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.


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 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!

Swab and save


Did I say I can’t sleep (again)

…these words echo inside the fjords of my head.  I take OTC sleeping aids because I do not want to come to rely on prescription drugs.  I’m tired but I’ve been a sloth.  I’m a sloth because I’m so damn tired.  I’m tired because I don’t get enough exercise.  I don’t sleep so I’m too tired to exercise.  And around and around and around it goes.  AAAAHHHHHHHHHHHHHHHH  *sound of me screaming*

I meditate, take hot baths and pray.  I play boring word games on my Kindle at night so that I don’t get wrapped up in my books. I blog, beg and blunder.  I’m a mess.  Although it sounds like I’m a mess all the time…I think that when I gauge myself against the “normies” of the world, even having two bad days a week CAN measure up to being a mess.

I don’t know how we’ll pay our medicals bills.  Probably can’t.  I don’t know how I will feel if I lose Dave.  Shouldn’t concern myself – instead be positive.  This may be a bad time to go back to work.  Dave needs me.  Things are coming up this summer that require my attention.  Is this Gods timing.  Is this the Universe aligning or am I aligning within the Universe and at last this is my time?  Will they like me when they meet me?  Can I do this?  Am I capable?  What if they don’t like me?  Oh God I need to lose weight.  I want to lose weight.  I’m stuck in this body.  AAAAAAAAAAAAAAAAHHHHHHHHHHHHH  *little louder scream*

Welcome to inside my head…..

I know what’s troubling me.  And I won’t likely find peace until I do something about it.  Only I can do it too.

I submit my will. I’m done.  Kaput!  I surrender my whole being to a Higher Power far, far greater than me.


Finally finding some peace…

I have finally found myself achieving a couple fairly decent nights sleep.  Thanks to having some soulful, refreshing moments with Dave and Tylenol PM’s, I’ve had at least seven-hours worth of sleep twice now!!

In addition to the rest, I have gone for two walks, once with my kiddo and once with Dave; throw in the little bit of yard work I’ve done in the past couple days  – I would say this has all added up to a better outlook on life, my attitude, and my self.

  • Woot Woot!
  • Rah rah ree, kick ’em in the knee,
  • Rah rah rass, kick ’em in the other KNEE!

Dave and I have also had some rather intense but necessary conversations recently.  They center around the “what ifs” of this Myelofibrosis  journey we are on.  We will eventually have to get to a notary and sign a few homemade documents just to make it legal. Once this is done we can table it and not speak of it anymore.  Going forward, never backward.  Together we will get through this.

I can’t get out of bed…

lately I've been feeling this way

I started to go back to a therapist recently. There are a lot of issues plaguing me these days.  The committee in my head is screaming loudly, forming their conferences without my permission.

I’ve been unemployed for a little while.  At first I was delighted.  I was going to use the down time to conquer some projects that I had put off.  I actually enjoyed being home and found plenty of things to do.  Collecting unemployment has been greatly helpful; it makes me feel like I am still earning a living on my own and gives me a little of my own money.  All of this was fine and dandy until one month turned into another, which turned into another. I would have phone interviews and an occasional face to face interview.  I continued to look for work plowing through all the sites.  I have quite the collection now of job seeking accounts which I monitor on a regular basis. I felt interviews went well and were pretty damn positive.  But who the heck knows what goes on inside the minds of HR people and managers.  It’s a smorgasbord of  principles-these people looking to hire other people.  I have had sooooo many interviews over the past ten years!  I’ve lost count.  I’m a professional interviewee.  Sheesh!

Once the holidays had past in 2011 and I was approaching another birthday, I began to get depressed.  Along with the unemployment, we were now about 5 months into Dave’s disease.  I was doing some serious reflecting.  Lots of “what ifs” conversations between me and the committee.  Many discussions about “loser mentality” occurred without my permission.  My relationship with my girls had changed. I was faltering due to my recent bad choices of coping. With disappointment in their hearts and judgments passed upon me that I had no control over, I found myself desperately alone  and didn’t know how to reach out for help.   Isolation has been the method of choice when I find myself deeply scared and alone.

