Author: usewhatexists

The tomorrow we both wanted and dreaded has come and gone and a new tomorrow is here. Oh Brave New World! The three days of RICE infusion were uneventful… unless you count the goofiness of our sons while Rich was zonked out on the pre-chemo meds Benedryl, Decadron and Ativan. After a full week in the hospital, it’s good to be home.

Once we moved from the 4th floor Cardiac ward to the Leukemia and Lymphoma ward on the 7th floor at North Shore, we were able to see a bit of what life will be like during the stem cell transplant hospitalization. On our walks around the ward, we passed the rooms where the transplant patients stay… an outer room for scrubbing, sanitizing and putting on masks and gowns leads into the private room of those isolated patients working hard to build up their immune systems. Within the next month, we’ll have our orientation to find out more of

the details of Rich’s stay and put together all the pieces of the puzzle we’ve seen so far.

The nights on the 7th floor are quiet but also busier than on the 4th. Everything is constantly measured and quantified. E.v.e.r.y.t.h.i.n.g. Intake, output…. nothing is sacred. We were woken three times each night for a vitals check. Thankfully we were both able to fall back to sleep quickly. It’s understandable…. You’re on a 24 hour drip of meds that can do some serious damage and these nurses are there to minimize it as much as possible while allowing it to do the job at hand. They are angels who do everything they can to keep their patients comfortable and do it with a smile.

Our team has decided that since Rich’s recent PET scan showed no signs of cancer, he will have just two cycles of RICE before we begin harvesting cells. When we say the team decided, it’s more like our oncologist finally agreed when he saw the excellent results of the PET scan. He told us he had been driving everyone nuts insisting on three cycles of RICE. Shortly after, we met our stem cell doctor in the hallway. She said “He’s insistent on three cycles, we’ll have to go with three cycles.” No, no, no… he just said that he’s agreed with two. “Oh for heaven’s sake, he drives me nuts!” Yeah, he agreed with that too!

Cycle one infusions are complete and the watch begins… blood testing will be done basically every couple of days to monitor the ever important counts. They’re expected to fall and then begin their climb back up. Once they reach the proper levels, we begin cycle two. We know that the blood counts will go down and that we’ll need to be vigilant for bacterial, fungal and viral infections. Oddly, cancer.org has a pdf that advises that the patient, at the time when counts are off, to avoid wrestling, boxing and playing football. Duly noted. Thanks.

We keep looking for information on what to expect as far as side effects for this new regimen. One popped up immediately…We looked up some information on the hiccups that have come back with a vengeance despite the four times daily use of Thorazine. Randomly throughout the day and night, Rich has been barking like a seal. It’s easy to see that, while the sound is amusing, sometimes the muscle contraction that goes along with it is not.

A number of the medications given to forestall nausea prior to and during the infusion of chemo do indeed cause these hiccups for a few days following the end of the infusions and, if stopped, will allow the nausea to take hold. Some of the new meds in our chemo regimen also cause hiccups for a few days following the last dose. Research turned up a consensus that the hiccups are actually an alternative to nausea and vomiting… if you get the hiccups, you don’t get the nausea. Ok, that’s a fair tradeoff and we’ll take it. We’ll see how long they last.

A new side effect that started just today is a muscle tenderness… a different pain where it’s tender to the touch. We’ve not had that in our journeys to date. We’re trying the various pain meds to find the magic key. At this point in time, although we know our acupuncturist uses new sterile needles from a sealed pack, we’re still wary of any opportunity for infection. So our secret weapon is not available to us. Some feel that it’s another temporary effect that will fade after a few days. Fingers crossed!

OK, so it’s really NUMB fingers crossed. The peripheral neuropathy that started with the tingles in the fingers and toes is now full on numbness and pins & needles to the wrists and ankles. Part of the spread has been because of the lack of the B6 and B12 supplements during Rich’s hospitalization. Vitamins interfere with chemo so even multivitamins are stopped two days prior through two days after any chemo infusions. We’ve had some good experience with neuropathy subsiding as he starts the regimen again so we expect that will be true again.

Tomorrow we have another appointment with our team. Blood work will be done prior to our meeting so it will be interesting to see which way they’ve gone. We’ve been told to expect to need transfusions as the counts drop between this past cycle and the next. This is just one more indication that the beneficial poisons are doing their job. So far, we’ve been pleased with the results so no reason to complain now. Besides, with all those years of depositing gallons and gallons in to the blood banks, it’s time for a withdrawal!

It’s real wrath of god weather outside… the skies have opened up and the thunder and lightning are seemingly non-stop. Our sons have just left for the night. We turn the lights off in our room and, through the almost floor to ceiling windows, we watch nature’s light show. We’re both in deep thought but we know what we’re both thinking. Tomorrow.

