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Grey Matters: Hodgkins Files mutations and Choppy Treatments

If there was anything that has been the norm in my newest health concerns it is that there is no norm.  As we have seen before it took forever with several missed attempts at a diagnosis to finally come up with I have cancer and lymphoma.  After all of that, it was found that I have Hodgkin’s Lymphoma and that was that.  What a great thing.  It is the “good” cancer and all will be treated with the lighter chemo and I would be on my merry way.  Fra-la-la-la.

Guess again!

Lets start from the middle okay.  I got a call from the doc heading up the clinical trial saying that they got the biopsy slides from Thomas Jefferson University and that there was more than enough material to use for the clinical study so I was in and did not have to go through another procedure to get more cancer out.  That was awesome because I did not want to have to make the decision to be selfish because I really did not want to go through another procedure.  I know it would have been for the greater good and helped not only myself but others but I really, really did not want have another procedure.  They are usually pretty rough and I usually have to fast before them and that long without food or coffee sucks.  So we were in an awesome state.  Then it all started to go sideways.

It was Thursday 5 July and I was at my totally awesome job getting things wrapped up for the week because Friday was going to be dedicated to the treatment. On top of it all I was meeting the girls at the Jimmy Floyd Center for some frolicking and swimming fun at the outdoor pool.  Thursday was looking up.  Then came the voicemail.  Really, the voicemail was not that bad.  It was Doc Reddy, saying to give her a call.  Okay, so I called and she started telling me that they looked at my biopsy slides and found not only Hodgkin’s cancer cells but Large B-cell cancers.  She started talking about the CD-20 being expressed.  Which means nothing to me but sounds cool.  In any case, I was told that I have both Hodgkin’s and non-Hodkin’s lymphoma which is known as Grey Zone Lymphoma.  Doc Reddy told me that my treatment would change and that we would discuss it further on Friday and that I was out of the clinical trial.  She assured me that we would be still kicking the shit out of this cancer that it just meant a different set of poisons.

Well, I did what I was supposed to do and spent about 5 minutes looking it up then called Space and told her.  She proceeded to panic and eventually I asked her if it was necessary for me to be part of the conversation.  I hung up and continued with my day.  Later in the days Space called me back still panicking and trying to induce one in me.  Evidently Grey Zone Lymphoma is so rare and new that they have not made a pamphlet about it.  That was odd but I assured her that none of that was helping.  In any case, I am evidently 1 in a million which was a let down because I was pretty certain the odds were 1 in 7 billion.  The real question about the statistics is, whether that is out of cancer diagnosis, lymphoma diagnosis or everybody.  I will have to look into that further.  Eventually, I made my way to the Jimmy Floyd Center to get my swim on.  I love that place.  We got all cleaned up and proceeded to the orientation for Gilda’s Club.  More on that at a later date.

So the day comes and we take our sweet time.  Getting breakfast at Frankies the on to Vandy.  Labs are a let down because they only take 3 vials. How am I ever going to break the record like that.  We meet with Doc Reddy and have questions in hand so we can be as prepared as possible. Doc Reddy is totally awesome with the answers which Space has gotten from her co-workers (other lymphoma docs) there is a lot of medical blah blah and terms that I don’t really care about.  I may seem like I am ignorant and uninterested but I firmly believe that being an informed patient does not require that I have a medical degree.  That is what the Doc if for.  She explains that I can eat what I want to eat, including sushi and street hot dogs, and that my stomach will dictate my diet.  One bummer is that my swimming days at the Jimmy Floyd Center are up till I am done with treatment.  The Psycho will not be pleased.

Doc Reddy explains that the treatment I was getting ABVD (not an underwear) will not do the trick.  That I will be getting r-CHOP.  That stands for:

r= Rituximab

C= Cyclophosphamide

H= Hydroxydaunomycin

O= Oncovin

P= Prednisone

See, I know shit.  It is chemistry and of course I can look this stuff up on Wikipedia.  In any case, it is the last one that has me real worried and that will come later.  Doc says that it is a harsher treatment and will hit me and the cancer real hard.  I will be getting the r-CHOP every three weeks and should expect it to go on for six cycles.

Wait let me step back a bit.  We checked out my medical record on the Vandy web site which is totally awesome.  The PET scan and CT scan showed that I have two cracked ribs which I probably got with laughing and coughing too much.  It also, showed that the lumps on my legs, arms and neck are not part of my cancer.  They will be a mystery for the rest of my life.  In any case, Doc said I would get a PET scan after the third treatment to see how things would progress.  We were then sent off to… lunch.  It turns out that the hospital cafeteria is pretty good.  They had some fresh sushi that lit my mouth up with a rainbow of flavor and spice.  The fries really hit the spot and who doesn’t like diet mountain dew.  We returned to the infusion center to start it all up.

The infusion center was totally awesome.  They are individual suites with a recliner for the afflicted and a not as comfortable recliner for the supporter.  There was TV and a working WiFi.  It all started with the r (rituximab) which because of possible allergic reactions had to be added slowly at first and pumped up over time.  The reaction to look for was chills and joint pain.  Not me, I had hot flashes and a weird taste in my mouth.  That could have been the Diet Mt. Dew.  That damn stuff took 4 hours to get into me.  I slept, read, watched some TV, listened to some music and at one point was walking around and thought about trying to escape.  Then came the rest.  I am not sure which came next but the nurse pumped it into me manually and one of them was red.  Nurse even told me it would turn my pee red and it did.  I check right after the treatment and called Space into the men’s room to see my red pee.  The last one was a drip bag which cleared my sinuses and added pepper.  Overall, it was 6 hours of waiting around being really bored.  Nobody told me that it would be boring.  I don’t do bored very well.  Perhaps, I can get a spinner bike or a dreadmill in there.  I need something to do.  I should start Chemo marathon running.  Or better yet, chemo ultramarathon running.  Get your treatment and finish your first 50 miler while you are at it.  What an amazing idea.  Perhaps, I need a sponsorship via the Slugs.

To the Aftermath, chemo-man.  I was put on some anti tummy ache pills that mess with your head and they seem to be working because I was starting to feel sane and only that first night did I throw up.  I woke up at about 2 A.M. and felt a lot of gurgle.  I made my way to the porcelain throne and had the most pleasant vomit of my life.  No kidding.  It came out with ease and I was done.  A couple of hours on the bathroom floor and all I had to show for it was a sore back.  My cough has gone away for the most part and till yesterday my chest pain was gone.  The stuff was really getting my head all messed up but it could have been the prednisone.  It is a steroid that I have been on before.  Not for my Tour de France win but for some alergic reactions and an infection I have had in the past.  Each of those times, the prescription was a full dose then a ween off because the shit messes with your mind.  When I say messes with your mind I mean Dan Quayle and Joe Biden had a love child mind blow.  But those cancer docs don’t care.  It is a full dose then cut off after 5 days.  WTF!!!!  By Wednesday afternoon I was fucked up I couldn’t see straight yet I still drove home from work the curvy way.  I made it home barely and Space called the nurse at Vandy.  The nurse was mad because I had yet to take my anti-head hurt drugs.  Since then I have had a good regiment of being drugged up and I have stayed out of trouble.  Two other things:

1.  I pee like a team of race horses standing on two legs in a cheerleader pyramid.  The stuff just flows.  I mean so much comes out I can cross my own stream.  It is a lot but it is no longer red.  That only lasted a couple of days.

b.  I have yet to lose my hair.  I shiver with antici….pation.  But maybe the rain, is really to blame.


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