Karl's Multiple Myeloma Journey

Karl finally got sprung from hospital today. Now we know the euphoria that the characters on Wentworth and Orange is the New Black feel when they are released. Like the inmates on the shows, Karl has to check in with his parole officers...aka lab technicians...on Wednesday and Monday. But, if his kidneys and blood cells are behaving themselves he can stay out on good behaviour until November 27. What happens on November 27? That’s when he will be re-incarcerated. Oh my, I’ve been watching too much Netflix while in hospital! On November 27 Karl will be readmitted to hospital for his TRANSPLANT!!! So, obviously a good day! Nurse Amy brought us the blood work results mid-morning. The creatinine was down again today. It wasn’t  a big drop from 501 to 460, but it was going in the right direction. Then Dr. Martin came in. He was very pleased. He admitted that he didn’t think Karl’s kidneys would start to recover on their own, but the amount he was peeing and the creatinine and uric acid dr

The creatinine came down! Not a lot mind you, but it did drop from 551 to 506. Finally a little good news! Karl is still in hospital, and we have no idea for how much longer. Nurse Fran told us that the Nephrologist Dr. Martin has ordered an ultrasound on Karl’s kidneys, which will be at 1030 tomorrow morning. When Dr. Jones came in he said he was going to order an ultrasound on the line site to insure there is no ‘pocket’ where the infection was. When we told him about the other ultrasound he said he would set it up so they looked at both places during the trip downstairs to diagnostic imaging. Not that it matters since it gives Karl something to do to ease the monotony. While Dr. Jones is pleased that we are bored out of our minds, he’s not living it! But again, if you are in hospital it’s far better than the alternative. And, when I went back to the house this afternoon to walk the dog I cleaned the bathrooms and enjoyed it! So much more fun than sitting and surfing the net. I won

The creatinine levels went up again today, but only marginally to 551. We were pretty upset about it until Dr. Jones came in and reassured us that it was such a small increase that he was hopeful the level had now plateaued and will go down tomorrow. Wait and see. That’s definitely the theme of this journey. Karl is feeling better today - not as bloated and he did manage to sleep some. He has eaten more today than he has since he’s been here in hospital, so that makes me feel a little more positive. Nothing else to report. Dr. Jones said he was happy Karl was feeling bored, so we are all set to thoroughly enjoy another mind numbing Saturday night in hospital.

Today is another wait and see day. I’m going to back up and explain a little since I couldn’t focus on doing so yesterday. As I reported in earlier posts, Karl came in to emergency a week ago because his temperature rose. He was started on iv antibiotics...Vancomycin and Peptase...and admitted to hospital. His temperature went down, all the blood work looked good, and the extraction was started as planned on Monday. We didn’t get enough stem cells, so on Monday night he was given Plexifor, which boosts stem cell production. Tuesday morning more blood work was taken and results were good so he was put back on the apheresis machine and by the end of the day we had enough stem cells. He was still being treated with the antibiotics for the infection in his line, but on Tuesday afternoon we were told that the line would come out on Wednesday, but the antibiotics would continue, probably for a week. They talked about the antibiotics still being via iv, but maybe as an outpatient here in St

I’m not going to write much today. It hasn’t been a good news day and I don’t feel like rehashing it. Basically Karl’s creatinine has continued to rise and was 443 this morning, which is way too high. We’ve seen Dr. Jones a couple of times today as well as a Nephrologist, Dr. Martin. For now we wait and hope the level goes down. If it doesn’t Karl may need dialysis, which hopefully will only be temporary. But nothing is for sure yet. We are playing the waiting game. Vancomycin may have gotten Karl through the extraction, but it hasn’t been our friend.

The extraction process is over, so I wasn’t sure what to use as my title today. Since the next step is the transplant I settled on Transplant Countdown. We don’t know how long the wait will be. We were told anywhere from 3 weeks to six months, depending on a number of factors, one of which was Karl’s health. We have no idea how the hiccups so far will affect the wait...it’s wait and see. And hope that Old Murphy will stop shitting on us. So today we have pluses and minuses. I’ll go through the negatives first to get them out of the way. If you are like me and not trained in biology, chemistry or medicine, it will involve another health lesson. Creatinine. Dr. Google tells me it is a chemical waste molecule that is transported through the bloodstream to the kidneys, where it is filtered out and then disposed of through the pee. Dr. Jones told us that Karl’s normal level is 100, and today his was 200. I’ve touched on the problems with Dr. Google before. While I’m sure he got the func

