Rnd 6: the last

Back in the seat where I began.

   The journey may not be completely over, but the mountain is down, the dust has been cleared, and the road has been built back over it with reinforced steel plates, and I couldn’t have done it without the love, kindness, and support of so many wonderful people rallying around me and my family.  From meals that came with friendly and reassuring smiles, to snow being cleared (even the night after the blizzard), wonderful get well cards, to an outpouring of gifts and cards, it’s been truly amazing, and I know I am blessed.  There is no way I could ever express the gratitude and humility of this experience.
   The chemo nurses were amazing throughout as well.  It can’t always be easy, but they were consistently friendly and compassionate.  There was no physical bell to ring like I’ve seen on Facebook pages, but there was still a ringing peel as the nurses who had worked to heal me surrounded me for a picture, giving me a signed mug and wrapping me in a quilt as my Jedi robes, knowing how Rebekah had helped surround me in my beloved Star Wars to give me strength and focus.
   It’s so true that the road was so dark and unclear, cast in the shadow of Mt. Lymphoma, and in November, the end of treatment was too far away to believe it was even there through the gloom, but that’s when torches were lit and hands were held out to Rebekah—who has unwaveringly been at my side for every part of this trial, through every appointment and chemo—and me to pull us along.  And now the last round has been completed and the final cycle begins, the cycle that ends with a renewal of life rather than a return to the chemo day room.
   Of course, the fight for me isn’t over as now comes the unknown.  This has been an arduous, terrifying ordeal, and now the horrifying safety net of chemo is gone to leave worry of relapse in its wake.  My oncologist is confident we got it early and hit it hard and that it will not relapse, even throwing out terms like “cured,”  but this trauma has been too great to not have left some scars beyond the physical.  But it left my eyes and heart open as well.  Healing, though, will take time.

   So, to return to the more concrete, at this moment, I am doing well.  I think I surprised my oncology team with how well I’ve done and handled it—the first questions asked each time were if I’d been sick or been to the hospital.  RCHOP is a strong chemo regiment to go through. The day of chemo through the five days of prednisone, I take so many pills, it makes me cringe, but it’s about trying to balance a body that’s thrown completely spinning.
   My hair, at this moment, is still there.  It sheds a little with each shower, so it still remains to be seen if it’ll see the finish line. It’s unusual that it started coming back in the midst, so no one has any advice.  My vanity would like it to stick around to get a head start on regrowth, which will begin in earnest in 3-6 weeks.
   So far, for this final round, the hiccups are being kept at bay.  I took the baclofen before the first sign, and I’ve stayed on it regularly throughout.  The prednisone still has me buzzing, though.  And I’m frustrated to have gained 12 pounds throughout this.  I started at a good weight, hard fought and maintained since starting on the bike, and now part of healing means regaining fitness.  The bloating and grossness brought on by the prednisone and other steroids hasn’t helped since the water retention adds an additional five pounds until they flush from my system.
   So, next Wednesday is my nadir visit followed by the PET/CT scan the following Friday, 4/19.  After that is the reviewing of scan results the next Thursday with Dr. Barnett who is incredibly positive that it will be clean.  I’m hoping to get the Powerport scheduled for removal for April 26 so the healing can truly begin.
   And now for the removing of the last Neulasta Tide Pod of Bone Pain:

#blowingupmtlymphoma

 

Rnd 5: Week 1

   I had been warned that round five would be one of the hardest.  I was hoping "they" were wrong.  They weren't.  Whoever they were. The level of fatigue I'm feeling is tenfold from the past.  My legs feel like I've run a marathon, though just the jello and fatigue aspect.  Truly, I dreaded the entire process leading into the actual treatment--"I'm already cancer free, so I don't want to" was my main argument.  It apparently wasn't a good enough reason, so I found myself one more time in the chemo day room.  Truly, the nurses that work in there are amazing.  Rebekah even brought in  Oreos to share with them, which is a small reward for all that they do, though I've become fairly low-need since the initial reaction.  The most I challenged anything was that it had been agreed the appointment before to reduce the vincristine due to my continued neuropathy in my fingers, but before all infusions, I (or Rebekah) have to read my name and my birthday, and I caught that the vincristine was still 2mg instead of the reduced 1mg.  After having to track down the PA who ordered the change then change my orders, they had to remix the vincristine before giving it to me.  Otherwise, pretty uneventful.

