Walking the Path

     Just over two years ago I started this blog as a way to update family and friends about our nearly month long adventure in the ICU.   Little did we know it would not be our last and that the journey we were on was about to get even rockier.  Life has changed, and I feel like this blog as as well.  It's primary purpose is still to keep everyone updated, but I see it now as also a way to give others a small peak into living a life with cancer.   My perspective as caregiver is different from Chris's as a patient, and no two journey's are alike but it's a path filled with so many emotions and challenges.   I sincerely hope that others can be spared from walking this path.  However I hope that  perhaps by reading our journey others can gain understanding and compassion for those in similar difficult situations.   Due to changes in treatment, the typical image of a bald and clearly ailing person is not always the face of chemo.  Many people "look fine" but are fighting a tough battle.  I feel it is that way in life.  So many people that we meet each day are likely fighting enormous battles beneath the surface. 

     As for an update.   Next week he starts cycle 19 of DRd (likely 24-25 of chemo counting his initial 5-6 cycles of CyBorD).   They recently ran his markers, something they currently do about every three months.   Even though I still don't understand what all of them mean in terms of a how the  body works, when the results pop into his online portal I know what to look for.    There is always a bit of dread when an e-mail comes in saying there are test results available.   Worry like you can't imagine that bad news is lurking at a mouse click.   DRd has been relatively tolerable, and we hope that it will continue to work for a long time.   But I think he's bypassed the average of how long it typically works, so there's always a fear that we'll get a sign that it's time to move to something different.   However, not this time!  His Kappa and Lambda Light chain numbers are within normal ranges, including the ratio.   There are no Bence-Jones protein's detectable and no Monoclonal proteins (abnormal proteins) in his blood.   His immunoglobulins are also in similar ranges as when they tested earlier this year.    In other words, No News is Good News...the chemo is working and his myeloma is in "complete response".   We met with Dr Sborov and the plan is just to keep going.

     We also met with Dr Sucher, the doctor watching over his brain tumor.   At our last visit she had wanted to start him on several different medications, and when Chris wasn't able to tolerate all of them we were a bit nervous with what this batch of tests would show.   In her words, when the test results came back at least it wasn't "What the $#$%!" (Her words exactly) .    There are still things to work on, but we are hopefully headed in the right direction.


     In June we met with a supportive oncology doctor in hopes of getting some relief from some of the side effects of treatment.   One of the biggest side effects has been neuropathy.   We were hoping they would have a different suggestion than just more meds, and expressed that desire multiple times.  As the appointment progressed it was apparent they weren't really listening and even felt like they forgot that he had cancer.   They suggested an increase in his gabapentin dose (a nerve pain med) but I pushed to make sure that it was at least higher dosage pills and not more pills.    Boy, they clearly didn't listen.    This photo is what they prescribed... for ONE month!  We decided we should try and see what we could do on our own to attack it head on.   I found a cream online called Penetrex and we decided to give it a try.   His feet are still numb, but regularly applying it has helped relieved some of the pain.   Before if I even barely touched his feet, pain instantly showed on his face.   I've mixed together my own cream with a few different creams and now touching his feet instead elicits calm.    As well, instead of all of the pills they suggested, he's been able to stop taking that medication completely. 

     Another drawback of cancer, and I feel myeloma especially, is that treatment leaves you with a weakened immune system.   It makes you susceptible to infections which your body would normally resist, such as the one in his leg earlier this year.    His body is very slow to heal and the nasty wound it left is still healing. The damage to his kidney's and side effects from his medications also make it so that we are constantly battling edema (swelling) in his legs making them more susceptible to infections.     This summer he has been battling boils.  Chris describes them like a pine cone beneath your skin.   The largest one, about the size of my hand, took weeks to resolve.   All too soon it was replaced with another one.   Sometimes it seems like just as we are making progress with one thing, another emerges.   I wish there was more I could do to ease the pain.

    Last summer just as we were excited to have chemo go from weekly to bi-weekly Chris ended up in and out of the hospital with low calcium from Zometa (the bone strengthener) and we were at the hospital 3-4 times a week for infusions.   Luckily this summer was better and I was able to use a few precious days of vacation for some "me" and "us" time.   I was able to join my mom and aunts for "WOW" (Women Only Weekend) in early August and had a peaceful experience kayaking at Sunset.   It was beautiful and a memorable weekend filled with delicious food, sleeping in and good company. 

     As well as me being able to make some happy memories, last week we did something we haven't done in years, we took a trip!   It's challenging for Chris to even leave the house, and we've talked about trying to have a "get away" for a long time.   I suggested that for his birthday we should really try to go somewhere, and for him to think of where he would want to go.   I was a bit surprised when he said let's do it!  He wanted to try and go visit Archie.   Archie is a fellow Chief's fan we met when we lived in St. George and Archie ran the Outback there.   Six years ago we made a detour to Laughlin, NV on our way to San Diego.   Later that summer he was diagnosed with his brain tumor.  Archie now runs one of the Outbacks on the strip.    I spent time finding a hotel that I felt would be a good fit and packed things up.  Before we knew it we were on our way.   We hadn't thought to check the weather reports and an extreme heat warning with almost 110 degree weather greeted us in Vegas.    However, being able to see Archie was a great boost to Chris's spirits.   We had a fantastic time.

     It's so hard not to wish longingly for our life before cancer.   Seeing Archie and catching up with a good friend, gave a momentary flash back to a much simpler life.   A life when things were... easier... and more carefree.    I tried to find a quote that could put into words the "before" and "after" feeling and came across this one.   For us, in this life, we know that it will take a miracle to ever have a "life after cancer".   Which makes the challenge all that more difficult.   We are trying to find the beauty in "life with cancer".   The thing that helps the most are the friends and family who in their own ways let us know they are thinking of us and do things  to bring us joy.   There have been so many moments when we were feeling down and were lifted up by a text, a card, a Facebook post, a visit or a phone call.   Your timing always seems to be perfect.   Thank-you!