Moving forward, ringing bells

I finished radiation today! Thirty-three days, totaling over 60 miles of walking (to get there and back each day–radiation was actually given with me flat on my stomach, not walking). Arriving home today, I found my first blister and hopefully that won’t burst open. The site is very red and may worsen over the next week, but it should then heal to its original appearance, although a darker shade of skin is possible. The scans to determine if treatment is successful are tentatively slated for July 1, with results on July 3. This may change due to holiday schedules, but it is the current plan. After leaving my final radiation treatment, I rang the bell and it wasn’t overly satisfying. Ringing bells is always fun, but I didn’t feel connected to it as a milestone. I guess I’m just on the road, moving forward, and there are no milestones, just motion–and I’m okay with that.

Yesterday, I managed to talk my way into chemo cycle 12. I say “talk my way into” because I wasn’t actually meeting the blood count standards that they wanted. Using my mad debate skills, I finally found an argument that convinced them it was okay: this cycle also lacks doxorubicin (the very mean drug) and the two drugs I would be getting aren’t particularly damaging to platelets. Citing my tenth cycle (which was the same drugs) as evidence that my body withstood things rather well, I received the green light after a phone call for a second opinion. The chemo works best when the cycles are closer together and at 3 weeks and 2 days, I was done waiting. We’ll see soon enough whether or not I was wise to push my body.

There are two studies that form the foundation of my treatment plan, one using 14 chemo cycles and one using 17. The 14 is more recent and features the doses closer together (resulting in the best outcomes). To achieve that 14 cycles in a fairly close schedule, I only have one more of each treatment type. This is completely reasonable. My oncologist also believes that I can hit all 17, but does acknowledge that most patients’ bodies can’t. I’m excited to almost be at 14 (what I would consider a full treatment) and hopeful that I can reach 17 (what I would consider the best treatment).

Overall, I still have some mentally bad days, but they are certainly outnumbered by the good. I’m still processing the bad days so I’ll have to explain them later.

On the more entertaining side of things, after a five-month hiatus, I finally shaved! The hair was peach fuzz that just kept growing out in a goatee style. My mouth started to actually resemble a goat’s mouth with the long, white fur, so it had to be removed. My eyebrows are returning in the same fashion as the goatee, but I won’t be shaving them because I’m just glad there’s something there. Continuing the trend, my eyelashes are growing back in. They look normal, albeit still quite short. I first noticed their return when I saw little globs of guck. Yep, the first thing they did was collect garbage. Nose hair is also returning, which has greatly reduced how often I need to blow my nose (and the urgency of the action). Having the doxorubicin taken out of my chemo regimen during radiation is most likely the reason for all this hair growth, although my arms and legs are still glossy bare.

Celebrate good times, not things that feel like an episode of Good Times

One particularly odd moment came towards the end of my last chemo stay when my blood was being drawn (as it is every day for routine testing). I have a Power Port so I do not feel it and every morning I ask for a printout of my results so I can follow what’s happening in my body. It’s just not a big deal and I look forward to the results. On that day, however, I felt almost angry at having my blood drawn. I felt like I had given enough of my body and I was done with anyone wanting more from me. I didn’t vocalize any of this because my brain told me I was being stupid, but it was an interesting feeling to me. Sort of an “I’m done. I let you slaughter me with chemo, now just stop. Leave me alone.” The next day’s blood draw did not yield this response. Maybe I was just tired and irritable.

Certain people in my life want to throw an end-of-treatment celebration. Although I appreciate the sentiment and I’m sure some cancer patients do want to celebrate the end of treatment, it’s about the last thing I want. As much as I laugh about cancer and as much as I learn and grow as a result of having cancer, it’s all pretty traumatic. If a gunman invaded my home and shot me, I wouldn’t celebrate living through it. I’d be happy to have lived through it, I’m sure I’d make lots of jokes, and I’m sure it would positively impact my life, but I would be left devastated by what happened, afraid of the shooter’s return, never quite feeling safe. Even if there were a guarantee that the cancer is gone forever, it still wouldn’t feel like an occasion to celebrate. Perhaps my attitude towards my diagnosis masks the fact that I truly, truly think it sucks. At this point, I don’t see a time where I’d think it’s worth celebrating a victory over cancer. The cancer experience feels too personal and too damaging to ever open up to a party. It’s more of a “let the pain sit, let the pain find its way out.” A celebration just seems premature to how I feel.

Not one to harp on the negative, I am grateful for all of the loving comments and gestures from friends and family. We should all be more open with our feelings, yet it’s reserved for times like this. We get the very best with the very worst. Humans sure are a silly species.

Today I had a scheduled blood transfusion to keep my red blood cells high enough for radiation. The proton radiation technicians are a trip. They are greatly entertaining and appreciate my sense of humor (which gets more daring considering that I expose myself to them five days a week). I also learned that the protons are so sensitive that music isn’t played in the room because the bass would alter the treatment. The more I learn about the treatment, the more I wish I was better at science in school.

The art therapy lady made an appointment with me for next week’s chemo and I’ll be sure to share the results of that. Here is the result of my last music therapy session, where I played the opening to “Blue Moon,” which I only know from Grease:

Another shout out to the amazing nurses of Lunder 9. Many of them have or had family members going through chemotherapy which inspired them to become nurses in a cancer ward. It’s the least I can do to acknowledge how awesome they are again.

All the stuff that makes life worthwhile

Monday morning, heading to the proton center, I was taken aback by the Monday morning work-rush crowd and how unpleasant everyone seemed to be. It really made me question the overall value of life when we are always wrapped up in our own worlds, not being particularly beneficial to strangers. Do our individual relationships with friends and families make up for a weak society?

Later, I had my blood work done to verify that I was ready for my five-day inpatient chemo (a full-strength Etoposide and Iphosphamide combo concurrent with radiation). In the waiting room, I must have looked like a sad sack. I was stretching out my neck and massaging the back of my scalp. A gentleman came over to me, a large tumor over his throat, and wrote down the concern, “Are you okay, man?” We had a brief exchange and plenty of smiles. In that moment, it validated that not all of society is lost in their own worlds.

After being admitted to Lunder 9, a nurse who knew I had a standing order to share with any young patient where they can find me, came to say that there was a 21-year-old college senior on the floor who was also excited to meet a younger person. It was the last night of his first cycle and we did countless laps around the floor to get exercise. He was very outgoing and friendly and it was a nice change of pace.

Towards the end of our exercise, an older gentleman (also on his first cycle) stopped us to ask questions about how to make the best of the experience. Talking to these two, just starting their journeys, gave me a funny revelation–I’ve become a veteran of the floor. Not sure if that’s a good thing, but it is the case.

Tonight, doing my laps solo now that my new walking buddy has gone home, I passed by a patient on a stroll heading the opposite direction and I wished her a good evening. She smiled and wished me the same and for a brief moment it felt like a small town walk at dusk and saying “good evening” to a neighbor.

I’m really finding cancer patients to be about the nicest people on the planet. I’m sure that’s not actually true, but it’s nice to at least think it might be.

Socks the Sock Monkey enjoying a refreshing carton of milk:

The $50,000 Pyramid

Yesterday I finished photon radiation and today I started in with the protons. I’ve always been curious what it’s like to spend $50,000 in a month and now I’m finding out. For the uninitiated, proton radiation is a targeted blast to the tumor that barely spreads past the desired area, whereas photon radiation goes all the way through the body creating even more damage to healthy tissue. The proton treatment is significantly faster than the photons. When the technicians returned to the room after less than a minute and told me I was done I questioned if I had even received treatment. The super short treatment time did explain why I wasn’t asked for my music preferences. I am also saddened that I don’t get to take a nap on the table (even though they put warm blankets on me, the big teases).

The proton center isn’t as aesthetically pleasing as the photon center, but they did hang up St. Patrick’s Day decorations so that’s something. Because protons do less damage to healthy tissue, young patients are a priority since they’re still growing. It’s the first time in my journey that I’ve come face-to-face with very young cancer patients. Heartbreaking, yes, but also grateful that we live in a time when there are better treatment options for them (and for me).

My radiation plan is essentially giving me the absolute maximum dose before leukemia risks skyrocket. Each treatment kills half of the tumor cells so by the end of treatment all of the tumor cells should be dead (or the chemotherapy will clean up what little remains). Success won’t be established for a couple of months, but I’ve got a good feeling that things are going my way. Not that I’ve never been wrong, but optimism always beats pessimism.

Nothing else to report at the moment. Things are going even more smoothly than usual and I am quite thrilled with that. I do encourage you to do a Google image search for “proton beam radiation” to see what the machine looks like. Stylistically, it’s quite futuristic and it was a bit intimidating to climb into (perhaps because of my fear of open spaces).

Mental changes

I have noticed a major change in my attitude over the last couple of weeks. It’s possible that the extra few days away from chemo assisted, but I’m very happy with my progress. “Progress” is my word of choice today. I actually feel like I’m making progress.

On October 4, I started a journey towards 17 chemo cycles and an unspecified amount of radiation. The entire process was projected to be 8-10 months. It seemed insurmountable. Well, surmountable in a way that no one would want to surmount.

A couple of months ago, I set an event on The Simpsons: Tapped Out game to “grow corn,” which would take 90 days. At the time, 90 days felt like an eternity. Now it’s down to 23 days and I’m excited because 23 days feels like nothing.

Today I did chemo cycle 10 of 17 and radiation dose 6 of 33. On the chemo front, I hit double digits! The real news, though, is my perspective shift. In my brain, I am no longer counting up how many cycles I’ve done, I’m counting down to no more chemo! I’m not even thinking about whether my radiation number is going up or if I’m counting it down because a month of radiation just doesn’t even feel significant to my timeline. Being in double digits, being more than halfway done with chemo, and starting radiation have all combined to make me feel like I’m just coasting to the finish line now instead of still climbing up the mountain.

I’ve noticed that what distracts me changes. When I first started, I played endless hours of Yahtzee on my iPad (thanks to Charles for making me download it during my first cycle). Then I watched comedy TV shows all day. This was followed by reading all day. Now I’m alternating between comedies and dramatic movies, video games, and comic books. I’m just going with the flow of interests with a “whatever passes the time” attitude. I just need to get through this so I can get on with the better times in my life.

Fun fact of the day: this little fella is a mere 2mg (3ml–really, go measure how much that is if you don’t know), but that’s the maximum dose because it is one tough S.O.B. Sure, I mock it by saying I eat chemo bigger than that for breakfast, but secretly I love what it’s doing to my cancer. It’s a case of “I kid, I kid. Why? Because I love.” I still think it looks funny, though, especially such a little guy having so many big boy warnings on it. (The “blocked” part is my medical record number.)

Please pray (or do whatever positive thing you do) for the family and friends of a young man named Randy, who passed away from Ewing’s Sarcoma this week. Randy is an inspirational figure and his infectious positivity proves that cancer only wins if the person lets it. I never had the good fortune of meeting Randy, but his mother is part of an online support group and I’ve followed his story. It’s now the part of the story that isn’t so easy to document: how all the lives he improved with his attitude and wisdom will go on to spread his positivity. I can’t fathom the hurt created by his loss so as an outsider I am choosing to focus solely on Randy’s continuing triumphant spirit.

Awkward moments are the best moments

Being Friday and the end of my first week of radiation, I was due for some entertainment. To step back a few days, I’m starting with standard radiation treatments and much like everyone says, I don’t feel a thing. Well, most of the time. Sometimes I swear I can feel my tooshie vibrate. The entire process takes about twenty minutes, Monday through Friday, so it’s not terribly invasive on the schedule. The goal of radiation is to completely kill off any remaining tumor cells. Chemotherapy will run concurrently (and proceed for several months after radiation stops) to ensure that any stray cancerous cells are killed.

As the tumor is in my sacrum, I get stripped down (no idea why they don’t ask me to do it–maybe they just enjoy pulling off people’s underwear) and lie down on a table with my bum exposed. Fortunately, the temperature is always decent (I was going to say “the temperature is always room temperature,” but thought that might be confusing). I get to choose the musical genre and I’m going with Motown classics, which is what led to part of today’s awkwardness. First, the technician struggled to pull down my underwear, apologizing along the way. I’m not accustomed to people apologizing for pulling off my underwear and apparently the technicians didn’t expect me to vocalize that. Then, with my underwear around my knees, Pandora Radio decided it was an appropriate time to play Marvin Gaye’s “Let’s Get It On.”

In less awkward times, the waiting room provided me with a chance to talk to other cancer patients. I don’t get that opportunity as often as one might expect. It’s an interesting mix of fear, know-it-alls, been-through-it-alls, confused people, and repetition of phrases about hope and faith. The best moment came with a ring. There is a bell by the door for patients to ring after their final treatment. A gentleman was walking out and told his friend to hang on a minute because there was something he had to do. He marched over to the bell, rang it proudly, and the waiting room erupted in applause. He also said goodbye to a fellow patient, exchanging phone numbers and declarations of love. They had only met in the waiting room a few weeks ago, but the friendship grew quickly.

Monday, my blood counts will be checked (due to radiation to the pelvis–a main location for creation of blood cells–my counts may be suppressed and cause a delay). If the counts are good, Tuesday will be chemo. Radiation every day, of course.

Small update

My white blood cells continue to increase (all the way up to .6, compared to the normal range starting around 4.3), but the exciting number is my neutrophils (bacterial infection fighters). Yesterday they were at a stunning zero and today they are at 150. The attending oncologist said that with my Neulasta shot, that number could triple each day. Once I get above 500, I can be discharged from the hospital!

My shingles are now looking “withered” and it has been two days since any new spots. They don’t look angry anymore–all very good signs.

I won’t bother to address my red blood cells because those little bastards are still being slaughtered. They really don’t put up much of a fight. I’ve had so much blood that isn’t mine put in me that I suppose I could blame other people’s red blood cells for being weak.

Surprise kindness event: the acupuncturist for my outpatient chemo brought over Valentine’s candy and kept me company yesterday just to be nice.

Unexpected resort stay

Due to the shingles spreading all over my body and my immune system being way below average (and worsening as I’m at the low point of my chemo cycle), my doctor had me re-admitted to Lunder 9 so I could have the antiviral through an IV and be closely watched for signs of an unchecked infection. There was lots of talk of everything that could go wrong and I knew it was the right thing to do, but I still resented the thought of returning to the hospital so soon. They sent me home to get my stuff while the room was prepared and I had to take an angry nap so that I would be pleasant again. I am quite the advocate of angry naps. They serve as a “reset button” to start the day again with a new set of expectations, even though those expectations may be worse than the original expectations for the day.

The treatment plan is IV antiviral for a few days and then a different antiviral for home use. Following the pattern that there is often a better alternative that isn’t initially offered, it’s a pill that is absorbed better by the body and is taken three times a day instead of five.

At this exact moment, the start of radiation has been postponed until Tuesday. The Lunder 9 nurse practitioner doesn’t understand why my condition is cause for a delay so she’s pushing for a suitable explanation. Since I haven’t started radiation yet, today or Tuesday doesn’t really make a difference to me. So maybe I’ll have radiation today, maybe I won’t. “Let go and let God” can be applied to so many situations and this is one more.

I also want to mention that the nurse practitioner on Lunder 9 today is someone I haven’t seen since my first chemo cycle. When things had taken a bad turn and I was leaving the hospital after a day of virtual unconsciousness, she sat and talked with me and calmed me tremendously. Not knowing her name, I could never ask about her. Part of me wondered if, perhaps, I had imagined her. Seeing this angelic visitor again makes me happy.

Well sh… ingles. And the negotiation to end all negotiations

My treatment reached a new milestone: I am now more than halfway done with chemo! Cycle nine of 17 just bit the dust with a five-day stay at MGH Resort and Spa.

My new ordeal was with my old oncologist, who stole me off the wait list from my new oncologist. What can I say? People want to work with me. I’m in demand. I had a suspicious change in what appeared to be a mole on my left hip/lower back, but he didn’t think it flashed any major warning signs of melanoma. Furthermore, it would be highly unlikely–although possible–to develop a melanoma while on chemotherapy. Still, a dermatologist would be sent in to check it out during my hospital stay. The dermatologist performed a biopsy and gave me two nifty stitches. I was showering when they returned with results, so an intern doctor on the floor gave me the results in the most horrific way possible. Bearing in mind that melanoma was a possibility or even a spread of Ewing’s, this med school hot shot said to me, “You know when a doctor comes to deliver the news, it’s not good.” My body went into its familiar panic mode where I sit perfectly still and just wait for whatever blow is about to be struck. He continued, “Do you have any guesses as to what it might be?” That right there is not a misquote. He actually told me has really bad news and then asked me if I wanted to guess what it was. Do medical schools not teach future doctors how to talk to patients? Do they not teach them that certain statements are likely to result in being choked to death by a very angry patient who watches too much Dexter? Any which way, he finally got around to the diagnosis: shingles (a recurrence of the chicken pox virus due to my consistently suppressed immune system during chemo). Shingles can be absolutely terrible. They ran through potential problems, including extreme nerve pain that isn’t really helped by medication. The good news is that we caught my case quite early. I only had one sore at the time and it wasn’t causing me much more than very minor itching that I could ignore. Since then I’ve had a few more pop up, but none of them are painful. I am extremely fortunate. I am also on an anti-viral medication five times a day for a week. This should–hopefully–keep the sores from becoming any worse. Interestingly enough, the anti-viral medication’s documentation says it is used for chicken pox, shingles, and genital herpes. Have to get my laughs in somewhere.

My new oncologist, during one of his visits, dropped a bombshell on me. He said that the study we used to develop my treatment plan used 14 rounds of chemotherapy, not the 17 that I’m slated for. As in, we can “negotiate” a stop time. I asked the Duchess of Chemo (my nurse practitioner) and she suddenly acted like “crap, I didn’t want you to know about that.” She then explained that most patients who can handle 17 rounds do all 17 rounds so there are no regrets if treatment doesn’t work as well as planned. But starting around cycle ten, the stop time starts being negotiable. She pointed out that cycle ten is my next cycle and therefor it would not be negotiable just yet for me, but that the time for negotiating is indeed approaching. There is a slightly higher leukemia risk for doing three additional cycles, but it isn’t noteworthy in the doctor’s eyes. He’s getting me research on the exact difference in risk between 14 and 17, but I think I’ve already made up my mind. Although I would love to start reclaiming my life a month-and-a-half earlier than expected, this cancer can be very aggressive and sneaky, so I wouldn’t cut the number of treatments unless my body couldn’t handle the chemo (doctor said if side effects are ravaging the body, stopping chemo is the better choice). I start radiation this week, which, God-willing, will kill the remaining tumor cells. I like the idea of still having more chemo ahead to keep killing any random cells that remain. Radiation will also lower my blood counts, so chemo may be a little slower over the next six-and-a-half weeks. I’m hoping to get two, if not three, chemotherapy treatments in concurrently. That would leave me with at least five more chemo treatments. The first six treatments shrunk the tumor like crazy so I have no reason to believe that it won’t continue to destroy the enemy within.

Earlier this week, I had a bit of a bad evening. The son of a member of the Ewing’s Sarcoma email list/support group hit a really bad patch and his life was on the line. Sitting in a hospital room, hooked up to chemotherapy, knowing that we were fighting the same disease, it was all just too much. I prayed hard and often, frustrated, confused, angered, saddened. There’s just no way to describe how unfair and horrible life felt in those moments. But still, pushing forward, praying for healing and for a better world. Making the world a better place for sarcoma patients is Landon Cooper (www.miles2give.org) who is doing a fundraising and awareness run of 3,000 miles. Sarcomas are not terribly common and research money tends to be scarcer as a result. Following that chain reaction, treatments are not developing as much as for more common cancers. Whether my prayers are answered with miraculous healing or through more people working together to stop these ugly diseases, I take comfort in knowing that prayers are answered. 

I do have my first–and only–complaint about the quality of care on Lunder 9. I receive my chemo overnight and the machine that paces the IV drip makes a terribly annoying and loud beep when there’s a problem or when the drip ends. In the middle of the second night, my chemo ended and the beeping commenced as expected. I rang the front desk and asked them to notify my nurse. All of this is very standard and to be expected. But after ten minutes (and two increases in the already obnoxious decibel level of the beeping), I called back. Before I could utter a word, the worker at the desk snapped, “Your nurse will be in as soon as she can!” When my nurse did come in, it was revealed that she had never been texted that I had needed assistance after either of my calls. She had seen the light on outside my room and that was the only reason she came to check on me. With nothing but wonderful experiences with the Lunder 9 staff, I dismissed it. But the very next night, the situation repeated. After a twelve-minute wait, I called back and politely asked for someone to be sent. The voice–the same as the night before–kindly responded that she would let my nurse know. After five more minutes, I walked into the hallway with my insanely-loud beeping IV pole and proceeded to track down my nurse, who looked horrified and immediately grabbed her cell phone to verify that she hadn’t missed a message. (For the record, they are modified cell phones–they only receive hospital transmissions, not personal communications.) Again, my nurse had not been notified that I needed anything. The next morning I asked for patient advocacy so I could file a formal complaint against the staffer responsible for texting nurses. The gentleman responsible for patient advocacy came to see me in a blind rage. He was beyond furious that the staff member had disrespected me and not alerted my nurse that I needed help. I feel responsible for now going the other way: this one staff member did something I consider shockingly reprehensible (I am one of the few patients on the floor who can advocate for himself easily–I shudder to think of how many patients have had to put up with nonsense from this person), but literally every single other person on Lunder 9 is amazing. It’s a machine of people, from medical to service professionals, and they are all the kindest and most fun people. Another front desk staff member even called my room from her house during the blizzard just to chat because she knew that I wouldn’t have any visitors since the roads were closed. Another service member used his very limited English to talk to me about the best comedy shows to watch. These people are under zero obligation to do these things, but it’s just the Lunder 9 culture: everyone is wonderful and genuinely loves being there. As much as I hate Lunder 9 for being the place where I go into captivity for five days and get toxic chemicals injected into me, I am already well-aware that I am going to miss the people there something wicked. It’s like a microcosm of the perfect world. A better group of people cannot be found anywhere and I don’t want my one small story to tarnish that in the least bit. During the blizzard, food became a lot less fancy, but the food services guy brought me chocolate milk and shortbread cookies while one of my former nurses gave me cookies and offered me Lucky Charms. Another nurse from a previous stay had heard the good news on my CT scans and she brought me a delicious cupcake that her sister made (I love that I’m the cupcake guy, apparently) as a surprise. I’m totally rambling, but since it’s about how awesome the Lunder 9 crew is, I’m okay with it. Here’s the cupcake:

A rabbi sent me this quotation, knowing that my sense of humor would enjoy it: “When an illness knocks you on your ass, you should stay down and relax for a while before trying to get back up.”

The day I got my tramp stamp

Today brought my pre-radiation CT scan and much laughter. I met a woman whose husband was there for the same procedure and we became fast friends as I had to change into a gown without pants. I tried not to flash her but she said that at 52 years old there wasn’t anything she hadn’t seen. In a short period of time we really bonded over the need for positivity in the face of ugliness.

The technicians boosted my table up really high for me and that delighted me. I’m so tall that I rarely-to-never get to dangle my feet anymore. They also made funny comments like “I’m going to pull down your underwear now” and “When I tattoo you, you will feel a little prick.” Even funnier is that they weren’t joking. To ensure that they hit me with radiation in the exact same location each time, they tattooed on four small dots. Because of my tumor’s location, I can now say I have a tramp stamp.

I also have a date for Valentine’s Day! Two dates in fact! One is a practice run-through of my radiation and the other is the actual start of radiation. I will begin with 11 days of standard radiation and then 22 days of proton beam radiation (a super cool form of radiation that is very targeted and does significantly less collateral damage). The technicians told me to be prepared because it is an awesome sight to behold. Treatments are Monday through Friday, but not until noon so I can still get enough sleep each night. I will continue chemotherapy concurrently, but without doxorubicin (the “red devil”) because it is incompatible with radiation.

Also important to note is that instead of drinking the disgusting vanilla milkshake with contrast for the CT scan (which you may recall made me want to vomit last month), I brought fruit punch Gatorade with me and asked them to mix the contrast into that. Lo and behold, I couldn’t even taste the contrast and it went down super easily. It is criminal that they make people drink the disgusting milkshake when it could be just as easily taken with the beverage of a patient’s choosing. Truly, so many of my bad experiences have more pleasant alternatives that work just as well. I just have to share what isn’t working for me and they fix it. I’m sure there’s a valuable life lesson here somewhere. Maybe something about problems can only be solved if they’re confronted. Yeah, I like that.