January 27, 2017

This has certainly become a journey of ups and down and the new year hasn't started off as we had hoped.  Brian went for chemo on Tuesday, only for it to be cancelled for a second week in a row.  His white count ANC (neutrophils) were only at 0.4, way too low to administer the chemo.   His back pain has been unrelenting and he has been trying to take his morphine on a more regular basis to try to keep it to a minimum.  Of course, the nights are worse, he just cannot get a good night's sleep, waking from sleep every 2-3 hours, only to need more pain medication.  The daytime pain is more tolerable, but Brian is sleeping a lot throughout the day as he feels so exhausted.   Friday was a big clinic day as Brian was scheduled for a CT in the morning, blood work after that and then we saw Dr. McCarron in the afternoon when all the "rushed" results would be back.  It was a long uncomfortable day for Brian having to be at the hospital for 5-6 hours, sitting is definitely not the best for his back.    So, the CT scan ended up showing severe degenerative disc disease in his lower back with compression of the lumbar vertebra 3 on the vertebra below.  There is some mild disc bulging and spurs, and narrowing of the spinal cord - spinal stenosis.  She says most of this is not cancer related, although the compression of L3 could be caused by the cancer, due to the weakening of the bones.  For the most part though, the degenerative disc disease is not caused by the cancer.  She recommended a referral to an orthopedic back surgeon who can assess him and may be able to operate where they put cement between the vertebra so they do not collapse on one another.  She said the name of this procedure, but I can't remember what it was now.  Once again, just too much information overload! She also gave Brian a more potent narcotic, Dilaudid (hydromorphine) to hopefully help a bit more with the pain, especially through the night.  He has taken it over the weekend and although Brian feels it does work better than the morphine, it still does not allow him to sleep through the night.   Dr. McCarron also recommended a referral to the pain clinic to help him manage the pain.  Breanne has some friends who recommended that we see a friend of theirs who is an anesthetist and specializes in pain and has a clinic in the Toronto area.  He told them that he would be willing to see Brian urgently, we just need to get our doctor to make the referral.  So we are going to pursue that option for sure.  

With respect to the blood work on Friday, his white count (ANC) was still very low and she said his marrow is having a hard time recovering from the chemotherapy; so she told me to give Brian an injection of Neupogen over the weekend, and on Tuesday we still go for chemo, but she is going to only give him the velcade and the dexamethasone, and eliminate the cyclophosophamide for the next two cycles.  She is going to see how that works with regard to his white count and then we are to see her again in two weeks for further decision-making before the next round starts.  These two weeks are to try to finish off the round we are on right now, but have had to miss two weeks due to his white count.  

We asked her about the reasoning for continuing chemotherapy and she said that the government sets out the guidelines for any particular chemo which is based on studies and what is best for the patient. She says the 8 to 9 rounds of CyBorD gives the longest remission after.  The longer it is given, the longer the remission rate is after it is finished. So if you stop mid-way, the remission is probably 4 months and if you go the full therapy, it gives you 6 months after stopping before recurrence.   Also, if you stop before the full course, it restricts the chemo that can be used for recurrence.  This is how we understood what she meant anyway. As I say, so much information, it does become overwhelming at times and we sometimes wonder if our interpretation of what we are told is correct! 

So that is where we stand for now.  Brian is not able to do much with this back pain, he can't even go for our daily walks with Timmie.  He is able to get about though and tries to be as active as he can without overdoing it, he does some light stretching to try to keep his muscles pliable.  In all, it is dragging him down, I can see it, although he does an amazing job of keeping positive and going one step at a time.  He ends up watching a lot of TV to try to pass the time and of course with all that is going on south of the border, that news is just depressing; we are just so tired of it all.  

We will forge ahead and hopefully soon we can get Brian's pain management under control! I think I heard the other day that it is only 7 Mondays until Spring!! 

Happy New Year - January 2017!

I have been a little remiss at keeping up my blog in the last few weeks.  It has been a busy time, and for the most part, I just haven't taken the time to sit down and write.  I hope all our blog followers had a wonderful Christmas with their families and friends and now look forward to a happy and healthy 2017.  We had a great Christmas with our family and enjoyed watching our grand-kids enjoy their presents!  We love the excitement of it all!

Here are a few pictures of our family together on Christmas.

