The port

I had my port put in yesterday.   It is a larger device than I thought it would be, and there is a lump on the left side of my chest.   The procedure wasn't bad, but I was a bit sore coming out of the hospital.    The biggest problem with it so far is that I could not get into a comfortable position last night, so I haven't slept.   Hopefully the Lortabs will at least allow me to catch a nap today.

Why I write

 

I write these little bits not only for my own peace of mind, but also in the hopes that someday, someone who is researching cancer or diffuse large b-cell lymphoma may stumble upon these words and know that it is OK to laugh, and to cry (not that you have much choice in the latter).  I also hope that the researcher may establish a bond of sorts with me and my support,  even if only in spirit.   Some posts will be almost technical, where I am just trying to pass along information, some posts will be humorous, as I try to make light of most situations, but there is just no humor in some posts.   This will be one of those, as I relate the nights where we broke the news to our children.   

We had decided not to tell our children right away, as there was nothing really to tell.   Another factor was that Malena’s mother had passed away from pancreatic cancer 1 year to the day of my lymph node removal.  

Friday, our oldest son, 13, came home with an attitude.   He didn’t want to do homework, was upset that we had grounded him from the Xbox 360 because of his grades, and was just generally in a foul mood.   Malena decided that it was time to rock his world.   She took him out, under the guise of needing help picking up something to eat, and drove to the local library where she told him that I had cancer.   I cannot really comment on the conversation, since I wasn’t there, but he came home about an hour later in a much different mood.   He was very subdued and serious.  He asked to speak with me in private,  and we retreated to his bedroom.   He turned around, gave me a big hug, and started to cry.   That started me as well, and I told him it was going to be alright, I was going to beat it with his help.   Mind you, we only knew that I had lymphoma at this time, not the type.   

The following Tuesday, we found out which type of cancer I had, and decided to tell our youngest son 11, and daughter, 8.   We all sat together in the living room, Malena and the kids facing me.   I started to explain cancer in general to them, and that cancer didn’t always take a person’s life, like it did their Nana.   At this point our daughter looked at me and said, “please don’t tell me this is about you”.   I told her that it was about me, and that I had a type of cancer that was treatable, and that I was going to fight it and beat it.   She stood up, found her Nana’s jacket and wrapped up in it.  She then crawled on top of her mother’s lap and started to cry.   Our youngest son tends to clam up under pressure.   He sat there, sad, and didn’t want to discuss the matter.   I sat beside Malena and hugged my youngest son.   My oldest son sat beside us in silence.  Malena asked our daughter if she wanted to give me a hug, but she told her she was afraid she may catch cancer.   After assuring her that you cannot get cancer that way, she sat in my lap and hugged me.   We sat together like that, in silence but for the sobs, for quite some time.  All of the kids are doing fine now, and we plan on having them visit a counselor just to be sure.

The day after we told our children, our daughter organized a ‘get well soon’ letter writing campaign in her 3rd grade class.   While most of the cards were from her, some were from her classmates, and one was signed by the entire class.

 

I’ll keep those cards forever.

20/20 vision

The scheduling picture has become clear, at least for the next two weeks.
Thursday, February 24 9:30 am - my port is to be...installed?   Added?   Upgraded?   I don't know.
Monday,  February 28 9:00 am - echo cardiogram
Monday, February 28 11:00 am - PET scan
Thursday, March 3 8:45 am - first round of chemo.  Thank goodness!    I'm ready to get started.

It is amazing what stress can do to a person.   This morning, I just lost it.   I figure I get a pass, but still.  I need to work on my larger blog entries for therapy.   There are stresses involved here that I will try to document for posterity.
Sorry for the short post, I'm a bit out of sorts today.

Don't worry though, we are still very optimistic and positive.   We will beat this together.

Some clarity

The schedule is coming into focus.   We know that my port will definitely be installed next week.   Maybe.   I may know on Monday exactly when this is to take place.  I'll let you know.   I think they are waiting on parts or cables or something.  The ultrasound of my heart, or echo cardiogram, is scheduled for Monday, February 28th at 9.   The PET scan is scheduled for Monday February 28th at 11.   If the port gets installed next week, then it is possible that my first chemo treatment will be March 2.  Should be a fun time.

I'm looking at the patient instructions for the PET scan, and a diet is listed with the following warning:

PLEASE ADHERE TO THIS DIET

Bold and underlined.   It must be important.  If I do not adhere to the diet, Very Bad Things(tm) may happen, I suppose.   But looking at the diet, what do I see?   You guessed it.  Broccoli. 

