Wednesday, May 13, 2015

A gift to the rest of us

Most of you know by now that Greg Grappone passed away on May 1 from pneumonia following complications related to graft vs. host disease. He was 35. It happened quickly, was painless and his entire family was surrounding him when he left.

We held a memorial service on Sunday, May 10. In the coming weeks, I will be sharing some remembrances from friends and family. It is important that our 2-and-a-half year old daughter Briar know her father through our memories. In true Greg fashion, he documented his life very well, something I'd encourage everyone - especially people facing health challenges - to do.

Greg maintained a separate blog for Briar, wrote a journal and letters, and allowed me to interview him before his transplant. In the video he spoke about his life and what kind of legacy he wanted to leave behind. These keepsakes have been immensely healing for me personally, and I know they will help Briar feel closer to the incredible man we all loved so dearly.

As anyone who has lost someone close knows, the numbness, the fatigue, the heartache of his loss is profound and ravenous. The waves of emotion are unpredictable. Time is warped. Sometimes taking it one day at a time just doesn't cut it.

Still, I take solace knowing that Greg lived a fulfilled life in spite of unceasing physical and emotional challenges. Even in his last months he rallied, taught himself to code and built websites, cooked more and researched family genealogy. All that on top of a full time medical schedule and being a tremendous father, no matter how crappy he felt.

As much the Thief (a description Greg coined perfectly for his illness) robbed from him, there was so much it couldn't take, chief among them Greg's steadfast will - to survive, to be independent, to be kind and strong. The lessons he taught me will take a lifetime to digest. I hope to share some of them here as I learn and live them, hopefully half as gracefully as him.

When we started this blog, we called it Counting Up from Zero because the day Greg's new cells (an amazing gift from his sister Amanda) went into his body counted as Day Zero. Well, babe, you officially made it 792 days. Not bad, all things considered. Those days were gifts to the rest of us.

I am so immensely grateful to the Grappone family for the love they unwaveringly showed to Greg, Briar and myself through what I hope will have been the most difficult years of all of our lives. This experience is a true testament to the power of family, and one that I was so fortunate to have been supported by. There is so much love around us.

As we wade through our grief, it's important not to let the tragedy of Greg's illness overshadow the beauty of his life and those lessons he taught. It's certainly not what he would want. Greg accepted his mortality, he thought a lot about it, we talked a lot about it, and he ultimately learned to embrace it.

- Amy (writing on Greg's computer, so don't be freaked out if the author says it's him)

Tuesday, February 24, 2015

A Side Note

Briar and the tutu that STAYS ON.
If you don't count the two guest blog posts, I haven't written an update in almost a month. I still find it amazing so many people still read this blog and get antsy when I don't post for an extended period of time. I'll hear through a sister or my parents that people ask about the blog. So, without further ado, a new entry.

I've completed the first round of Bortezomib and start the second this Thursday. Luckily I tolerate the treatment well. I have noticed being unusually tired for a few days after the injection, but I'll take that over neuropathy!

Amy, along with my physical therapist, the two people who see my skin the most, are certain that it is clearing up a bit and becoming more supple. The sore on my right leg has gotten better, too. This coincided with the beginning of the Bortezomib treatment, so maybe it is chipping away at the graft vs. host disease (GVHD).

To be honest, though, I'm focused on any improvement to my range of motion. I haven't seen any since the start of the first cycle. I didn't expect to see something this quickly, but it sure would have been nice! I have to see the improved skin as a positive move forward and hunker down until the next cycle begins.

Amy, Briar, and I went to Vancouver to celebrate Amy's birthday. It was a fun couple of days and for the most part my wheelchair requirements were minimal. We even made it to a Bruins vs. Canucks game. One wheelchair perk is good seating. The Bruins lost, but it was great seeing Briar's face light up at all the new stuff she was seeing.

I apologize for the bad joke in the blog title. One of the small benefits of better skin is the ability to once again sleep on my side. I had been a side/stomach sleeper before the skin became too painful to sleep that way. I've pick-pocketed that thief I wrote about a few months ago. I'll keep doing that until he notices!

Monday, February 16, 2015

Guest Post by Allison Grappone: Greg and a bundle of words

Greg and his family started this blog to document his stem cell transplant. For two years they’ve shared treatment details and all that’s tied to it: timelines, procedures, support networks, logistics, hospital stays and emotions. Whether you knew Greg prior to this blog or not, you’ve no doubt shared sympathies for what he’s going through.

Greg talks about living with a thief who is stealing “health, relationships, comfort, compassion, patience, happiness, laughter, dignity, love, hope.” You’re learning who Greg is in the context of struggle.

Here’s a summary of the most common words used in this blog over 2 years.

All humans need reminders about what our friends and family see in us. As we wait for the exit of the thief and Greg to start healing and feeling relief, the least we can do is remind him of what we think of him. Here is what Greg’s close friends and family think of when we think: “Greg.”

Saturday, January 31, 2015

Guest Post by Gina Grappone

It has been a year since Greg moved to Seattle, bringing with him hope of a healthy new start after a successful transplant. Implicit in getting one's health back is getting one's own time back. Instead of going for a 3-hour infusion, say, he could stroll in the park with Briar. Skipping a pulmonary test could buy him an hour lunch at a new brewpub. Cue reality, and the serious setbacks Greg has faced this year. Two major courses of treatment have failed, each one lasting about six months. His mobility has deteriorated to the point that he is primarily wheelchair-bound. When he does walk, the wounds on his legs sting, and his limited stamina forces him to take a break after less than a minute. His legs are frozen in a bent position, like a diver permanently perched at the edge of a pool. He endures constant fatigue and varying levels of daily pain.

One thing about Greg: he doesn't complain. Ever. Yes, we get a glimpse of the challenges he faces through this blog posts. But he's not one to belabor the negative, or go into detail that he assumes will bore us. The tedium that he spares us, though, is a huge part of his life. It's an aggravating and sadistic companion who won't shut up on a long road trip. Greg’s full-time gig is trying to get better. And that means a LOT of time at the cancer clinic, SCCA. Greg is there 3 or 4 days per week.

Here's Greg's medical schedule from last week. It's actually pretty light compared to past months, when he'd have 3-5 hour infusions twice a week. During his visits he's poked, prodded and questioned. He's expending physical and mental energy to be an effective participant in his recovery.

9-10  Physical therapy (twice a week)
10-11 Infectious Disease follow-up for his leg wound (occasional check-in)
10-11 Bortezomib injection. One shot takes an hour. Because it's a chemo drug, there are standard precautions around ordering it, delivering it, and confirming that it's the correct drug going to the right patient. This will last for 3 cycles of 3 weeks on, one week off.
3:30-4:30 Psychologist (weekly)
9 am Bloodwork (weekly) This can take from 10 minutes to more than an hour if Greg's implanted port isn't drawing blood properly. When that's the case, he gets TPA (Tissue Plasminogen Activator), a "clot-buster" injected into the port. That tacks on at least another hour of waiting. If all goes well, the blood draw will happen easily after that. But for Greg, it often doesn't work.
The spoils of a weekly blood draw

10 am Physical therapy
11 am Transitional Transplant (TTC) Clinic (Every other week). Greg meets with his team of transplant doctors and nurses to go over his general health and the treatment plan. This includes the medication check, where Greg confirms, one by one, the 20-plus medications and dosages that he's taking. During this visit the wound care specialist comes to check on his legs and re-wrap them. Bandages are changed at home daily.
12 Meeting with TTC nurse (weekly)
1pm-2pm Palliative Care nurse practitioner - Every few weeks Greg meets with palliative care to address relief of symptoms and the stress related to having a serious chronic illness.

