Rnd 1: Wk 2-3: Mostly Human

     The last part of cycle week two was been so busy, it’s difficult to gauge how I was for part of it.  Early on, I was still very much struggling some mouth and taste issues, and looking back, I know my energy level wasn’t quite normal. As much as I stayed active by cleaning, doing laundry, and wrapping presents, by last Wednesday, I could basically only sleep on and off all day.  Of course, this isn’t helped by the fact that I can’t often sleep past 5 (and sometimes 4).
     While cancer will not win the war, it did declare some victories in battle. I know the usual tradition of reading with my girls by the Christmas tree before bed each night was one of the casualties of being too tired or too anxious in the evening. I was too nauseas when we went out to look at Christmas lights to get our usual Starbucks. But come Christmas Day, all presents were wrapped, Santa still came, and we had our usual awesome Christmas Eve and Day spent with family with barely a hitch.
     Of course, the hitch had been coming on for a couple days. We’ve been noticing wisps of my hair on my face or on my iPad screen, and more in my brush and on the bathroom counter, but by Christmas Eve, it was starting to come out when I ran my hand through my hair.  The loss of my hair had been a source of a great deal of anxiety, and looking up anything about timing and how to go about it didn’t help: it was likely to start now to my next chemo and there was a focus on women cancer warriors as if men don’t have some aspect of self-image connected to their hair too.  I as born with a full head of hair, and from my 70s/80s bowl haircut to my first salon cut and figuring out what I wanted it to look like (yes, I even tried a perm in the early 90s) to settling into the style I think suited me since college, my hair has been constant to the point that I am about the only man in my family who still had all of his hair after 30.

Hair-filled sink.

     I made it through Christmas Day with most of my hair intact, though it was starting to come out in clumps at a times.  Rebekah and I decided nothing should be done at that point so Christmas itself didn’t get that association.  But then yesterday, it was getting worse.  The bathroom sink was a horrible mess after I brushed my hair then ran my fingers through to get all the loose hair out.

Thinning from hair loss.

     Throughout the day, it just made me more anxious as I pulled more and more hair out, though it was just thinner more than anything. Pulling it out of my soup at lunch was the last straw.  This was a battle that I couldn’t win, but I sure as hell could call it on my terms.  With clippers and razor never shaved my head, and this was so strange to be doing. I did one side then handed over the clippers for Rebekah to get the back. For some reason, it was important to me to do the front as large swatches of my hair, still mostly brown, fell around me, clumps at my feet as I fought from getting any in my mouth, which I truly hate.
fully charged, I waited for Rebekah to get home for moral support and to help where I missed. Once she was here, I went up to the bathroom, took off my shirt, and got in our shower while Rebekah stood at the ready. It was more surreal than tearful when I took the first stroke with the clippers.  I have
     Finally, it was time to do the front.  In a strange moment of levity, I actually made a mohawk

Momentary mowhawk.

before taking off the rest.  Then it was time to lather up with shaving butter and use the electric razor.  At that point, I was just focused on getting it done, and it took about an hour in all.
   I’m hoping that my new and temporary look is more Captain Picard from Star Trek: The Next Generation than Dr. Evil from Austin Powers.  But the strangest part is that it’s actually a relief to have it done. It’s going to take some getting used to, and it made my oldest cry to see me, but it’s no longer going to be causing me the anxiety of waiting or nightmares of waking with a pile of hair on my pillow.  Chemo may be taking my hair, but I controlled when it happened.  Now I have the look of a cancer warrior.
    And the irony of all this is that as I enter the third and final week of the cycle (it’s exactly one week from today until my next round of chemo), I’m feeling back to about 90+% myself, so mostly normal and human again. My energy is back up (still struggling to sleep past 5), my taste is mostly back to normal, and the nausea has subsided. I’m truly feeling like myself as much as I don’t look like myself (well, at least a bald version of myself).
    So here’s to a great New Year’s celebration that sets me up strong for the next volley against Mt. Lymphoma.

Rnd 1: Wk 2

This week has actually been relatively calm, though yesterday marked the one month anniversary of my first appointment with my oncologist.  On Sunday, though, my mouth began to ache, not like a burn or a sore but like a muscle in the way it was just a diffuse ache on the entire inside of my mouth. I used the salt and baking soda water mix like a mad man, but it just wasn’t helping.  On Monday, I blew through like six or eight ice pops just for some relief.  The other side has been things tasting muted or overly sweet.  I have learned that eating something on the sweet side before eating something savory helps the flavors of the savory come back through.  Foods that include the contrast naturally (like sweet barbecue sauce on meat) have been great.  But it all still occasionally tastes like I’m sucking on a penny.

You can see the PowerPort as well as the
catheter that goes into my vein.

