Author: usewhatexists

There is a particular certainty to cancer that can sometimes be comforting. We’ve talked about how “old friends”, certain side effects, from our last journey into chemo have visited us this time around. We take these as signs that the beneficial poisons are doing their job, and ensures us a positive outcome as it did last time.

With absolute precision, when you are on the receiving end of RCHOP, your hair starts to fall out day fourteen. Literally day 14, you can lightly tug on your hair and get more than a few strands coming out. Each successive day, they come out faster. By the end of the week, your head is for the most part a really patchy bald. It’s not without some warning. The texture of your hair starts to change. For men, their end of day stubble is generally softer and less new growth. Some people feel a tingling in their scalp first.

It does take a little longer for facial and body hair to completely shed. Other than the apparent visual changes, you find that there are other-not-so-discussed effects of losing your hair. That your head is colder comes as no surprise. But as you lose your body hair, you find the rest of you gets chillier also. Oh, but just think of all you’ll save on not having those regular Brazilians!

With no eyebrows or eyelashes, any sweat goes right into your eyes from your forehead. So much for Jeff Goldblum’s character in Jurassic Park with his chaos theory.

Without nasal hair, your nose just keeps dripping. There’s nothing to hold anything back until it’s absorbed. Skin is much drier, nails develop ridges and are more brittle.

Rich’s day fourteen was the beginning of this week and he’s right on schedule. Most everyone who goes through chemo with meds that will cause hair loss buzz their hair shorter prior to complete baldness. It’s a little more disturbing, and messy, to find hair here, there and everywhere and the longer it is, the more noticeable it is. Last night he brushed his hair and a significant amount fell out. He brushed his goatee too and that thinned as well. The precise timing of it is still something that boggles the mind.

We had a funny moment ten years ago when this effect started. Rich was relaxing on the couch with our cuddly cat Guilden on his lap. As he was petting her, his jeans were getting well covered with shed cat hair. Without missing a beat, Rich reached up and began taking HIS shedding hair and piled it on Guilden’s back. Finally she raised her head and looked up at him quizzically. As Rich looked down at her he said “Karma’s a bitch.” Our sweet Guilden looked at him square in the eyes for a few minutes and then settled her head back down on his lap and went to sleep… she had nothing to do but to accept the crazy payback moment. It still makes us giggle.

But tonight… tonight let the buzzing begin!!!

 

In between chemo cycles is a no-man’s land of waiting and watching. In many ways, you’re a non-patient since there are no nurses and doctors watching your every vital sign.

After the first cycle your daily routine at this point is as close to normal as it’s going to be for a while. A large handful of meds each morning and night to bolster your body or to diffuse side effects of the chemo itself. You look forward to the small bits of events and socializing you can do. You go to work to keep busy and to keep the budget happy. Sometimes it’s easy and sometimes it’s the last thing in the world you want to do. It’s good to be outside of your small prescribed universe for a while and to accomplish definitive tasks but… There is always that but…

And you watch. You watch what you eat. You watch your activity levels. You watch your pain levels. You watch for new issues. You watch for ways to attack those issues.

You’re really in an in-between world. It’s not apparent to the world what you are dealing with. At this point you still have your hair and your counts are good enough that you don’t have that wasted look. You’re neither here nor there on the functioning scales. Some days are better than others. And some are oh so much worse. With strength you didn’t know you had, you continue to move forward despite everything this disease and its unrelenting treatment throws at you. There’s a quiet courage that comes from deep within that makes it possible, however difficult, to keep moving. While you may not feel it, that courage and strength, even when you are at your lowest points, are there. Those who know you can only feel the greatest admiration, love and gratitude for that power within you. That power that fights all the things that can otherwise break you… you refuse defeat.

Each day is a triumph of will. Each day a step closer to the goal of health. You look to each milestone… some having to do with cancer cycles and some having to do with the joy of life…. Babies, graduations, weddings. Time with friends and family to celebrate those points of the year… birthdays, holidays, the changing of the seasons.

The rest of us can only watch in awe as you continue on with grace, dignity and humor.

