Blood counts dropping/Hospital/transfusions
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Christmas was kind of a bummer…….my hemogloboin was at 7.3 and the oncologist would not break her hard and fast rule to do a red blood cell transfusion on the Friday before the weekend even though we knew that the number would continue to fall due to the chemo I’d gotten all week. I ended up sleeping and feeling horrible all weekend…..I was there in body, but not much in spirit. Had a HUGE altercation with the oncologist that Thursday before Christmas and I requested a change in oncologist. She had come out of her office and out to the open chemo chairs where I was (only curtains) and proceeded to berate me at the top of her voice, talking to me like I was two years old. Haven’t gotten the changeover done yet…..the holidays have apparently hung up things regarding paperwork, but we pushed some today…..and it was obvious nobody had done anything either.
Went in on Tuesday (yesterday) for my weekly blood count, and of course, it was 6.8….and I’d been light headed even sitting down for several days. Suddenly, there was a big rush to get me to the transfusion place because I “NEEDED” a transfusion…..but only one unit. The Nadir for this drug is day 10-17…..so the lowest points in coiunts will be today through a week from now. That one unit isn’t going to last long,….i’ts probably half eaten up right now. Mayo had told us that the cutoff for red blood cells was 7.0 Hemoglobin, HOWEVER….some people do not do well at 7 and need the cutoff to be a little higher. I am going to try to talk to the Mayo hematologist right after the holidays. A lot of them are gone on vacation right now and I just don’t care now. If it had been any other weekend……I would have just sucked it up and tried to power through….and I guess I did try anyway…..but we still ended up in the parking lot of the ER on an aborted trip to the hospital. We called my GP who advised me to go back home based on a change in how I felt suddenly (after dry heaving).
The port has been “okay”…..they left it accessed the entire week, though most days they kept it uncovered during the chemo. That kept me from having to b e reaccessed every day last week. The upshot of that…..was that I still got two very big welt type blisters from the adhesive allergy. Even the spray on barrier didn’t help. It is now completely uncovered and was accessed for the first time since surgery a week ago Monday……when they did the transfusion yesterday. The gal there was absolutely wonderful, though I still hate that poke……it’s pretty hard to take and stings for a while. I had forgotten about that part. It does start bothering me later each evening…..partially because of the blister (about 2 inches long two ways) and just the incision. The surgeon really sewed it down into my chest very tightly……which hurts when I cross over with my right arm….but at least the port doesn’t move around when it gets accessed. The transfusion nurse was very pleased with it.
I do feel some better though still very short of breath. Tonight, I have a small temp….99.8 degrees…probably from the transfusion. That will go away once I take a hydrocodone. My heart is jumping around with an irregular beat , but they don’t seem very concerned about that. If I’d felt last weekend like i do right now……it would have been a lot nicer Christmas. I’m mad as hell at that oncologist on so many levels. There have been more comments made (probably by people who shouldn’t have said anything) that indicates that this isn’t just a problem I’m having with her…..that this is the way she is. She lacks compassion, but also just plain common decency.
Julie
Julie,
How are you doing? I have been thinking about you. Hope your blood count is better and that side affects from chemo is manageable.
Big hugs
BrigitteJulie-
I’m getting ready for work, but quick note to say you are in my thoughts and prayers.
Lots of love and hugs coming your way-
Catherine
Lainy…..temp is down to 100.6…..the cutting off point for contacting the doctors/hospital. We are leaving here soon anyway to go in for my day 2 treatment. This could be something to do with the port surgery….or something to do with the platelet transfusion?????? My appt is at 1:15 for that. Wish you had a magic wand too. Will email you privately later.
Love, Julie
Gee wiz, Julie, what the heck?! Maybe you should have been drinking something very strong! Glad the fever is coming down. I agree that you should run in to just have them see what it could be. I am beginning to think “if it is there, you will find it”. SO, time to get rid of all the “its”. I wish I had a magic want to waver over you and make it all go away! Thinking of you all the time.
By about 10:30 p.m.last night, I was in some considerable pain….and difficulty swallowing (it hurt…pretty much in the area of the jugglar vein, not the port entry. This morning, I had several drinks and it was pretty much okay again….tolerable anyway. Howeer, I felt likke a MAC truck had hit me when I tried to get out of bed….and I was “cold”. Came out here to the kitchen and took my temp….101.3. The dischange papers said to get in touch with them if temp went over 100.6…..so looks like I will be calling down to the hopsital soon…or cancer center……and probably going down there earlier than my 1:15 appt. It’s not all that far away. They’ll probably want to do blood labs to look for an infection. CRAP! I just finished some breakfast and it didn’t hurt to swallow, so at least that has settled down. And…now that I’ve eaten, I don’t feel so cold either, so maybe the temp is coming down? Still going to call them in a bit. Nothing ever seems to be “easy”.
Julie,
You had quite the day. Hopefully you will be able to rest and get some sleep tonight.
Love & Hugs,
DarlaHi Julie. You had called the shots long ago and I hope that in a day or 2 you won’t even know it is there. A good thing Kathleen is such a wonderful DIL and will help so much for Christmas. I wish it was already Saturday night as I know for sure what your best RX is. It is called Robert&Colin!!!
Julie…what a day you had! I hope you get some much deserved, painless rest tonight.
Thinking of you and sending tons of hugs your way.Marion
We started out the day getting up at 5;30 a.m…….down to the hospital at 7 a.m. to the “Healing Center” to do the platelet transfusion. After several IV attempts in the back of my right hand, they went for the crook of my left arm where the lab had just gotten access easily. That is a wonky place for an IV, but worked great to get the transfusion. Then off to the Cath Lab to have an IR guy put in the port. They used the IV in the crook of my arm for meds…..and before they could even start…..it wasn’t working right…and then it came out of the vein. So, the IR guy came around, and did some kind of “puncture” procedure using ultrasound to guide him into a deep vein in my upper arm. The port proceudre went forward. But, I am apparently getting very bruised in the area of the surgery. I haven’t looked for myself yet. After the port…I had recovery for about an hour and a half…and was seriously behind schedule. They wheeled me over to the Cancer Center…2 and a half hours after my appt time……but after a short wait….we saw and talked to the doctor and then got started on the infusions. It was 10-20 min of a drug Zofran for nausea and then 20 min to infuse the VIDAZA chemo drug. It was decided that we would leave the port accessed as much as possible this week…..so that ithere would be minimal pokes to the area since it is so bruised and sore. They tried a new spray first on my skin before applying the bandaging . They spray is supposed to make a barrior between the skin and the adhesive. We’ll see how it works, but they said that they used it on another gal who has severe adhesive allergies like I do (she blisters as well) and they had no problem. There is one side of the bandage that isn’t sticking well, but we will have to address that tomorrow. I may have to add a strip of tape when I go to bed, but I’d rather not because the burning will wake me up. We finally left there at 5:30 pm. I’m so tired right now and am hurting. I think the IR guy sewed the port down pretty securiely to try to keep it from rolling and turning 90 degrees on them when they try to access it. But…all that sewing added to the discomfort now. He also was going to try to put the port a little more shallow than the first guy did, because it was so deep under the skin tissue. . It was a very long day….and a very emotional day. Just glad it is over. So glad we had leftovers from last night. Comfort food.
Thanks everyone…and yes, Marion, I can feel the tons of love….and support too. Son and family were here tonight…..5 year old and I frosted and decorated cookies before supper. It was a good distraction. I managed to put together a meat loaf and pulled a potato casserole out of the freezer and DIL put it all together on the table. But, when it was time for them to leave, my son and I both had some problems with tears. It’s so hard.
I will post when the day is over.
Thank you all for the encouragement and prayers. Love you all.
Julie
Julie,
I will be thinking of you tomorrow and hoping all goes well. Also that the weather is in your favor. Weather here has been much the same. Lot’s of snow & cold.
Many thoughts & prayers headed your way.Hugs,
DarlaBrigitte,
At 7 a.m. tomorrow, (Monday the 19th) I will get transfusions of platelets to boost the numbers from 28K to whatever is necessary for surgery. Then at 10:30 a.m., I will be taken to put in a port again After that and some recovery time, I’ll be wheeled over to the adjoining cancer center to get the first infusion.
The drug, Vidaza, starts tomorrow and will be an infusion every day this week. Then the next Tuesday, 27th, I go back to have blood counts checked because as low as my counts are now, the drug is going to push them much lower. I will need transfusions during much of this treatment. probably on a weekly basis The counts may not , and probably won’t, come back up on their own. The idea is to kill off the bad cells and irregularly formed cells….and unfortunately, that is true for most all of the red, white and platelets……and then “tease” the bone marrow to produce some more normal cells that can take over for a while if I get a remission.
Supposedly the worst and potentially dangerous side effect is to be the low blood counts. Besides that….fatigue (probably also from low red blood cells) and constipation. I’ve read some anectodal stories from other patients that say they had nausea, vomiting, and a list of other side effects, but I can deal with that. It’s supposed to be considerably “easier” on the body than the Gem/Cis I did 2 and a half years ago after the first liver resection.
I’m a “little” terrified to get a port again…..had one for the chemo after my first resection…..and immediately got a blood clot in my leg that sprayed my lungs as well. I know it’s better if I can be up and about, but unfortunately, getting this drug is going to lower my red blood cells more than they are and I’m already very short of breath (hemaglobin was 8.3 on Friday night).
Meanwhile, I”m trying to get a few Christmas things done…..wrapping gifts and getting the last of them purchased (mostly on line). I think I have one more to get and that is just a gift certificate from Amazon which I can print off here at home. I’m “trying” to do a couple things with the 5 year old grandson….we have a gingerbread house to decorate, which I’m hoping we can do today. The weather hasn’t been cooperating here in Iowa for getting together. Maybe today.
Thank you for thinking of me. There’s a 50% chance this will work for a remission for a while….please say some prayers or keep me in your thoughts.
Julie
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