Other appointments that show up on Greg's schedule on a regular basis: Pulmonary tests, CT scans, X-rays, dental appointments, nutrition, and pain management consults.
What’s Greg doing in a Maui phonebooth? Oh, a pulmonary function test

Greg's providers offer excellent care and the staff does their best to schedule appointments close together so there's not too much waiting around. But there's never a guarantee that an appointment will start or end on time, or that a procedure will go smoothly. There are plenty of evenings where we could've switched off the lights on our way out. This past Thursday Greg was scheduled to be at SCCA for about 5 hours for a blood draw, physical therapy, and a 3-hour IGG infusion. It turned into a 7+ hour day because Greg's blood pressure spiked during the infusion. He was given meds to lower his BP but  ended up being sent home when they didn't work.

In the past year, Greg has had just one week off from clinic visits or hospital stays. There's a 5-inch thick medical file that follows him around, charting his progress, and his hours of patience and persistence.
Greg’s year

I know Greg wakes up each day hoping he will have his body back, that his constant adherence to his treatment plan has finally paid off. When he started his latest GVHD treatment, Bortezomib, he said, "What if after one shot I could stand up straight again?" This was not a rhetorical question. I spent a lot of time thinking about it, and all the things that lie ahead for Greg when he can stand, walk and run again. Alas, one shot didn’t do the trick this time, but the drug holds promise if taken for a a few months. If this one doesn’t work, there are others to try. So Greg keeps at it.
Greg and B sunset.JPG

Friday, January 23, 2015

A Two Lollipop Day

Briar and Aunt Gina during the midnight ER visit.
The much-anticipated trip to Florida finally happened! Briar, Aunt Gina, and I spent a week with my parents, enjoying the warm weather and lollipops. Briar was great on both plane rides, with lollipops being the only incentive needed to encourage good behavior (a trade-off I'd give any day). We were also pleasantly surprised at how easy it was to get through security and on to the plane, given my wheelchair status. I found the relative ease of travel encouraging. I have to rely on a small entourage to get me from point A to B, but nothing was so onerous as to turn me off from traveling again.

The trip wasn't without its hiccups. Briar found herself in the emergency room because she woke up with a really nasty cough. My mother, a nurse by training, thought it might be whooping cough because of the whooping sound Briar was making when inhaling air after a coughing fit (hence the name!). My mother and Gina went to the ER at midnight and luckily it was determined that Briar had croup. To Briar's delight, the doctor recommended popsicles as a way to sooth her throat. While her cough lingered for the rest of the week, her illness didn't slow her down. She swam every day, went to the zoo, enjoyed the beach, and participated in other Florida-type activities.

As for me, I've been off of IL-2 for two weeks and had my first Bortezomib injection on Wednesday. I have not noticed any adverse effects from coming off of IL-2. My range of motion is still the same (terrible) and my skin has neither worsened or improved. I will be getting a Bortezomib injection once a week for four weeks, then a week break. We'll stick to this for a few cycles and then reassess how my body is doing. With luck I will avoid the most common side effect, which is neuropathy in the hands and feet. I have experienced this with other drugs and have recovered. I hope the same holds true in I develop it from Bortezomib.

I remain cautiously optimistic concerning Bortezomib. This will be the third attempt to beat back the graft vs. host disease (GVHD) with drugs intended for other purposes. I know, along with my support network, that there is no magic bullet when it comes to GVHD. I just have to keep trying different treatments and keep my fingers crossed that one works! I was able to see Dr. Flowers yesterday (she heads up the transplant unit at the clinic) and she said that new drugs were coming out all the time for GVHD. I certainly want Bortezomib to work, but it is good to know there are more options.

Friday, January 2, 2015

Hello 2015!

Briar with Grandma Bev on Christmas Eve.
The holiday season has come and gone, so too have the excuses for not writing a post!

Medically speaking everything is status quo. While this is good in many ways (who wants to get worse?), it is also frustrating. I wish the IL-2 injections were showing noticeable improvement, and not leaving us scratching our heads wondering if the treatment correlates with my skin getting a bit better. We've decided that I'll continue to use IL-2 until I go to Florida. My first injection was on the 15th of August, so by the time I go to Florida I'll have about 5 months of under my belt (there was a short break in September, due to pneumonia). I feel like this is a good amount of time to judge whether or not the IL-2 is something I should continue. It is not an easy decision. Amy, for instance, thinks that in addition to my skin feeling and looking better, the underlying facia is breaking up too. Is that the work of IL-2? The doctors want me to take a 2 week break from IL-2 before trying any new drug. While I don't like using my body as the test, that break may indicate how well the IL-2 is working. If I get worse, then I think it is a safe bet the IL-2 was doing something. The thought of potentially losing any progress made is scary, but I'm genuinely interested to see how my body does without an active treatment (besides Prednisone, which I will remain on). I leave for Florida on the 10th, so that is when the grand experiment will begin!

So, how is everything else? I'm hanging in there. While the holiday season held many great things (as evidenced by the picture of Briar and Grandma Bev), it was also a reminder of all the things I can't do. Amy, for instance, had to do the tree by herself. Yes, she was happy to do it and the end result was a perfect little tree in the corner of our living room. But man, I wish I could have gone out to pick the tree and then grab a hot chocolate somewhere. You know, Christmas stuff!

2014 has come and gone. I do not want to diminish the great things that happened this past year, but I'm also glad to see it go! 2015, in my mind, is the year of recovery. I know it is going to take a lot of work (and a bit of luck), both physically and mentally, to fulfill this, but I'm ready to give it a try.

Saturday, December 13, 2014

Decisions, Decisions

Fifth disease?
A few weeks ago Amy had to bring Briar to the emergency room. As you can see from the picture, Briar's face had swollen up while she was sleeping. Amy had already brought her to the doctor's office earlier in the day because we noticed a rash spreading all around Briar's body. It was determined that she probably had fifth disease, a common virus that most kids get and fight off. Thankfully Briar did just that. Within a couple of days she was bouncing around and being her happy self again.

So, why am I writing about this? Yes, it is a good excuse to post a Briar picture, but it also reminds me about my own immune system. In many ways I'm a healthy person, able to fight off a lot of nasty stuff. There have been times when the whole family, and my other caregivers,  have come down with a cold, but I remained untouched. I certainly don't go out looking to pick up an illness, but it is nice to know that to protect myself I don't have to leave the house in a hazmat suit.

Unfortunately, it appears that I will have to once again become more vigilant in avoiding the sick among us. When I was at a doctors appointment this week, it was determined that I should discontinue the IL-2 injections. At a recent convention, my Seattle Cancer Care Alliance (SCCA) doctors had the chance to meet several of the doctors that took care of me at Dana-Farber. They brought them up to speed on my condition. The feeling was that, after over three months of IL-2 injections, I should have seen more improvement from the drug. I won't be stopping the IL-2 right away. I'm going with Briar and my sister Gina to Florida in mid-January (yes, this makes up for the trip I had to postpone earlier in the year!), so I will continue the injections until that time. By that point I will have five months of IL-2 under my belt, which is a good amount of time to see if the IL-2 really is or isn't helping.

The good news is that there are more drugs to try to help combat the graft vs host disease (GVHD). The bad news is that they are more harmful to my body. One of them, Bortezomib, can cause peripheral neuropathy, in addition to weakening my immune system. After that is something called Campath, which can actually trigger dormant viruses in the body. I would find that much more fascinating if it weren't my body at stake! My doctors have been candid with us about the risk these drugs pose. We have to approach each treatment decision as objectively as possible. I have to be particularly mindful of this because I am having a hard time accepting what the GVHD has done to my quality of life. Luckily my support network is full of very smart people, so they can help me work through the decision making process. It is tough, especially when the studies we read show a high mortality rate for particular drugs. These studies usually consist of a very small sample size, so even if one person dies the percentage seems high. The patients in these studies have also been through a lot of treatments. Their bodies are already compromised and more susceptible to illness. Fun stuff, no?

Otherwise things are quiet on the medical front. Next week I have another pulmonary test. I don't think there will be any surprises, so hopefully it won't trigger any scans or more prescriptions. I'm actually more worried about the blood test to measure my cholesterol level. With my lack of mobility and the all-cheese-all-the-time diet, I'm afraid the results will force me to be healthier. I'll start right after the holidays. I swear.