Karl's Multiple Myeloma Journey

All news is good news! In my last update last Thursday I reported that Karl had been released from hospital. Since then we have been staying pretty low key. It was pre-arranged that he would go into emergency at the hospital on Saturday morning for blood work. That all went really smoothly and about an hour after we got home Dr. Bergstrom called to tell us that all blood counts were continuing to head in the right direction - either up or down as needed. This morning we went back into Ambulatory Care, where RN Stacey drew blood and did his vitals. While he passed the blood pressure sitting versus blood pressure standing test which indicates possible dehydration, she decided to give him a bag of fluids ‘just because’, and we had to wait for the blood counts to come back anyway. When the blood results came back they were all wonderful: platelets 194, hemoglobin 100, neutrophils 3.0, creatinine 77, potassium 3.7. All normal except hemoglobin, and that’s still rising nicely. The only o...

Karl was released from hospital today! We weren’t expecting that he would get out until tomorrow, so it was a very exciting surprise when Dr. Bergstom said he could go after he had another bag of iv potassium. We are relaxing in our St. John’s house now. Karl refuses to call it home since home is Eastport. What an incredible feeling it is to know that it is all behind us...the chemo, the stem cell extraction, the transplant. It will take a while for Karl to totally regain his strength and rebuild his bone marrow, but we have faith that time will take care of that. He will get his potassium from bananas and his phosphates from soft cheesies from here on! On Saturday Karl has to go into the hospital for blood work, and on Monday he has to go to an appointment at Ambulatory Care for more blood work and various tests. I won’t update the blog until after the appointment on Monday. Until then we are going to totally enjoy our time away from hospital!

There’s not much to report today, and that is good news in and of itself. The blood measures are continuing to go up while the creatinine levels have not risen. Karl was weaned off dexamethasone, and will be weaned off Gravol tomorrow. Hopefully the nausea will not reappear, but Charlene says if it does he can go back on Gravol and still go home on Friday...as long as no other curves are thrown this way. It is truly miserable in St. John’s today. 5C with drifting rain and fog. So while we wouldn’t choose the hospital as a place to hang out if we had a choice, if Karl was out of here it still would have been a quiet day of relaxing and resting. In an earlier post I reported that a MRI had been ordered to check Karl’s kidneys. Karl understood that was going to happen before he got released. That is not the case. They have sent a requisition for a MRI, but they don’t want it to happen before late February or early March, so as to give his kidneys lots of time to repair themselves befo...

What a difference 24 hours can make! Karl is definitely well on the way to recovery now, and they are hinting that he may be released from hospital on Friday if there are no setbacks. How good is that! I got a bit of a scare tonight though. I went home to cook some supper for us. I brought back real plates, our own cutlery, cloth napkins...the whole deal to celebrate the upswing in Karl’s health. I walked to his room, and it was empty. Not one of his belongings was there, and Karl wasn’t there. No big deal. I assumed they had moved him. There were no nurses in the hall so I went back to the nursing station to ask where he was. “He hasn’t been moved” was my response. I second guessed myself wondering if I had looked in the wrong room, so I walked down the hall again. Picture it now...I am holding a Tupperware container full of food in one arm, and in a large cloth bag I’m carrying I have the plates,  cutlery, my purse...I make sure I look at the numbers. His room is definitely em...

The stem cells are growing; happy dance day! And in all likelihood we should have danced on Saturday. Remember I posted that because the wbc had gone up when his blood was taken Saturday morning it probably meant that the neutrophils were growing. It looks like that was a correct assumption. The blood that was taken yesterday (Sunday) was manually read this morning and it had a neutrophil count of 0.5, which is a large first count. The even better news is today’s count. 2.0 is the bottom of the normal range for neutrophils, and today Karl’s count was 2.4. That’s likely better than most of you who are reading the blog unless you have an infection of some sort that your body is fighting. Those little stem cells are warriors! Karl’s platelets are still 14 today, but that’s ok because they grow after neutrophils, and Karl’s new bone marrow will produce neutrophils first now until the sores in his mouth go away and the other digestive system damage from the chemo is repaired. His potass...

Karl looked a little better this morning and the diarrhea had slowed but not stopped. We were anxiously awaiting the blood counts and were very disappointed when the nurse brought them in with  the neutrophils listed as still 0.0. The platelets had also dropped to 14, but the total white count had risen to 1.0 and hemoglobin to 97. We didn’t understand the rise in wbc (white blood cells) without a rise in neutrophils, and we were very worried and upset. Then Dr. MacIntyre came in. She told us that Karl’s neutrophil count was actually listed as pending, and the 0.0 was from yesterday. Apparently the neutrophils are counted manually on a slide under a microscope, so sometimes on the weekend they don’t get counted if it isn’t urgent because of the smaller number of staff in the lab. The numbers are urgent to us, but obviously not in the grand scheme, which we understand. It would have been nice to have known this beforehand or for the nurse to have told us the counts were pending. I...

Yesterday was the calm before the storm. I might as well use cliches to start and finish. We were so upbeat yesterday when Karl was feeling so much better. I posted the blog early, but shortly after he started feeling some nausea. He was given some maxeron via iv and shortly after the diarrhea returned with a vengeance. Karl says it was every 5 minutes or so until around 2am, and after that it was every 20 to 30 minutes, but never longer between bathroom runs. Might as well use puns too. Last night and today is definitely the sickest he has been through this whole ordeal. Dr. MacIntyre is the hemotologist on call today. She came in early this morning. She said the Flagyl wasn’t working as well as she would like, so she wanted to switch him to Vancomycin. We reminded her that Karl’s chart lists an adverse reaction to Vancomycin from his last hospitalization. She said she knew, but before Vancomycin was given through iv and was filtered through the kidneys, causing the creatinine ris...