The port is still a very strange, foreign thing under my skin.  It's healed nicely, so for the most part, I forget I even have it.  But then there are the other times when I forget it's there and my hand brushes it or someone hugs me on that side, and it gives a twinge that reminds me that it's there.  What's worse is you can see the catheter that goes up into my jugular vein, which has been the cause of many cringes from Rebekah in looking at.  I actually now have to carry a card that says I have it.  I know I was handed stuff the day of the surgery, but I didn't realize what it was until late last week, but it's in case I'm ever being worked on (which will hopefully NOT happen) so they know what it is.  It's also in case we fly so they know what the foreign body is under my skin.

The follow-up appointment and blood draw was on Tuesday, 12/18.  We met with a PA (Lisa) because my doctor was declared sick and was going home.  A cancer center seems like the last place for a sick employee to ever be, even (especially?) if it is the specialist.  They have their own in-house lab, so they took my blood then sent me back to the waiting room where Rebekah and I waited just a little longer to be called back.

My weight is holding, which is great.  After the nurse took the usual vitals (my blood pressure was a bit high for me, but there’s a new level of anxiety at which I live), we met the other PA, Lisa, whom we hadn’t met before.  I started with my questions, which led to her reiterating for me that we truly caught this early and that it seems mostly contained to my right chest/arm area, and, yes, it is curable.  I was surprised that when we get it cleared up as confirmed by a PET scan after the last round, they actually declare it cured at that point, not just remission.  We'll have to monitor me for the rest of my life, but that first five years will be key.  Lisa brought up the PET scan, and I really wanted to see the images, but I decided that's something to ask of Dr. Barnett the next time I see him...I'm just really curious.  She told me that I need to talk to the doctor more specifically about the longterm considerations that the over expressed c-MYC oncogene might mean and how we might mitigate that, but she also assured me that it won't stop us from curing the lymphoma.

Overall, my health is holding well.  She did say that it's possible the hiccups were from the amount of steroids to stop the allergic reaction to the rituxan, but it may also have been from the steroids in general, in which case I may experience them again.  Great.  I guess we'll find out in a couple weeks as my next appointment is on January 2 for a blood draw with the next chemo round following immediately on January 3.  School returns on January 7, so I doubt I'll be starting the semester two, but we'll see.

"Magic Rx Mouthwash"

I did tell Lisa about my mouth issues, so she did call me out a prescription for something I'd seen
mentioned online: Magic Rx Mouthwash.  It's supposed to stop the reactions in the mouth and calm the soreness.  Of course, that was Tuesday, and King Soopers still hadn't called yesterday, Thursday, so I called them and they were clearly in a "Crap, we forgot to mix it!" mode.  It was ready last night, but I wasn't going to rush out to get it...they failed to get it to me when I was in the most discomfort.  Now it just feels like I ate something a little too hot.  Of course, as soon as I got it today and finished lunch, I did try it.  They aren't kidding: this stuff numbs your mouth!  Where was this with all my throat infections as a kid?  My goodness, my mouth is totally numb, and it will be very handy if/when it hurts again.

I didn't want to be eating my beard

Watching my beard barely reach a one-day growth after shaving on Sunday until this morning has been difficult because it shows my hair is not growing at its normal rate (I've been shaving daily since I was 12), so I'm assuming that it's a first sign that it's going to fall out sooner rather than later.  It's a fact that I'm trying to steel myself for, but I admit to the vanity of being the only man in my family over 40 (heck, over 30) with all his hair, so this really bothers me to think about.  Waking up in a pile of hair is the thing of nightmares, and there's a level of anxiety to the waiting for it.  Thank God for the kindness of nice and soft hats of various styles and colors I've been so generously given.  I did get tired of waiting for my beard to fall out and shaved it this morning as well as my face (I'm guessing for the last time until after treatment), but it's not quite so traumatizing since I've been shaving it all off every summer for the past several years.  Having beard whiskers fall off in my food wasn't appealing, so that's the other factor.  One small step at a time, I suppose.

Chemo: Rnd 1

Port installed...yay?

So, Monday saw the installation of my chemo port, which is just below my skin below my collarbone and connects a catheter directly to my jugular vein.  With six rounds, this makes administering the chemotherapy drugs much easier. I was awake during the procedure, but very sedated. The nurse would occasionally check on me, and I would assure her as best I could from my vantage point that it wasn’t as bad as the previous week’s bone marrow aspiration and biopsy.

