a baby girl. I was looking at a few baby things online, but I couldn’t see the colors/patterns very clearly, so I decided I just needed to be tough and venture out, and even though it really wore me out, I’m glad I did, because those baby clothes are so much cuter in person, and I found a couple of really pretty onesies that are all sorts of variations on pink and white with angels and butterflies and a little warm and adorable looking pink sleeper with a little angel on it. I hope they like them, but in case they don’t I asked the cashier to include whatever they would need to return stuff for an exchange. They were really nice about everything, they even wrapped the presents up in a pretty little yellow box with a lovely white ribbon.
After all that adventure (it took all of about 30 minutes), I had to have a nap when I got back home. It’s so weird to me to sleep in the afternoon, and I’m so grouchy when I wake up; I just hate it. I’m groggy and incommunicado for at least an hour after I wake up, and sometimes I’m starving, sometimes I’m nauseated; not fair
It was so funny walking through the mall to the Pumpkin Patch today, sometime last week I’d made a similar trip and my hubby was telling me to slow down; today I’d walk 10 yards and need to lean over and catch my breath :). At least I’d done the walk last week when I was feeling better, and I can at least know that if it weren’t for chemo I wouldn’t be such a weak and breathless mess.
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