We start our real path to the stem cell transplant tomorrow. Although Rich is still on two of the four antibiotics and is being closely monitored, his counts are good and his strength is returning… Which means the wizards of oncology and stem cells have decided that we will stay three more days in the hospital but will be transferring to the oncology floor to start RICE chemo. So come morning, we’ll be moving to a new room on a new floor, a new protocol, and, for the next three days, a new routine.

Three days.

In reality, everything going forward is a new routine. O Brave New World!

For all our frustration, now that we’ve got what we wanted, we’re stuck with… what we wanted.

We’re thankful that the counts are good, the infection is fading, the antibiotics are working and his strength is returning. We’re thankful that we’re in a place where we can start what needed to be started two days ago and that little time was lost.

But OH! It’s tomorrow!

Maybe it comes from the lack of outside air, but our brains are having difficulty processing that one little thing….

Tomorrow.

We’re prepared… enough clothes for both of us, toiletries, our bag of chemo tricks, our scrabble game, our photos and talismans are all with us.

So now we wonder.

Tomorrow.

Tomorrow? Soon enough that will be yesterday. And we will have gotten everything we wished for!

It’s very difficult to give up all control even when you hand it over to people you trust implicitly.

But when things start to make no sense, when information doesn’t seem to get communicated properly and, despite the excellent care of the nurses, you just aren’t comfortable with how things are going on a certain level you find yourself finding fault all over the place… your frustration with one aspect manifests itself elsewhere.

When you’re admitted with a 103.4 temp, you just want answers. You understand that they take time. You submit to tests… even when it includes a Q-tip waaaay too far up your nose… is it really supposed to go there!? But when you finally get settled into your room and the nurse insists you had chest pain, you wonder, did I? No, you’re sure you never have in your life. And you didn’t.

Then it turns out that the notes in your file say you have pneumonia… and atrial fibrillation… oh, and atrial tachycardia. Lung and heart a mess. The cardiologist tells you that you need to ignore those notes… the EKG looks fine, the radiologist report indicates no development of pneumonia. Yes, there is something brewing and we’ll treat it as such, but it’s not pneumonia… more like pre-pneumonia. The EKG was done during episodes of high fever and shivering so there were muscle spasms to add a touch of wonkiness and current monitoring shows no issue. A MUGA scan is ordered to calm fears for the stem cell transplant… it comes back reassuringly the same as before. Then the cardiologist leaves and someone comes in to give you a pamphlet labeled “Living with Heart Failure.” OY! You wanna scream “I’M NOT A CARDIOLOGY PATIENT!!!! I’M A HEMATOLOGY PATIENT!!!”

So, you get to the point where you trust the cardiologist… after all, he makes the most sense and never discusses chest pain. But you aren’t a cardiology patient… why doesn’t the hematology department have a stronger presence? Where you thought that they’d only been in to see you once, turns out it’s been once a day. But for some reason, you just can’t remember seeing her. Chemo brain is rearing its head… yes, you have trouble retaining information… but then why does the cardiologist’s words register? How is this one doctor so ethereal that we don’t remember more than snippets of information and a vague sense of “oh yeah”?

As you begin to feel better and the time goes slowly, it’s so easy to let the frustration take hold. This isn’t where you choose to be so negativity can begin to sneak its way into your psyche.

We resolve to find ways to let this wash over us without allowing the small irritants to find a place… we need our own place of peace to heal.

Once, years ago, at a yoga class, Rich and I were participating in guided meditation. We lay on the floor, our legs going up the wall. Eyes closed, we followed the teacher’s voice as she had us find our issues and carry them with us up a mountain. Visualizing, we climbed the mountain with its obstacles… over boulders, through brush, struggling our way up the mountain with our burdens, the trail getting steeper and steeper, each step more difficult to take. In our minds, we were traveling for days, making our way step by step, up and up. The teacher told us that it was nighttime as we reached the summit. We were to observe the majesty of the universe, marvel at the multitude of stars. Then she told us to find a space between the stars, find a void in the heavens. We were to throw our burdens into that void, wish them well and let them go. Then, with one last look to the constellations above, we were to make our way down the mountain. We were to feel the freedom from burdens and run, sled, cycle… find our own means… and rejoice in the speed of the recovery. Laugh, sing…. Celebrate the lightness of being.

When we left the yoga class, I asked Rich how he came down the mountain.

“What do you mean?” “We threw our burdens to the universe and let them go and then made our way down the mountain. How did you go down the mountain? I ran, jumped and rolled. What did you do?”

“I dunno, after I threw my burdens to the stars, I fell asleep. That was a long walk up the mountain!”

So while we wait for word on when Rich will be released from North Shore and when we can restart the chemo, it might be time to hike that mountain and send some frustrations out to the void between the stars.

