September 24, 2016 - A not so good week

On Monday, September 19, we had our follow-up visit with Dr. McCarron as we had finally completed Chemo round #1.  She was pleased to hear that Brian had felt pretty well after the last three weeks and his blood work he had that day was also in the ranges that she was happy with.   So Tuesday, Round #2 would start with an increased dosing in his CyBorD chemotherapy and he also was due for his next monthly pamidronate injection which is the bone strengthening drug. So back to Grand River on Tuesday for the start of the second round.  He got the bortezomib injection in the belly and this time his cyclophosphamide was 16 tablets and the Dexamethasone was 5 tablets.  The pamidronate was an IV in the arm and they sent us home with what looked like a baby-bottle attached to his IV which I was to remove once the medication had administered over a two hour period.  All was going well, I was able to take out the IV from his arm without too much trouble - they will make a nurse out of me yet!  Otherwise, Brian was feeling not too bad.  He had trouble sleeping that night but the next day he didn't feel too bad and was able to spend his day normally.  

Then on Wednesday night he started to feel unwell, started to get severe diarrhea through the night and was feeling quite nauseated.  As the morning progressed, I became quite concerned, so phoned the doctor's office and they were concerned that Brian might have picked up yet another infection - this time C. difficile.  This is a bacteria that lives in our gut and in immunocompromised patients it is hard for the body to fight.    She wanted me to bring Brian in to Kitchener as they felt he needed hydration and wanted to do some stool samples to check for C. difficile.   So off we go to Kitchener and they had set up a bed with IV right in the cancer clinic examination room for Brian which magically had a "flushing" toilet that pulls out from underneath the sink in a cupboard.  Who knew what they hide in their cupboards!  They had me bring Brian directly into the clinic and he was not to sit down or be anywhere near other patients (just in case he had C-diff).  So four hours of IV was given in the clinic and they were able to get a stool sample and send it to the lab.  Brian started to feel a bit better with the IV hydration and Dr. McCarron decided that he could go home for the night but we had to come back the next day for more hydration. It took us a good hour to get home that night due to traffic at rush hour in Kitchener.  Brian in the meantime was starting to feel quite nauseated in the car and thank goodness I had the foresight before we left the house that morning to put some bags in the car in case he was sick as we definitely needed them!  

So back to the clinic the next day for more hydration and the preliminary report on the stool culture did show one part positive and one part negative so Brian was isolated again from other patients and given his hydration, so another full day spent at the hospital by the time they did more blood tests and the waiting around for results.  Dr. MCarron finally came to see us mid afternoon to say that she was happy that his blood work, moreso his biochemistry was back up in the normal range.  Apparently the day before the blood work was showing high potassium and something to do with his GFR which can be indicators of kidney failure.  So with the IV hydration, his blood work had all come back into the normal range.  She was still waiting on the final report on the stool culture and decided that Brian would be ok to go home without admission to hospital but she set up Home Care to come in and give him IV hydration both Saturday and Sunday. Chemo scheduled for this coming Tuesday was now cancelled but we have to do blood work on Tuesday and as long as that is coming back okay, then chemo would resume the following Tuesday (Oct 4).  In the meantime on Friday night, Dr. McCarron called and said that Brian actually DID NOT have C-difficile on the final pathology.  That was good to know but now we are wondering what did cause him to become ill. Was it just side effects from the chemo and his weakened immune system?  It just seems that they really don't seem to know what causes things to happen and I guess there is really nothing that Brian did wrong, it just makes us so much more aware of how our immune system works and how much it does protect us and when someones immune system is compromised, you are so susceptible to all kinds of viruses and bacteria that are everywhere in our environment.  It is almost making me become a germaphobe!  

So the week certainly didn't go as we had hoped but we are just taking each day as it comes and deal with whatever comes up!  So I will end this post with some pictures as promised - one of Timmie taking care of Brian while he is getting his hydration at home today and some of the drawings I was telling you about in my last post.  Brian has not felt well enough to work on anymore drawings this week but maybe he can get back to that next week.  

Timmie taking care of his dad! 



The pictures below are some of Brian's drawing.  My favourite two are the first two. I think he has quite a talent! 

September 10 - Great Week!

Well, things are definitely looking better for Brian.  I think his body may now have "adjusted" to the chemo and seems to be happy enough to get rid of those cancer cells - or at least we hope so.  Brian had blood work on Tuesday morning and all counts were coming back normal or close to normal and chemo #3 was a go.  We went to the chemo suite, Brian had his chemo and within 20 minutes we were out of there.  The doctor advised us to go to our local lab (Life Labs) on Thursday to get the blood work done there so we didn't have to travel all the way to Kitchener and she would phone on Friday if anything was amiss.  I was quite happy to go to LifeLabs as they allow the patient to go on line and get their own results.  I think it is great that the Labs are doing this now as I think a patient should be able to see their own results.  Brian had no side effects after Tuesday's chemo, about the only thing that we noticed is that he does have trouble sleeping some nights but that is probably due to the dexamethasone part of the chemo.  We went for the blood work on Thursday and I was checking the results by Thursday night and I was quite pleased to see that now Brian's white count and neutrophils are actually on the "high" side.  They are now "slightly above normal range".  Brian's sodium was just one point below the "low normal" range so that has improved too.  