Courtesy of Catherine Diehl-Robbins

   The beginning week of recovery post chemo five was not so uneventful.  Right from the start, those stupid hiccups threatened to come back!  I was already armed with the baclofen (a muscle relaxant), which I took at the first sign of hiccups.  And then in the middle of Friday night, before I could take the baclofen again, they came on again while I was trying to sleep.  Panicked, I took one of the other drugs I had to help with hiccups.  Big, stupid mistake!   Toward morning, I got up to use the restroom.  At some point, I moved to wash my hands or stabilize myself at the sink, though I don't remember doing so.  The next thing I remember, I hit my ribcage on the edge of the counter and hit the floor with Rebekah calling to me if I'd fallen, to which I told her yes.  She ran in and then sat with me until I was with it enough to be helped to crawl back into bed. All I could think was at least I didn't hit the port...
   And then the freight train called RCHOP took me out entirely!  The prednisone was harder to get through, the being motivated to get up was harder to get through, and the desire to just do anything has been hard to.  But amongst all of this, friends, family, and students continued to cheer me on, many even posting pictures of themselves in the lime green of the lymphoma ribbon the week of my chemo...it meant so much to me and has truly humbled me to be the focus of so many positive thoughts, prayers, love, and encouragement.
    So despite how this week has clunked along, today's nadir visit with my doctor went very well.  My numbers are still holding, and he said the word "cure" many times throughout.  I know that nothing is guaranteed, but he is very positive that we got it fast and hit it hard and early with a very strong treatment, so it will be gone for good.  Now that Mt. Lymphoma is down, it's all a matter how to best clean it up completely.  When I started, there was talk of three rounds followed by evaluation for radiation.  Ultimately, I was "no evidence of disease" (apparently cancer free) with complete response to the treatment by the midterm CT scan after round three.  With treatments and five down, my oncologist has determined that the completion of the originally proposed six will be the best course in order to best make sure it never comes back.  So, I have to be resigned for one more time in the chemo room at the end of the month on March 28.  After that, he'll help evaluate me and work with me to plan on how to best reenter the classroom I've so missed.  I'll have pay close attention to him and my body as I make my plan to reclaim the life that I had to temporary leave but was well cared for by so many others to make sure it's still ready for me.  April 15 is my goal date, but I know there is necessarily some fluidity to that so I can do so healthy and smart.  I do know the first week back will necessarily be half days.
   But even then, we began to talk about the need to schedule the last pieces of treatment, which will hopefully get my butt moving and motivated and make round six more endurable to have it be it!  At my pre-chemo appointment on March 27, we'll schedule my PET/CT scan, final echocardiogram, and, yay, my port removal!  It's been a long journey with one final lap left, but I have been so supported by everyone throughout this.  On the days I didn't think I could, you sent me your love and energy and prayers and helped lift me up.  Though it's hard to find the positive in this idea of "fighting cancer," one thing is absolutely true: you really live like you're dying.  For me, it wasn't about climbing mountains, but it was about getting to be humbled by how many people care and have taken care of me and my family throughout this!  Illness can inherently leave you feeling very lonely, but I can honestly say that I never for a moment felt alone.
   On an interesting side note, my hair seems to be rallying.  No one seems to be able to tell me if it'll make it to the end, but it is definitely trying to make a comeback!  Best case scenario: I get a bit of a head start on getting my hair back!  Worst case scenario: it all ends just washing off again before I'm done.  But I've not only got fuzz on my head, I've also got my beard back and actually have to shave every couple days!