Rich had a pretty tough couple of days… it’s rough on him and tough as a caregiver to witness. Since we had held off on acupuncture during the chemo week, stomach pain hit the maximum threshold levels. The medications he was given before and during the infusions masked the pain and when it wore off… his regular pain meds may have well been M&M’s. A trip to the acupuncturist resolved that and we vow to continue with treatment regularly despite any scheduling issues… this is too important to put aside even for a few days. Unfortunately at the same time the Neulasta shot kicked in with its accompanying bone pain.

After my father’s stroke, he began to get severe nerve pains. When he told the doctor about them, he was told that was a good sign of healing. Dad’s response? “Well my good signs are killing me!” And it’s true. We can only accept that pain means the drugs are working and this is a positive sign. But OH! How those good signs hurt! Today we found a solution on some internet forums… forgo the narcotics and instead take Advil and… Claritin, of all things. With stunning result… it worked! Additional meds were prescribed to help with the bloating and localized weight gain. Two types of antacid meds and a water pill are added to the boatload of medications. Prednisone makes it difficult to sleep so Ambien is prescribed. That box for medication is getting bigger and bigger!

And what a Catch-22 of absurdity when the Ambien makes you almost impossible to wake up BUT the water pill makes you gotta pee seemingly non-stop ‘round the clock… lurching towards the bathroom in the middle of the night like an extra in Walking Dead.

Healing sleep comes, ten pounds of water weight is gone. Acupuncture is started again and the stomach pain is resolved. Allergy meds get rid of bone pain.

Through it all, Rich continues with his good humor and laughter… always laughter. And again, I’m in awe. Absolute and complete awe.

..to quote Roy Sheider… like the boat in Jaws, I think the medication box is getting too small for the job at hand. The number of meds that Rich takes between chemo cycles is growing. But there are no complaints, each one of those bottles represents another side effect reduced or removed. Coming into this journey for the second time, we know not only that you do need to address each side effect but you also need to forestall them before they even start. Once they begin, then it takes longer and more meds to get it all under control… timing is everything. As Mad Eye Moody admonishes “Constant Vigilance!”

Which bring up the point that every single side effect and every single bit of discomfort needs to be documented and brought up to the doctors and nurses. Nothing is inconsequential. We never know what is important and what is not, so a diary of all these details needs to be kept and brought with us to each doctor’s appointment. A list of questions and concerns drawn up beforehand and the answers all jotted down at the office. Nothing can be left to chance. And always always always, we go together. When all that information is being thrown at you in the maximum number of syllables possible, no one person can process it all. This is most definitely a team effort.

While alternative medicine has its place and we certainly look into all our options, there is nothing natural about chemotherapy… we fight chemicals with chemicals with no qualms at all.

Today we had our follow-up meeting with the doctor’s office. Bloods were drawn, vitals checked. The week’s meds, including the infusions, were reviewed. Rich numbers are good… they’re either improved or holding steady. More meds are added onto our growing list. The chart of what/when is getting more complex. But there are no complaints… unlike ten years ago, Rich has been able to continue to go to work. He spoke at an Eagle Court of Honor on Saturday. Granted he slept most of Sunday but he woke up this morning full of energy for the work day ahead. We pray that energy and vitality continues!

But sometimes this gives us a false sense of security. Out of nowhere, bone pain from the Neulasta hits a nine out of ten on the pain scale. Foods that have a hidden acidic or spicy note hit the ulcerated parts of his stomach and another favorite food is put on the hold list. We research triggers, warning signs, what can set these episodes into motion. But some, like that bone pain, just come out of nowhere with no warning and no trigger. It just is. It just is. You play with the meds looking for combinations that will resolve issues when they pop up. And sometimes, you just have to giggle.

Years ago, if you went into a no-tell motel room, you’d find a box attached to the bed where you put a quarter in and it would make the bed shake… an ersatz massage for the weary traveler. .. the Magic Fingers Bed. In 2004, we had our own version of the Magic Fingers… one of those odd combinations of side effects that popped up without warning. In the middle of the night, Rich would suddenly start shaking and our entire bed would jiggle like someone just popped a quarter into an attached box.