Since the last time I wrote, chemo for Brian has gone pretty well for the most part.  We got through about 7 weeks of not missing any chemo and Brian's blood counts were all really good; his white count (ANC - neutrophils) was staying well within the normal range.  Brian was feeling relatively okay other than the usual side effects of nausea, tiredness, etc.  Then about a week before Christmas he started to develop lower back pain which seemed to wax and wane, but then right after New Year, the pain was becoming quite severe; so much so that he was having trouble sleeping or even being able to find a comfortable position to sit or lie down.  He could no longer go out for our daily walks with Timmie and was trying to rest it as we are hoping it was just muscular.  I ended up calling our oncologist about it and she brought Brian in for lumbar/sacrum x-rays and gave him some Tylenol No #3 to help with the pain.  Tylenol No 3 was of no help at all and the following week, she then prescribed Morphine which also didn't seem to touch the pain. Of course, the x-rays didn't show anything, but x-rays are not the best to show bone lesions and now Dr. McCarron has ordered a CT scan.   

We went for the usual Tuesday chemo this week (Jan 24), only to find that his neutrophils were really low again - enough so that they cancelled chemo for this week.  We were actually very happy to not have chemo, hoping it would give Brian a break and help him feel free of the nausea and maybe the back pain.  Dr. McCarron has scheduled a CT scan of his lumbar/sacrum area on Jan 27 (next Friday).   We have found this week that even without having chemo, Brian is suffering badly with the back pain, especially at night, can't find a comfortable position and keeps going out to lay on the couch which is about the only place where he can find some comfort at night.  The chemo nurse explained to us that he was not taking the Morphine correctly in that he needs to take the Morphine more regularly and not just wait until the pain is bad.  He has to nip it in the bud with the Morphine when the pain is 4-5/10 and not wait until it is 8-9/10.   So, Brian has been doing that this week, but still to no avail.  The pain is not too bad during the daytime, but night-time it is almost unbearable for him.  Anyway, not much we can do until we get further results of the CT scan (if that shows anything).  If it doesn't then I assume it is either nerve or muscle pain, but we have no idea what would have caused this.   We are a loss to explain it.  Breanne has been reading some multiple myeloma forums on the internet and other patients have said the same about bony pain in the back and it seemed that some patients said that once chemo was done, the bone pain abated as well.  So, we are also not sure if this pain is actually caused by the chemo. The chemo is attacking the bone marrow, so it does kind of make sense, but does this mean he will be suffering until May when chemo is scheduled to stop?  We just seem to have so many unanswered questions as no one seems to be able to give any explanations and testing for things takes time, meanwhile he suffers, as pain meds don't seem to be working!

Both Brian and I are feeling that Brian needs a break from chemo (he has been on chemo since August), but we will have to see what the doctor says as we are going to ask what ramifications there are if he elects to stop chemo now.   They have their regimens of what works best, so we have to make our decisions from that.  We would really like to end chemo and just start maintenance since Brian is supposedly already in remission, but we have to see if that is possible at this point. If this back pain is chemo-related, I just can't see Brian going through until May suffering like this.  Through this though, Brian has to be commended for still keeping such a positive attitude, he still has a smile on his face, and just keeps forging forward.  I'm not so sure I could be that way if our roles were reversed!  He always makes my care-giver role easy as he never complains.  I love him dearly for that! I just wish I could do more some days.  

I will update again once we have the results of the CT scan.  Meantime, we will carry on as normal and hopefully soon Brian can get over this back problem! 

A little bit of disappointment - December 5, 2016

Well, after our good news last week, we were a little bit disappointed after seeing Dr. McCarron today.  Even though Brian is basically considered in remission right now, it doesn't mean that chemo is going to stop after his fourth round at the end of December.  I guess we either didn't understand the process well enough or became confused somewhere along the way.  I guess what threw us off was the stem cell process.  Apparently, if Brian had elected to go the stem cell route, then after 4 rounds of chemo (each round consisting of 4 weeks), they would then do the harvest of the stem cells and he would then go the route of the stem cell process.  But, if you elect not to go through stem cell or are not eligible for stem cell, then the CyBorD chemotherapy will go on for another 4-5 rounds (each round consisting of 4 weeks).   What we thought was going to happen was that if he didn't have stem cell, then it was a matter of finishing up the 4th round and then go on some sort of maintenance therapy.  So that was a little disappointing for both of us as now we still have to do weekly chemo which will now take us to April/May/June as long as we don't have to miss any.  The good news in that respect is that she is now going to drop the dosage of the chemo medications now that his cancer has drastically reduced, and that should mean that Brian will hopefully not have to go through those couple of days of nausea and feeling unwell every week.    