This past week, Rich unwrapped a small package that was so full of meaning and love and laughter. It was a little small pony, running… mane and tail flying… carved of Red Jasper sent to him by our dear cousin Denise. With it was a story:

Once there were five-year-old twin boys, one a pessimist and the other an optimist. Wondering how two boys who seemed so alike could be so different, their parents took them to a psychiatrist. The psychiatrist took he pessimist to a room piled high with new toys, expecting the boy to be thrilled. But instead he burst into tears. Puzzled, the psychiatrist asked, “don’t you want to play with these toys?” “Yes,” the little boy bawled, “but if I did I’d only break them.” Next the psychiatrist took the optimist to a room piled high with horse manure. The boy yelped with delight, clambered to the top of the pile, and joyfully dug out scoop after scoop, tossing the manure into the air with glee. “What on earth are you doing?” the psychiatrist asked. “Well,” said the boy, beaming “There’s got to be a pony in here somewhere!”

There’s more to the background of this pony, it’s meaning for Denise and how much that history touched us. But best of all, was the laughter we had when we read the story above. At a moment in time when we’re kinda prepping to wade through a ton of shit, how fun to find our pony! That it is Red Jasper has significance as well, ”Jasper, a stone believed to detoxify and strengthen the body, while providing comfort to the soul.” Perfect!

Two days later in the early hours of the morning,we went to the ER. Rich was running a temperature that Tylenol was not relieving. When he was admitted, his temperature was 103.4. An x-ray and CT of his lungs was done, blood and nasal cultures taken. Four different antibiotics pumped into his IV over the course of the day. Blanket upon blanket piled high as he shivered and shook. Questions questions questions were asked and answered over and over. Each time a shift came on duty, it began again. EKG’s were ordered multiple times… each time some wonkiness found. Finally the cardiologist stopped in. After a few questions, he calmed our worries. He felt the irregularities were part of the fever and the shaking from the fever chills. And then came the kicker to end all kickers. “So,” he said, “the PET/CT scan results from Thursday look good.” “Oh good… that’s nice.” “Didn’t anyone tell you?” he asked. Nuh Uh. “There’s no sign of the cancer at all.”

So while today we don’t know if the next cycle, now of RICE, scheduled for Tuesday will be put on hold due to whatever is causing this fever, we do know that now we go into our next phase of our stem cell journey armed with a faithful steed… we found our pony in the pile of shit… bring it on!

 

Medieval maps would show dragons or serpents in the far unreached and unexplored territories as a warning of danger and the unknown. There, in calligraphic splendor would be the words “Here Be Dragons.” We now know in our journey, we’re about to meet some dragons.

This week we met with the head of the transplant team and, while the wizards of oncology and stem cell transplants have to confer one more time, it looks like July 1st we take our first steps into the unknown this time around. We’ve had the comfort of our previous experiences to be with us on this journey so far. Now we step, like Indiana Jones in the Last Crusade, across the abyss with a leap of faith.

While there’s a whole lotta paperwork to read through and a tonnage more to sign off on, a few tests and appointments to make, we now turn our faith completely over to the transplant team. They have already contacted the insurance company and ensured coverage for this journey. They will set up a CT/PET scan to track our progress to date. Hospitalizations will be arranged by them as well. They have taken over much of the responsibilities that we’ve had on our shoulders so far. While that support is certainly welcome, we now give up control. Let go and let God. May the Force be with us.

The meeting itself was an extreme case of information overload. Once home, we wade through a bunch of gobbledygook, notes scribbled as fast as possible, and untangle our understanding of the process as we try to find a comfort zone in the unfamiliar. In the office though, once the nurse was done going through the basics and stepped out to take a call, I looked at Rich and said “I need a timeline! I need a timeline!!!” Our first impression was that we were going to be jumping into the stem cell process much sooner than we thought…. Wait a minute! No RICE therapy? No outpatient chemo? What happened to the three more cycles? WE NEED A TIMELINE! WHERE IS OUR TIMELINE???

I’m sure we both had some excellent deer in the headlights impressions going on. The stem cell doctor came in and we realized the nurse was giving us just the info on the stem cell procedures – the doctor discussed our next steps… yes, RICE for two cycles, two weeks apart each were her recommendation before we begin the stem cell process. This had been discussed with us at our last meeting with our oncologist. Our nemesis Prednisone… the maker of mood swings, water weight, bloating and exhausting joint pain… will be a thing of the past. BuhBye… and hey, on your way… go check out those dragons over there!

RICE… Rituximab, Ifosfamide, Carboplatin, and Etoposide. It will be administered over a period of three days. The first day will be as an outpatient at Monter Cancer Center as our RCHOP has been. Days two and three will be as an inpatient admittance. Some of the infusions are for a full 24 hours hence the overnight hospital stay. In between cycles, blood tests will be done to monitor levels on days 5,7,9 and 10 post chemo. Neulasta, the bearer of bone pain relieved by Claritin, will get doubled up to create as many stem cells as possible. Our friends Benedryl, Ativan and Emend will follow us into the unknown and keep our patient comfortable. They have been invaluable so far. We’re glad to hear they’ll not be left behind.