While it initially made us laugh out loud, it did then become painful as his muscles would all cramp and nausea would begin. This would continue night after night. Through trial and error, we found the exact mix of meds that would alleviate the symptoms. Xanax would stop the shaking, Vicodin with additional Advil would relieve the pain, Reglan would settle his cramping stomach. It would take twenty minutes for the meds to kick in. So we’d need a distraction as well in the form of a movie on TV. Each night before we went to bed, we would fill a shot glass with the quantity of pills that he needed and a DVD set up ready to go. At the first shake of the bed, We’d yell “Magic Fingers!” Rich would down the meds while I’d hit play on the DVD and then we’d sit back, relax and enjoy the ride as we waited for the meds to kick in. What could have been a frightening and disconcerting set of symptoms, instead became a time for us to laugh at the absurdity of this disease.

A bigger boat

Constant Vigilance

Magic Fingers

As Rich would say, sometimes you just gotta laugh.

There’s a certain level of control that you give up when you go on a journey like this. You let people fill you with poison, pump you with radiation, zap you with gamma rays. You give it up to a higher power. You follow the plan. You show up where people tell you to when they tell you to. You even wait patiently for three hours for your appointment to start. You accept it… you know it’s because someone who is sitting in the chair planned for you has had a reaction and their infusion was stopped for a while. You’ve been there. You accept it.

And then the wrench comes flying at you when they tell you that the infusion of iron planned for today can’t be done today. The chemo and the iron can’t run at the same time and that three hour delay has changed the plans… we’ll run out of time. Which means come back tomorrow… yet another day that you will miss work. And that’s when you say it’s time to take control.

If you let it, having cancer would be a full time job. The number of appointments that are scheduled for you can literally take up all your waking hours if you just take what you are given. Of course, the first cycle, everything IS set up for you and you do need to take those appointments since basically you’re being squeezed into a bunch of already full schedules. But after that, well, start dodging those wrenches ‘cuz if you can dodge a wrench, you can dodge a ball!

The trick is to take the first appointments of the day if they’re available… can’t get bumped for a delay if you’re the first person in the seat. Then for the appointments like Neulasta that have to be end of day on a certain day in the cycle, take the very last appointment available so you can be in your office as long as possible. Lastly, for those follow-up appointments that are unavoidably midday, batch as many as you can into one day to minimize the amount of full days off you need to take. And the overriding trick to the whole thing? Make as many of these appointments as far in advance as possible to get your optimum time slots. Wrenches dodged!

We also found an unexpected bonus benefit to our wall of photos and our mini-buffet of noshes. People seem to stop in to see what’s going on. And one of those people happened to be the head of the treatment center and, we found out, a very good person to have on your side. She arranged for us to come in on Saturday morning for the iron infusion when we explained our dilemma. And will set us up in the new treatment area going forward so I can bring my laptop with me. Remote connection to the office on infusion days in the treatment center instead of catching up in the middle of the night…. SCOOOOOOORE!

It’s not nausea, but he’s been violently hiccupping for over an hour.

These hiccups are loud! We ask for our oncologist’s office to be notified and his nurse Anna stops by with a prescription for Thorazine like last time and soon they’ll subside. (Thank you, Elise, for the door to door delivery!) Rich had this ten years ago for three days so we know the medication is generally effective.

Sometimes it’s comforting to have these old “friends” crop up. It makes you feel like you’re on known ground again and the outcome will be assured. If this voodoo worked last time and we have the same reactions this time then we can extrapolate success again. If A=B and B=C then A=C.

Who says you never use High School math??!

The recipe is followed to the letter today… we make sure the Ativan for nausea is administered at least half an hour prior to any chemo is begun. We advocate for what we need and will not allow any deviation. Success!

Since there is no Benadryl today, Rich stays awake and we watch Mike Rowe deliver calves and shovel muck, we enjoy some food and snacks and play Scrabble. But even without the Benadryl, the meds do have a wonkiness factor in them and Rich insists that you can set up words on the diagonal (and thereby utilize virtually every double letter spot in one turn) and that Kneen is a viable word. Despite his cheating ways, I win. My record holds… I have only won against him during chemo.

Nurses stop by and chat about our photos that we have put up… family and places we’ve traveled. It helps them to see us more than the NHL or RCHOP in #25. A social worker drops in and gives us information about services and groups that might be of interest to us and asks us a bunch of questions to see where we are in the dx acceptance process. This place is a little noisier than the old facility, but there is also a life to it as well. Our headphones can silence the background noise if we choose so the hubbub is not intrusive but optional.