There is not much to write today. Karl reports that he is feeling a little better, but he continues to have some diarrhea and nausea. His neutrophils are still  0.0, platelets are 43, hemoglobin 83, and potassium 36. We are hoping for neutrophils of at least 0.1 tomorrow or Sunday so we can do the Stem Cell Happy Dance. Fingers crossed!

It looks like the melphalan did what it was supposed to do. Karl is now officially neutropenic. In other words, his neutrophils were measured to be 0.0. His hemoglobin is 88, platelets are 73, and potassium is up slightly to 3.8 because they have been adding it to his fluids. The neutrophils will likely stay at 0.0 for several days, but when they rise even to a mere 0.1 it will mean that the transplanted stem cells are growing. We know the Neupogen is in his body cheering them on, but we wish there was something else we could do to speed this process. But of course there isn’t. We just have to wait, hope, and pray. Karl is still being treated for C Diff, which means Flagyl and fluids but no anti diarrhea meds. The pain and discomfort from diarrhea is Karl’s main symptom now, and morphine is back in the mix to take the edge off the pain. His mouth is tender but he says “not bad”, and while he has had some nausea it is no longer constant and he hasn’t thrown up. Dr. Tompkins is the h...

The bacterial infection Karl has is called Clostridium Difficile, or C Diff for short. He still has no fever, so the infection is contained within his bowels and/or intestine, where hopefully it will stay until the Flagyl kills it. Hopefully. Otherwise everything is pretty much as expected. His neutrophils were 0.2 this morning with the white blood count being 0.3 overall. His hemoglobin stayed pretty much the same as yesterday, but his platelets dropped, but not to the level that requires a transfusion. His potassium was also down below normal so they started adding it to the iv fluids that he was put back on last night. He’s still getting anti-nausea drugs, some dex, Neupogen, and the regulars: antiviral, anti fungal, a sleeping pill and blood thinner. If his platelets drop any more they may decide to hold the Lovenox (blood thinner) for a while, but at today’s level it was ok to keep it in his drug cocktail. He still has diarrhea and nausea, but he hasn’t thrown up. He reports tha...

I’ll get right to the point. The stool sample sent to the lab yesterday was a precautionary step always taken for stem cell  transplant patients to ensure that the diarrhea was caused by the chemo and not an infection. Most of the time it comes back negative for infection and then the diarrhea is treated. Late afternoon Karl’s sample came back inconclusive so more tests were run. Then it came back positive for a bacterial infection. This is terrible news. His neutrophils were measured at 0.5 at 6 am this morning, but are still dropping and may be at or near zero now, so he has no immune system to fight this infection. He was started on the antibiotic flagyl, but prayers and positive thoughts are needed as well. If there is any positive here it is that his temperature has not gone up at all, so he is not showing any sign of infection other than what was found at the lab. He was tired all day and mostly napped. He was nauseous but did not get sick, and still has diarrhea. He is sti...

A more eventful day for sure... After I left the hospital last night Karl called me to report that he had been sick. The nurse had given him something through iv for the nausea and he was feeling a little better. This morning we talked before I got to the hospital and he told me that he hadn’t been sick again, but he had to have the anti-nausea med three more times, and hadn’t slept much. By the time I arrived at the hospital Karl also had diarrhea. None of this was unexpected. Nurse Practitioner Charlene came in around ten. She examined Karl’s mouth and said that he was also showing the first signs of mucositis, another expected side effect. Basically the malphalan (chemo) killed the Myeloma cells and bone marrow, but also damaged his digestive tract, which would eventually result in nausea/vomiting, diarrhea, and sores throughout the mucous membranes of his mouth and digestive tract. So we were expecting these symptoms, and were told they would occur around now. Charlene started ...

Boring is still the flavour of the day! It has been a slow weekend here on 4 North A. Karl’s blood counts have continued to drop, but with the exception of his hemoglobin which was low to start, everything else is still within normal range, albeit at the lower end of normal. I expect either tomorrow or Tuesday will bring below normal counts. Karl is tired, which is to be expected given the low hemoglobin, the chemo, and the end of the steroids which boosts his energy. He always had a severe drop in energy as the dex wore off, and we are seeing the same pattern now. Otherwise, he is not having any real side effects yet. We know that won’t last, but take it while you can right? Karl hopes the hospital  is bringing in take out wings for supper. I know it’s good to think positive, but I have a feeling it’s not going to help with this wish!

Nothing new to report today. The blood counts have started to drop but are all still within the normal range. A longer post tomorrow!

It’s been the best possible day here at the hospital because we have been bored, bored, bored. Yeah for boredom! Karl’s vitals are all normal and his blood counts have not yet begun to drop. He had some dexamethasone via iv early this morning and then the regular cocktails of lovenox, acyclovir, allopurinol and an anti-fungal med whose name I don’t know. Added to that was a couple of Golden Nuggets (Zofran) for nausea and senokat for constipation. The sum total of all the drugs in was nothing coming out but normal fluids. That’s the kind of math we like...new math I guess. The only side effect so far is a little of the burnt mouth feeling, which he is so far managing with a saline rinse. We are hoping for a boring weekend because we know to expect some negatives next week as his blood levels drop. Happy Friday!