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

Making Memories - Fighting Multiple Myeloma

Thank you for stopping by!  My name is Dawn, and I'd like to introduce you to Tim... the man who changed my world simply by stepping into it several years ago.

Tim was diagnosed with Multiple Myeloma, a type of blood cancer, in March, 2013, less than a month after the birth of his granddaughter. 

The stress related to cancer (of any kind) and its treatments (and side effects) is intense, and our hearts go out to all those who share the fight.  We are actively doing all that we can to fight it, with an absolutely stellar medical team and an amazing support network of family and friends.  Humor is often abused... but, hey, it's good medicine!  All we can do with the situation is fight the good fight... so we do...

The other stresses... medical bills, insurance deductibles, vehicle issues, etc... those can be overwhelming.  When they are, it takes much of the energy and time away from memory making.  Anyone who knows Tim no doubt has some great memories involving time with him.  *smile*  Some not fit for print, I'm sure... ha ha.  Now, though, it has become even more important to him to consciously take the time to make as many memories with family and friends as possible.  It is important to me to help make that possible.  I do all that I can to make sure that he has all that he needs... and that includes not only quality medical care, but time spent with the people he cares about and time spent doing the things he loves to do.  Those things keep him focused on something other than the Myeloma. 

There can be times, like now, when the financial situation gets overwhelming... and it eats into our days, stealing my energy and focus, further limiting what we can do to keep every day as positive as possible. 

That is what has brought me here, writing this blog post. 

Our vehicle is in the shop, again.  This time, it needs a new radiator.  It didn't leave us stranded, but it did overheat on the way to a doctor's appointment... we were close to an exit, so a detour for coolant didn't take too long. 

That is the kind of thing that worries me.  We are soon heading into winter, and we know we'll be making multiple trips a week to Kansas City for Tim's treatments.  The minivan has been a blessing, but being a 1999 Caravan, it's likely to need something else before we know it.  Not being able to get Tim where he needs to be is simply not an option. 

Luckily, we have the money to get it fixed right away... this time.  If we had a 'vehicle fix fund', that would help tremendously.  A new(er) vehicle is in the future plan... but it just is not possible right now.

Tim has a grandson who is graduating from college in late November... in Savannah, Georgia.  The two of them are very close, and have been since day one.  Not making that trip... and those memories... is not something I'm willing to consider.  I want so badly for the two of them to be able to share that day.  The cost won't be tremendous, as we'll be driving... but it means that is money that I will not be able to set aside for other needs.

We are so fortunate that Tim has relatively decent insurance, but after the first of the year, the deductible starts over.  That is nearly $2500.  We are whittling away at a pile of medical bills right now... but that is more manageable and less overwhelming than the deductible portion.  Tim has a long list of medications he must take, and those will have to be paid for at full cost until that deductible is satisfied. 

Keeping Tim focused on something other than the Myeloma is a priority, too.  He has become really passionate about the blacksmithing, and he is amazing at taking an idea and making it a reality.  We have quite a bit of scrap steel, and we have the gas forge.  He would be able to use the coal forge if we had the proper ventilation set up.  Some tools, we can make... there are some others that would make the process easier on him that we cannot afford to get yet. 

We're very good at making the best of what we have, and we are so full of gratitude and appreciation... as each day brings another opportunity to love, laugh, live... and make memories.

This is tough.  Both Tim and I have always been ready to help others in any way we can.  I know that we could get by... but... call me crazy... I want more than that for him!  The fight against the Multiple Myeloma is part of every day... but it's so important to me to make sure that Tim's days are filled with more... more love, more laughter, more joy... more memories.  Not more stress.  On days when he feels well enough to spend time in the workshop, I want that to be possible.  On days when he feels well enough to have lunch with friends, I don't want to have to worry about the gasoline budget. 

Tim has spoiled me rotten.  I have never felt so loved, cherished, and treasured.  He is my best friend, my partner, and I could not love him more. When he was diagnosed, I put in an order for 20 more years with him... and we are doing all we can to get as many of those years as possible.  The reality, though, is that, his Multiple Myeloma is aggressive and has proven to be resistant to many of the standard treatments.  We will work for those 20 years... but each day is a blessing, a gift.

I am trying to make sure that Tim can truly make the most of each day.  Asking for help is a very hard thing to do.  Prayers, positive thoughts, love, humor... those, themselves, are no small things.  We are grateful for every day, and will continue to take one day at a time, making the most of each and every one.  Any encouraging thing from any corner is always appreciated!   I have included a link, below, where anyone can donate to Tim's Medical Fund through PayPal.  We would also appreciate it if people would share this blog...

Thank you for reading!

Dawn

 Any donations to Tim's Medical Fund can be made through PayPal. 
Please click here to donate through Paypal

Please contact me for alternate ways, if uncomfortable with PayPal.

PS:  I will be posting more about Tim's Multiple Myeloma journey... and will post updates as the roller coaster continues.

This is us on our Colorado trip.... prior to Multiple Myeloma.