It does feel like an alternate reality tho’. While dealing with cancer, you find you block out all your other bits of life and concentrate on making it through this point and getting to the next… one by one putting each cycle behind you until they’re done.

But, of course, life doesn’t really work that way and bills need to get paid, work needs to get done, laundry needs to get washed. And it does get done but at the same time it feels like those tasks aren’t your real life anymore. Or that they don’t quite fit together in the right puzzle-ish kind of way… home and work. There’s a sort of disconnect when you transition from one to the other that’s a bit of a jolt. In time, you find the balance that makes it all fit back together again into a new reality for the time being. You also find yourself getting more flexible with making the switches that you seem to need to do.

Most important is to keep a connection with who you are, a connection with what your life outside of cancer is about and a connection to the people who mean something in your life. When THAT all adds up correctly, THEN the math is correct.

Like certain recipes in baking, with chemo sometimes the ingredients need to go in a certain order or you end up with something very different than you expected.

We were very lucky ten years ago that nausea played a very small part in our journey. That was due, in no small part, to the alchemy of the drugs Rich received… and in what order. Always Ativan was administered at our request prior to the infusion of any of the chemo meds. Ativan is an anti-anxiety drug that is also found to help with nausea during chemo. Today we found out to our dismay that the same protocol wasn’t followed and Rich had a very difficult hour. Ativan wasn’t on his Rx list which delayed the administration of the medication, the infusion today was just the Rituxan instead of the whole bundle of chemo so nausea wasn’t a concern, whatever the reason, the recipe for success wasn’t followed.

The nurses stopped the infusion of the Rituxan, allowed Rich’s stomach to settle down, gave him an infusion of Ativan and his other prescribed nausea med Reglan. At that point, we also needed to get some pain meds since an hour of severe spasms had taken it’s toll.

While chemo is generally thought of as one big stomach upset, we need to be very careful. Since the tumor is in the lining of Rich’s stomach, there is a threat of perforation so it’s important that any cramping and seizing be kept to the minimum.

Thankfully, the meds kicked in and a new batch of proverbial cupcakes started as the Rituxan infusion was once again dripping… recipe followed, successful infusion. Julia would be proud.

But this also brings up the emotional toll that the whole process takes on the patient and the caregiver and how things like this, like the unsuccessful conscious sedation prior to the bone marrow biopsy, like the threat of yet another invasive procedure with the angiogram… all of that takes an emotional toll that makes you weary. It’s almost as if we make a pact with the universe: We’ll willingly do this if you promise… And then the universe pulls it all out from under you and you feel like everything you knew to be true is not. You lived up to your end of the bargain and dammit the universe did not. That weariness is not the same kind of tired you get from physical work or even from the effects of the poisons that are working their necessary magic. Nope… it’s a weariness… and exhaustion… that comes over you where you just want to crawl in a ball, eat ice cream, and let the world and these problems, all problems, wash past you. Sometimes, you just gotta take the time to sit and eat that ice cream and to process. That way you can get back up and start over again.

So once again, we thank the angels that keep us going… To our scouts and scouting families for a wonderful example this weekend of why we keep on. To Arlene and Kevin who got us to the city and enabled us to see Nick’s show and laugh out loud. To Pete and Tommy and Maria who made sure we got as the hobbit wrote “there and back again” To Richard for a good laugh with your fez pic of the day. To Emily for some needed contact throughout the afternoon. To Nick for some wonderful healing comedy.

To the nurses at Monter Cancer Center for their compassion and caring. To Amy for always checking in and providing some needed diversions. To Lannie for listening. To all of you who visit us here and on facebook… whether you leave a message or just stop by…knowing that you take a moment to check up on us gives us the strength to uncurl from that ball and carry on. To Julia Child, herself a cancer survivor (tho’ that’s a phrase she hated) and her chapter on amazing ice cream… Bon Appetit!

It’s never a good sign when the doctor wants you to visit a cardiologist after a test for your heart function. Very rarely is it for a whim. So we didn’t expect rainbows and fairy dust as our daughter would say, but did have to draw the line at another invasive procedure… this time, a recommended angiogram. Thanks… but no thanks.

