Oh...What a Week!

Monday May 7th 2018

Debbie has come down again to drive me around Salt Lake.  Last night I took Abby over to Heidi's again so she could get her to and from school.

My first appointment was at McKay-Dee in Ogden for the Lumbar Puncture at 8:20 am.

 {Lost this picture not sure where it went}

We got there and I had to get gowned up.  We always enjoy being weird and taking pictures.   I'm sure people walking by the dressing room were wondering what all the giggling was about.

Ta da!  Ready for my close up!

Cheese!

I got sent back to the surgical room and Debbie got sent back to the waiting area.  I was given the down low by the surgical nurse.  We went over the procedure.  I asked her how it compared to a bone barrow biopsy.  "Well we don't sedate you for this like they do the bone marrow biopsy".  I have never been sedated.  They sedate people!  Why wasn't I given that option!

She also went over the post procedure care and told me I would lay on my back for about an hour in recovery and that I should be on my back for 24 hours after that.  This was to prevent the massive headache that can occur if too much fluid continues to leak from the site.   I told her that would be a problem because this was the first of 3 appointments I had that day.  She would have to check with Justin the specialist doing the lumbar puncture.  I was only given a first name he could be a janitor for all I know.

When Justin came back to start things up the nurse told him about my appointments.  He said, "ahhhh just take it easy, lay in the car flat as much as possible and then just don't lift anything".  So much for going to IKEA while we were in SLC! 

I get up on this super high tech table that floats off  a C, or quarter moon shaped arm.  The table raises all the way up so that I am at the height comfortable for the janitor to preform the Lumbar Puncture.

I asked him what the pain scale would be from 1 to... say... bone marrow biopsy.  He laughed.  "Well we don't sedate you for this so it could be pretty bad".   AGAIN why was I not sedated at all for any of the THREE BMB's I have received!  Geez!

I told him I was never sedated so he comforted me by saying this would be a cake walk after that!

I don't know if it's all in my head but I am getting less tolerant of the needles and the "this will be just a pinch" nonsense.  I have never been one to be scared of needles but I was just about done being poked and prodded!

I felt the pinch {sting or burning pain} and then a portion of my back went numb.  I pictured a stack of books resting on my lower back.  The rest was pretty tolerable.  He did nick a nerve and I did the whole scream and grab the table thing.  "Hold still! You're doing great!"  Aghh!

I was a little bumbed that he didn't do a play by play.  Lots of procedures were I am NOT sedated they give you a little move by move narration so you know what is going on.  "I'm just hammering an 8 inch needle into your back".  I was going to ask "what's going on back there!?" ,but felt maybe this guy can't talk and chew gum at the same time.  So it was best to just wait 'til he said something.  It felt like it was going on forever!

Finally he said I just have one more tube to fill and we will be done.  Once he was done I got wheeled back to recovery to lay on my back for an hour. They grabbed Debbie from the waiting room and we hung out for a while.  Discussing how we could make IKEA still work.  Maybe we could make a bed by getting a mattress and one of the flat bed carts.  She could just pile stuff up on top of me.  I think that would totally work!  Then we discovered it is still an hour drive from Ogden to IKEA.  Why does it have to be sooooo far south!

At this point I was beginning to feel very beat up.   I was laying on my new wound and laying on my bone marrow biopsy site from 3 days previous.  My head is still healing from the biopsy on my temple and whenever I lay down flat it throbs.  I had to ask to be elevated so my head was at least above my heart. What else do you want to do to me!  Bring it!   {oh...we aren't done yet!}

Laying flat for a while!  With my heart monitor on.  Vitals?

Well after an hour we get to take off.  Todd the recovery nurse said the same thing as Janitor Justin.  Just take it easy and lay in the car for as long as you can.  Debbie and I have still have about 2 and a half hours before the appointment at the Loveland clinic.

McKay-Dee done!  Where to next?

We decided to go to In and Out Burger.  I haven't been there since we were travelling down to Grandpa's funeral February 2016.  So In and Out Burger it is!  We decided to be rebels and eat in a covered parking garage that said permit only.  Livin' on the edge!  We killed a little time eating before heading to Salt Lake.

It actually kind of worked out that we were able to drive around and look at some of the super cool houses up by LDS hospital and then just head up to the appointment.

They drew labs like usual.  I was brought in by Andy one of the nurses there from last time.  When she saw me she was like, "Booo!  I thought I recognized the name.  We don't like to see this!"  One of many good to see you NOT good to see you moments.

We get put in a waiting room to await the history update and follow up from one of the PA's.  Again I am sure anybody walking by would wonder what all the giggling was about.  I told Debbie about the experience of me trying really hard not to fart while the Janitor was doing the lumbar puncture and you know farts = giggles!  Bwahh...ha....haaa! 

Soon the PA came in and we spent lots of time going over things that have already been gone over before.  I still don't understand the medical professions complete lack of central databases.  Let's EDIT my profile.  Let's UPDATE the information.  Oh no.....they like to start over ever time in EVERY office even though they are all part of the great Intermountain healthcare system.  I'm not bitter.  Lately I've been obnoxiously writing, "please see my charts and please consult the list of meds in your data base" as a subtle clue that they already have this information.