During this time is when we’ll have the new CT/PET scan. We look forward to seeing the progress that’s been made on eradicating our unwelcome guest! Radioactive voodoo drinks and injections… makes us nostalgic for our early days in this journey. We’ll be seeing our lead lined boxes in our lead lined rooms once more! Biohazards galore!

And then, the harvest. This year, harvest time comes early. For us, once the two RICE cycles are completed and the Neulasta administered in the double dose, the harvesting begins. If all goes well, it should be before the end of the summer. Stem cells will be collected from Rich’s blood in sessions lasting 4-6 hours. Two to four sessions are the norm to gather enough cells for reintroduction during the autologous (ie: self donated) transplant. Enough being two to five million per kilogram of patient weight. These cells will be frozen awaiting use. But the wait is not long… within a week of the final harvest, Rich will be admitted into the hospital. The harvesting itself is a familiar one to Rich. For decades before his first NHL diagnosis he donated blood as well as platelets during apheresis. At least 20 gallons over the years… after his diagnosis he was no longer a candidate. For the first time in ten years, he’ll be an apheresis donor again. Only now he’s also the recipient.

In addition to the medi-port he already has, he’ll now get a triple lumen catheter installed in his chest for quick access for blood work, chemo infusions, transplant infusion, nutrient replenishment and the expected blood and platelet transfusions during the recovery process. Our One of Nine Borg is to be further assimilated.

His first week in the hospital will be a seven day double dose intensive chemo session of yet another protocol of Cyclophosphamide (CPA), Carmastine (BCNU), and Etoposide (CBV). This will ensure the eradication of the cancer cells by actually altering their DNA. At the same time, it will also kill the bone marrow. The idea is to take Rich literally to the brink… face to face with those dragons and sea serpents. A couple of days to gather strength and, as the documentation inelegantly states, “excrete the chemotherapy agents” and then the transplant. Whatever cancer is in those transplanted stem cells is apparently insignificant and will die off. They’re not enough to bring our nemesis back. What a marvelous time we live in that these protocols exist! Our grandfathers both fought in World War I… during the introduction of mustard gas as a biological weapon. That same poison will now be one of the beneficial chemo drugs that will be used to kill off the NHL cells.

The day of the transplant is day zero… A new birthday. June 20th we celebrated Rich’s 60th birthday. Will our Gemini now become a Leo?!

From that point forward, the job is simply to recover… bring those cell counts to where they need to be. Simple as it sounds, the first two weeks after the transplant will be the low point… mega-flu-like symptoms and largest risk for infection. As the counts rise and the stem cells begin to replicate, those symptoms will begin to alleviate. Medications will be on hand… anti-nausea, anti-flu, antiviral, antifungal, antibacterial, antibiotic, anti-whatever you can think of. The doctors and nurses will have one job, to keep our Borg healthy and comfortable. All told, we expect a month in the hospital. We rejoice that visitors will be allowed, wifi will be available and entertainment on tv and the internet will pass the time. Only our beloved grandchildren will need to keep their distance. Video chats will need to be set up so we don’t go into Boober/Bean withdrawal!!!

During that month, changes will happen at home: De-cluttering and top to bottom in-depth cleaning to create as sterile an environment that a home can have. House plants will be relegated to the outside garden as even their soil harbors bacteria. And the cleaning will continue non-stop as Rich continues to recover. Kitchen Clorox cleaned every day. Bathrooms Clorox cleaned every use. Windows kept closed. Food will need to be modified as well. No fresh fruits that can’t be peeled (and no, Rich, peeled grapes don’t count). No fresh veggies… frozen and canned only. No raw fish, no rare meat. No take-out. No leftovers. Which means we’re gonna need a lot of creativity and, before hospitalization, definitely some sushi.

Two months post-transplant before any crowds. Four months post-transplant before any restaurant visits. The first 100 days post-transplant are the most crucial for avoiding infection. It will take one to two years at minimum to have close to a full immune system. Inoculations and vaccines will need to be re-administered after his first birthday.

Whew! When it’s all laid out like this, it seems daunting. But as with any journey, you take it all step by step. So our first step is to initial, sign, and date the mound of paperwork we’re given to document our consent to go forward. Like agreeing to drink radioactive voodoo, it’s counter-intuitive. But we always remember… if a small Hobbit can bring down a dragon, think what our Borg can do!

This week has been full of milestones. When I think of milestones, I remember the French card game we played as kids, Mille Bornes, which was basically a car race of the eponymous thousand miles played out in cards… Cards of milestones. The game could be extended by the player who reaches that goal first… just as our journey has the potential to be extended for a number of variables. Along the way your opponent plays attack cards against you… flat tires, out of gas, and so on. You always hope you’ll have a safety card in your hand to get you once more on your way. But the image of the milestones pictured on these cards stay with me as we navigate our own race.

So, our milestones…The biggest and brightest is that we had a blast at Richard and Noelle’s wedding this past weekend. The travel plans all synchronized like Esther Williams’ backup swimmers. We zipped through security, pre-boarding and arrivals with nary a glitch. It was a wonderful weekend full of friends and family from all over the country. To see so many people gather together, multiple generations, to celebrate this fantastic couple made our hearts sing. Rich partied, danced, and celebrated with the rest of us. That he basically slept for the next four days is irrelevant. That he was there and participated to his fullest with a smile a thousand miles wide was all that mattered.

Once we got home, we completed chemo cycle three. We made sure that everything was properly in place before the infusions began and for the most part, the days were unremarkable. To pass the time we brought our digital picture frame filled to the brim with photos from this past weekend. Our friends and family were with us.

From what we understand, this milestone defines the end of the RCHOP protocol and, in three weeks, the start of RICE. To learn more, we meet with the head of the stem cell transplant team next week. In the meantime we compile our list of questions and concerns. We hope to have a clear understanding of this next phase of our journey to wellness. So far we’ve had known issues and a map that was our notes from ten years ago to guide us along the way. We found new solutions to old outstanding issues and have made this path as easy as possible to date.

Now that map goes out the window and we take the unmarked trail. We know we’ll continue to have a team we trust to guide us along the way, but in the deepest moments of the dark night, we’ll not have the confidence of our past with us. So together we’ll meet those moments of indecision find our way through the pitfalls with our new cast of wisdom and caring… and a little nudge from our internet basket of tricks.

Very few who follow this path to health can continue to work full time, full speed. Each day brings a new moment where the threshold of Can and Can’t meet. Each day, that threshold moves a little closer to the morning light. We’re sure that the period of working full time has come to an end and the focus will begin to shift in another direction. This milestone has taken longer to reach than it did before and we’re grateful for the additional time and pay it has afforded us.

They keep telling me it’s easy but then again, it’s something they do every day. Tonight I have a personal milestone as I injected the latest Neulasta shot into Rich’s arm myself. The idea is to eliminate the need to go to the Monter Center every three weeks and instead administer the injection at home. Mission accomplished…. Though we’ll see if his arm is still attached in the morning!

We’ve also been visited by the last of our old friends… peripheral neuropathy has come to call at last. The milestone of tingling, pain and numbness in the extremities has taken a while for us to reach. As with all the side effects, we have a solution… this time in the form of the maximum daily doses recommended for vitamin B6. We know this helps prevent and push back the neuropathy. Last time, by now, Rich had it up to his elbows and knees. Within this last week it has just started at his fingertips. He’s been taking some B6 in his daily vitamin mix and perhaps this has helped. We now boost it to the maximum. Again we look at this as another confirmation of the work the beneficial poisons are doing. We know that when all is said and done, like the other effects, this one will recede once more.

In Mille Bornes, a card held aside in order to counter an attack card is called a coup-fourré. Joyously as you slam your safety card over the attack, you yell out “Coup-Fourré!” Our box of safety cards in the form of meds grows as we continue our race to the finish and each time we can’t but be joyous as we pull them out of our deck with each attack knowing that this is one race we will win. Milles Bornes will be ours.

Before you know it, the next cycle is here.

As we prepare for our son’s wedding, we also prepare for the third chemo cycle literally as soon as we get back. Although we know each infusion, each cycle means more side effects, more exhaustion, more intensity; we have to celebrate getting closer to our goal. This will be the last cycle of RCHOP for us. After this, we begin a new journey into unknown territory. RICE is the new regimen for the fourth cycle and on the 19th we meet with the physician who will guide us through the stem cell transplant preparation and process. She will work with our oncologist to determine the best route to the best outcome. We trust our team implicitly and we expect nothing but success! We look forward to meeting with her and getting our many questions answered. The list grows as we keep track of the answers we need to comfortably traverse this sure to be bumpy terrain. Milestone by milestone we’re getting there!

But first come the celebrations…and with it, the travel.

Travel is now a whole different ballgame with challenges that we need to prepare for. Some preparation is very straightforward. Some take a little more planning and research to ensure smooth sailing. Again, we applaud the internet’s vast information database; it’s an invaluable tool to get us started in the right direction. Through it we find the right people to talk to, to plan with and to discover what worked for other people. From there we can build on our plan of action. Our main goal is to conserve maximum energy and experience minimal pitfalls of side effects so we can enjoy enjoy enjoy!

Generally we drive up to Rochester, taking our time and enjoying some hikes, restaurants and river overlooks along the way. Sometimes we’ll stop for an overnight to enjoy a favorite location or just to break up the long trip. Sometimes our route will take us through central New York where we can watch the eagles and hawks circling overhead, scouting the lakes and wooded mountains for prey. Sometimes we follow the Hudson, take a left at Albany and then pick up the route where the Mohawk River and the Erie Canal join waters. Or perhaps we’ll take the route through Corning where we’re mesmerized by the glassblowers and into the Fingerlakes region where we take in the beauty of Watkins Glen Gorge, walking those 800+ stone steps, following the water’s course to the lake, perhaps circling around to Letchworth and the Genesse’s gorge before reaching our destination. Each drive has its beauty and its allure.

We’ve taken Amtrak and have enjoyed the slow movement of the train as it continues, despite the weather, on its journey. It follows our river routes and there is a pleasure to be had when you relax in the dining car while the boats sail past, each of us reveling in the meandering pace of our own means of travel and the landscapes so rich in diversity.

But this time the train schedule doesn’t suit and the driving is beyond Rich. So we fly. The differences in traveling while well and traveling with needs are significant. It’s an interesting dynamic. Instead of taking the LIRR to the AirTrain to JFK, and getting to the airport with minimal time to spare, we get car service and plan to arrive well in advance. There a wheelchair will meet us so the walking will be at a minimum. The JetBlue agent recommends we also arrange for stair assist since these small flights can got totally Arrested Development and use staircars. Can we avoid the temptation to chicken dance? Only time will tell.

At the security checkpoint, we need to declare the bottles of Ensure that Rich needs for the trip to keep his nutrients in balance. No terrorists here but we do expect added delays for this exception to the rule. We check our bags so we don’t have to deal with the carry-ons in the overhead. Only a small backpack with snacks and meds (and those Café Latte and Butter Pecan Ensures!) will stay with us. When we get to our destination, we’ve pre-arranged for the hotel shuttle to pick us up, keeping our wait time to a minimum. We’ve booked a suite at the hotel so that we can enjoy the company of our friends and family while allowing Rich to quietly slip away when he needs to rest. We have a sofabed and a crib in the suite to enjoy our grandchildren. Since Rich’s immune system will be completely depressed before the transplant, he will not be allowed to be around children, (those little germ carrying darlings!) so this time is precious. We review menus at the hotel and at planned restaurants to look for those ingredients that can be troublesome. And we carry our faithful buttermilk ranch dressing to dip foods into. For some reason, that neutralizes some of the questionable elements and makes it possible to eat some marinated foods without effect. It may seem like overkill, but we don’t want any hitches in celebrating the kids getting hitched!

So, the plan is in place, the suitcases are filling up, our angel friends who are driving to Rochester are coordinating to bring up wedding supplies, food and drink that we can’t bring on a plane… It truly takes a village and again we marvel at how blessed we are with the friends and family that surround us.

And… before we know it… Kermit will be singing Rainbow Connection and we’ll all be dancing!

Who said that every wish

Would be heard and answered

When wished on the morning star

Somebody thought of that

And someone believed it

And look what it’s done so far…

I’ve heard it too many times to ignore it

It’s something that I’m supposed to be

Someday we’ll find it

The rainbow connection

The lovers, the dreamers, and me”

“I’m sorry to say so but, sadly, it’s true that Bang-ups and Hang-ups can happen to you.” ~Dr Seuss “Oh the Places You’ll Go!”

As parents, there are milestones in your children’s lives that are momentous in different ways. The day they were born, their first steps, the day they marry… on and on throughout their lives you cherish those times when you experience these joys with them… you witness these moments and celebrate them.

We were fortunate this past weekend to gather our family and friends to celebrate Nick’s graduation from Cooper Union. We looked forward to watching him walk with the class of 2014 on Wednesday. But to our dismay, cancer changed the plans on us.

A few of Rich’s chemo drugs in his pantheon of alchemy cause a certain intestinal distress we’ve not had to deal with in that form during any of our journeys to date. All of that security came crashing down on us Monday night and continued on, and on, and on, seemingly non- stop, for two days. We combatted it best we could with over the counter medication as advised but there didn’t seem to be any change. We struggled to keep Rich hydrated and his electrolytes stable. We checked in with the doctor’s office regularly. Unless he ran a high fever, or became severely dehydrated, there was nothing else to do. When we were getting close to a forty-eight hour marathon, we were told to double the dosages. After a number of hours as Wednesday came to a close, finally there was an effect… after Nick had already walked for his degree.

It was a devastating realization that Rich would be unable to sit in the Great Hall with us. Then we put it into perspective. Illnesses happen all the time… illnesses that are not life threatening… and people have to miss events in their lives. While not the outcome we wanted, we had to change our view of this setback. How could we experience this together while apart? How could we adjust our thinking for this exhausting physical development?