Today was a more positive day. Karl’s G-CFS was 68 this morning, so when he got hooked up to the apheresis machine we were hoping for 10% of that. We got 6, which means 6 million stem cells. So our 2 day total was 8.55. When Dr. Jones and Charlene came in this afternoon they said that was enough, so no collection tomorrow! They looked at the line and said they would make a decision on the line later. Their decision was that it will come out tomorrow. That’s disappointing, but not the end of the world now that the collection is complete. Karl will need to stay on iv antibiotics for a week or so, and then I guess they will decide on what type of line will go in for the implant, and when it will go in. Thanks to my sister Susan I now know that the option to the type of line he had is a PICC line, which is an acronym for peripherally inserted central catheter. Oh the strange stuff you learn on this journey. As for now, we are relaxing in Karl’s luxury hospital room enjoying the view

Some disappointments today...shall I start with the good or the bad. The good. The extraction started this morning as scheduled, and proceeded without complication. That’s probably it for the good news. This morning’s blood work showed that Karl’s G-CFS number was 34. That means nothing to me, but nurse Regan (another good Bonavista Bay girl) said that they usually extract around 10% of that number, which would be 3.4. Karl needs 10. Again the numbers don’t mean anything to me other than I know they mean millions of cells, and the numbers suggested that we wouldn’t get enough stem cells today. Regan was correct, but we didn’t hit 10%. The actual number collected was 2.55, so only a quarter of what we need. The other bad news concerns the line that was inserted in Karl’s chest. Instead of the infection around the line getting better with all the antibiotics, it is probably getting worse, and it is looking like the line will have to come out. We are all hoping it can stay in at lea

We were bored out of our minds in the hospital last night. The best possible scenario! Not much to report today. Karl is still in hospital and he is still getting antibiotics and the rest of his regular cocktail of meds. Stem cell extraction is still a go for tomorrow morning! We aren’t sure if they will do it in this hospital room or wheel Karl down the hall to the usual extraction setting. Regardless, it will be easier for Karl then getting up early at the house and getting here for the early appointment. Not a reason to want to be an inpatient in hospital, but a positive when you want to look for them. Another positive is his neutrophils have gone up to 7.1. Remember anything above 2 is normal. That means the bone pain causing Neupogen is really pushing those blood cell workers in the marrow factory to up production. A definite good omen for tomorrow!

It appears that bend in the road was a hairpin turn. We’re around the circle coming out the other side now, but we have no idea what may be ahead. Just after I posted the blog last night Karl’s temperature went to 38, and as directed we went to the Emergency Department. I don’t know if it was because Karl was wearing a mask, but immediately we were taken into triage and as soon as the nurse did the vitals and took the history she led us around the corner to an isolation room. While we greatly appreciated both that service and being kept away from people who were sick, I have to say the room was filthy. Shame on you Eastern Health. We took pictures but I won’t post them. I digress... By the time we got to the hospital at 1030, Karl’s temperature was back down to 37.6. But his blood pressure was up and his oxygen was down, so they took blood, did a urine test, and sent him for a chest X-ray. His white blood count was down, but we knew that. Otherwise the tests came back without showi

Karl had a lot of pain overnight and slept little if at all. We had to be at the hospital for 1030. Sherry and Stacey were the nurses. Stacey called Dr. Hickey, the transplant doctor who was scheduled to see Karl today, and got permission to give him a shot of morphine. While he still complained of intense pain, his body language indicated that it did take the edge off. Sherry drew blood from his lines, flushed them out, and gave Karl the Neupogen shots and then we waited for the blood work to come back. The results didn’t all come at once, but as they appeared on their computer Sherry or Stacey relayed them to us. In the first batch was the platelet number. If it dropped below 50 it would mean a transfusion. It was 163, so no worries there. The next results included hemoglobin and neutrophils. The hemoglobin was in the 130s, which is fine. The neutrophils were where expected, but it is not fine. For a healthy person the neutrophils (which is part of the white blood cells) are 2 or h

We’re in for a hard couple of days... Other than not a lot of sleep because of the discomfort from the line, the morning started out ok. We went to Public Health and met RN Lori-Lee. We’ve met a lot of great nurses, but she would definitely be up there with one of the nicest. Must be her Bonavista Bay roots! She gave the Neupogen injections and changed the dressing over the line. It looks all right considering. While I was driving home Karl said that he was feeling some twinges in his hip and he wondered if it was the bone pain that Neupogen sometimes causes. It was. Within a couple of hours he was crazy in pain down his legs, which fits the pattern we were told to expect. He just took some codeine and has fallen asleep. Hopefully he will sleep until it’s time for more codeine. Before this last set of meds the only way he could get comfortable at all was by walking around. He won’t have a problem getting his 10000 steps today. I should probably explain the purpose of Neupogen. I’

