In the waiting room….

Healthy becomes OH HELL

For the most part my love Dave and I are healthy people.  We are definitely chubby wubbys, could stand to adopt a daily exercise regime – but hey, we’re still HOT.  At least that’s what we tell our kids. We delight in their moans and groans depicting their disgust at the very thought of people “our age” being sexual!  I remind them to be happy for their mother who is still a healthy, sexual being.  I can see the eyes rolling now.

The real point I’m getting at is that we’ve never really had any serious ailments.  Other than our addictions (which we have addressed) neither of us has spent any time in hospitals or undergone intensive medical care…..until NOW.  Meet the newest challenge inducted into our couplehood … Mr. Myelofibrosis.  We’ll call him Milo so that I don’t have to type the entire damn word out every time.  And I’m too lazy to set up an autocomplete (for those of you Word wizards who know what I’m talking about.)

We didn’t know anything about Milo; didn’t even know his existence.  Obviously a shocking revelation when it was announced that Dave had a rare bone marrow disease called myelofibrosis with myelodysplasia.  Here’s how it began…a riveting story I must say!  HAH!

The Discovery

I had a minor outpatient surgery done on my belly button.  Damn thing had been broken and herniated for years.  This was my third time to finally get it fixed right.  I knew that I would be down and out for a few days and was counting on my Prince to take care of me.

Interjecting a mere peek into our personal lives here: Dave has always spoiled me and catered to me throughout our years together.  Examples: a cup of coffee is brought to me every morning at my bedside; he will rub and lotion my feet when I ask with no complaints, even painting my toenails; bringing dark chocolate home to me when I don’t ask for it; surprising me with flowers every now and then; telling me how beautiful I look and often referring to me as a goddess. (that’s why I use that handle-not out of conceit, but rather out of respect for the sweetness my man shows me). I am fully aware that I am a spoiled, blessed bitch and I remind myself every day.  So I knew that he was up for the job.

The week before my scheduled surgery I had to finally implore Dave to go see the doctor.  His lack of stamina, lethargy, constant dizziness and the most obvious and frightening symptom – his pallor, were all completely unlike my Dave’s normal composition.   The P.A. drew some blood checking for basic signs of infection and checking his blood sugar levels; told him he might be depressed which they re-prescribed to him Zoloft and sent him on his way.  The following Friday I underwent my hernia repair, not a hitch, but got a stitch … or two.  I was in some PAIN.  Oh Lawdy Lawdy…it was the sitting up and getting up that was so hard.  Dave could barely climb the stairs to help me make the few feet to the bathroom.  I’m a big gal.  He could barely pull me up off the edge of the bed that first two days after surgery.  I had no tummy strength from the middle so it was all on him to pull. It flat wore him out.

The next few days he trudged to work walking from parking lot to his desk like he was wearing cement blocks.  He could barely stay awake throughout the day.  And his skin tone was sickly.  This time he went back to the doc and they took one look at him and said “go to the emergency room”.  Do not pass Go, do not collect $200.  When we arrived at the ER, they did the proper blood tests and the result was anemia.  Duh!  A wonderful hematologist was put on Dave’s case.  After three days of extensive tests and a bone marrow biopsy, all the while worrying that we might be facing a life-threatening event, we finally got the word that Dave had an “orphan” form of cancer called Myelofibrosis.

Mye-lo-WHAT?

Myelofibrosis basically is a disorder of the bone marrow. It is currently classified as a myeloproliferative disease in which the proliferation of an abnormal type of bone marrow stem cell results in fibrosis, or the replacement of the marrow with collagenous connective tissue fibers.  That seems a bit too science-y for my tastes so I’ll reword this in more laymen’s or laypersons terms.  Dave has scar tissue in his bone marrow which prevents it from doing its job.  The marrow produces a gazillion red blood cells when it’s healthy.  These cells transport themselves through the circulatory system to supply rich blood quantities to our organs and all those things that function like vampires off of our blood.  The marrow also is a component in the lymphatic system which produces lymphocytes; those ultra-strong soldiers that fight infection and keep us well.  You and I have a full tank of blood to get us from point A to point B.  My Dave was sloshing around with about a half of a tank and still trying to do all the things that you and I do normally but take for granted, like climbing stairs.  His marrow is scarred up enough that it’s not producing enough RBC’s which makes him anemic, tired and susceptible to sickness.

