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Okay, my stepmom wanted pictures so I had pictures made. If you don't want to see them, you don't have to but I don't think they're all that bad.
First, we have the picture I've labeled in my mind as "Does this chemo pump make me look fat?"
I mean, look at me, I look huge. Can you believe I've lost almost forty pounds? Imagine how fat I was before, jeez. Anyway, this is me with my pump in my little black pack around my waist.
Okay, now the scary needle picture but you can't really see the needle, it's under that yellow cap. See the condensation under the bandage? I guess that's from all the betadine and alcohol they use to clean my skin, then they put on this skin-tight dressing and it condensates in there. The scar above is from the surgery to insert the port.
Finally, you can see my little pump That is what goes in the little black fanny pack and it's loaded with my medicine. Pretty neat.
Posts: 14428 | Registered: Aug 2001
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Wow, thanks for sharing with us. There's a man at my church carrying a pump around in a fanny pack right now, but I don't know him or his story really well. Have to admit to being curious about how all this works.
You look really healthy in your photo, I'd never know you'd been through all you've described!
Posts: 3149 | Registered: Jul 2005
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I think it's the sticking-out tongue - it's hard to look really weak and sickly when you're sticking out your tongue. Posts: 1522 | Registered: Nov 2005
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Cannot look, sorry, Belle, but remember the plasmapheresis days and don't need to to empathize.
Posts: 10890 | Registered: May 2003
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I'm okay, accio - feeling a little sickly and a whole lot fatigued. Guess that's the low blood counts. I can't seem to get enough sleep.
The nausea is under control with the new prescription of Zofran, except that I have to be careful how many I take - my insurance would only pay for 12 pills per month. The cost? Almost $600 for 12 pills. So, I only take them when I really, really need them. Luckily they do work.
Got my statement from the doctor - my first round of chemotherapy cost over $16,000 - that was just for the three days of therapy and the medications. Again, I thank God for insurance.
My biggest complaint right now is the metallic aftertaste that is constantly in my mouth. Everything I eat tastes like metal. It's very annoying.
Posts: 14428 | Registered: Aug 2001
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My counts had not improved enough - they fell another 40,000 to 60,000. Anything under 100,000 is too low to receive treatment. So, I got sent home to rest a week and let my counts come back up. The only good news is that it wasn't low enough to require infusion, which can only be done in the hospital.
Because my red cells were also pretty low, I started Aranesp, which is a red cell booster apparently a lot like Procrit, which you may have seen TV commercials for. It's side effects are fatigue, and in some patients pain in the bones and joints. The nurse called it a "hot shot," because it burns going in and boy does it ever! I took it in my arm. The lady next to me told me to next time take it in my stomach but I told her she was crazy, I wasn't going to voluntarily allow someone to stick a needle in my tummy. I mean, Eww. She swore it burned a lot less if the shot goes in the abdomen and the nurse agreed with her saying most patients prefer the abdomen. I told them they were lucky I sat still and didn't hyperventilate when they poked a needle through my chest, to ask me to take a shot in my tummy was just too much. I'll let my arm burn, thank you.
I'm seriously bummed, I did not want to take a week off, because it only means more time tacked on at the end. I am grateful, however that I wasn't hospitalized but Carla, one of my chemo nurses told me that most people whose counts drop like mine do eventually do wind up needing transfusions and it wasn't really all that bad. Still, I'll avoid the hospital if I can.
Posts: 14428 | Registered: Aug 2001
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That's interesting, I didn't know aranesp hurt. Belle, diabetics take insulin under the skin in the abdomen and thighs all the time. I don't ever think of it as a shot in the tummy, I think of it as a shot in the fat. I don't know if that might help you think about it differently.
I think that's where Mrs M gave herself shots when she was pregnant, too.
Posts: 1014 | Registered: Jul 2005
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(((Belle))) My mom has started a series of tests with her doctor to find out why she's chronically anemic. They've basically ruled out internal bleeding. She's going to a hematologist this week. She's a nurse and thinks the tests they are ordering is because they suspect some kind of cancer. The not knowing is the hardest part. Anyway, hope things improve for you! Posts: 6394 | Registered: Dec 1999
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When I was expecting my son, I had to give myself injections every 8 hours. The tummy is definitely less painful than any other site. And I had the freakiness of having a baby in there! But the shot goes into the layer of fat between the skin and the baby, so he never complained.
