New Tats!

Good news, my radiation will start on Monday.  I might make it back to Alaska by Valentine’s Day after all.  I think the medical staff is getting tired of scolding me so they’re finally getting me out of here pretty soon.

Tomorrow, I have another bone marrow aspiration.  That’s the one that hurts a lot when they pull a chunk of bone marrow out of my hip.  I’m going soft now, this will be my sixth aspiration but the first one with sedation.  They said they will give me a lollipop for the sedation.  I’m not sure if they thought I was coming from the pediatric wing but I’d love a lollipop.  I may ask if I can get a cool sticker for my lunchbox while they’re at it.

In other news, I just got some tats!  That’s right, my first tattoos and my insurance company is paying the bill.  How could it get any better than that??  The tats aren’t very artistic yet.  They consist of three tiny dots, one in the middle of my chest and one on each side of my chest.  It’s for radiation alignment.  As soon as I got the tattoos, I had a strong urge to write a rap song.  So far, it goes like this...

“Yo, yo, yo....”

The rest of it will come, I’m sure.  Maybe I need more tattoos first.

In Trouble Again

Don’t worry, the treatments are going great.  The cancer numbers are near zero and I’m not currently sick.  The trouble I’m in has to do with my Nurse and Physician’s Assistant.  They are both extremely competent and caring providers.  They know every aspect of my treatment and seem to care deeply that I make a full recovery.  But it seems that nearly every time I have a clinic, I get in trouble with them.  It’s always about the same thing, I don’t call in to triage with every little health issue.  This time, they asked me the usual thirty questions, “Have you had a fever, are your feet bloating, do you have a rash, have you had nausea,” etc.  I’m always mostly honest.  The answers are, “No, no, no with an occasional yes.”  This time I let them know about my vomiting marathon on Saturday.

I said “I did vomit on Saturday.”  “More than once?” asked the PA.  I replied a simple “Yes.”  “How many times?” she wanted to know.  “About fifteen,” I answered.  At this point I braced for what I knew would happen next but I was ready with the best comeback ever.  “Did you call triage?”  she asked sternly.  I proudly answered with a “Yes,” expecting to get praise for the first time when this question was asked.  But they’re smart, very smart and whenever I’m in their presence, I’m not so much.  

Her next question was simply “When?”  At this point, I knew I was beaten again.  The finger wagging would begin as soon as I answered that question, and did it ever.  My voice cracked like a first grader who just got caught with a frog in his pocket.  “Sunday,” I said.  

Yes, I called the day AFTER I was sick.  The scolding that followed was stronger than that of my three previous appointments.  If I had called during the sickness, they would have told me to go directly to the hospital.  Every time I’ve been to the hospital, they keep me there with their ridiculous hospital gowns for days and sometimes weeks.  Since I did make the call, even though it was late, I asked for half credit for at least calling at some point.  They were not willing to concede that I did anything right at all.  

The truth is, as they have explained over and over, as a transplant patient getting sick with a fever or vomiting can be a symptom of something very serious.  In some cases, the results could be fatal.  I promised to do better in the future and I will.  However, I’m certain they won’t believe me until it actually happens.

Cousins

I’m lucky to have a huge family.  With well over forty cousins, I never know when I meet a new person if they might be related to me.  As it turns out, there are three cousins living in the apartment that I’m staying in right now.  One is my first cousin on my dad’s side and the other is a Martinson by marriage to a cousin once removed.  This building is reserved for cancer patients who may be candidates for a stem cell transplant so the odds of three cousins in the same building in Seattle are still pretty remote.  What’s more is the first cousin also plays banjo so we may have to get together to harass my neighbors with some banjo music.

A cousin on my mom’s side, “Nan” lives in Renton and works as a registered nurse.  We were pretty close while growing up so it’s great to see her now that we’re adults.  Nan took me on a road trip yesterday to somewhere north.  I can’t say where we went since there is a rule about traveling more than 30 minutes away from the Cancer Center.  It might have or might not have been more than 30 minutes away.  