Once we found out this news, we hit the internet!  Mye-lo-WHAT?  It was unbelievable that we were experiencing cancer.  We thought people who didn’t take care of themselves got the Big C.  Not us. This wasn’t supposed to be happening to US!.   But unbelievable as it may be, we had to wrap our heads around it and accept that this was our new way of life.  We can’t change this, so we better put on our big boy/girl panties and stop whining and complaining.

The brick-dropping-on-my-head moment was when Dave was in Wesley on the 8th floor, oncology. The word “oncology” basically means the scientific study of CANCER.  So while I was pacing the floor as I often did when Dave was snoozing, or in the bathroom for the millionth time, I met one of his friends from his homegroup.  This man was the father of a 23-year-old daughter who was afflicted with some form of leukemia.  She developed a little infection and BANG…she’s in the hospital for a few days.  This man, this loving father said something so profound to me that I haven’t forgotten it yet.  He said: “Well Sue, get use to this.  THIS is now your new NORMAL.”  So this was going to be my normal.  Our normal.

  • Constant visits to 8th floor;
  • regular visits to the doctor;
  • becoming familiar with Dave’s hematology numbers and always looking for the right combination of hemoglobin, platelets, blasts, etc….
  • accepting the fact that Dave won’t be doing active things for a long while like playing his drums or yard work or riding a bike down to the river or traveling any where
  • watching him withdraw when he is feeling ill
  • noticing his skin flare up with petechial spots or seeing the pallor in his face
  • accepting that he needs a couple naps every day

I could go on and on.  Yup this was going to be our new NORMAL from here on out until…..WHEN?  Only God and the Universe knows.

Diagnosis:  You need a bone marrow transplant

Since the initial diagnosis, a discussion came up that the only way Dave’s quality of life can be regained AND saving him from being terminal is to put him on the donor list.  The first person we go to is a sibling.  Jennifer is Dave’s sister.  With hope in our hearts, we waited for her results to come back so we could get the ball rolling on this transplant.

Here’s a blip about how exacting and phenomenal of a science this gene matching stuff is:

One of the jobs of bone marrow and blood stem cells is to produce the cells of the immune system, which are responsible for recognizing the difference between invading sicko pathogens and the regular cells of your own body. Because of this, the genetic match between donor and recipient in a marrow or blood stem cell transplant must be very close. Otherwise, the transplanted donor cells may start making cells that attack the recipient’s body.  The cells think, “hey this isn’t our territory here, so let’s CHARGE!”

There is a group of genes that matter most in terms of whether the transplanted cells will thrive in their new body or whether they will cause major problems for the patient. These genes are called Human Leukocyte Antigens — HLA genes for short. The closer the genetic match between the donor’s and recipient’s versions of the HLA genes, the more likely the transplant will go smoothly and be successful.  Thus, this was the need to try to match with his sister, as she would be the closest match.

But the odds were pretty slim that she would NOT match.  These HLA genes are all located close together on Chromosome 6. This means that they are rarely mixed up as a result of recombination and are inherited almost as a single gene would be. Each person carries two versions of their HLA genes, one on the copy of Chromosome 6 inherited from his or her mother and one on the copy inherited from his or her father. A person in need of a marrow transplant might get lucky and have a perfectly matched sibling, who inherited the same gene versions from their parents. However, 70% of people in need of such a transplant don’t have a matching sibling and have to look for an unrelated donor.

And this is where we landed.  Jennifer didn’t match. What now?

 Dipping our toes in the donor pool

We are in the “waiting room” as Dave puts it.  Waiting on a donor.  Waiting on word from Kansas University Medical Center in KC. Continuing a regiment of blood and platelet infusions. Waiting for his name to be called.

