Last Monday was my six-month check-up at the Huntsman Cancer Institute.  I do a lot of breathing that day.    

I take my first breath as I step on the scales to be weighed and measured.  You’d think I would get used to this, but I’m still always hoping for a lower number.
I take a deep breath as the “double lumen” port in my chest is accessed and 12 vials of blood are drawn and then another breath when the nurse has to take two more vials from my arm.   It is a good thing I have never been upset by the sight of blood.  This trait has come in handy over the last three years.
After the bandage is applied, I am led down the hall to a small examining room.  I sit on the bed and answer the questions from the Physicians Assistant who will be performing a biopsy.  I know the procedure well.  I think this is my eleventh time.  I am usually not too anxious until the actual procedure begins.   An IV of a small amount of morphine is administered through my port and I lay down as it begins to take effect.  After the paperwork and the risks involved are explained, I turn on my stomach pulling the bottom of my shirt up three or four inches and the waistband of my pants down three or four inches.  I can only vaguely explain what happens next while lying on my stomach; which is probably a good thing.
The procedure begins with a shot of lidocaine and once again I breathe.  In and out, slow, deep breathes as the area of the skin and then the iliac crest quickly become numb.    The aspirate comes first.  A long needle is plunged through the bone and into the marrow where it is aspirated into the syringe.  I breathe through the aspiration. I feel strong pressure from my hip down my leg down to my toes. As if the sample is being sucked up from my toes into the syringe.  I focus on deep slow breathes until the pain subsides.  Out of the corner of my eye, I can see the P.A. hand the vial to the phlebotomist who prepares the samples for testing.   He banters back and forth with the smart, pretty, P.A. asking me questions now and then to keep my mind distracted.
 Far from over, the next part is the bone marrow biopsy.  It feels like a drill.  The instrument is pushed down through the flesh and into the bone to extract a sample.  I feel intense pressure as the tool goes round and round, drilling into the bone.  It seems to take forever.  And once again I must concentrate on my  breaths.  Finally a core sample of bone is extracted and dropped into another vial and handed off to the friendly phlebotomist. I open my eyes and ask for a quick peek.  I’m curious what this piece of my body looks like.  The white bone is about 1 ½” long and the diameter of a spaghetti noodle.  I hope and pray that no myeloma cells exist in the sample.
Several hours later after the fog from the morphine lifts, I head to the radiology department.  My next test is a full body M.R.I.
 I carefully lay down on my back with the thick biopsy bandage. The table is skinny and flat.  The radioligist begins snapping on my “armour.”  A large plastic unit goes over my chest and snaps down tightly. I lay my head down into a form which holds my head in place and then I’m asked if I want headphones.  “Yes, Please” I reply starting to feel a little claustrophobic as the large headphones are fit snuggly to my ears and then a large helmet like piece is snapped in front of my face.  There is a small window where I should be able to look down over my body and through a window where the radioligist will be sitting with his assistant running the scans.  Without my glasses I see nothing in the distance.  Now I can barely hear as the kind nurse places a plastic bulb attached to a cord into my left hand.  She explains if there is any problem I can squeeze the bulb and they will stop the scans and help me. 
I feel like an astronaut preparing for launch.  Except I feel plenty of gravity.  I am pushed and snapped and squeezed into this small rocket to where I am unable to move anything but my breath.  They ask, “are  you ready?  Is the music ok?”  I give a barely audible yes and they leave the room.  Now is the time to breathe.  I take a deep breath and begin counting slowly.  I focus on the numbers instead of my small quarters.  I count to seven, hold it, then blow the air out as I exhale for eight counts. 
The M.R.I is loud.  It bangs like a hammer quickly tapping out a fast rhythm.  Then silence, and then a clicking noise as the scan moves to a different position.  “Just breathe,” I tell myself over and over.  The first ten minutes are hard.  I need to cough, to swallow.  I move my head slightly and wonder if I messed up the scan.  Slowly my breathing becomes steady and controlled.  My body relaxes and my mind is free to wander.  An hour goes by and the machine finally stops.  I am freed from my space ship, and I sit up letting the blood flow to my hands and feet.  I made it through another test, and it is time to go. It is time to return home and to wait.  To wait and wonder what the results of these tests will tell. 
Finally it is Friday.   My husband and I head up to Huntsman to meet with my new oncologist.  Dr. Tricot has moved his practice to Iowa so I now see his partner Dr. Zangari.  Unlike the slow and methodical personality of Dr. Tricot, Dr. Zangari enters the room in a whirlwind.  He opens up my files, taps on his computer and begins asking questions all at once. 
After reading through lab and test results on the computer, he invites us to come over and look at the screen.  He points out the sentence from the M.R.I results and says in his thick Italian accent, “I can’t do a thing for you.”  I see the twinkle in his eye and read from the report, “no sign of multiple myeloma.”
 And my husband and I breathe a sigh of relief for another eight months!