The bizarre thing about my current health is, I can’t predict how I will be from one moment to the next.  Nan picked me up in the morning.  I felt great, no sickness whatsoever.  We were driving on I-5 when I shouted to suddenly pull over!  Nan has a brand new car.  If you are ever a passenger in a beautiful, new car and you need to pull over, the driver will switch four lanes in heavy traffic and be on the shoulder in less than 8 seconds.  I leaped out of the car and said goodbye to my breakfast several times.  In less than a minute, we were driving again.  I was once again feeling completely healthy and even hungry so we stopped and ate.  I had fish and chips.

Off we went, back on I-5, talking about old times and having fun.  Then suddenly, I yelled, “Pull over!”  Again, she made an immediate stop on the side of the road and you can imagine what happened.  The fish and chips were not very good the first time I tasted them.  This time, they were definitely worse.  Then we were off and now I insisted I was completely healthy with no inclination to be sick again.  There were two more pull overs that day, all with the same pattern of “I’m not sick, now I’m sick, I’m not sick.”  Most importantly, her car is still clean but I’m pretty sure she’ll want me to drive my car next time

It was a bizarre day but we had a great time, or at least I did.  

Radiation Someday

I finally had my consultation with the radiation doctor today about zapping my tumor into oblivion.  My expectation was that they would put me on a table, point the radiation toward the tumor and kill it in about five days.  I was very wrong.  It’s about a hundred times more complicated.  The doctor explained the various ways he could radiate the tumor while avoiding other body parts.  His favorite is a new procedure called VMAT or “Volumetric Modulated Arc Therapy.”  It’s basically radiating in an arc around the curvature of the rib.  Since radiation doesn’t bend, he plans to do a series of straight line bursts from different locations and at different angles so that the result is in the shape of an arc.  He drew a bunch of lines that reminded me of a graphic toy called the “Spirograph.”

The frustrating part of this is I still don’t have a radiation schedule.  Today was a consultation and I consented to do the procedure.  Next Monday, he’s gong to do measurements of my upper body to make a cradle, then some day I’ll receive the actual radiation.  As far as I’m concerned the sooner, the better.  The radiation appointments will probably be every day for two weeks.

I’ve had so many week long delays and they are hard to deal with but when the doctor shows me the science, it’s understandable.  There is a lot of calculating to do and they want to get it right.  Who can argue with that?

Tumor Clarification

I have had so many nice emails with concern about my returning tumor.  I'd like to clarify a few things about that tumor.  The tumor is in my upper chest, surrounding the second rib on the right, it's kind of in my right shoulder. The rib is mostly gone but I'm told it should eventually heal. 

Over a year ago, this tumor was the first symptom and it alerted me to having multiple myeloma.  It was large enough that I eventually had a hard time conducting, couldn't lift my tuba and was in a lot of pain throughout the day. Eventually chemotherapy worked to bring down the size but we could never eliminate it.

Now that it has grown again, for the first time the doctors plan to target the tumor with radiation.  To me, this is fantastic news.  My other tumors are going away with standard chemo and the work of two transplants. Since this one is just too big, it needs targeted radiation.  I have no doubt this method will work.  My doctors know what they're doing. Once that tumor is gone or nearly gone my brand new immune system will handle it from there.

While I deeply appreciate the concern from everybody, I want you to know the rest of the cancer is quickly retreating.  My current pain level is very tolerable and I believe my new immune system is battling the cancer.  My body is just one tumor away from a near full recovery.  

State of the Mike Address

I met with a doctor and nurse today to go over my overall cancer levels.  The tumor in my right shoulder is growing.  As explained in an earlier blog, it's simply too big for my new and suppressed immune system to tackle.  However, the great news is none of the other tumors are growing, in fact they all seem to be shrinking.  The tumors are one area where myeloma shows itself but it's also present in the bone marrow.

One of the measurements of cancer strength is called a monoclonal spike or M Spike.  It measures myeloma protein.  When it was first measured in Anchorage, the M Spike was somewhere around 6.0 or 7.0.  After months of chemotherapy in Anchorage, my M Spike got as low as 2.3 but now after two transplants and a lot of therapy it comes in at 0.1.  That's almost non-existent.