First the physical… whether it’s true or not, we don’t know, but we choose to believe that this extreme colon cleanse is Rich’s body’s way of ridding itself of the dying cancer cells. We visualize them sloughing off and being carried through his body which is certainly anxious for them to go. Perhaps we’re not thrilled with the means and violence of it all, but we rejoice in the healing that is sure to follow. Only more tests and time will show the truth of this theory, but we realize there is less stomach pain lately. It’s been a week without acupuncture because of the holiday weekend and Rich’s illness these last few days. And yet, again, there is minimal stomach pain. Is that because we’re avoiding food and drink that will cause that pain? Maybe, but we’d rather focus on the healing that we’re sure is happening.

As for experiencing it together… we’re blessed to be living in a time when that is possible even when apart. Cooper had a live feed of the ceremony that Rich could watch from home. Laptop hooked up to the TV for a nice size viewing screen. Smartphones at the ready, we texted throughout…. “Will that speaker ever stop talking?” “They’re starting the Electrical Engineers!” “Ten more people to go.” “Did you see Nick?” It was not optimum, but we were able to communicate and experience our son’s graduation from college, each in our own way, but connected.

The photos of Nick in his cap and gown do not include his father, but the tired smile of a proud dad as he sits at home later with his son is priceless.

And that is enough.

Sometimes life just interrupts your cancer journey and what a welcome interruption that is!

First you have to deal with the business at hand… Cycle 2. When you get to the treatment center, you first have to get bloods drawn. You have to be reasonably healthy in order for them to pump you full of the magical voodoo juice for hours on end. If your counts are too low, the cycle can be delayed ‘til they’re up again. You pray that this process will go not one second longer than necessary with no delays. So you are literally on pins and needles until you get the go ahead for your round to begin.

Once seated in your reclining chair, you have some time to get yourself settled. The nurse comes by and with you reviews your complaints and successes since last you sat here. Your vitals are taken and saline bags are set up on the pole. This is the point when you’re glad you have a medi-port. Not only does it leave your hands free for this long day, but it’s less painful when the needle goes in and less bruised afterwards. Before you go to the center, you cover the port site with a thick layer of Emla cream and by the time you’re being stuck, the cream has numbed the area. Even so, there is less fiddling and it’s more straightforward. Definitely an improvement.

You’re asked to spell your name and give your birthdate each time a medication is given to you. Sometimes there are some pre-infusion pills, sometimes there are meds that are pushed through your IV with a syringe and sometimes other bags are added to your pole to mix with the saline. Some of the meds make you conk out for a while. Sometimes they ask you to spell your name while you are under their spell. Then your answer could be something like Rich’s in Cycle 1…. “D…e…t…o..m…m…n….n…..n….a………s…….o…..r…………….., R…i….t…..c…..h…….a…r……d…………………..t” followed by a very sappy and very pleased grin. The nurses dutifully write all this down then scurry back a few minutes later to verify the information. Sometimes they ask you to spell your name a little later in the process as the rest of the medications are added in. Then the response could be something like Rich’s in Cycle 2…. “snork (drool)” He repeated that one twice until they realized there was going to be no sense coming from our sleeping beauty! Apparently timing is everything. A combination of Benedryl and Ativan knock you out for at least three hours.

It’s important for someone to be with you even if you are sleeping through most of it. While you’re snoring away, someone has to spell your name and check that the medications are what they should be. When you aren’t sleeping, and on our second day of the infusions there’s no Benedryl so generally more alertness, there are still times when you need someone to advocate for you. The nurses are wonderful, caring and attentive people… angels in scrubs. But they don’t know you like family and friends. They don’t detect those slight alterations to your demeanor that signal distress. They don’t/can’t spend the entire day by your side. And much as we trust them, mistakes can be made. And if you’re a happy, drooling, snorking patient, you won’t notice. Your caregiver has to be prepared to question, demand, oversee and advocate for you. During Rich’s second cycle one of his meds was given in a quick six minute push instead of as a four hour long infusion. It was the first day the new part of the treatment center was open, everyone was a bit discombobulated and that threw us off as well. Lesson learned… gotta be more vigilant. Our oncologist’s nurse says an investigation needs to be done as to why that happened. We move forward and decide each cycle we’ll discuss all meds and modalities before any bags are hung on the pole. There are ramifications that can’t be taken for granted.

The day can be long. Sleeping does shorten it for the patient but you are glad that you have TV, magazines, that you have your faithful travel Scrabble; your phone is filled with ebooks. The lunch you have with you helps the time pass as well. Snacks are readily available. Nurses stop by during the day not only to check your vitals and mark the progress of the drips, but also to see how you’re doing. Not just your nurse of the day, but there is a family feel to the center and nurses who have treated you before stop in to say hello. The time passes.

At the end of the day, you’re given your discharge papers with instructions for continued care at home.