#blowingupmtlymphoma #raptors4opal

Rnd 4: Week 1

My girls, wearing their warrior shirts

   The two weeks leading up to this most recent round of chemo (round 4!) included an echocardiogram and CT scan.  My heart seems to be holding up, which I intend to help out by trying harder to include more frequent and regular cardio workouts.  This time for the scan, it was only CT (no PET), so I had to drink the whole bottle of barium (1/2 at 8:30 and the rest at 9:30).  It was all done in the car on the way over to Boulder, and Rebekah made fun of all my gagging sounds since the liquid chalk neither tasted like "mocha" nor "cinno."
   I think doing all this will be made easier as the appointment with the PA Lisa a week later confirmed that the CT scan showed the single lymph node that lit up in the initial PET scan at 21 x 15mm is now 4mm, indicating a complete response to treatment.  So, yes, Mt. Lymphoma has crumbled and I appear to be cancer free (a final PET scan after treatment, though, will be the final say)!  I will still have to finish all six rounds to make sure we turn the rubble into dust then dig a bit more out through those last two rounds, but I’m ready to move on.  With round four finished on Valentine’s Day (I know, I have great timing), I am 2/3 of the way through treatments and hope to have life resuming toward normal by the middle of April.
   This time around, I did enter the chemo room with increased anxiety despite my amazing news.  Or because of it?  I am tired of the prednisone, I am tired of the severe constipation and hiccups that follow treatment, the thought of which right now is enough to send me into a panic attack, I am tired of more hair from all over continuing to fall out in patches (I noticed my eyebrows are thinning now), and I am tired of feeling so tired. There's one thought that keeps me going: with the cancer gone, these last rounds will be what obliterate anything that could be hiding thus guarding against relapse.

Me, Jeanni, and Bret

   The anxiety of chemo day, though, was quickly forgotten in visits from Rebekah’s mom, my parents, and our dear friends Bret and Jeanni.  The day was still basically 9:40 - 4:30 (though they did get my Rituxan up to 400 mL/hour for the first time!).  But apparently, with enough coffee and conversation, the Benadryl doesn’t knock me out cold.
   So, for the hiccups, I am armed with a new prescription (Baclofen) suggested by someone from a Facebook DLBCL support group (this time a muscle relaxant instead of an antipsychotic).  The chemo nurse also suggested a dosing strategy for one of the other prescriptions I have. Honestly, our medicine cabinet is starting to look like a pharmacy!  And the Baclofen has been a wonderous addition!  After nearly 92 hours of hiccups last time with little relief, I have been able to keep the hiccups completely at bay, so they've cost me not added anxiety, stress, or sleep this time around. And so I realize now that this first week of the cycle is hardest because, fresh from being pumped full of toxins, I spend much of my time fighting and medicating the symptoms of chemo: the nausea, the aches, the hiccups, the prednisone jitters, the constipation, the diarrhea, the insomnia, and fatigue.  Yep, half of those things seem to to oppose each other, but yet they manage.  It truly makes me appreciate the good health I'd enjoyed going into all this so that I wasn’t beginning at an already low point.  I never had a single symptom of the lymphoma but was made to feel sick by the chemo.

"Obi-Pole" Kenobi and Arfour

   Of course, no week is complete without something going askew.  This week, my poor Rebekah, who's remained such a strong caregiver and co-warrior through this, has ended up with a lung thing that won't let go.  It has certainly made the Opal house a bit strained.
   I keep being told, though, that I'm doing quite well.  I wonder what I might've looked like then!  My GI tract is so messed up that it goes from taking Colace and Senokot with a Miralax chaser to scrambling for Imodium.  Chemo is not kind!  And I'm most definitely developing neuropathy (tingling and numbness) in my fingers, likely from the vincristine.  They seem not to be too concerned since I can still button and zip my pants.  It's a balancing act of a strong enough dose and not so toxic it kills the patient as well as the cancer.  Perhaps my dosing can be adjusted?   Yeah, probably not.
   And so, I am doing well now.  I like to say I've hung in better than my hairline has managed to.  Did I mention my eyebrows are thinning?  That's not got me very happy.  Better my hair than my life...small price.  Truly, I got this!  Being fully cured is just around the corner!  I did have one of the worst panic attacks in a while when I began thinking about the future and Googling relapse rates.  None of it means anything without knowing of who I am and my experience.  My awesome brother-in-law Nate has specific research background in cancer treatment and R-CHOP, and he walked me back from the ledge and was very reassuring.  I have so many positive prognosticators and my awesome Support Squad pulling for me, thus I have no reason to believe that the cancer is anything but gone and will never relapse.

#blowingupmtlymphoma

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: