Let’s Talk Turkey…

And someone thought this was a good idea.

Anyone over a certain age has had a colonoscopy and undergone the prep that one does the night before to cleanse all the necessary passages. The irony of this is that, despite Rich running at least once an hour to literally drain his body of anything his stomach didn’t keep, he’s gotta start taking laxatives. I believe under the Geneva Convention this falls under the “cruel and unusual punishment” category.

The doctors are hoping to find the cause of this chronic D. The theory that’s being tossed around is that this is an example of Engraftment Syndrome… a lesser cousin of Graft vs Host Disease. GVHD is common in transplants when the organ or stem cells are donated from a family member, friend or stranger… pretty much anyone who is not your identical twin. The cross matching and typing is very in depth but there are always differences that, no matter how slight, can trigger an autoimmune response and the body begins to reject the transplant. As bad as that sounds, the doctor’s delight in the possibility had her practically dancing in the office. The long term prognosis for patients with this following an autologous stem cell transplant that exhibits GVHD or ES are improved over those who don’t. It shows the body is prepared to fight any invaders.

It’s these kinds of things that make you wonder what you should be wishing for. Other than normalcy.

We were instructed by the stem cell doctor to call from the recovery room after the endoscopy and colonoscopy were done so we could all consult on the immediate results.

Great plan… only no immediate results to be found. Everything looks good. Which, for most people is good news. For us, it means waiting for sample cultures and biopsy pathology reports to come back. A week of waiting. We’ve been down this road before.

Our later conversation with our stem cell guru is that we up the amount of opium and add immodium into the mix to stem the tide. Suddenly the amount of laundry is lessened considerably. Of course, so is the amount of coherent conversation!

We give the new cocktail a few days to do its thing. Then we begin to play with foods to see what may exacerbate the situation. Before, EVERYTHING was the culprit. Now we’re finding a certain level of lactose intolerance. Tomatoes have been an issue all along but we’re ready to test out some sauces and fresh veggies to see where the limitations are now.

Our other restrictions are being lifted one by one. Plants are once again part of our interior landscape and it’s good to see growing things around us, particularly as Autumn wanes and Winter approaches. Crowds are less of a fear as blood levels rise. As we are now less than two weeks from the magic number of 100 days post-transplant, another milestone is reached for us. No longer are we in twin beds in the little main floor bedroom – we’re once again in our own bedroom in our own bed upstairs. We luxuriate in the space and rejoice to be able to share a bed once again!

And now, Thanksgiving is just two days away. We have so much to be thankful for this year. The friends and family that have supported us throughout our journey; the doctors and nurses who have given us the best of care, listened to our concerns and held our hands; the research that created this science fiction treatment that has set us on this new path to health. And all those wonderful family celebrations we have had!

We’re thrilled to leave tomorrow night to be with our family in Rochester for the holiday weekend. Our trip will be by Amtrak. We’ve booked a sleeper car to minimize the exposure to potential infections. Will it remind us of our little cabin at North Shore University Hospital…on the seventh floor through the double doors to stem cell transplant unit? The memories of our Amtrak travels served us well during our time in that little room. When we enter THIS little room on our Amtrak train, we’ll be able to see how far we have come. That the end of this line is filled with the arms of our family makes it all worthwhile…for the first time in a long time, Rich will be able to hug and hold his grandchildren. Priceless.

Blessings and the love of friends and family to all of you who have been with us as we’ve traveled this path. We wish you all a joyous holiday. You will be in our thoughts and in our hearts as we celebrate with gratitude this weekend.

Into the Opium Den

When you’re told you can, with limitations, enjoy restaurant foods again, it’s both a welcome milestone and a finger-biting moment. Rich and I decided that given the timing, we’d go out to dinner for our wedding anniversary… a wonderful way to celebrate on a number of levels. But whose kitchen do we trust? What clientele could we take a chance with? This was nerve wracking! The stem cell guru suggested we avoid taking the subway with any ebola patients…. Good thinking. Duly noted. No worries. Right.

