Alex and Kitty, A Story of Hope and Love

(Data Privacy Note:  I have obtained Alex and Kitty’s approval to share this information about their situation).  

I’d like to share with you Alex and Kitty G.’s story. 

Alex and Kitty G.

They are from Columbus, Georgia and they’ve been up against this cancer devil for 21 months now.  As I sat and talked with them last evening, I was caused to re-assess my own situation as I’ve only been dealing with this for about eight months now.  It gives me a new perspective.

            Alex is a pretty typical 50-something year old man who likes to work in his yard.  Twenty one months ago, he was moving some pots and trees and around and felt that pain in the lower back that tells us all that we aren’t 20-something anymore.  But, as we all do, he attributed to age and not being quite as fit as he used to be. 

            Trouble was, the pain persisted and the doctors basically told him there was no reason for him to hurt.  Don’t you love that when someone tells you you’ve got no reason to hurt when you KNOW that you hurt!  So, he tried chiropractic; that’s usually good for back problems.  Unfortunately, the chiropractic provided no relief either.

            His personal physician then followed up with an x-ray of Alex’s back and said he had a T-5 compression fracture.  So, the next course of action was a bone density scan and several other tests, blood tests, mri, etc. After all these tests, the doctor said I want you to go see the doctors at the cancer institute.

There is a common thread running through lots of these cancer stories that comes down to slow or incorrectly diagnosed.  Cancer is, apparently, challenging to diagnosis and many other things have to be, or are looked at before the search begins for cancer.  In Alex’s case, he had been struggling with this back pain for nine months.

And, quite expectedly, Alex was in denial when he heard the word cancer, thinking things like, “Doc, you’re no oncologist, so you don’t know what you’re talking about.  I hurt my back lifting a tree, I have not got cancer.”

After reviewing all the test data and information, the oncologist said, “You’ve got stage four bone cancer and you probably only have until Thanksgiving to live, so you’d better put your things in order.”  Nice huh?

In Alex’s case, the oncologist showed him the bone scan results.  Bone cancer presents itself in the marrow and on the bone scan, his bones were lit up from the top of his head to his feet, all the way through his body.  For the next few months, the emphasis in Alex’s life was to control the pain as it had become excruciating.

A couple of weeks later, during an appointment with his oncologist the doctor says, “Hey, wait a minute, that’s not right!” to which Alex is thinking “Hey, what’s the deal?  Is this the first time you’ve actually looked at the results of all this testing?!?”

So, the oncologist consults with another doctor who specializes in lymphoma and this doctor says this is not multiple myeloma, this is a lymphoma, which is totally curable!

Alex pauses at this point and emphasizes that through all of the above he has not shed a tear.  He’s good with where he’s at, with where his life has been, with his God.  Everyone around him was falling apart, but he’s ok with all of this.  His attitude is incredible.

The next step was a bone marrow biopsy and this procedure hurts, a lot!!

The results were sent to Johns Hopkins because the doctor in Columbus was seeing some results that just didn’t seem quite right.  In the meantime, Alex began six rounds of chemotherapy and he figures, “Ok, six rounds of chemo and I’m done.  I’ll be cured!”

Alex’s disease then went into remission.

Then, the doctors from Johns Hopkins came back and said this is a rare form of t-cell, large cell, alk-1 negative anaplastic lymphoma, which has different characteristics.  It is in the t-lymphocetes throughout your body which are produced in the bones and that’s why it appears throughout your body.   So, a PET scan was run and Alex’s body was clear, the cancer was in remission and for the first time, he cried.  He was finally able to relax.  He’d been living his life for about 15 months strung like a tight guitar string and now he was able to unwind a little.

So, at this time Alex is referred to Emory as the doctors here are more familiar with this rare form of cancer and the first words he hears is that he may need a bone marrow transplant.  This was in February of 2013.  In preparation, another PET scan was performed and the disease was back throughout his body.  This convinced the doctor that he had to have a bone marrow transplant as the disease may or may not go into remission, but it will keep coming back.  He could not use his own stem cells for the procedure as his cells probably would produce the same cancer again.  And, he has to be in remission for the stem cell transplant to be performed.  Another round of chemo was performed and two more PET scans, but the disease was still active.  The doctors decided that they had to move forward with the transplant because the cancer was too aggressive.  Further, after repeated chemo treatments, the cancer become resistant. 

Last week Alex had another PET scan done and the cancer had doubled in size from the previous time.  This was just slightly depressing to Alex, but his doctor had expected this.  So, he’s now begun chemo once again.  He receives a treatment every 21 days.  The doctors have also started graft (donor) versus host (Alex) comparisons.  His donor is a 100% match which is excellent.  A 100% match is almost as good as his own stem cells. 

Through all of this,  the doctors have focused on the cancer, while Alex says, “Hey, my back hurts!”.  The docs say we’re not worried about your back, you’ve got bigger issues here.  While Alex is thinking, “Yeah, but it’s my back that’s hurting not yours!”  Now the bones have crushed down and his back doesn’t hurt as much. 

The doctors will now weaken his immune system and lower his anti-rejection meds, so when the t-cells are transplanted, they’ll be able to grow well and hopefully his body will accept them.  And, the stem cells will be kept on hand, frozen for possible use at a later date. 

And, Alex and Kitty remain dramatically optimistic that this will be overcome and their lives together will on!  Keep them in your prayers.

And a take-away for all of us from this: Give serious consideration to being a bone marrow donor.  You can save someone’s life.  I’m a donor and now have met someone who will benefit from someone else’s willingness to give the gift of life.  It’s very moving.