Dr. Tricot, Iowa

Guido Tricot, MD, PhD, is the director of Holden Cancer Center’s Bone Marrow Transplant and Myeloma Program at UI Hospitals and Clinics. He specializes in multiple myeloma and has been researching and treating this type of cancer for over 20 years. Dr. Tricot, who had been heading up the only Total Therapy program outside of […]

Still Climbing

My hopes for a steady recovery after finishing treatment in August were postponed for a while.  September started off great. Tabitha turned one.  We had a birthday party at the park.  Tabi was the entertainment as we watched her enjoy her very own birthday cake.

  My little grandaughter is now toddling(walking) around the house and keeping her teenage uncles busy keeping her out of trouble as she explores our home. 
What sunshine she brings to my life!

Mid September brought some challenges that had me sliding down this mountain I’ve been climbing.  I even had to put on my extra bracelet for the climb.

                I’ve explained about my “couragelet” before but can’t find the post.
                                               ( ker-age-lets, yes I made up that word!)
  I was given my first “couragelet by a Peruvian woman in a village where I was staying with my daughter.  We spent two weeks in Peru with a humanitarian project.   I wore  the bracelet when I climbed Macchu Pichu and have worn others like them from Peru since I began my mm mountain climb.

After several regular visits to my oncologist, the P.A. (physicians assistant) noticed some increased numbers having to do with liver function.  She suggested that I have an ultrasound.  The results came back positive for ……….”Non-alcoholic fatty liver disease.”  Probably caused by steriods…  definitely not alcohol since I have never drank any. (somehow that seems funny to me.  There has got to be a joke in there somewhere!)   After the initial panic, my internet research suggests that this is pretty common, rarely shows any symptoms, and can sometimes be cured through diet and exercise.  I have an appointment with a GI specialist in November to figure it all out.  Until then I’m putting it on the back plate.

Well my friends those steriods haven’t finished with me yet!  Around mid September, I started to notice my stomach aching after I ate and really hurt if I drank pop. It began to worsen until I was feeling nauseous all the time. I visited my oncologist several times.  I went to the hospital infusion room twice for IV fluids and zofran-an anti-nausea medicine.  It just did not seem to work!  I was having more nausea and vomiting more than when I was on chemo!  something was wrong and I was getting very discouraged! Finally the Dr. suggested I get a scope.

On Tuesday the 18th, I went in for an endoscopy procedure where they sedated me then put a scope down my esophagus and to the stomach looking for anything unusual.  Strangely I was worried if they found something and also worried if they didn’t.  At that point after being sick and tired of being sick and tired, I just wanted to get some meds to knock me out and keep me under as long as possible. 

Well before I could count backwards from ten to seven, it was over.  The doctor -who was an hour late starting! and trying to catch up, came in when I woke up with the news that I now have an ulcer at the bottom of my esophagus  probably due to…..steriods!  ugh!!  He quickly wrote me out a presciption for omeprazole and he was out the door. I have been on this med. for three years but quit in early September after Dr. Tricot told me I didn’t need it anymore.  Huh? What?!!.  Dexamethasone strikes again!