The echocardiograms were picking up what they called a Left Bundle Branch Block which meant the electric pulses in the heart were not functioning as they should. Thankfully, our PCP faxed over some EKG’s from the past few years, the oncologist was consulted and everyone came to an agreement that echocardiograms midway between each cycle of chemo to track the potential ischemia or, lack of oxygen to tissue due to poor blood flow, given that there has been no other signs of heart disease. An ACE inhibitor and a BETA Blocker are prescribed and we’re home free…WHEW!

Chemo Cycle 1 is scheduled for this coming Monday, Tuesday and Wednesday.

Y’know, whenever anyone thinks of chemo, it’s the nausea, fatigue and hair loss that comes to mind first. Nah… with us, it’s the planning! As with all things, we took a different path ten years ago. Each chemo session was an opportunity to do some fantasy travel. So every few weeks we picked a different exotic location and tailored our menu (and often our clothes) to our “destination.”

Our staple foods to bring to a chemo infusion would be bread, crackers, veggies, cheese, olives, nuts and fruit… snacks that would appeal to Rich at any time. Those foods and any additional sandwiches, soups, etc would be dictated by our destination. France? Brie of course! Greece? Kasseri! The only criticism we have of the Monter Cancer Center is the lack of a cafeteria… what do you mean we can’t get sushi here?!?!?! So we definitely have to plan even more beforehand this go-round.

But it’s not just about the food. With infusions this time taking up to 8 hours, entertainment is a HUGE priority. Since we don’t have cable at home, this will be an opportunity to have marathons of cable shows without worrying about rerun fatigue. A few clicks of the mouse on Amazon and we have a splitter for the remote speaker port and a pair of his and hers earphones (with individual volume controls, thank you very much). A DVD player in the treatment room is ours to use as well. Possibilities abound!

And as always, our faithful travel Scrabble game is coming with us. It’s not just about TV!

Comfort clothing is important as well. A quick trip to Target and Rich is fitted out with some comfy sweats, v-neck t-shirts for good port access and a nice pair of Bass vans to slip on his feet. And… the fez.

Ten years ago, our son Richard was in college and sent Rich a fez and bought one for himself. Each chemo session, Richard wore the fez to classes to have that connection with us 300 miles away. Just before his graduation from RIT, Rich was determined to be in remission. In celebration, Richard wore the fez as he received his diploma. So the fez will join us once again.

Lastly, the new treatment center has much more private quasi-rooms as opposed to the simple curtain of the old one at North Shore. That means we can improve our environment as well… a few blown up pictures of our friends, family and our travels as inspiration for health and healing will be surrounding us. We’ll also have some pictures of Williamsburg and Ireland… two places Rich wants to visit and these plans keep us looking toward the future.

I’m sure on one of our cycles, we’ll have some Irish cheese!

Long life and good health to you ❤

One in Nine had his inaugural infusion today…. They pumped him full of what they say is 100 steaks’ worth of iron over the course of an hour. It was like Man V. Food but without all the chewing. Happy to say that tho’ the port was still tender from last week’s insertion, it worked well and overall, an improvement on a regular IV line.

The bone marrow biopsy and aspiration were done today… still barbaric and still not enough meds to keep the horror of the whole procedure at bay. We were certainly back in the Pit of Despair with Count Rugen. But it’s done and that’s the important part. Now we move forward.

The MUGA scan showed a slight weakness in Rich’s heart which is probably due to his severe anemia. We’ve got a quick pit stop at a cardiologist this week to see if they recommend some meds to help with that. Then next week, chemo begins! The decision is, given Rich’s previous chemo, this time it be given over three consecutive days every few weeks to prep for the stem cell transplant. There are dosage life limits on some of the chemo meds, and although we’re well within the limits, it’s felt that a slower infusion over a course of three days instead of all in one day as before would keep the long term effects of these beneficial poisons at bay. Overall, there will be six sessions in total, part with the original RCHOP and part with RICE so that we don’t exceed those limits and still effectively combat the NHL.