The choice made, I was nervous as we got ready…. Going to a public place without a mask and gloves? Eating food prepped in a kitchen not cleaned by me? Using utensils that may have been handled by any number of people? OMG! What are we thinking of?!

As we walked into the restaurant, I wanted to tell Rich not to touch anything. I wanted people to move away from us. I wanted to read out the menu to him so he wouldn’t come in contact with it. I surreptitiously rubbed my silverware to make sure they were clean enough. Is anything clean enough? Have I become OCD about Rich and his environment? Who thought this was a good idea?! Haven’t we seen the show on 20/20 on how dirty restaurant menus are?!?Where are my Lysol wipes??

The entire night felt like one of our kids’ video games with dangers everywhere, just waiting for us to be caught off guard. I’m sure in time, we’ll find that we become more accustomed to being out in public, surrounded by germs, and more able to resist the urge to shove people out of our way… But I could be wrong. Maybe I need to get Rich a portable bubble.

Despite my sudden germophobic tendencies, we ultimately relaxed and enjoyed our meals. There would be no sharing of plates in our cootie-free world, but the restaurant kindly divided things we wanted to share… not the same as the usual picking back and forth, but it would do.

At the end of the evening, Rich was happy but tired. We would rest well.

Or so we thought. Despite the mega doses of lomotil AND immodium, we were up all night as Rich prayed to the porcelain gods for deliverance from this draining hell. Despite ‘round the clock medication, the intestinal disorder , the Big D, continues. The medication is increased yet one more time…. Five lomotil and eight immodium throughout the day, round the clock. Alarm clocks wake us throughout the night so meds can be taken on time. We are both literally dragging our asses throughout the day. We keep in touch with the stem cell team daily.

Finally, we’re referred to a gastroenterologist who stops the pill-a-thon Rich is on and prescribes tincture of opium. Or as he calls it, “The Plug”. And it works. Of course, being opium, the stuff that finally allows you to leave the house and enjoy yourself also puts you to sleep. We add another irony to our list. Sleep is healing and much needed after so many interrupted nights so it is not totally unwelcome. We try to extend the amount of time between doses and there is an almost immediate reaction. And as with all medications, as time goes on, there is less effectiveness. How many more drugs are out there for us to try and which one will be the one that gives a permanent relief? We know we’ll find a balance soon.

An endoscopy and colonoscopy is scheduled for this week to ensure that there are no underlying causes beyond the stem cell recovery for this latest adventure. In the meantime tests and cultures are being done to check for those microscopic clues as well. Also on the agenda is a meeting with the stem cell team. We’re keeping fingers crossed for some of the other restrictions to be lifted, answers to be found, balance to be maintained. At 81 days post-transplant, so much closer to the 100 day milestone, change is coming!

A Sob Story

Ten years ago, on our first journey through cancer, I had called Rich from work to check that he’d taken meds and make sure he was comfortable. His voice sounded off…

“What’s wrong” “Nothing”

“Your voice sounds odd, what’s going on” “Nothing, I’m fine” “But….” “I’m just watching TV” By this time, he voice was all choked up. “What are you watching?” “Just a home makeover show” “And…” (sob) “They really liked it.”

Now, I get teary over heart tugging commercials, sappy as they may be. Chickflix and a good cry are high on my list of a good time. Nothing is as cleansing as bawling your eyes out over some ridiculous romcom. Not for everyone tho’… not for my partner. The conversation above was our first indication that there was a chemical reaction going on. As we’ve discussed before, prednisone is usually the culprit. It’s known to either depress the adrenals as Rich has experienced, or will stimulate them and give the gift of energy coupled with a soupcon of restlessness. Sometimes a maddening combo… a little bit of both.

The medications in our current arsenal also include some culprits. But it’s not always about the medication. Our Stem Cell guru likened it to a post-partum depression…. Not too far- fetched since Rich has effectively given birth to himself. Whether these short term depressions come on because of medications, hormones, medications or sudden health incidents like a stroke or heart attack, the accompanying weepiness can be disconcerting at the least and devastating at the most. Patients report that there is no despair or feeling depressed when this weepiness comes on. These same people say that they are so thankful to be given another chance at life. So why? Where does the need to weep come from following a health change?

