Multiple Myeloma - the roller coaster

Just when you think life is getting settled...

At the beginning of 2013, my fiancee, Tim, and I were getting settled in our new home.  We were enjoying doing some wood and metalworking.  We had recently adopted Maggie, a little lab mix, from a local animal shelter.  (We had only gone that day to take a look, thinking that our 13 year old pitbull, Mohta, really needed a furry friend... but, with barks, yips, and yaps in the background, when this little lady just quietly stood up, her paws on the gate, and looked at Tim... it was over.  Decision made.  We had a new addition to the family.)  Tim's son and daughter in law were expecting their first child, a little girl.  (Tim made her the most darling swing!)  Tim's daughter was planning her August wedding.  We were home... finally... and loving it.

Tim started feeling more and more tired, though.  A trip to the doctor for a check up found that Tim was anemic, his hemoglobin was low... and that was causing the increasing fatigue.  His B12 was also low, and that is one of the common causes of anemia.  (Low iron is a more common cause, but his iron level was just fine.)  Tim got weekly B12 shots for a month or so... new lab work showed that his B12 level was fine, but he was even more anemic.  His doctor ordered a test to check some other proteins in his blood... and that test came back abnormal.  A referral was made to a hematologist/oncologist... and after more testing, Tim was diagnosed with Multiple Myeloma. 

Multiple Myeloma is a type of blood cancer.  To put is simply, it causes a type of plasma cell to copy itself, over and over.  This causes a decrease in the number of healthy blood cells, can cause bone weakness and fractures, can cause kidney failure, and more.  There is no cure for Multiple Myeloma.  At that time, March of 2013, 95% of the cells in his bone marrow were cancer cells. 

The day of the diagnosis, Tim asked his oncologist, "Is this going to kill me?  How much time do I have?"  His oncologist leaned toward him, looked him straight in the eyes, and said, "Tim, don't you ever let anyone put an expiration date on you."  Tim took a deep breath, and replied, "Okay... what do we need to do?  Let's get to work."  There was no question that the two of us were in for a battle, but it would be one that we would fight side by side. 

That work began with several rounds of one chemo regimen, which was not very effective, followed by a bone marrow stem cell transplant... which, also, was not as effective as hoped.  At the beginning of this year, 2014, he began a new chemo regimen... which was the key to, finally, achieving what they call 'very good partial remission' by the end of June. 

The last year and a half has been quite the roller coaster ride... and it continues. 

We have made countless 2 hour plus round trip drives to various doctors.  We have battled through several bouts of pneumonia, one of which resulted in an ICU stay when the infection got into his blood stream.   Tim became the 'proud owner' of an intrathecal pain pump... an amazing gadget that has allowed him to have very good control of the extreme bone and nerve pain, without the medication fog of pain pills.  His spine is full of compression fractures, many of his ribs have tiny fractures, and he has a mass of cancer cells in his sternum, as well as small masses in either shoulder.

He underwent an autologous bone marrow stem cell transplant... a process where they, first, ran his blood through a machine, where it was spun to separate out the stem cells, the remaining blood returned to his body... then hit him with some very strong chemo to basically kill what was left of the cells in his bone marrow, about 80% of which were Myeloma cells... then re-injected his stem cells back into his blood stream.  Those amazing little cells then found their way back to his bone marrow and began their job of getting re-established and back to the job of creating healthy blood cells. 

The risk of infection during that months long process of prep, transplant, and cell recovery was extremely high.  Tim had several more rounds of pneumonia... and blood clots in both lungs.  So many close calls... so many 'grace' moments.

It was a terrifying and exhausting time... but there was little energy to put toward feeling too much of that.  The focus was on the goal... and there was only one way to get through it... moving forward one step at a time.  We spent 3 months away from home for that process... had to be within 20 minutes of the hospital... to finally get home to our home... and our furry 'kids'... was a relief beyond measure.

But, we DID make it home... together. 

Testing last December showed that the transplant had not been as successful as hoped, so Tim then began a new chemo regimen.  This chemo was fairly well tolerated... the chemo infusion took less than an hour, so the drive to KC for treatments took longer.  Tim's white cell count rebounded very well, drastically reducing the risk of infection.  His red count and hemoglobin stayed low, though... so fatigue remained an issue.  He was also on a blood thinner due to the blood clots in his lungs last October. 

Overall, though, the treatments were well tolerated, and we got into something of a routine.  His energy level continued to increase, too, which was fabulous.

The last year and a half has also had some incredible moments... his son and daughter in law became parents to a beautiful little girl weeks before Tim was diagnosed.  Tim's daughter got married last August.  We have had so many great days.  We believe that laughter is great medicine... though we have been known to overdo it sometimes. 

Tim's courage, strength, determination, and flat out refusal to let this cancer bring his world to a halt have been amazing.  I do all I can to learn all that I can in order to not only support him through this, but to allow him to just relax as much as possible... knowing that I will be there to help navigate through all the 'stuff'. 

We have both been interested in wood and metal working for years.  Since meeting, we have spent a lot of time creating a variety of things.  The Myeloma effects and treatments put a stall in much of that... but this year, Tim has really gotten into blacksmithing.   He had built his own coal forge almost 4 years ago, shortly after he had a stroke.  That had piqued his interest, but we hadn't done much with it for the last few years.  This year, we've learned enough to really be passionate about it!  The coal forge was a concern, due to his lungs being more easily irritated... so we have added a propane gas forge to the shop.  It's amazing!  Not quite as much flexibility as the coal... but it's not a bad trade off. 

Tim finished his scheduled 6 rounds of chemo at the end of June.  At that time, the plan was to retest at the end of August, check his Myeloma numbers, and start on a maintenance schedule of the same chemo.... once every week or 2... to keep the Myeloma low.  There is no cure, so the goal is to find something that works... and keep using it as long as it works.  If and when it stops working, find something else... and so on. 

Testing showed that the Myeloma is advancing.  In June, the amount of cancer cells in his bone marrow was less than 1%.  The testing in late August showed the Myeloma had increased to 5-10%.  Instead of heading into a maintenance regimen, Tim will undergo 3 more cycles of treatment... retest... and go from there.  We are confident that the chemo will do just as well this time around as it did during the first part of the year.

Before restarting the chemo, though, the recently discovered issue of some blockage in his heart has to be taken care of.  That is scheduled for this week... one more test will lead to either a new medication, a stent, or both.  So frustrating... and, yes, scary... but cannot help but feel grateful that we caught it when we did.  Another 'grace' moment... there have been so many of those...

Once treatment starts, Tim's red count and hemoglobin should come back up a bit... reducing the fatigue and increasing his energy.  Hooray!  He had been waiting for fall temperatures to arrive... trying to forge in 90 muggy degrees is difficult. 

We've discovered a surprising number of blacksmiths in the area... professionals and hobbyists... every one an artist on some level.  We were able to travel to a national artist-blacksmith conference in August.  We have so many ideas!   We are even learning a lot of the skills needed to bring the ideas into reality! 

All we need now are some more relatively level days when Tim feels good enough to hang out in the workshop.  I know we will have lots of those days!

This roller coaster has become our reality.  The ups and downs can be overwhelming... but are much, much better than the ride coming to an end.  We are strapped in and ready to ride for as long as the ride will run!

No one knows how much time they have in this life.  We do know, though, that we don't want to waste a moment.  Every day is a gift.

Thank you for reading.
Dawn