Cliphoma

(since ‘Pages’ like this one don’t send out updates to those following the blog, I’ve flip-flopped back to creating blog posts rather than relying solely on updating this diary)

Tu 7/31: best day in weeks – didn’t feel fatigued or overwhelmed by pain all day long.  Human again…hope this holds out through next chemo session.

Mon 7/30: off to Duarte…

Sun 7/29: turned the corner and getting back to “new normal”.  Nice to get out, have some visitors.

Fri-Sat 7/27-28: blah. Thought I was really lucky and going to just have smooth sailing until cycle 2, but turned out I needed to just rest (and take more pain pills).  Thanks for the Olympics!

Thu 7/26: great day – see blog post

Wed 7/25 (cycle 1, day 4): The beat goes on – just trying to figure out my new routine.  Once I can predict my side-effect cycles, I can make some more plans.  The aches/pains are tolerable with some pain meds, but they keep me from driving, so I test whether I can stop taking them every day or two.  Getting close.  In the meantime, starting down the second opinion path with City of Hope – always good to have a second set of experts go over the data and see if they come up with something different.

Tue 7/24: Not much to report…blood numbers still moving in the right direction.  Nice visits and calls from fam/friends yesterday – kind of like a party house around here.  Got a shot of Neulasta yesterday – a magical product from our local science wonks at Amgen that boosts white blood cell production to offset the damage that the lymphoma and chemo do to my immune system.  The downside: just some flu-like symptoms.  Can live with that…

Mon 7/23: home and feeling about as good as I could expect at this point.  Update on diagnosis & treatment from yesterday’s pow-wow can be found here

Sun 7/22 Noon Update: I’m going home! Doc stopped by, all the numbers look good.  My only current side-effect: HICCUPS! Yes, it is a known side effect of one of the chemo drugs.  Mostly annoying, but with the damaged ribs also a little painful.  But, of course, there’s yet another medicine for that…anyway, I’ll be home!  Feel free to call, plan a visit, etc.  Remember, the blog is to offload trivia so we can just hang.

Su 7/22: by last night, my first full dose of CHOP-R had been delivered through the magic power port. That is 3 days ahead of the original plan, which wouldn’t have been fully delivered until Tues.  Doctor and staff have been great. Having Tracey by my side makes it like being home.  All the kids came by, too.  Very nice.  No real side effects/reactions yet, which is good, but the tough stuff usually comes around day 4 and as things accumulate over multiple rounds. Really glad we went this way – by doing it inpatient, we could go “continuous” instead of breaking up over office hours.  I could get more fluids (through the magic port) and monitor things with some more blood counts.  Overall, seems like a good thing. Even if not warranted for all rounds, glad I did it for round 1.  Makes me wonder how many decisions are made for insurance and expediency vs. getting the “ultimate treatment”.

Nurse Elia Checking In!

Sa 7/21: Let the games begin, starting CHOP-R this morning.  Die, Lymphoma, Die!  Nice having Tracey by my side…

The chemo is so toxic, the nurses have to be careful not to come in contact…it can damage flesh.

The first of the toxic chemicals being dripped into my port…die, lymphoma, DIE!

Fr 7/20: After reviewing diagnosis and treatment with doctor, decided to start immediately instead of Monday, which meant checking into hospital since office isn’t open over weekend.

Th 7/19: Today is “Port Installation Day” – short outpatient surgical procedure to install a device near my left shoulder that makes it easy to get stuff into and out of my blood stream right above the heart.  Today is the day Cliff becomes a science project.  Yes, it is kind of weird. —– Well, it’s done – check it out (WARNING: SQUEAMISH FOLKS USE DISCRETION):

recognize this?

OK, it’s not exactly like that.

  Still red, but will clear up and be nearly invisible.  They say this is the safest most effective way to get the stuff they need to in/out.  The chemo cocktail is so toxic that if it leaks into/onto your tissue (rather than going into your blood) it can damage it permanently!

We 7/18: Really, in these days leading up to treatment, my challenges are just managing pain and “thought spirals”. The pain that started with my ribs on the left-rear side moves around and changes by the hour.  At first, I tried to only take the pain relievers to sleep at night, but lately I’ve been feeling like life is better with the pain pills, so why fight it. The pain is just an impossible-to-ignore reminder that there is something foreign in my body that is spreading…let the chemo begin!