It’s said that there are three types of tears… basal tears are those that keep our eyes healthy by blocking out bacteria that could be harmful, reflexive tears are those that protect our eyes from irritants like dust or the fumes from cutting onions, and emotional tears … these are the ones we’re dealing with today. Emotional tears are known to have higher levels of adrenocorticotrophic (ACTH)than basal tears. This is a chemical that is also associated with stress hormones… it actually triggers cortisol in the adrenals. So by ridding your body of ACTH, you are lowering the stress hormones which are known to affect blood pressure, immune system, nervous system and food metabolism.

It would seem that the body knows what it is doing initiating these weeping episodes. What a marvelous machine the body is that senses an overload of stress hormones before we even know it’s there!

Like all side effects, in small bits they are manageable. But when it interferes with getting on with life, then it’s time to take back control. Thankfully, again there is an array of solutions to choose from.

Our Stem Cell Guru prescribes a counterattack and in time we’ll find that our family dynamic will be back to normal. That normal would be me sobbing on the couch while Rich says “hmmm, sad” as we watch an entire ship of passengers sinking once more to the bottom of the North Atlantic.



A Crock of Shit

Chuck Palahniuk wrote “Crap has always happened, crap is happening, and crap will continue to happen.”

In the middle of the night, there is a quick rush to get untangled from sheets and get to where you need to be. Sometimes you get there in time. Sometimes you don’t.

At first, the inconvenience of it is an annoyance. As time goes on and the crap just continues relentlessly, you get tired of the need to be near your porcelain pal. When the intestines are not on overdrive, your stomach decides to act up. If it’s not one, it’s the other. Worst are the moments when they both stage a revolt. The doctor assures you this is par for the course.

Your taste buds begin to come back. Flavors are starting to become familiar once more. But in a cosmic joke, your appetite is non-existent. Despite the reawakening of those taste buds, you have no real desire for food and your current situation makes your diet a mild one of innocuous foods. Dietary changes have not made any difference.

Cultures are taken and the dreaded c.diff bacterium, the Golgothan shit demon, is not detected. You’re cleared to start probiotics and given an uber-immodium to take. But this is not a prophylactic medication, you can only take it when the crap begins to hit the fan. So it slows it down, shortens the amount of days it lasts, but it doesn’t keep it from starting up. It’s not an immediate fix. And it does nothing for your stomach.

After three weeks of this, you find that your energy is gone. Those walks around the house are few and far between. Those five steps up and down are on hold for now. The progress you made in stamina and endurance has regressed. You are less steady than you have been in a while. Days are filled with naps.

You monitor your sessions by keeping a calendar diary of your digestive system. You call the stem cell team every few days to check in with the current status. At this point, it’s a fact finding period of time. Maybe the data will reveal a better path to take.

Prior to the in-patient seven day chemo marathon, you were given medications to protect your mouth, stomach and intestines from the beneficial poisons. These are the meds that

thickened the membranes to keep any ulcerations at bay. They did their job. They did it well. They are also the meds that began this upset, playing with your carefully balanced internal bacteria. We begin to hypothesize. Maybe the return of taste buds indicates a return to norm. The thickening of the membranes began in your mouth and worked their way through your system. Could the needed balance begin the same? Could it work its way through your system and put an end to this? Is it starting now? How much longer will this be our norm?

At fifty days post-transplant, this is not where we thought we would be. It’s hard to keep spirits up with this unrelenting discomfort. Our task is now to find either a resolution to the physical ills or the spiritual ones. If there is a pattern to these sessions, we need to find it and make the most of them. If there is not, then we need to find our way to living fully with the uncertainty of each day. The humanist and philosopher Erasmus, who was also known by the very flowery Desiderius Erasmus Roterodamus… a name that brings a smile… wrote “There are some people who live in a dream world, and there are some who face reality; and then there are those who turn one into the other.”

So now the plan is to be amongst those who turn the dream world into a new reality. ‘Cuz this reality is full of crap!