Don't be afraid to post comments, I appreciate any words of support.   Also, if there is something about my journey you would like me to comment on, please let me know.   I have a post in the works on how faith, family, and friends play a major part in all of this, so stay tuned!

Unintended consequences

I've gotten some feedback on my bone marrow biopsy post, and I need to come clean.   Some of you read it, and were horrified about what happened.   So, I need to give you the straight scoop:   I hate broccoli.   What does that have to do with it? 
Last year, a friend of mine had a bone marrow biopsy.   I knew what to expect.   I had seen my own son get one when he was 2 years old.   I knew it was going to be unpleasant.   But, when we were talking to the oncologist, my wife asked if I needed to change my diet to include more fresh vegetables, like broccoli.   I was far more concerned about the prospect of a life full of broccoli every meal than I was of the bone marrow biopsy. 
Have no doubt here, the biopsy hurt.   It was an intense 5 minutes.   Only 5 minutes.   It took me longer to write about it than to actually go through it.   I've had far worse pain in my life than that.   I had my appendix flare up a couple of years ago that caused intense agonizing pain for hours.   The emergency room gave me TWO shots of dilaudid (which is very powerful pain medicine), and I could still feel it.   The biopsy was a walk in the park compared to that.
I think that it was funnier to write than it was to read because there was no context.   I met Malena in the examination room after the procedure all smiles.   We took a 3 mile walk in the afternoon.   I was fine.  I always try to go for a laugh, and find the humor in things.   Sometimes I miss.

In the future, I will try to be more sensitive when I write on matters involving my pain.   I did not mean for anyone to be afraid for me.   I am sorry if I caused anyone to be overly concerned or horrified.   I need you to laugh with me through this.

Now back to the fight!

Sightseeing at the oncologist's office...

We went to see my oncologist today.   We were very encouraged by some of the things she said.   The word 'curable' was used a few times.    So was 'if'.    We are still guarded, and know that this will be a fight.   The doctor sat in the examination room and spoke with us for at least 30 minutes.   That surprised me.   She had to move into a larger area because she has so many patients, yet took that amount of time just to chat with us.   It wasn't all history gathering stuff - she answered all of our questions, gave advice, and made us feel really good about our situation.   That is so much different from seeing a general practioner, where they try to move people through as quickly as possible.  It was very nice.

To some of the finer points of the visit:  certain procedures are being scheduled.   We should hear from my oncologist's office tomorrow with details and will let you know, but I have to have a PET scan.   Surprisingly, it has nothing to do with my dogs.   A PET scan is where they pump you up with a special formula (it takes an hour to do so, I believe), and send you through an MRI looking gizmo.   The liquid hunts down cancer cells and pools there, and will show up in the gizmo, as long as the growth is at least 1 centimeter.   That sounds fairly painless.  

Next is an ultrasound for my heart.   One of the medicines in the chemo treatment, R-CHOP, is kind of tough on the ticker.   An ultrasound will make sure that my heart can take the treatment.   Another painless treatment.

Then, I need to have a port installed.   A port will allow the chemo to be more easily administered, and will allow me to download pictures faster.  This will be installed in my chest, and  I'll have to go under the knife again for this.   More stitches.

These things should happen early next week, with the ultrasound and the PET scan happening on the same day.  

Staging.   This is where the doctors determine how widespread the cancer is.    We are all hopeful that we caught this early since I have no other symptoms than the knot that was on my neck.   But the PET scan and bone marrow biopsy will let us know for sure.