Posts: 10397 | Registered: Jun 2005
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Belle, we're praying for you. I'm really sorry I haven't been posting a lot in this thread. I went through this with my dad and it's bringing up a lot of memories. But I wanted you to know we are thinking of you.
Posts: 22497 | Registered: Sep 2000
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quote:Originally posted by Tante Shvester: When I was expecting my son, I had to give myself injections every 8 hours. The tummy is definitely less painful than any other site. And I had the freakiness of having a baby in there! But the shot goes into the layer of fat between the skin and the baby, so he never complained.
waiting for SoS to log in and complain... </tangent>
Belle, I believe that there are fewer nerve endings in the abdominal skin than in the arms, which might explain why it's a preferred site. My mom's on call tonight and on her way to a nursing home out in boo-foo-egypt at the moment, hopefully I can talk to her about it later tonight for you.
In the meantime, I wonder if there are non-medication steps you can take to help boost your counts. Like eating spinach and beef liver is supposed to help your iron levels...
Posts: 4515 | Registered: Jul 2004
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So far I haven't had any problems with pain, thank goodness. I read some info on the web about the drug and the pain in the joints is a pretty rare side effect. Fatigue is the most common one. I certainly have that, or it's something else entirely because I napped this afternoon, and I still feel tired. One thing about chemo-related fatigue is that they tell you it's not relieved by sleep. That seems to be true.
The nurse did say that the white blood cell booster shots were much more likely to cause pain. And the woman there with breast cancer agreed with that assessment. So I'll just keep praying my white counts are okay!
I know the shot in the abdomen is a mental thing and I probably would like it better, but I don't know if I'm ready yet. Maybe I'll be brave next time. From what my nurse said, I'll probably need the Aranesp every cycle now. Maybe by the time we're done I'll have worked up the courage to get the shot in the abdomen instead.
quote:My mom has started a series of tests with her doctor to find out why she's chronically anemic. They've basically ruled out internal bleeding. She's going to a hematologist this week. She's a nurse and thinks the tests they are ordering is because they suspect some kind of cancer.
I know that the doctors all said they were shocked I hadn't come to the doctor before because I was so anemic, so I know that anemia can at least be a sign of colon cancer. I hope she learns some answers really soon - the not knowing is scary, but the sooner they find out the better. Let us know how it goes with her, I'll definitely keep you guys in my thoughts.
In only recently had the strength and courage to really look at colon cancer and was shocked to discover it's the second most lethal cancer - only lung cancer kills more people each year. And had my cancer just been one stage higher my outlook would have been much, much bleaker - considering that my cancer had perforated the bowel wall it was a shock to the doctors that my lymph nodes were clear usually when there's a complete perforation into whatever layer mine was in it almost always indicates metastasis. :shudder:
I got to sleep through all the worry after the surgery and before the pathology report came in, by the time I had all the morphine out of my system and was alert we already knew the good news. I cannot imagine the terrible 36 hours my husband went through waiting for that report.
[ January 16, 2006, 09:53 PM: Message edited by: Belle ]
Posts: 14428 | Registered: Aug 2001
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So they did treat me today, my platelets were back up to 211,000. Good job, little platelets.
My hematocrit was 34, still needed a shot of Aranesp, they give me a shot anytime it's under 36.
I went to the store after I left chemo and that was a mistake, I got very sick and wound up barely making it out of the store and then getting sick in the parking lot. Yuck.
One new thing I've noticed over the last week is I seem to be losing an awful lot of hair. Every morning when I wake up and brush my hair, it comes out in clumps. Still with the roots attached. My hair was cut last week and my hair dresser noticed that a lot of hair was falling out when she combed it. So I asked the nurse and she says "oh, yeah, you'll definitely lose hair on this regimen. Not as much or as fast as others, you'll probably not wind up bald, but you'll definitely keep losing it."
Wonderful. I'd almost rather go completely bald than have it get really thin and patchy. It's the same story as all the rest of this chemo - most people don't lose that much hair but there are a few that react to it more strongly and I'm apparently one of them. There was a man there today who was on his 20th infusion of oxaliplatin, the drug that causes the extreme sensitivity to cold, and he has never had one incident where cold bothered him, not one. Me, today, after getting an infusion - the first one in three weeks - I felt my throat begin to close when I breathed in the air in the freezer at the grocery store. See, I needed frozen broccoli and it was way up high and being short, I had to practically step inside the freezer to get it.
Posts: 14428 | Registered: Aug 2001
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That stinks. That really stinks. You have my sympathetic cyber shoulder available to you to lean on when you like.
Maybe you can go hat shopping. I get lots of hats from the TLC Catalog, and I don't even have hair loss or cancer. I just like the comfortable, no-nonsense, suitable-for-everyday hats. And the prices are reasonable, too.
Posts: 10397 | Registered: Jun 2005
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Today was my third time to go to chemo and get sent home because my platelet counts were too low for treatment.
the nurse said she'll have to clear it with the doctor, but more than likely, I will be on a 3 week schedule now, my body needs two weeks off instead of just one between treatments.
You have no idea how upsetting that is. For one thing, it just means the whole process is drug out even further. The biggest hassle will be the kids - now that I won't be finished until July, that means I've got to arrange child care for the days I go into treatment once they're out of school. And, our family vacation to Washington DC is the week of July 4th. I was hoping to be able to celebrate the end of my chemo on that trip, but no such luck. I'll have to receive my final treatment the week after we get back.
I asked the nurse if there is anything we can do to keep me on schedule and she said not really. Were it my red blood cells or my white blood cell counts we could take boosters for them, but not for platelets. She said there is a shot out there for platelet boosting but it isn't getting widespread use because of its side effects - one of which is anemia, which exarcebates the problems people are already having. Her words were "Dr. A is not a fan of the shot." So...the best way to keep treating me is to allow me an extra week between treatments for my body to recover.
They also don't normally transfuse for platelets, something about the body building up a resistance to the transfusions. CT, Theaca, that sound familiar at all?
My platelets today were 40,000. Normal is 150,000 plus. Usually, I recover to back over 100,000 when I get the extra week, so the best way to handle it is to let me just recover on my own.
I have to admit, I cried on the way home. I just want this to go smoothly, and to be over as quickly as possible, and now I'm adding an additional seven weeks to my total treatment time. Not what I wanted.
And remember that neck pain I was having? It's definitely related to the Aranesp shot. I got the shot today, but no chemo, and within four hours the severe neck pain developed. The nurse said she was at a loss to explain it, it's not one she's heard before, but that she will definitely mention it to the doctor for me.
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(((hugs))) I'm so sorry. I'm still praying for you, and hope the year will fly by so this will soon be but a memory and you can be your normal self.
Posts: 21182 | Registered: Sep 2004
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(((Belle))) We're all thinking about you. Good luck, and stay strong. You're an inspiration to us all.
Posts: 1789 | Registered: Jul 2003
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Oh Belle, what a blow it must be to have the light at the end of the tunnel seem further away. My prayers are with you.
Posts: 3149 | Registered: Jul 2005
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I'm sorry that this will be dragged out further, but I'm glad your distressing news was not worse.
You scared me with your title change.
Added: I didn't mean this to sound like I'm telling you to cheer up since it could be worse -- it's still rotten news. Posts: 9866 | Registered: Apr 2002
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Hang in there. I'm so sorry this isn't going according to the original plan, and I hope you get some good news soon.
Posts: 22497 | Registered: Sep 2000
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I've edited so the title is more reflective of the actual news - slightly distressing.
I must admit I was indulging in some self-pity earlier, I just really wanted to get this over with. But, hey...at least I will have a week that I actually feel better and have some energy in between treatments now.
Posts: 14428 | Registered: Aug 2001
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Belle, you have every right to self-pity of it's how you feel. I'm sorry I can't do anything else than this : (((Belle))).
Posts: 3526 | Registered: Oct 2001
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I'm sorry you've had this setback. (((Belle)))
At least it sounds like you've found a silver lining? I'd probably want to get it all over with too (I know my mom did), but given the choice between 5 months of feeling like absolute crap constantly or 7-8 months of crappiness interspersed with breaks of normality... Having a few breaks might be really nice.
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I'm sorry things aren't going according to plan, Belle. I'm continuing to pray for strength for you and your family.
Posts: 2711 | Registered: Mar 2004
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Belle, in your situation, self-pity is not an indulgence. I'm so sorry for this setback, however minor (it's not really minor, but it's not major, either - semi-minor).
BTW, Richmond is only 2 hours from DC (hint, hint).
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