In the meantime, the disease turned into acute myeloleukemia.  AML.  This really put a scare in us.  Leukemia.  Remember how that word conjured up an eventual death sentence? Well that’s what we thought.  I still think it when I saunter up a dark path in my mind.  I think about how all the hell of this damn disease is eventually going to end in tragedy for us. When I think that way, naturally I go into panic mode.  I have to snap myself out of it immediately.

Once it was known that Dave had developed AML from Milo, we knew he was in for some dreaded chemo treatments.  One week of chemo daily and three weeks of recuperation.  All during the month of February, we spent our time in Wesley.  For the most part, Dave was a stupendous patient.  His attitude is mostly positive and accepting.  He makes me stronger by his own attitude showing me how to handle things like this with some integrity and grace.

He had one very serious glitch during those three weeks during recuperation…a horrendous, anaphylactic-type reaction to one of the gazillion medications he received as anti-viral, anti-biotic, anti-keep-him-from-getting-sicker and so on.  It was hard to track them all.  I tried.  I gave up after about Day 10.

This was the result:

This was a severe reaction to the drug Allopurinol

Dave became an enigma.  For days, the Center for Disease Control reps, a top-notch dermatologist, his hematologist and a house full of nurses were a constant presence at Dave’s bedside. Donning full gowns, gloves, eye-protection and face masks, they scraped away at his inflamed skin sending samples for biopsies, trying to get at the cause.   He was miserable.  Itching.  Burning. Frustration. Anxious. I couldn’t imagine all the things he was experiencing, It was difficult to look at him with these hideous, inflamed blotches all over his skin.  Where was that smooth, soft skin I loved to run my fingers over before I fell asleep? The thing about all this – I knew it was a drug reaction.  He wasn’t contagious.  He was reacting to the chemo, it was whatever combination of meds they dispensed on his was making his body scream!  And now we know.  It was the drug called allopurinol, a med they gave him for gout. Apparently uric acid builds up in the body from chemotherapy meds so this was given to him to prevent gout.  Well it prevented him from ever having to take it again! It’s on his charts and we’ll stay as far away from it as we can.

Meanwhile….back in the Waiting Room

Dave has yet to find a donor.  It figures he has to be unique of course.  The only human donor he was matched with said “they couldn’t do this until next year”.  What???  I don’t even understand this.  I am trying to but I can’t figure out why someone would offer their cells as a donor and commit to being placed in the registry, knowing that they may be a match for some other human being, and then be called upon to do this life-saving thing, only to say they couldn’t do it till next year!  Dave logically and calmly commented that maybe it was a female, and she was pregnant.  Oh.  Gosh I’m a short-sighted, creep.

So what’s next? Two words:  CORD BLOOD.

Cord blood is rich in blood-forming cells that can be used in transplants for patients with leukemia, lymphoma and many other life-threatening diseases. Cord blood does not have to match a patient’s tissue type as closely as donated bone marrow does which is great news for Dave since it has been difficult to match his unique HLA cells with another human being.

If the cord blood unit is suitable for transplant, it is tissue typed, then frozen and stored in a liquid nitrogen freezer. The cord blood unit is then listed on the Be The Match Registry, where it is available to any searching patient in need.

So here we are in the “waiting room” of Dave’s disease Milo. I want to implore everyone out there who took the time to read this blog to do one thing for people like Dave:

Make a commitment to become a bone marrow donor. It’s so easy to do.  I am proud to say that I am on the registry and awaiting my official donor card.  Go out to the bonemarrow.org site and read all about it.  Find out if you would make a good candidate.  If you are, they will ask you to take another small step by receiving  harmless filgrastim injections for five days to help the number of blood forming cells to increase in your bloodstream. Your blood is drawn, filtered and returned in to your body so that it can regenerated those blood forming cells in a matter of weeks. It is fascinating to discover that we all carry deep in our marrows life-saving cells.  And we don’t even have to do anything extra-special to do this humane act of kindness except take the first step and swab your cheek!

http://www.marieclaire.com/health-fitness/news/bone-marrow-donation

Swab and save

 

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