Showing posts with label tests. Show all posts
Showing posts with label tests. Show all posts

February 19, 2012

JUST BREATHE


JUST BREATHE
 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!


August 23, 2011

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.







January 28, 2010

My Report Card

         Going on a "Dog Walk" with Trent and Spencer. (I walk they run)

Last week I went to Huntsman for tests.  Labs, a PET/CT scan and a bone marrow biopsy.  I must be getting better at this.  It all seemed very routine.  I felt little anxiety and even the biopsy was easier. I guess this is a good thing since I will be having these, hopefully at much longer intervals, for the rest of my life.   On Tuesday we met with Dr. Tricot to go over all the results.  

     

My numbers are good. I pour over the lab reports trying to understand what each of the results mean.  This is a huge and overwhelming task for me in my "Chemo foggy" brain.  but I guess it is a good mental exercise.  I borrowed some of the analogy's from several other cancer blogs.  (I hope they don't mind.)

Here are a few of the lab test results compared to when I was diagnosed.  I was sure one “sick puppy” when I was diagnosed.  It is amazing looking back that I was as sick and tired as I was and thought it was just from being a busy wife and mother.

 When a person has myeloma they have an unusually high number of plasma cells in the bone marrow.  These are completely different then the white plasma cells in the blood.  Somewhere along the line one of these plasma cells turned to the "dark side" and begin multiplying itself over and over and never dying like a normal cell.  In most people there are 1% to 2% plasma cells in the marrow.  At diagnosis I had 80% plasma cells!!  I even have some lovely pictures taken from the first biopsy magnified 1000X.   They were crowding out other good cells which produce immunoglobulins or proteins to help fight infections.  Because I had evil cancer cells lurking in my marrow they sent out way too much protein into the blood and that was the first red flag.  Now for the good news.  I now have 1% plasma cells!

The next myeloma marker is the Beta 2 Microglobulin.  This shows how advanced the disease is. You want it to be less than 3. At diagnosis mine was 4.4.  It is now 2.8mg/l.

Your total protein is made up of several specific types.  The myeloma is classified by one of these.  I have IgG. The normal range is between 600 - 1500. At diagnosis my IgG was 9,286 mg/dl!!  It was 164 in Oct. but bounced up to 850 this time.  I panicked when I saw this but the Dr. explained that this is because I have been getting IVIG infusions every month to boost my immunities through the winter and that this is nothing to worry about. wheww.

Hemoglobin is an iron level is important because mm can cause sever anemia.  Normal levels are 12 to 15.5)  If it goes below 9 then I have to get a blood infusion.  I haven’t had one for months. It was 11.5 this last time.  

The PET/CT scan reported lots of different findings which I don’t understand however I do see lots of “normal” findings. Yea!  At diagnosis there were hundreds of lytic lesions throughout the skeleton.  They now report no focal lesions and no sites of tumor involvement.  I continue to receive 

Aredia infusions once a month to harden and strengthen the bones. They must be working. 

Have I lost you yet?  Those are a few of the test results that I quickly wrote down while visiting with the Dr.  I will be getting the lab report in the mail in a few days.  

So the good news is I am in Complete Remission.  There is no signs of active cancer. But we have chosen not to just treat this rare cancer but to aggressively work towards curing it and for that I am now on maintenance treatment of Velcade, Thalidomide, and Dexamethasone for a year.  I am half way through.  It is grueling.  I feel like Bozo the clown punching bag.  I am just starting to stand upright and then someone comes along and punches me back down.  It’s quite the life.  But it’s my life and I have much to live for and so much to be thankful for.  

   

I have an amazing husband and family.  I find so much joy just being around the love and energy of a household full of active, involved, good children.  I have faith in God that this mountain I am on is part of God’s plan for me.  That this mountain under me moves as I continue to climb and overcome the obstacles in my path with help from God and the support of my family and friends.  I am blessed!

October 28, 2009

Happy Cancer Day

One year ago today I was diagnosed with cancer. This morning my husband wished me "Happy Cancer Day." Wow what a year! Who would have thought a year ago that: I could give myself a shot (a blood thinner) every night without even flinching. That I would lose all my hair... twice. That I would finally get down below my "goal weight".....and then gain it all back. That I can lay down during the morning, afternoon, and evening... and not fill guilty. That I can impress family and friends with a list a page long of all the medications I take. That I know more about cancer than anyone should have to. Who would have thought a year ago that I would even know what multiple myeloma is. Wow what a year! We celebrated by meeting with my Doctor at Huntsman. Last week I had an MRI, blood work, and another biopsy. Today we went over the results. Everything looks good and "my numbers" are where they are supposed to be. We celebrated by going to lunch. Maybe tomorrow I'll bake a cake.

July 08, 2009

Test Day

    Tomorrow is test day.  Joe and I will head up to Huntsman to see exactly how much progress has been made through chemo, two stem cell transplants, and specialized drugs.
     I will have lab tests run first, and bring in a 24 hr. urine collection (fun :0)  Then a bone marrow biopsy and aspirate.  If you want to see what this involves, there are some great videos on Youtube.  None of my sons were brave enough to watch, but my daughter and I watched them twice.
   I will also have a combination PET/CT scan.  This procedure takes about three hours, because first  they must inject you with a small tracer quanity of radioactive material that is attached to a sugar which goes to the metabolically active parts of your body.  You have to sit in a recliner in a quiet room for 45 minutes to give the sugar time to get where it needs to be before the procedure.  
   One time I brought a book to read, but the nurse told me I couldn't read because then all the particles would go to the brain. interesting.
    After a peaceful rest,  you are lead to the room with the big tunnel machine.  The nurse shows you where to lay down.  The blanket covered "bed," is abut 12 inches wide.  So you lay down with no place for your arms. Do I lay them across my chest or let them dangle to the floor? Then the nurse steps in with big black velcro straps.  She straps your legs together below the knees.  Then straps your arms closely to your body.  "snug as a bug in a rug!"
     That's the easy part.  "Let the magic show begin!" Now you must lie perfectly still for 45 minutes to an hour as the bed moves through the tunnel.  
    What do I do?  Do I sleep?  What do I think about?  The first few times I went through this procedure my objective was to try  not to think about anything.  Because one thought would lead to another and ultimately end up rather quickly back to cancer.  Bringing fears and fighting back the tears.  
   Now my mind wanders all over during the scan.  Last time I could not get a John Denver song out of my head.  "Country Roads take me home to the place I belong...  The problem was I forgot most of the words, but kept starting over, ugh! very frustrating!!
    When the test is over and the straps are removed from "the Magic show," they point the way down the hall to the waiting room.  The only good thing, I've decided, about this whole day, is I don't have to worry now (since I've lost my hair) of getting up and walking out the door with "bedhead!"
    Well there is no last minute cramming for me.  We will get the results of the tests from Dr. Tricot next Wednesday.  Wish me Luck.  We are expecting the best.  I will keep you posted.
                                Love, Kris

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