I'm pretty sure this is positive news but the tumor still has to be taken care of.  The doctor explained a three pronged method of attacking the tumor.  Spot radiation, oral chemotherapy with a drug called Revlimid, and reducing the immune suppressant drugs so the new immune system can do its work.  The immune suppressant drugs will be reduced very gradually over the next few months.  The radiation and chemotherapy will start within the next week or two.

The medical team was very cautious and technical.  They didn't seem happy that the tumor is still growing but the way I look at it is I'm just one tumor away from almost beating these cancer cells to a pulp.  I know it's too early to know for sure but I have a good feeling about where this is going.  

Rough Road

Today is a good day.  After a clinic this afternoon, I’ll know exactly what’s going on with the cancer cells in my body.  The doctors will hopefully decide a course of action to treat it.  This is a backward step from my assumption that I was almost done with the cancer.  It’s extends my time of being sick and it means I’ll have more side effects from the radiation or chemotherapy.

The entire experience has been a long road of ups and downs.  Now that my Seattle experience is close to an end, I’ll admit that I haven’t reported many of the downs.  I can also admit that they have had an impact on my overall outlook.  For several months, I’ve been waking up at the mercy of the disease and the side effects from treatment.  Predicting my physical health even one day in advance is futile.  I have to wait until the morning to know if I’ll be sick and miserable or feel almost normal.  When I’m sick, I tend not to write about it.

Even with the down days, my outlook is still strong and my prediction of total recovery is certain.  Admitting that it’s been a difficult time doesn’t change any of that.  The path to recovery has been and still is rough but the outcome matters more.  If I keep looking to the future, I will endure the road to getting there.

Tumor Update

As promised, I’ll pass on the latest information regarding my shoulder pain and what could be a full blown tumor.  The results from the PET scan from yesterday have not been analyzed but I saw the graphics from the scan.  They do show a brightness at the spot of the pain in my right shoulder which almost certainly means there is a tumor at that location.  Because of the probable tumor, the medical team is doing a full cancer search by analyzing my blood as well as interpreting the PET scan.  So I have a new appointment this Thursday to hear more complete results of what’s going on with the cancer.  The doctor did make some informed guesses as to what he thinks is happening.

Apparently my new immune system is not yet fully functional.  It’s brand new and I’m taking drugs that suppress it to prevent something called Graft Versus Host Disease or GVHD.  (That’s the disease that kills people.)  My new immune system is probably killing cancer cells but simply can’t keep up with a fast growing tumor.  So the next question is how to give the immune system a boost and get rid of the tumor or tumors.  After more information is gathered on Thursday, they will probably decide to radiate the tumor or tumors to shrink them to a manageable size.  Chemotherapy may also be added to the mix.  They will also eventually reduce the immune suppressant drugs so the new blood cells can be more active in fighting the cancer.  This is still based on assumptions and will be confirmed or not this Thursday.

The bottom line is, it takes time.  I firmly believe my body is making progress in killing these wicked cancer cells but it doesn’t happen over night.  It may take a few more weeks or even months but there is a good chance that I will beat this thing before long.

In my last blog, I bragged about my hair.  Here is an update to that blog, complete with pictures:

                       "Willow Bushes"

The envy of the female members of my medical team at SCCA:  No kidding, they were teasing me about them again today!  I haven’t told them that I don’t care how long my eyelashes are, I’m not a woman.

And the long awaited hair.  I was bald for for way too long.

Tumor is Back?

Mystery is mounting. Although I have a spot in my bone marrow without cancer, for the first time in several months I feel pain in my right shoulder again.  This was the location of the tumor that alerted me to the cancer in the first place.  In the past, the amount of pain correlated with the size of the tumor.

Fortunately, I have a PET scan scheduled for Monday morning. They will give me the results of the scan on Tuesday morning. That scan identifies tumors. Good news or bad, I'll pass it on this coming Tuesday.  Otherwise, I feel great and anxious to come home.

In other pressing news, my hair is growing rapidly.  My eyebrows look like willow bushes, my eyelashes are the envy of the female medical staff and I may have to invest in a comb within a week or two. 

Zero is a Great Number!

Every 28 days, I get to lay on a table, on my side with my trousers down just three or four inches.  It’s not my proudest moment but at least I’m not at the business end of this medical procedure.  They shoot my hip full of lidocaine, then drill into my hip bone.  The nurse says "Take a deep breath, now exhale!"  I have no idea why I’m supposed to breathe then exhale, except it might keep me from shouting four letter words as she pulls a core sample of bone marrow from my hip.  It hurts...a lot.  But one core sample isn’t enough, so she repeats the procedure for a total of three pulls.  

Most people take a sedative but that would require a friend to be present to help me walk out the door afterwards.  The fewer people who have to see my plumber’s butt, the better so I do the procedure alone and without a sedative.  I’ve done this procedure five times and have just one more to go.  One of the tests on the core sample is to measure the amount of cancer cells within the marrow.  On day 28 after my second transplant, they found just a trace of cancer cells.  On day 56 (last Monday), they found zero, not one cancer cell in the bone marrow.  I was warned that it doesn’t mean I'm free of cancer, it’s just a sample of a small portion of marrow.  I could still have cancer cells elsewhere in the marrow and in the form of tumors but it’s a great sign and I’ll gladly take it as good news.  This is the first time in five procedures that the number hit zero.

A complete cancer workup will happen on day 84.  They will do a series of tests that will be more conclusive.  That’s when I’ll know exactly how much (if any) cancer is left.  Twenty percent of patients who receive a double transplant end up in long term remission.  However, fifteen percent die from the procedure.  

I’m pretty certain I haven’t died yet unless heaven or hell allows tuba and banjo music.  (My musical friends will all have a some strong opinions on this).  As far as the near cure, I’m hopeful to end up with the twenty percent but even if I’m not, the cancer is so minimal at this point, I can live with whatever the result.  The key words here are: “I can live.”

Good Behavior?

I just learned that there is a chance of going home early. My scheduled release date is February 15 if things are going well. According to my medical team, I'll be assessed two weeks before that date. They will decide my release date according to that assessment. It's like getting a reduced sentence for good behavior. 

I'm still in the planning stages to bust outta here. I have to appear completely healthy. You can bet that every time I meet with a doctor, I'll be sitting up straight with my hands folded on my lap and a big smile on my face.  

I'll let him know that I walk a mile up Capital Hill every day and I walk back which is also uphill. I'll also mention that I'm taking classes in Yoga, Jazzercise, Zumba, Tai Chi and Chai Tea.  Yesterday, I even swam four laps which was quite exhausting (around Lake Union).  So with any luck, I'll be home in a month. 

2015 in Song

So long 2015!!  I won’t miss you.  It’s not that I’m not grateful for the good things that happened but overall the bad things greatly outweighed the good.  

Sing to the melody of Auld Lang Syne

Goodbye to year two thousand, fifteen

I am glad to see you go

You brought me sickness, heartache too

You’re the worst year that I know

They filled me full of drugs all year,

They examined me every day

They poked and prodded everywhere

They made me sick in every way

My sickness goes on for many months

I pretend that all is fine

My doctors truly want to help

For a cure, I’m just on time

The bills have topped a million dollars

My share is one hundred grand

If I sell my children and my house

I can pay for most in hand

My car went dead this year for good

My house needs work done now

I’ll pitch a tent that’s close to school

And eat Ramen for my chow

But friends and family have reminded me

That I’m not in this alone

I’ve embraced the kindness bestowed on me

It’s sincere and brings me home

I spend a lot of time down here

Being lonely and sometimes sad

The outpouring of care toward me

Makes me feel the year's not bad

I’m stronger for the experience

The cure could be a month away

Two thousand, fifteen, I forgive

I’m getting better every day