Do you know that one time, long ago, I tried to form a progressive, inspiring anonymous group called “ISOLATORS  ANONYMOUS” but no one showed up!?      (that’s an old joke but always a good one)

FEAR is a muthafucka!
It can choke the life out of anyone.  It is a direct result of lacking faith. Lately I have been frightened of a lot of things.

FAITH is the essence and crime-fighter of FEAR.  Sometimes I have solid, immovable  faith especially when it pertains to someone else issues.  For me?  Not always so much.

I have the tools of coping with life.  I learned them many years ago when I was active in 12-Step programs.  Obviously I need to go back and take a refresher course.

I’m going to share some great ideas that were given to me by my therapist Christie.  She is a God-send to me.  Sadly I will be losing her in April as she and her hubs are moving to Topeka.  She’ll recommend someone else for me but it’s just the thought of “starting over” with all my MUCK that has me not very excited.  Ah but I digress…

Here are the wonderful tips…and all of them are very do-able:

WAYS TO ELEVATE MOOD by Christie Peterson


Well this is a no-brainer and requires no explanation.  I mean it’s endorphins sistah!  Good for ya, necessary and a given. Come on!


This is a simple task that helps me get motivated to do something.  I confess that lately the simplest things like cleaning the house, EXERCISING, cooking, gardening, grocery shopping, things like this are basically not done.  I find myself completely uninspired to do any of it.  It’s pathetic.  How the 5-Minute Rule works is this:  Let’s say that I have a pile of dishes in the sink and around the countertops just screaming to get done.  I walk past them two, maybe three times a day and sigh.  I don’t want to do them.  Logically I know I they have to be cleaned up, but I have neither the desire or the will to do them, so I don’t.  If I allow myself a window of 5 minutes to simply begin the task; ONLY 5 minutes; and then I can tell myself that after 5 minutes, if I don’t feel like I want to continue or complete the task, than I give myself permission to quit and go back and lay down.  Sounds silly doesn’t it?  But think about it.  If you begin to walk and say to yourself “I’m only gonna walk for 5 minutes, and you begin to loosen up, feel the stride in your legs, notice the warmth emanating through your body, things will begin to happen.  The endorphins will kick in.  You’ll begin to feel lighter and happier that you have made this choice to walk today.  It’s a trick, I know.  But it just might work.


I’m not a yoga expert, but I do know that when Dave and I did our yoga stretches every morning, we both felt more flexible.  It helped our backs and probably our minds.


Oh this one is a goody.   Learned this when I was involved in the “programs”.  Rather than doing a full out, long journal; Journal every night-writing down three things that were positive or made you appreciative in your life that day.


This I don’t do often enough.  Recently I have been reaching out to friends.  They just don’t know that it’s a life-saving line for me to simply converse with them lately.


I remember the impact that volunteering had on my mental well-being.  I haven’t done this since last year.  I will make an effort at this, but feel that it will probably be low on my priorities while I focus on Dave.


Again, this is something that I’ll have to work on.  And it doesn’t have to be a pastor, but rather can be a strong spiritual leader that you look up to.


In my case, this is essential.  I have to be very specific in what I ask of them and not place unattainable expectations upon them.  After all, I’m still a parent and have lived a whole lot more of life than they have.  My desires have to be contained within the realm of what they are capable of.  Christie told me that studies have indicated that the brain is not fully developed until at least the age of 25.  I found that very interesting, especially when I still get shocked over some of the ideas or the way the girls think about some things.  It explains so much and now I can understand a little more where they are coming from.

  • WALKING IN NATURE (with daughter(s))

I use to work out with Sarah at the Y.  I really enjoyed that.  I’ve tried to get Keely to do the same with me, but to no avail.  Katy would likely be my best work out buddy if she were closer.


Hence,…the blog.


I think I’m going to need to start going to some cancer or spousal support groups like Victory in the Valley.  I looked up the times and locales but again….NOT MOTIVATED.


I didn’t realize how hard this one is until I had to think about what exactly makes me happy?  I’ll get back to you on this one.


I think I still have the ability to laugh or smile.  Watching silly movies or comedies; reading ridiculously funny things on the web…laughing at Chano…all these things help.


