Rnd 3: Wk 1

Trying to get comfy.

It’s amazing the things you learn to detest.  Cancer is a place to start and is more than earning of loathing.  I hate all the ways it changes my life from the lack of hair and of normal routines to the overall disruption to my family.  I’ve also learned I hate the question, “So, what’s your prognosis?”  It’s innocent enough until it starts to feel like, “So, yeah, you’ve got this High-Grade Large B-Cell Non-Hodgkin’s Lymphoma, Not Otherwise Specified.  How long do you have to live?”  I get it: cancer is scary, and talking to someone fighting it leaves little else to think about, but asking in a veiled way if it’s going to kill me isn’t entirely comforting.  My prognosis, by the way, remains excellent and the treatment is curative with the express purpose of “over-treating” it in order to keep it from coming back.

Luke IV-walker and
R2-Infuser

I have a friend and colleague from Silver Creek who, having been through his own scare of an unknown tumor, came to my classroom early on in the process to remind me that through whatever might be in my path (and at the time, was supposed to be a benign tumor), I needed to keep my focus on those happy moments, those moments to hold onto when things get difficult.  I admit, that was harder than expected, but I kept that mantra with me through the holidays, and it’s what got me out for a 16-mile bike ride the weekend before round 3.  This same friend also made another astute observation: when life gives you a sh*t sandwich, it’s okay to complain about the taste.

So here it is: the hiccups for four straight days is something devised by the demons of hell to torture me. I know I am so lucky that I caught this disease early and am treating it before any symptoms, but my God, I hiccup through what little sleep I get, and to be plagued by such a banal bodily function.  My throat hurts, my back hurts, and my stomach hurts.  And we won't even go into the horrors chemo visits upon the GI tract in general (basically an overwhelming feeling of being filled from stem to stern).  And I hate, hate, hate, hate the prednisone (which may be contributing to these hiccups).  Between it all, I've gotten less than ten hours of sleep over the past three nights.  I did manage to mitigate the effects of the prednisone, so the crash wasn't quite as bad on Tuesday, but it's still a horrific experience, all of which starts with having them plug toxic medicines into an implant in my chest that get pumped throughout through my jugular vein and then immediately into my heart and body.

**Ice pops during doxorubicin

Being grateful sometimes only keeps me up so far when, in the end, it's still a battle against cancer.  That landed me into one of my worst cycles of panic attacks and depression that I've had since the initial diagnosis at the end of the first week after round 2.  I was unable to hold onto the light of the word "cure" but got lost on the word "recurrence."  We ended up going to the social worker as a couple and setting up the girls with a psychologist.  As hard as this is all in the middle of it, I think our mental and emotional healing will have a long way to go with PTSD almost a given treatment to come as scan-xiety becomes the thing.

For the good news to end on: my doctor continues to stress that this is curable and that we caught it so early.  We have high hopes and expectations of what the CT Scan will show next Thursday, 2/7, and confirmation of continued health from the echocardiogram.  In the meantime, another blood test tomorrow to check my nadir levels...and ask about these damn hiccups!



A sample of my pain, even during napping:

**The doxorubicin can enter the mouth through the blood vessels and pores and make ulcers in your mouth, so ice chips or ice pops are used to constrict the blood vessels enough to keep that from happening.

Rnd 2: Week 1.5

   The prednisone crashed me hard, physically and emotionally, last week, making it a struggle to stay at all positive in this fight.  I know too much time on my hands to think and to Google too many things didn’t help, which is so frustrating because I know how important keeping a positive attitude is.  I also know that I’m not just a statistic.  I actually got out my bike trainer in my office and made it onto it last Thursday.  It wasn’t long (about 10 minutes), but it felt good, but then it was followed by my emotional crash that afternoon.  These days are all so long and drawn out sometimes.  It has felt like I'm just waiting for the next appointment or the next thing to happen to me (like the hair loss and other symptoms).
   This week has meant staying more positive, keeping what little hair I have shaved so I don’t check constantly for more to have fallen out, and finding the positive in having time to read and to write. This week has had nice enough weather that I actually got in a couple short bike rides over the past couple days (about 4-5 miles) with hopes of repeating that a couple more times before the weather turns this weekend.  At this point, it’s not about building muscle but maintaining it and keeping active while also clearing my head.
   My nadir visit last Friday also went well with additional reassurances from the PA that things are good in my blood work and that the expectation is that this will be cured.  Looking at my blood test results online, though, leads to more questions when I see Dr. Barnett before my next chemo appointment next Thursday, specifically with the lymphocyte and monocyte counts (should they be going up or down?) and my white cell counts (are they high because of the Neulasta?).  It’s probably all fine and me just finding new things to worry about...
   Overall, this week (you know, all two days of it so far, though it's more marked by being week two from Thursday since the last chemo) is going well, all things considered.  I'm staying active around the house along with the bike rides, so the fatigue doesn't seem to be quite so debilitating this week--a lot of research I read before I banned myself from researching suggests that staying physically active during chemo can counter some of the fatigue and may also help in bringing down the mountain.
   Otherwise, it's just about letting the chemo drugs work in my system until my next chemo appointment in just over a week.  After which, we'll schedule another CT scan with the expectation that the cancer has shrunk and the hope that it's possibly gone, though even if gone, I still have to finish all six rounds in order to make sure all cancer is completely gone.  I'll also have to do another echocardiogram since one of the drugs has the potential side effect of harming the heart muscle.