So now I had an answer but that still did not make me feel any better physically.  Luckily, on Friday I had an appointment with my own medical detective.  Dr. Jane is an oncologist who specializes in pain management and medication side effects.  She thoroughly went through all of my meds and symptoms.  Some I have and some I didn’t know I have.  She worked her magic, changed some meds,  and said that she could help me feel better.  I wanted to run over and hug her!!  It will take about 6weeks to heal this ulcer.  I should start feeling better much sooner. I’m also hoping be able to get rid of some of the pain and neuropathy too.   

So thats where I’ve been the last couple months and here’s what I’ve learned:
1. I need to go to a GI because I have NAFSand GERD from an ULCER which I got from DEX and RXs for treatment for MM.
2. Being sick without knowing why has been tough.  I’m trying to be tougher.
3. Being physically sick is hard on the soul.  I’ve been doing a lot of soul searching.
4. The most important things in life aren’t things.  They are my faith and my family and a good husband who brings me yogurt smoothies, black licorice, and back rubs whenever I need them!   Thank-You!

You Can’t Get Better Than Zero!

The glass doors swoosh and blow a little air into my face as I leave the underground parking lot and enter the hospital headed for the elevators.  I always push the “up” button with the middle joint of my middle finger. Have you ever thought of how many germs have accumulated on those elevator buttons? ! I am much more cautious about such things now.  
No matter how many times I have entered these doors, rode this elevator, headed for floor number 2, clinic B.  I always think back of my first visit.  It has been 33 months.  Almost three years.  This place used to be my battle zone.  Today I just want to put all of that behind me.  Today I see if I have won the war.
The elevator doors open and I leave my dark memories behind.  I step into the beautiful lobby and almost feel at home as I enter the clinic.  I know many of the nurses and employees by name and even more by face.  I haven’t  been here for six months; I used to spend so much of my life here in the beginning. 
 These people know what I have been through.  They understood the fear in my eyes and the crack in my voice when I began treatment.  They have seen me at my worst.  Holding my hand and reminding me to breathe while I brace myself for the bone marrow biopsy. Drawing countless vials of blood and asking about how my family is doing; What I did for summer vacation. They remind me that I can do this. Hopefully they will see me at my best.
Maybe that is why I wore a dress to my appointment today.  Last Thursday I  went through the usual tests. (see test results on side bar)  Not that there is anything usual or common about them.  Today Dr. Tricot head of research and expert oncologist of multiple myeloma (Not melanoma) will go over test results and discuss with me the “Plan.”  (This is where Alex Trebek comes in with the music from Jeopardy.  Hum a long if you would like. Da da Da da. da da da.)
And this is what he said in his Belgium accent……………..”Things look perfect and you cannot get better than perfect.”   Which interpreted into Western English means.  I am done with treatment!  My numbers are doing what they are supposed to.  And to further explain he added…..”You can’t get better than zero!”

I am DONE with treatment
One year of not-one-but-two stem cell transplants. High dose Chemotherapy and recovery.
ONE year of Velcade (more chemo) Thalidomide, Revlimid (ugly friends that help “the velcade go down” and do it’s dirty work.
ONE year of the nasty but effective steroid that helped me gain 20 lbs, chubby cheeks, and ADD. (Attention Deficit Disorder.)

So after 33 months of very aggressive treatment I am looking forward to a very, very long remission and hopeful cure.  My beloved Belgium doctor thinks that I have a good shot at it.  I’m taking his word for it.

Stay tuned: What happens now? 

And now for a little help from my friends.  How does one celebrate such an occasion?  Any suggestions from a double scoop of chocolate mint ice cream in a waffle cone to an exotic cruise on a limited budget will be considered.