So, obviously now, our little getaway that we were hoping to plan is now going to have to be put off until the spring.   We now potentially have to be driving in bad weather to get to Kitchener, so I am going to pray that if we have bad weather it is not on a Tuesday!   

Of course, we are very disappointed, especially Brian, as he just wants this over with.  He is sick of taking pills and getting poked and prodded with needles.  He is getting long term bruising on his arms and his belly as they never get a break from the needles!  

So we cried the blues today, but we realize this is all for the best in the end.  We did ask what happens after the full rounds of CyBorD and for sure after that is done, it is just a matter of Brian being monitored and there will not be maintenance therapy after it is done and we hope remission lasts a long time.   

It is all good though, we will just soldier on week by week and get through it.  Then, when the spring sunshine comes back, we will be through and can enjoy a nice summer and maybe, just maybe, a little vacation for us both!  

I'm not sure if I will be blogging before Christmas, so I would like to take this moment to wish everyone a very Merry Christmas and a very happy and healthy 2107!!  

BEST NEWS EVER - November 24, 2016

Since my last post, Brian had to have a bone marrow aspiration and biopsy on November 8, as our oncologist wanted to see how the cancer was responding to the chemo.  Well, yesterday, we got a personal phone call from Dr. McCarron to say that she was absolutely thrilled to tell us that Brian's tumor burden which was at 40% on his bone marrow biopsy in August, had come down to 1% which basically means the cancer is now in remission!!!  She actually seemed quite surprised it had come down that low, and as is usual with Brian, that is quite "unusual and rare", BUT we will take that side of unusual and rare!  

I have no doubt that all the prayers and positive thoughts from all our family and friends and Brian's heavenly angels have played a big role in his recover from this!  We are so very very grateful for this outcome.  We still have to finish up the chemo which will be a total of 5 weeks from now as long as none are missed in the meantime.  That will take us to December 28th as his last one.  Dr. McCarron said she was going to be sending these results off to the stem cell doctors, but after Brian and I discussed it yesterday, Brian has definitely decided against stem cell.  We are just going to continue with the chemo route for the future.  Stem cell is very risky and Brian was just not feeling comfortable about it, not that I blame him. We will support whatever Brian feels is best for him.  

We have a followup appointment with Dr. McCarron on December 5, 2016, and we will see what her plans are for the future, which I assume with be some form of maintenance therapy and close followup; and we now hope that Brian will have a long remission.  

So our short term plans will be to book a last minute vacation sometime in January just to get away for a week somewhere that has a warm climate (Brian's wish!) and just enjoy some much deserved down-time and relaxation.  

We have had the best early Christmas present we could ask for!  

Feeling blessed right now.....

Friday, November 4, 2016

Well, after my last posting, I said that we were going on the Tuesday to get Brian's last chemo that would be the last for Round #2; that unfortunately did not happen.  Even though I had given Brian two neupogen injections the week before, his neutrophils on the Tuesday (day of chemo) came back at 0 again.  We were shocked; obviously Brian's body is having a hard time recovering his good white cells after a chemo session, even with two neupogen injections.  So we were instructed to go home and once again I would administer two injections of neupogen, one on Thursday and one on Sunday, and then we were to see Dr. McCarron on Monday, Oct 31 to followup.  On Monday (Oct 31), we went for blood work and then saw Dr. McCarron.  Now his neutrophils (white count) was at 43!!!  So way high!  She is concerned that Brian's blood counts are all over the place as this is "unusual" with this chemo regimen.  She has decided that she will need to do a bone marrow aspirate to see where his cancer is at and whether it is responding to chemo.   So this procedure is booked for Tuesday Nov 8.  She told us to go ahead with the chemo scheduled for the next day (Nov 1) and she would see us again next Monday before the bone marrow.  So Brian had chemo on Tuesday and so far this week, he has remained feeling well.  That chemo then marks the end of Round #2.  Round #3 will possibly start next Tuesday right after the bone marrow aspiration.  

In the meantime, we had a followup appointment with the stem cell doctor in Hamilton on Thursday.  We were feeling a little hesitant on what she would say about what has been happening with Brian.  I counted how many chemo sessions he had missed because of his abnormal blood work, and he had missed 6 sessions.  Dr. Marcellus sat down with us and said that perhaps stem cell was not going to be a go for Brian.  She wanted to reassure us that stem cell is not the "be all and end all for all cancer patients" and that it was just another way to treat cancer, but not necessarily is it the plan for everyone.  She said that other chemo regimens have really improved over the last 10 years and that another chemo regimen may be what would work best in Brian's case.  She still hasn't completely ruled out stem therapy, but she reiterated that having the bone marrow aspirate was the right step to take to find out how his disease has responded to the chemotherapy so far.  Once the results of that aspiration are available, then further decisions can then be made.  She explained that because Brian is already needing neupogen to bring his white count back, that will not bode well for stem cells and this means they will not be able to get enough stem cells to rescue, and that even if they got enough stem cells, he may not be able to tolerate the Melphalan that is required to be given after stem cells are removed.  She said that what is happening with Brian's goods cells is that his bone marrow is having a difficult time reproducing all the good cells quickly after chemo and; hence, why we are basically having to miss chemo every other week - just so it gives his body a chance to bring his counts back up again.   This could also be related to his having chemotherapy five years ago and why his bone marrow is reacting this way.  

Anyway, I can't say that Brian was disappointed, in fact, I think he was feeling a bit relieved. He has been quite worried about what it may be like to have stem cell therapy as he knows it is a hard procedure to go through.  So, we will await the results of the bone marrow aspirate, see where his disease is at and then follow whatever recommendations Dr. McCarron has now that we know that stem cell may not be what Brian can have now.  She may stay with the same chemo if it is working or change to another regimen that may not be so hard on all those good white cells.   If she stays with the same therapy and it does work in eliminating the cancer, there is the slightest chance that they could try stem cell therapy to see if they could get enough cells for transplant.  But if she finds the cancer is not regressing with the current therapy, then she will have to change the chemo regimen and, in that case, stem cell will be completely out of the picture.  The possibility is that he will then go on revlimid which is the newest drug in myeloma treatment that has come out of clinical trials with a good outcome.  

It certainly is a roller-coaster ride that is for sure.  Thankfully though, Brian is feeling well, has not developed any infection or viral illnesses without his immune system intact, and so life basically goes on as normal with these slight interruptions of doctor/clinic appointments! Brian has also gotten back to doing some exercising which always makes him feel good. One good thing is that Brian's weight has come completely back to normal, in fact, he weighs more right now that he has in years - so he really does look quite well.  No one would actually know there was anything wrong with him!  We are so fortunate in that sense and we feel we will beat this thing into remission even if it takes a little extra time.  Our short-term goal is get in remission and then Brian and I are going to book a lovely vacation on a beautiful resort somewhere to celebrate in the new year!  

Sunday, October 23, 2016

Just a quick update today.  Brian has been doing okay, we went for chemo last Tuesday and although his neutrophils were still low at 1.1 (they prefer at least 1.5 or higher), they still gave him his chemo and I was to give him two injections of the Neupogen, one on Thursday and one Sunday (I"m getting pretty good at giving needles now!!)   Brian had no ill effects until Thursday night when he started to feel nauseated but I made him take an anti-nauseant right away which he did.  Still on Friday, he was not feeling the best, very lethargic, nauseated and "off" as he likes to put it.  Anyway, by Saturday he was feeling good again, so we are good to go until Tuesday when we get the last chemo for  Round #2. We see Dr. McCarron on Oct 31 for a followup and then Chemo round #3 will start November 1st.  I suspect that she may recommend that Brian continues to get the neupogen injection.  I think she wants to keep the white count (neutrophils) up so that he doesn't have to keep missing chemo every other week.  

In other news, we moved my dad to a smaller room at Arbor Trails.  We were finding that having the one bedroom was starting to get too expensive and with downsizing he would save quite a bit of money, so he decided it was worth it.  So, between Bob, Roy, Brian, James and Breanne, me and Roy's friend, John, we got dad moved in good order and everything set up the way he likes.  Since this room is at the farthest end of the building from the dining area and other social areas of the building, we convinced dad to buy himself an electric chair for him to maneuver around the building without causing too much pain and effort on his bad leg.  At first he resisted, but soon we convinced him that with the savings he was getting by moving to a smaller room, it would pay for itself in a couple of months, so he finally agreed and I think he is quite happy that he did now as he realizes it is a long walk for him if he didn't have it.  

Dad so kindly took all of us out for lunch at the Mandarin on Wednesday as a thanks for helping him move and we had a great time!  Dad wants to go back to the Mandarin more often, he was quite impressed.  For those of you reading this who don't know what the Mandarin is - it is a high end Chinese buffet with very good food!  Thanks Dad!! 

Dad's new chair.  

We have beautiful colour to our trees this year.  This picture doesn't do it justice but this is the front of our house.  Very beautiful colours! 

Happy Thanksgiving - October 10, 2016

As I left off in the last blog, Brian had to have some IV fluid administered on the weekend and then he was to start chemo again on the Tuesday.  So last Tuesday, we went for blood work, then chemo was administered as all seemed to be a go from their point of view.  Brian was actually feeling pretty good.  Chemo went as per usual and we headed home hoping the week would go well.  Brian had decided that he was going to stay very low key, stay around the house and not overdo things.  On Wednesday, Brian, Breanne and Jenn had booked in for a "paint night" at Fiona McCool's - called cocktails and painting.  Brian had booked this particular paint night quite a while ago and now was regretting it as he was afraid to go out in public but as he felt good on Wednesday, I encouraged him to go and enjoy a night out with his two "daughters".  They were going to make sure they sat as far away as they could from other people and Jenn and Breanne would sit on either side of him and they were actually able to do that and all three of them had a great night. I was really glad that Brian could do something that he would enjoy.  He needs to feel that life is as normal as it can be, so it was good for him.  Here is the result of their paint night! 

We have proudly displayed Brian's picture on the wall in the dining room! 

Then came Thursday and Brian started to feel "off", felt very nauseated and tired, and lost his appetite.  I encouraged him to take an anti-nausea pill that the doctor had prescribed for times he felt nauseated.  At first he declined, hoping the feeling would go away and then I insisted telling him he doesn't need to suffer with side effects and they give us these medications for a reason.  So he took it, slept another hour or two and then he started to feel a little better.  He got up and had some toast and apple sauce.  On Friday morning, he was feeling better again but then we got a call from Dr. McCarron saying that she felt his neutrophils were getting too low and would like him to have a neupogen injection that day.  CCAC was called and the nurse came Friday night to administer the neupogen and show me how to do it.  She said if and when he needed it again, then they would come to watch me administer it the next time.   But I was hoping that one shot would do the trick and bring up his neutrophils.  

We had a great family weekend!  On Friday night we celebrated Annika's 8th birthday at Breanne/James place and enjoyed watching Annika enjoy her gifts.   Brian was actually feeling quite well, saying he felt 99% normal which was so encouraging.  Jenn's family had invited us over Thanksgiving dinner on Sunday and we were going to have our own Thanksgiving on the Monday.  We had a great time with Jenn's family, it was nice to have a good visit.  Then Sunday we had Thanksgiving at our place as I felt it would be best to be home so that if Brian felt tired, he at least could go and lay down.  We had a nice dinner for which Jenn and Breanne contributed to and helped prepare and clean-up and we had a very nice family weekend!  We are so thankful for our wonderful children and grandchildren.  We truly are blessed.    Here are some pictures we took Monday of the family:  

First of course is Timmie with his head twisted on his back - chilling out by the window; next is the whole family and lastly are the three cooks for the day! 

So off to Kitchener we go today fully expecting to get the next dose of chemo.  After blood work was taken, they found that Brian had absolutely 0 neutrophils again.  It seems that the neupogen didn't do much to help bring them up and they had dropped.  Chemo, of course, was cancelled and Dr. McCarron has now ordered two injections of neupogen for Wednesday, then again on Friday.  We have to do more blood work on Thursday as well to see what his counts are after the first injection.  Then, hopefully his counts will be good enough for chemo to resume next Tuesday.  So here we go again, chemo now delayed once again.  This seems to be par for the course right now.  Dr. McCarron called us tonight to say that she wants to get round 2 finished (which will now be at least 2 weeks - only if all goes well) and then when she starts round 3 - she is also going to book in a bone marrow aspirate.  Since Brian has nonsecretory MM, it means she cannot see how well the chemo is actually working and whether it is the disease, the chemo or a combination of both of why Brian is constantly losing his neutrophils.  Again, she said this is unusual, but she also said that his bone marrow could be immunosuppressed related to the chemo he had for his non-Hodgkins and it takes his bone marrow longer to reproduce the good cells after the chemo kills not only the bad cells but the good ones as well.  

So thankfully Brian has not caught any viruses or infections with not having any neutrophils, so we definitely have to keep him away from any sources of infection, so another week of staying low key.  Hopefully the neupogen will help and it looks like Brian may need to have neupogen now on a regular basis until chemo is finished. Only time will tell I guess.