You’re tired… though you’ve slept, you’re still tired. Sometimes the prednisone gives you a boost of adrenaline and, like Rich this last cycle, you come home and decide to do some yard work. Sometimes the same drug depresses your adrenals and you just crawl into your recliner and check out for a while. Sometimes it’s a very odd combination of both.

Twenty-four to forty-eight hours later, you have to get an injection to boost your white cells. Rich and I learned how to do it so that we can administer the shots at home. It will be three weeks before we need to go solo so there’s time to get used to that idea. Rich was hoping to reenact Nicholas Cage’s moment from The Rock where he injects himself, but apparently this medication is given subcutaneously so that won’t be happening. Maybe we’ll give him a couple of green flares to pose with instead… or at least a coupla sparklers.

And now the non-patient time begins… a day of appointments halfway through to the next to monitor progress and health, but otherwise, the routine of controlling the side effects starts anew. Getting the infusions is most times the easy part… it’s the in-between that is the harder.

When you have friends and family gathering to celebrate life events, it’s also a joyous time. This cycle in particular will be a busy time for us. We welcomed our family home to congratulate Nick on his graduation from Cooper Union and introduce our newest grandson to all the angels in our life. It was a hectic but wonderful weekend as our house was full to bursting. Rich pushed himself to be a part of everything, taking a rest when the energy ran out. With a three day weekend, there was time enough to take it easy when everyone was gone. Wednesday we’ll proudly be in the audience at Cooper‘s Great Hall to watch our graduate walk for his diploma. The next two weeks the task at hand will be to gather strength and reserves to then go to Rochester for Richard and Noelle’s wedding where once again, we’ll celebrate our family’s joy with so many of the people who mean the most to us.

These moments carry us through from one cycle to the next. When pain and exhaustion take hold, and it does, the anticipation and the memories of these times lift us up and remind us of the importance of the community of loved ones around us. The combination of reminiscing about our life together and planning for the years yet to be fill the hours with love and gratitude for the times and the people who take this journey of life with us.

I’m tired, Tired of playing the game Ain’t it a crying shame I’m so tired God dammit I’m exhausted! ~ Lili Von Shtupp in Blazing Saddles

The journey through cancer is an exhausting one; the fatigue that the patient experiences go way beyond any other tiredness. It’s not relieved by sleep. Often, it’s not due to any activity at all. It comes at you like a brick wall and when you hit, you’re done.

Tumors are thieves. There are so many ways that they sap your energy. The pain that they cause is exhausting. They steal the nutrients that your body needs and you find yourself severely anemic. The battle your body is waging as the chemo drugs attack the cancer cells takes from your limited supply of strength. The drugs you devour by the handful to counter the chemo slowly drain your stamina. Your vitality is limited.

The toughest part of that brick wall is the dynamic between knowing what you could do and learning to accept what currently you can’t; feeling powerless to do what came so easily just a short time ago. Learning to delegate, modify, prioritize and let go is one of the hardest lessons that cancer offers. But it’s something you have to learn. There is really no choice. But OH, how hard it is to stand by and watch instead of do! You find you have to dole out your energy in small bits and very carefully.

Rich has been going to work each day that he doesn’t have appointments and, in the three weeks since round one, he’s missed only one day of work because he wasn’t well. He just keeps on plowing through the muck and miasma that cancer has him plodding through. And laughing when he hits the quicksand.

Is the difference between this and ten years ago that we’re forewarned and prepared? Is it that our company and co-workers have stepped in and taken the physical part of his job off his shoulders? Is it that his commute is now by train where he can rest? Is it that a body in motion stays in motion? How is it that he can work so many hours this time around?

He’s hit that brick wall any number of times over the course of the last three weeks.

Sometimes at work and sometimes at home.

But always able to move beyond to get through the day.

We’ve prepped for round two which starts today; getting the picnic set up and packing up our bag of tricks. At this point, we kinda step back and reflect on our journey so far. While we’ve had a few tough days, hours, minutes, moments, overall our experience from ten years ago has served us well. We can’t help but compare our two voyages and see where they differ and where the comfort of sameness exists.

We did learn to balance the times to be active with times to rest. Could the acupuncture increase energy levels as well as alleviate pain? Is it because the Claritin relieves the deep bone pain and that releases more vigor? Is it that the sum of the parts, these parts, are really ultimately greater than the whole? Still a puzzlement!

One thing is a certainty in this very uncertain journey… the time that everyone gives us is the best medicine of all. Whether it’s going out to dinner, taking us to/from chemo, helping to run errands, stopping by for a visit, a call, an email, a comment, a message, a hug… it’s like a pit stop of energy that supports us and raises us up. The gift of time from friends and family… priceless. Thank you all for stopping by here and there and being a part of this journey with us.

And now it’s time to catch a thief!