Chemo: Round 2

Part of the big news of the week was getting through the second round of chemotherapy on January 3.  Quite the way to ring in the new year, but at least I got through Christmas and then New Year's Eve feeling mostly myself.  So on January 2, I met with my doctor for the pre-chemo blood test, which they perform most of right there while I'm waiting to see the doctor, who then reported that my numbers are all good and that my body is responding well to the chemo.  He remains upbeat and positive that this is all curative and that we're going to get it all, given that it's very localized and caught very early with only one node in my armpit clearly glowing in in the PET scan.  Dr. Barnett spent quite a bit of time with me, again letting me ask questions and clarify concerns then checking my lungs and heart.  Given that I've responded relatively well, Dr. Barnett said that each round will likely go the same way with the exception of the fatigue being cumulative as well as the beating my immune system is taking.

So then the chemo was the next day with most of the original anxieties gone (what the heck is it exactly?) and some whole new ones (will I react to the rituxan, and what about those hiccups?).  We got there

"Pole" Dameron and BB-8!

bright and early and were sent back, and I was greeted by the nurses, and then I sat.  Apparently, my nurse was one who rotates through the different Rocky Mountain Cancer Centers, and so she didn't recognize me, so I sat for almost 30 minutes before she finally called my name.  So next time, I'll sign in even if I'm greeted.

Because of my initial reactions to the rituxan, I was started with an IV bag of Benadryl.  Honestly, I feel badly for Rebekah because I basically faded in and out of consciousness for the next three hours.  On the bright side, I didn't react to the rituxan, though it was still almost 7 hours to get it done. I did have my fellow warriors to help me through the day: "Pole" Dameron and BB-8, and I spent my time with my earphones listening to a book in audio to relax.  When it was time for the doxorubicin (somehow the "H" of R-CHOP and lovingly nicknamed "the red devil"), the nurse got it ready as a push into the port, but she didn't give me my popsicle to suck on while it goes in, so Rebekah got it (ended up with two of them for that much of the stuff)...the doxorubicin can get into your mouth through the pores and cause sores, so the popsicle is used to constrict the pores to protect your gums and cheeks.  I had two of the push injectors for the doxorubicin, which has to be given at a specific rate.  Did I mention that I got two popsicles?

I know of someone who had to remain connected to their port at home for additional days during their treatment, and I was thinking that because I get to go home disconnected from it while the port sits benignly in my chest for the next two weeks, that I wasn't doing chemo at home.  Until I thought about the fact that the 100mg of prednisone a day for five days is the "P" of R-CHOP, so I do continue my chemo treatment as pills for five days.  And it's probably my least favorite part.  By the last day, I feel like a hummingbird on speed, my body actually feeling like it's vibrating, my hands shaking.  Prednisone is a natural anti-lymphocyte, but it also packs quite a wallop at those levels, which leaves me wanting to fight one minute then cry the next.  I think it also contributed to the less than four hours of sleep I got last night.  It didn't help that I suddenly realized in the night that it had been two months since my initial surgery that started all this.  But I'm really growing to hate the prednisone.

And those hiccups.  Yeah, they came on.  They were never as gut-wrenching this time since I had the medicine ready to go, but they were always right there on the edge, threatening to drill into my sanity again.  I was very careful with my medicines this time, so no falling incidents in the middle of the night, but I did have to get up in the night and take the meds in order to soothe them before they got out of control again.  So over the 36-48 hours, I did keep the nasty things at bay, but just barely.

Tomorrow marks the "crash" from the prednisone, so at the least the mood swings will be over, but I'm not sure if I'll have much energy to do much.  We'll see.  I need to get up and be more active as it's starting to really weigh on me how inactive I've been through the holidays and the wind and cold.  But that has to change because I don't want my muscle mass to be another thing battle won by all of this.  The fatigue and chemo will not win this one.

Now, for some reason, I've been inclined to monitor through selfies the chemo-induced alopecia as it's set in and taken my hair, first in clumps and now in continued thinning on my head that never grows (that's as long as it's gotten since I shaved it after Christmas).  I wear a lot of hats, partly out of self-consciousness and partly because my head is actually cold at times.  According to all the experts, it will grow back.  Possibly a different color.  Possibly curly.  But it will remain basically gone until after the chemo is done.  I still wash my head with baby shampoo then put cream on my poor scalp.  I also haven't shaved my face since Christmas Eve.  The hair on my arms and legs is starting to thin at this point as well.

December 30:

December 31:

January 7: