Karl's Multiple Myeloma Journey

I feel like we should be having cake, but Karl’s research tells him that sugar feeds cancer cells, so we (him more than me) have cut back on sugar. He also tries to avoid artificial sweeteners except in Diet Pepsi, which he just can’t completely give up. Quality of life is important too. So it hasn’t been all smooth sailing. Karl takes daily chemo in an oral pill form, and like all chemo there are side effects. He is learning to manage the side effects better, in some cases through other medications, but you do what you have to do. During the summer his neutrophils (the white blood cells that fight infections) were dangerously low. We spent most of that time at home so as to avoid other people who may have been sick. Even catching a normal cold is a big deal for Karl. He had one earlier in the fall and had to go to his doctor where he was prescribed an antibiotic and a puffer, and had to go back for a checkup after a week to make sure his lungs had started to clear. To put it in pers...

It’s hard to believe that it has been a year, but it has! Karl’s new bone marrow and immune system is a year old today. All in all it has been a good year. Karl takes chemo in pill form (Revlemid) every day, he gives himself an injection of blood thinner (Lovenox) every day, and he still has a bone builder (Zometa) via iv every month, but gradually all of the other meds have been stopped. As each drug was taken away its side effects also vamoosed, albeit slowly. Unfortunately the three remaining drugs often leave Karl tired, sore, achy, and with some digestive and bowel issues. But when you consider the alternatives,... At the 100 day mark Karl was told he had a very good partial response to the bone marrow transplant. His myeloma markers were still visible, but they had dropped considerably. All of his other blood and kidney markers were within the normal range. Basically that’s still where he is. We know that currently there is no cure for Multiple Myeloma, but for Karl right now...

Wow! It’s hard to believe it but it is 100 days since Karl’s stem cell transplant. When I think back, at some times it seems like that was half a lifetime ago. Other times it seems like it was only yesterday. Enough of that. You want to know how Karl is! When people ask me, “How is Karl?”, lately I’ve been saying that he is good. When he got out of hospital back in December he had very little energy. He rarely left the house, and when he did things such as plow the driveway, he usually had to have a nap right after finishing. Thankfully we had very little snow! He also slept a lot back in December and early January. The man who was usually up by 6am was still in bed until after 8am, and he was back there by 8pm, even after having a mid-afternoon nap. Now all that has changed. He is back to his usual sleeping pattern, he rarely has a nap, and he is ‘out and around’. While he isn’t going to fires with the volunteer fire fighters here in Eastport, he goes to all the meetings now and he ...

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...