Next came the part where they go over family history.  Which by the way I already did this less then a year and a half ago.  UPDATES people!  I was waiting to get to Debbie so I could tell the PA that she had mental problems and that her twin was still encased in her body and I missed the opportunity.  I though we were on Sarah and lost my chance!  Dang it!  "Oh wait that's Debbie"!

We didn't have to wait for the 3:30 appointment with DR. Gouwe he was done with his last appointment and we got taken to the conference room.

THIS IS WERE I GET REALLY CONFUSED AND I'LL BE HONEST MAD!

So much information was given during this meeting.  Here is the whole conversation in a nut shell.

"We aren't even sure the cancer is back, but lets do a super lethal stem cell transplant on you any ways"

The very first thing he talks about is the fact that we have rediscovered the "cancer" almost too soon.  When we talk about staging I wouldn't even be stage one. The mass in my head is a mystery.  Ever Dr that has seen it say, "that's interesting".

I asked him if the pathologist didn't know what the "mass" was and linked it to my previous cancer cause that is what was on my charts.  The "mass" itself definitely was lymphoma, but did it have Mantle Cell markers?  There aren't even lymph nodes in the area were the mass was taken.  This could be why they did the lumbar puncture.  What is going on in the central nervous system?  The PET scan showed a few lymph nodes in my neck.  Dr. Gouwe suggested that it could be possible that the dye leaked into some of the lymph nodes.  It is normal for the dye to get into healthy parts of the body like the heart and lungs.  The only way to tell if the nodes were really a problem would be to do a needle biopsy.  They are TOO small to do that to!  HELLO!!!!!

So why are we there?  They are going over the treatments we can do at the end of my summer of chemo.

Anybody else confused?

We are told that the Rituxin and Imbruvica can be something I stay on for a long period of time.  Imbruvica is a drug that can keep the cancer at bay.  {Since we don't even know what is going on I vote for that.}

Second he goes over the CAR-T therapy.  They now train T cells to identify specific markers in cancer cells and go after them.  Oh but it is still in trials for Mantle Cell NHL.  It has been approved for all sorts of other cancers.   The trials are full and they only do that in California, Colorado and Washington.  That would be doable.  Erin lives "near" Seattle.  Maybe that could work.  Thanks for telling me about something cool that I can't even do.  MAYBE it will be approved after I stay on Imbruvica for a while.

OKAY here comes the part that really does make me angry.  THE DONOR STEM CELL TRANSPLANT.

Horrible, Horrible, Horrible,  Die, Die, Die,  Low chance of survival, if you survive it a low quality of life,  torture all of your siblings for a match,  they don't pay for lodging or travel for sibling that does match, stay in SLC for at least 100 days and possibly more after that.

Nothing about this sounds good.  Sounds like a last resort type of option to me.

OH and by the way.  IN THE WHOLE WIDE INTERNATIONAL DATABASE OF STEM CELL DONORS THERE IS NOT ONE SINGLE MATCH FOR ME!!!!!!!!!

Not only is mantle cell rare, not only did I come through the auto stem cell transplant in a matter of weeks not months, I get to be such an odd duck that I don't even have any matches for stem cell donors!

Way to be special Amy!

Next Dr. Gouwe tells us all about the match options.  Having a exact match donor would give me the greatest chances of getting through the process with the least amount of long term complications.  IF it even works.

There is also what is called a half match.  This lessens the odds.

This is when he really just goes crazy.  "I think we should do the stem cell transplant NOW.  Your body is disease free so now would be the best time".  Can you just imagine the face I gave him!

What!?

He goes on to say that it is a big debate in the stem cell transplant arena.  He was at a symposium were it was so heavily debated that people were YELLING at each other.  I can see why.   Why would you take a person who is showing no disease and drop a bomb in their body on purpose.  That would be knocking on Death's door.  No thank you.  I would rather die of natural causes.

Don't tell me in on one breath that I have no tangible sign of pin point-able disease and then tell me in the next that you want to try and kill me!

He then leavse to go to another appointment.  He really wants to do this.  Thank goodness there is a tumor board and there are SEVERAL Doctors that will think that one through. If they don't come to a decission they will consult Texas the Mantle Cell research capital of the world. 

We stay with Cindy the coordinator and she goes over the sibling donor match process.  She is ready to take Debbie down right then and there to get her typed.  I said no!  We will wait 3-4 months 'til after the Ritximab/Imbruvica process before we even think of doing that!

I am starting to feel like a Guinea Pig.  Like it was prearranged that they would come to that conclusion.  Lets use the girl that went through the auto stem cell transplant in record time to see if she can do a donor one just as well.  Even if there is no reason to do it yet.

He came BACK into the room and said he really thinks we should do it.

Again....WHAT!?

I left there just a little peeved.

I'm just going to put myself in a blissfully ignorant bubble for the next 3 months. I'm just going to plug along on the treatment schedule that Dr. S has prescribed and hope for the best!  La, La, La!

That was only Monday.  I need to start a new post for the rest of the week.

A lovely view of the State Capital during the spring.

I do have to mention that Debbie wants a T-shirt that says  "I am an adult. I can drive in SLC!  Thanks Debbie for getting us there and back again without killing us!  Your an adult!  Gold Sticker for you!