Brian has felt good all week, in fact he was starting to get quite bored with not much to do since I wouldn't let him go to any public places.  So I suggested that maybe he should look into doing some drawings or paintings as Brian is actually quite talented that way and maybe he could learn more about it and practice.  So we went to Michael's and we bought a couple of "how to draw" books and a book to actually do the drawings in for practice and some pencils.  He came home and got started on it and is now "hooked" and quite enjoying it.  I will have to take some pictures of his drawings.  I am absolutely amazed at his drawing ability and he said the "how to" books are really quite helpful and he is actually enjoying it. I really am blown away by his drawings and he has only just started! 

On Thursday and Friday, Brian was feeling so good that he decided to get back to doing some light exercise and he also went out for a bike ride around our neighbourhood and Brian has felt well enough to go out for our daily walks with Timmie.  Brian is much happier when he can get his exercise in and of course that has to bode well for his fight with this cancer.   We rounded out Friday with a visit to my dad's and went out for supper with Roy and Pat.  It made us feel almost normal again and it was great for our morale.  

We plan to spend a quiet weekend and then Tuesday will be chemo #4 (which will end Round #1).  Two more rounds or a total of 8 more weeks to go with CyBorD and then the big reveal will be another bone marrow biopsy to see if he shows a reduction in cancer and/or indicates a remission.  If all goes well to that end, then stem cell will be next.  

We are getting there...slowly but surely! 

Friday, Sept 2, 2016

Good news!! We got through a whole week without any real major issues!  Here is how the week went since my last posting:  

All last weekend, even though we were hoping for a nice drug-free weekend and Brian feeling well; it didn't turn out that way.  He was not feeling well at all and we were both starting to worry that things were not going as we had hoped.  We went on Monday to the chemo clinic for Chemo day #2 but when we told them he had not been well over the weekend, they did not want to give the chemo.  They also noticed that his sodium level was dangerously low and they immediately hooked him up to IV Saline for the whole day on Monday.  Chemo was cancelled but we were there until well after 5 o'clock and the doctor (filling in for our doctor who was on vacation), said we would have to return tomorrow and have the sodium checked again and decide whether chemo was a go.  We returned Tuesday and it had come up a bit but not enough; so IV Saline again, this time only for 2 hours and then they gave the okay for chemo.  Brian was starting to feel a bit better though so that was a good thing.  We then had to return again on Wednesday for blood work.  Yet, again, the sodium was not high enough and the doctor wanted another 4 hour IV saline done, so for us another full day at the hospital!  They went over with Brian that he needed to continue to take in a fair amount of fluid but not necessarily just water, he needed some Gatorade which has sodium in it  (but not too much as his potassium was high), eat "potato chips" or anything with high salt - first time ever a doctor has recommended eating "junk food" and generally take in other fluids along with the usual amount of water you should take in a day.  So we had a break on Thursday with no appointments and Brian did what he was told - took in a lot of fluid - he counted it this time and it was approximately 125 ounces of fluid he took in on Thursday alone!  Needless to say he was running to the bathroom a lot!  He was really starting to feel good though, he was getting back to his normal self again. 

He had absolutely no side effects (yet) from the chemo!  So we had one last blood work appointment for this week which was today.  This blood work was to check his sodium level and also to see how much his neutrophils (white count) may have dropped due to the chemo.  As you all may remember, in the first chemo round, four days later Brian had lost all his neutrophils and ended up in hospital.  So after the blood work, we waited for the results and all his counts came back normal!  We were ecstatic to say the least!  His sodium had risen quite nicely from a low of 126 to now 135; his neutrophil count was 9 which apparently is a little above normal so he was good to go for the weekend AND he did not need to have the neupogen injection which was the plan for today if his neutrophils were dangerously low. 

So all in all that was a great week for us, other than the time spent at K-W, we can handle that - better than being admitted to hospital.  They certainly did keep an eye on things this time.  Brian is feeling good and we decided that we would go to the Keg tonight for dinner in celebration.  Now we have a whole three days of Brian feeling well and no doctor/Cancer Clinic appointments until Tuesday.  Tuesday will be chemo day #3 and we will see what the next week holds for us and I pray that we get through it just as easily as we did this past week and maybe even a better week if his sodium count stays where it should be. Obviously it was the low sodium that had made Brian feel so rotten last weekend.  

So all is good for the moment and we are happy that things now seem on the up and up and Brian is hopefully tolerating chemo well.  14 more weeks and then chemo is done and then maybe stem cell if all goes well!   

Hope you all have a lovely Labor Day Weekend and I know that my grandkids are so looking forward to going back to school on Monday (NOT!). Breanne is happy though....