I know what you are thinking.   He didn't mention a bone marrow biopsy.   Sure I did.   Look 4 sentences back and you'll see it right there.   Before my oncologist walked out of the examination room, she mentioned that I needed a bone marrow biopsy.   Today.   Now.   I had heard others speak of it, but there is nothing like going through it yourself.   The nurse took me to another room, which was good because I didn't want my wife to see me go through it.   I saw my second son have something very similar to this when he was 2 and had a bout with ITP (google it.   It can be nasty, but he is ok now) and I knew it would not be pleasant.  Spoilers are ahead, so if you don't want to know, its best to skip forward. 
I had to pull my pants down enough to expose my hip bone, and lie stomach down on a hospital bed.    The doctor then administered a local anesthetic.   This is the first point of the procedure that needs to be clarified.  The greek anesthesia means “want of feeling,” and the local would indicate that nerves in the localized area would "want of feeling," or be asleep.   That is what I expected.   However, I think the hospital staff used a different anesthesia, perhaps from a german root, which means "amplification of pain," and the local would indicate everywhere within the same zip code.  She shot the anesthesia, or molten lava,  into my hip and I almost hit the ceiling.    Pain from the 'local' area spread down my right leg to my knee and persisted for what seemed an hour, but was only a couple of  minutes.  That pain stopped only when she inserted a needle into my hip bone.   Insert gives the impression of a smooth, even gliding application of the needle.   Nothing could be further from the truth.   I think she had to use a hammer to drive it into the bone.   Interesting point:  local anesthesia only affects nerves in the skin and muscle tissue.  NOT BONE.   So yes, that hurt.   Then she had to draw out the marrow.   Holy cow, I think that I felt my foot draw up from the suction.   I can still hear the sucking sound that was made drawing out the marrow, but, in all honesty, it could have just been me trying to get oxygen to deal with the pain.   Everything on me was clenched.   The nurses were asking me questions the whole time, presumably to take my mind off of the procedure.  I tried to answer, but I don't know if I was speaking any known language.   She removed the needle, which was mildly painful, like having a finger snatched off of your hand, and started to retrieve bone.   Actual bone.   I think she used a hole-saw for this, the kind you would use to cut a hole in a door to install a knob.   I experienced brand new levels of pain here, and continued to speak in my newly acquired tongue.   The sample was then place into some kind of sample tray, femur sized, and I was given a band aid.   A band aid.  Really?   For that?   I needed some kind of butt sling.   After the bleeding stopped, and I returned to my native language, I was taken back to the room with my wife.   The nurse came back almost immediately with scheduling instructions to give to the scheduling assistant.   The nurse must have had a sick sense of humor, because she briskly walked to the door down the hall to point us toward the assistant.   I was not at race speed.   I finally got to the door, and she finished her lunch, and we were on our way.   The assistant will call us tomorrow with the details of the procedures we have to do next.

It is possible that I will start chemo next week, but most likely it will be the week after.   I'm ready now.  Let's go.   Hear me, cancer?   It's on!

What's happening with Mike?

I know this question has been asked more than once lately.   The short answer is that I have cancer.  On January 21st, I was camping with our Boy Scout troop, and noticed a lump on the side of my neck.    I didn't have a real mirror, so I didn't get a good look at it until I got home on Sunday, January 23rd.   I made an appointment with my doctor, and saw her on January 28th.   She ran several blood tests, and a white count.   The tests, including mono, came back negative and my white count was normal.    This is when I knew something was up, and cancer was a real possibility.    My doctor prescribed  a one week course of antibiotics and scheduled my followup for February 4th.  There was no reduction in the size of the lump that week, and my doctor scheduled me on the spot to get a fine needle aspiration from a team of oncology surgeons at a hospital nearby.

A fine needle aspiration is medical terminology for repeated stabbings into the area of concern with a hypodermic needle.   For reasons I don't understand, cells cannot be drawn out with a syringe.   Multiple stabbings are necessary to fill the needle.   It was very Spanish Inquisition.  I was not expecting that.   My wife was watching the whole procedure on a computer screen that was connected to an ultrasound.   She determined that the lump was a boy.

The results of the biopsy came back on Tuesday, February 8th.   Lymphoma.    I was immediately scheduled for a right cervical lymph node removal on Thursday, February 10th.   I was concerned at this point, because I am a man, and don't have those parts.    Then I was told that cervical means 'neck'.   Oh.    The surgery went well, although the surgeon had to cut through muscle to get to the lymph node and he bumped a nerve.  The results of that were a very tender neck, and no feeling on the outer edge of, and directly behind, my right ear.   I don't go touching things with those parts anyway, so no big loss.   The surgeon took my lymph node to pathology, and told me he would get back with me on Tuesday, February 15 with the type of lymphoma I had. 

We (my wife and I) spoke with the surgeon on Tuesday.   For all of you who guessed diffuse large b-cell lymphoma, you win a prize.   I'll get it to you promptly in March, 2157.   Tomorrow is February 17, and we are scheduled to see an oncologist.   I hope that I know more about this cancer after speaking with her. 

As you can imagine, things have been quite stressful.   Lots of ups and downs, and more than a few tears.   I am encouraged by what little I do know about this cancer, in that I have a fighting chance.   A really good fighting chance at that.   When I was a kid, lymphoma was a death sentence.   But, with the exception of fine needle aspirations, medicine has improved tremendously.    I'm gonna beat this.