Nan Myoho Renge Kyo is the current chant that I do often in the tub!  It is the central chant and practice of all  forms of  Nichiren Buddahism, the natural development of joy, increased vitality, courage, wisdom and compassion.
Recently I was introduced via FB friends to Ek Ong Kar Sat Nam Siri Wahe Guru which I am exploring currently.  This requires great focus and breathing which forces you to take time out to not only do this properly but reserve that time for yourself as well. It is said to be powerful and energizing when done correctly.
The Serenity prayer is always my “GO TO” prayer which I say probably ten or more times a day: “God, grant me the Serenity to accept the things that I cannot Change, the Courage to Change the things that I Can, and the Wisdom to know the difference.”  I also pray the Step Three prayer and my own written Step Seven prayer.  And of course all the free flowing prayers and intercessions of prayer and positive thoughts that I offer to my God on a daily basis.


Well folks, this is a hard one.  I can’t remember the last time I got a full, uninterrupted nights sleep.  But again I’m working on it.  I actually believe that last night I slept six hours straight through.  It was amazing!

Meandering thru the Muck

Gasp! My first blog:

Hello Blogging Buddies and Curious Creatures:

Brezhnev-y Brows

men can grow some amazing brows

Posting my first blog.  Nervous.  Excited.  Overwhelmed.  VULNERABLE.

The longing to blog about my heart’s desires has been a process in the making, but mostly in my own mind.  I’ve realized smack dab in the middle of my life – I have come to some realizations about the muck of life… so emphatic that I felt it was necessary to share.

For instance, did you know that as men age they truly do get handsomer.  No fair.  But they also grow hair where there wasn’t much before i.e their ears, their nose, their necks, their Brezhnev-y like eyebrows. Women on the other hand, tend to look a bit more – well, OLDER.  But the benefit we experience on the aging process is that we barely have to shave anymore.  I shave once a week now.  And that’s only because of an obligation to my female self to be hairless where we’ve been indoctrinated to be.  So my younger, hairier sisters, do not despair.  One day you too will be able to give up the razor and spend more time not giving a damn!

Other meanderings of my mind:

Muck is such a great word!  It is also synonymous with dung, manure, mire, mud, waste, trash and so on.  Although I would prefer to listen to the more perkier side of my mind…I find myself meandering through the muck of life.  My blog will be an attempt to share some tidbits that I find amusing while fulfilling that part of me that still thinks she’s a writer.  I also believe that blogging is a positive way to journal what ails ya!   I’ll cover personal struggles such as my eternal quest to find serenity within my self.  I’ll likely discuss often my chronic crusade to  lose this excess weight that tends to envelop me like a soft, fluffy comforter.  My fat – at times a comfort to me because it’s all I know; other times – too much and too warm.  Hmm.  Reminds me of some people I know who are wonderful to be around for a while, but wear out their welcome if they stay too long.  Yup, that’s my fat-an endearing old aunt that you love but don’t want to visit for more than a day or two.  Other personal topics will be wind driven  whatever blows in to this brain of mine from the land of the Southwind.  Topics: Middle-age women who think they are still 30 in their mind but don’t look it or act like it; Beautiful, accomplished daughters who are growing up to be exactly what you have prepared them in life for, but you don’t like it…not one damn bit; Unemployed past 50 – are there really that many of us; Battling the bitch syndrome; and finally no blog can be complete without the articulation of a recovering drug addict, yes that is me. Discuss amongst yourselves.  I’ll get more coffee.!

sometimes I feel like this

"hey I need to axe you a question"

Topic closest to my heart:

I share my life with a wonderful man named David.  He was recently diagnosed with myelofibrosis-a conniving, rare disease that has reared its ugly head upon our lives.  The disease is a bone marrow deficiency in that Dave doesn’t produce enough strong, numerous red blood cells in his marrow to allow him to function like us ‘abnormal’ folks do.  Therefore,  he is pin-cushioned twice weekly to monitor his RBC’s, hemoglobin, WBC’s, and platelets checking the levels so that he doesn’t go anemic on me or god forbid cut himself and bleed like a stuck… [insert object here]!!  Henceforth, my man is sporting a beard now.  “Shaving is a no-no when your platelets are too low”.  Chicca chicca boom!  Dave will be a recipient soon for a bone marrow transplant.  God willing and the creek don’t rise…

So thanks for tuning it.  I’ll write often and love you longer.


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