I am thankful to report that there’s not much to say today. Karl had some discomfort and pain last night due to the line insertion, but the codeine took the edge off. He can’t take normal over the counter pain meds because they might also work to bring down a fever, and if Karl gets a fever, we all want to know. A fever would indicate some sort of infection, and any infection would have to be taken seriously and treated right now because his own immune system is not equipped to deal with anything. But no fever so far! Also no hair loss. I know some of you are thinking how would you know? He hasn’t shaved his head since Monday and he has five o’clock shadow all over. Our only task today was to go to an appointment with a Public Health Nurse. Today it was Charlene. She looked at the dressing over the line and declared it ok and not in need of replacement. Then she gave the Neupogen shots, complimented Karl on his decision to wear a mask (his first time), and sent us home. He has slep

Hurry up and wait. That line has never made more sense to me as it does today. Karl’s appointment at Diagnostic Imaging to get the line put in was at nine, and we were there at 840.   He had to register at the DI registration desk and was directed to go around a corner, up a hall, through a set of doors labeled ICU, and where he needed to be would be on the right. The directions were correct, but the closer we got the more dubious I became. They are renovating that area of the hospital. At least I hope it is renovations that has led to construction grade plastic looking material being taped to the ceiling. The ICU doors were fully open and we strolled on through. I could only assume the area was no longer being used as ICU. When we arrived at ‘the room’, we could see patients through the doors and nurses scurrying about doing their chores, but there was no place to check in, nor that we could see at the time, a place to sit and wait. I stopped. Karl strolled further down the corrid

There’s not a lot to report. On Saturday we mostly stayed around the house and did more of the same on Sunday with the addition of a drive to Cape Spear because we were getting cabin fever. Karl had some diarrhea and has been really tired, but thankfully no nausea. This morning we went to an appointment with Public Health Nurse Brittany who gave him 2 shots of Neupogen. Then back home for more lying around. We have to go into the hospital tomorrow which will give us a little change of scenery. It’s going to be a long week...

I slept a little last night; Karl not so much. Dex can take the blame. On the flip side of Karl only getting about 3 hours of sleep is he didn't get sick! Knock on wood! His appointment at Ambulatory Care was at 830 this morning, and again Stacey was his nurse (I apologize for the misspelling of her name yesterday). The Golden Nugget was waiting for him on the tray in front of his reclining chair. Karl asked if he had to take it since he hadn't been sick, but Stacey and I yelled in sync, "Take It!", so he did. As always the first task was to check his vitals. Blood pressure up a little but still within the normal range. He's a wuss where needles are concerned so he winced while the IV was inserted, and then sat back to get a bag of fluids and more sleep stealing Dex. Public Health called after we were there for about 30 minutes to set up a time for the Neupogen shot on Monday coming. Another done tick on the list. Then we sat around, visited briefly with ano

Neither of us slept well last night. Understandably. It was an early morning start with an 815 appointment at the Ambulatory Care Unit. Stacy was Karl’s Nurse today. She took his vitals and started his IV, which was attached to a bag of fluids first. As that started she asked to see the calendar that Dr. Jones gave him yesterday so she could double check that all the appointments were listed the same as she could see on her system. No problems there. Then she completed a questionnaire with Karl for Public Health so that a request would go to them to start injections over the weekend. Pam the pharmacist came in shortly after Stacy had things up and running to talk about these injections. Neupogen. Those are the ones that his drug company won’t cover. They stimulate young blood cell production, and therefore are an essential part of this process. Go figure why they aren’t covered. Anyway, Pam explained how he would access them, and said that since Karl has been giving himself the Lov

So I haven’t posted in a while because there was nothing to update. Karl has been almost two weeks without chemo, which was nice. During that time he had regular blood work and a CT scan, but we didn’t get results from either. That was on the agenda for today. Our morning started with a trip to the hospital to have more blood work. As I was waiting I was reminiscing about my own yearly blood work. I would have to fast for 12 hours, so I would be hungry and cranky waiting in the lines to take my number, get registered, and finally go in the cubicle to get jabbed. I always felt irked when I saw people jumping the line, especially since I didn’t know why they got this special treatment. I remember speaking to my friend Patti about it a couple of years ago. Patti is a diabetic so she has to have fairly frequent blood work, and when she fasts she often gets low sugar and feels miserable, yet she doesn’t get to jump the line. Now I know who does. Cancer patients. When you think about it, i