In addition to the laundry list of chemo drugs, there are a number of other drugs that will offset the debilitating side effects. This is where cancer medicine really shines. There is a medication for virtually every side effect imaginable and, while not a pleasant course of treatment, it is nowhere near the experiences of decades ago. The trust we have in our medical group is precisely because of the compassionate care we received from them ten years ago. Every complaint was met with a solution and most importantly, we were listened to. So we expect to see some old friends: Neulasta, Reglan, Ativan, Kytril, Compazine, Allopurinol…. The list goes on and on. But each one was an integral part of the success of treatment ten years ago… we expect to find some new friends this go ‘round.

But the best medicine of all is the support, prayers and energy we get from our friends and family whether it be messages here, on facebook, calls, visits, transportation… that list goes on and on. The support of our coworkers and management at our office has taken a huge burden of concern from our shoulders, and that is invaluable. We know we’re in for some tough times ahead, but we know we can come through this stronger than before because we’ve got all of you behind us. So the bumpy ride begins… hold on tight, it’s gonna be a doozy!

Today I was handed a pager, not unlike the ones you get in a restaurant while you wait for your table. This was so that I could wander the hospital while Rich was undergoing his procedure. It was very freeing to be able to move about and know that they would alert me to when he was done and/or if the doctor needed to speak to me. But I gotta say, when that little bugger goes off, it does make your heart pound!

Then you rush through the maze of corridors, never remembering… do I make a left or a right here, was this the hallway for last week, was that elevator there before, and who are all these people walking so slowly….all the while this pager keeps beeping, blinking and vibrating. What a wacky kind of parlor game this is!

Rich is now officially a Borg… One in Nine has had his pretty purple plastic port planted (say that five times fast!) and amazingly, it can be used immediately. The stitches will absorb on their own and after a couple of days with what they say is a minor discomfort, he should be used to his new cybernetic self.

One more prep down, one more to go

We can’t thank everyone enough for their help and support. Particularly in getting us from point A to point B and back again. Since I don’t drive, this has always been the issue when Rich has been unable to get behind the wheel. The outpouring of volunteers has been very heartening and we appreciate your willingness more than you will ever know. Our thanks to Pete Meade for today’s foray into the wild snow and ice of Long Island in April!

Lastly, to all our friends and family, we hope you take the time to enjoy this holiday of renewal with those you hold dear. We’re blessed that we’re able to journey up to Rochester to see Richard, Noelle, Emily, Andy, Jacob and Mark and to spend a glorious weekend with

them. We’ll have you all in our hearts and in OUR prayers and will celebrate the many joys in our lives. We hope you do too.

Kristos Anesti

Happy Easter

Joyous Pesach

If in cultural references the port installation tomorrow is the equivalent of a Star Trek universe, then the bone marrow biopsy next Tuesday is akin to the Princess Bride’s Pit of Despair… minus the albino with the frog in his throat.

To get the core sample of the marrow, the procedure is much like tapping a thin apple corer through the hipbone. Of course, if like Rich you have hard bones, then they bring out the hammer to tap it in. Once in, they then suck out some marrow and a nice chunk of core.The amazing part is, someone, somewhere thought this procedure was state of the art in the Neolithic period… really… it’s been around that long. The only thing that has improved is the diagnostic equipment for cell analysis and the drugs that make you lie there compliantly letting someone do this to you once you know what it’s like. Oh… that and now they have plastic handles.

This time around they’re going to be using what they call conscious sedation. It means Rich will be awake but with no memory of the procedure and will feel no pain. Why this wasn’t offered before is beyond our comprehension but we’re glad that it’s available now. No one should have to lie on a table wide awake with nothing more than a quick jab of Novocain while someone hammers a corkscrew into your hip. But maybe I’m biased. I could be wrong.

As far as we know, this will be the last of the pre-chemo tests and will help the doctors finalize the details of the treatment plan based on their results. There are still some consults and orientations to be done and we should have those all done by the end of next week if we’re lucky. Though no one looks forward to chemo, there is something to be said for some active battling as opposed to wargame testing with nuclear stealth devices that seem to be scheduled off the cuff.

A plan, a routine and the backing of all you cheerleaders (yes Katherine!) sending light and love and positive energy our way… with that, we know we can do this!