Frank Notes

Although I am clearly relieved with the news from Friday, I’m beginning to get more and more frustrated.  In order for me to get the last round of chemo (which is a really rough round), my platelets need to be at least 100,000 (100,000 of what I don’t know, I just know the magic number!).

Three weeks ago they were at 20,000.

A week later they were at 30,000.

Last week they were at 50,000.

And yesterday they were at 56,000.

So my last chemo has been put off for three weeks now.

If I could just get on with my life, I wouldn’t have a problem with postponing it.  But the new hair on my head that’s poking out all over making me look like a pin cushion?  It’s going to thin and likely fall out again.

The eyebrows that are just starting to fill in above my eyes?  Same thing.

Even the strength and endurance I’ve built up (going up the stairs used to wind me something fierce) are going to be depleted once I finish the last round.

And then there is the PICC line that is still sticking out of my arm, preventing me from participating in Oliver’s swim classes.  That can’t get removed until the end of the last round.

At this point, every week the last round is postponed is one less week of recuperation I was expecting before I go back to work in January.

:::deep cleansing breath:::

Yesterday I was so tired of putting my life on hold and of sitting around for fear of overdoing it, that I took Oliver to the YMCA, left him in the capable hands of the care providers, and did 30 minutes on the elliptical trainer.

So I guess that’s those are the lessons: Don’t stop living.  Don’t put my life on hold.  Try to do as much as I can without overdoing.

I just got off the phone from listening to the message from my oncologist’s assistant (despite having my phone with me since I woke up, I must not have felt it vibrate!).

I was hoping by the tone of her voice that she was calling with good news.

And she was!

She said the preliminary results do not show any recurring lymphoma!

In my follow-up phone call, she said the white blood count is likely low from my last chemo and the platelets are likely taking longer to be produced because my bone marrow is taking longer to regenerate.

WHEW!

So the plan now is to wait for my white blood count to increase (which it likely should before the end of the weekend because I had an injection yesterday to help) and to wait for my platelets to go up.

Thank you for all of your kind comments yesterday.  They really helped to boost my spirits and to distract me from my own mind.

As of two days ago, that is exactly where I wanted to be: in a fetal position, in a darkened room, preferably drugged up on pain killers or sleeping pills or really anything as long as it “took me away” and made me numb to what is going on.

On Tuesday I got a call from my oncologist’s office.  My most recent blood tests showed that my platelets, although slightly higher, were not recovering as fast as they expected.  Two weeks ago they were at 20K, a week ago 30K, and as of Tuesday they were only at 50K.  My oncologist expected them to have been fully recuperated by now.

More worrisome is that my white blood count was going down.  Like really down.

So my oncologist’s assistant explained that the doctor wanted to take a bone marrow and bone biopsy to determine if their was cancer in my bone marrow.

Initially she offered me a Friday morning appointment but after explaining to her how awful that this was going to be to first have to wait for the appointment and then to have to wait to get results, the doctor was able to get me in early the next day.

Needless to say, it was a sleepless, anxious night.

I was at the clinic bright and early the next morning (a 15-minute drive that took an hour in LA morning traffic) for the biopsies.

My oncologist explained the spectrum of his suspicions:

• there could be cancer in my bone marrow that wasn’t detected in early August (because I wouldn’t let them do the biopsy then), which would mean a different and stronger course of chemo to combat it, or
• my bone marrow is taking longer to recuperate due to the heavy doses of chemo I’ve been getting and we simply have to wait for it to heal itself.

Only the former explained why my white blood count would be going down.

Despite this, my doctor told me to stay positive while I wait for the preliminary results to come back tomorrow (Friday) and most of the rest of the results to come back next week some time.

As of yesterday I wasn’t doing such a good job at staying positive.  Most of the day was spent in a depressed stupor as I thought about all the people I have known who have died very young from cancer. When I was in grade school I remember the mother of one of my classmates dying from cancer, leaving him and his siblings under the care of their father (who soon remarried).  My sister-in-law who died at 41 years of age after battling first breast and then bone cancer.  There are others, too many unfortunately.

My mind dwelled on how it would “feel” to die and what would become of my family after I died.  Mostly I wondered if my son would remember me as he was growing up.  Actually I wondered if anyone would really remember for long after I was gone.  Then I remembered that activity we did in school where we had to create our own saying (I forget the word) for our gravestones.

Interspersed in there were thoughts about the various details of dying: What happens to my credit card and student loan debt?  How do these companies even find out I’m dead?  Where will I be buried?  Who will come to my funeral?  How would my blog readers know that I died?

Mostly I thought about how tired I am of all of this, of the medications, and the hospitalizations, and the blood draws, and the worrying.  I wish there was some sort of reset, like on a video game.

Unfortunately our lives don’t come with that luxury.  There isn’t anyone or any thing that can take this away for me or give me any guarantees.

Thankfully I have an amazing Partner who, although just as tired of all this as I am, is right there beside me to encourage me and push me.  And of course there is our son, who helps me to stay focused on the moment and who puts a smile on my face and even makes me laugh.

So today is a new day and I’m not in a fetal position.  I still have all that, and more, on my mind, but I am trying to live right now and fight the urge to lay down in a dark room, knees pulled into my chest.