Rituxan reaction

With port in place, I checked into the Rocky Mountain Cancer Center day chemo room on Tuesday where I officially began my curative treatment.  As it’s an aggressive form, the doctor is hitting it hard and fast. With steroids, Benadryl, and saline pushed through the port, I began on the “R” of “R-CHOP,” which is Rituxan and very caustic as an artificial antibody that the body often rejects, so they start out slowly.  All seemed well, but at about 125ml/hour, my ear started to itch, and when my wife looked at me, I had a rash down my cheeks like red sideburns. She called the nurses over, who discontinued the drug, checked my vitals, pushed steroids, Benadryl, and saline as my throat started to itch.  Once under control, I had to wait 30 minutes before we started again, but way down on the drip rate. All seemed well, and then at about 100ml/hour, my heart began racing and I

Chilling for Chemo, Day 2

felt flush. They had to repeat the earlier protocol, but it was already too late to resume after the rest period.  Resigned, I received the “CHO” parts and sent home with “P” being oral prednisone at home after 8.5 hours and an appointment on Wednesday to finish the Rituxan—the hope was to get it up to 400ml/hour otherwise it was going to be a 9-hour day.

Neulasta auto injector
of bone pain.

With everything else assaulting my immune system, Wednesday did go much better, and we got the Rituxan in after about 5 hours.  After which, a Neulasta pod was stuck to me (like the commercials...it injects into you automatically after 24 hours to stimulate white cell production).  A very unexpected side effect of the copious steroids used to keep the deadly allergic reaction at bay were deep, incessant, galling hiccups that lasted for three days and two different prescriptions to get them taken care of, which did cause some extreme dizziness and a fall in the night (I’m okay).  The Neulasta has a wonderful side effect of deep bone pain, the cost of speeding up the white cell production. I took my last dose of prednisone last night, so now the first volley has been sent to crumble some of that mountain.

I have a check up on Tuesday to review my blood counts, but the next chemo appointment isn’t until January 3.  I do still have all my hair, but I’m told not to count on it to last past the second treatment, if it makes it that far.

The beginning

The best place to start is at the beginning of this journey we now find ourselves on.  And I say "we" because there are so many people who are joining me, supporting me, and rooting me on, not the least of whom are my wife and family as well as innumerable wonderful people in my life.  Cancer is not something that just affects the person with it.

At the end of August, I felt a lump on the inside of my right arm. I immediately got in to see my GP, but he didn't like the way it felt so ordered an MRI, which I did about a week later. The results of the MRI were inconclusive, but they called it a "deep mass nerve sheath tumor," so I got in to see an orthopedic surgeon, who diagnosed a schwannoma, a normally benign tumor.

On November 6, I had the tumor surgically removed under general anesthetic. The surgery to remove the tumor went well and has healed nicely. I was told that if I didn't hear from them by Friday, 11/10, that no news was good news, so we spent the weekend feeling in the clear.

On Wednesday, 11/14, Rebekah had to go to work, but I was feeling pretty well from healing, so I spent the morning just resting in the house with just me and the dog. Then I got a call from my surgeon's office. Thinking that they were just confirming my appointment to remove the stitches, I answered just as Rebekah instant messaged me that she'd missed a call from them.

My surgeon greeted me, and my heart stopped. I heard him say something along the line of the pathology was back and that there was no easy way to say it but it looked liked cancer, likely lymphoma, so he'd already called an oncologist, and they'd be calling to set up an appointment that day for as soon as they could get me in. I remember hanging up the phone and turning back to the TV then slowly beginning to sob and scream at the ceiling. I'd messaged Rebekah that it was cancer, so as soon as I was able to sort of speak again, I called her and told her what the surgeon had said and that I needed her as soon as she could possibly get home. She wrapped up as quickly as she could to head home from Boulder. In the meantime, I called my dad to come over because I didn't want to be alone.

That Friday, I got the stitches out and was given the initial pathology from the surgeon, who had never been the diagnosing physician before and was clearly very shaken (I'd feel really badly for him except, you know, cancer). He clarified that it turned out that the tumor he removed was not a schwannoma but a lymph node.

I had my initial consultation with my oncologist on 11/19 where we went over what we had and knew then, asking questions and beginning one of what's going to be too many blood draws. At this point, the diagnosis is Diffuse Large B-Cell Non-Hodgkin's Lymphoma, though some finalizing of the exact diagnosis will come this Tuesday. Lymphoma is a treatable and usually curable cancer.

Other than many panic attacks, I am well and not actually experiencing any symptoms from the lymphoma, so the oncologist believes that we found it early. I had a bone marrow aspiration and biopsy done last Tuesday to make sure it hasn't invaded my bone marrow, and I did a PET/CT scan on Thursday to make sure it hasn't spread to any other part of my body, all part of staging it.

I will be meeting with my oncologist on December 4 to review the results of the tests and begin the plan of treatment, though it looks very likely that I will begin chemotherapy the week of December 10.

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