Tag: lymphoma

Longest. Ride. Ever.

About twenty years ago, our family found ourselves at Hershey Park. While the older kids went on the roller coasters, I went with Nick on all the rides more appropriate for the three year old he was then. One of which was a kiddie airplane ride where you could control the height of the little plane you sat in as it went round and round. Nick and I settled into our mini two seater and, with big smiles, waited for the ride to start. When it did, I realized that Nick, who didn’t like the motion, had slithered down by my feet. To anyone watching, it looked like I was the only adult on this embarrassingly small ride. There was nothing to do but practice my Queen Elizabeth wave and smile as we went round and round. Every time I tried to make the plane go higher, Nick would start screaming at me as he sat scrunched down by my toes and I had to lower it back to a mere hover. So there I sat, two inches above the ground, a grown woman sitting apparently alone in a vehicle meant for a child no higher than three feet tall and going nowhere really really slowly… waving. Rich, meanwhile was gleefully snapping photos. This was the Longest. Ride. Ever.

Right about now, Rich and I feel like we’re going round and round on the longest ride ever and sometimes feeling just as ridiculous with our precautions as I did that day on that little plane and getting nowhere reeeeeally slowly. We’ve been trying to make changes but it’s hard to think of yourself as a non-patient when every time you begin to increase your activity levels, you end up back in the ER. As we are finding, “Progress is not accomplished in one stage.” Victor Hugo was right when he wrote that.

And we always seem to have a crisis moment after those doctors give us a big thumbs up. After our round of stem-cell-birthday doctor appointments August 27th, we began to look ahead to our F*ck Cancer celebration scheduled for Labor Day weekend. The kids were all coming down from Rochester with lots of family and friends joining in. We were a week away! We finalized our menu and went over the details and started up the stairs to bed. Near the top of the stairs, in seemingly slow motion, Rich began to fall, collapsing in on himself. Shaking, he grabbed the railing and, with me close behind, made it into our room and onto our bed.

Out of nowhere, his temp was 102, his O2 levels 82. Body aches were starting up. Suddenly his breathing was the full symphonic again. The guidelines we have dictate if a temp of 101 or more is not resolved with Tylenol for more than 20 minutes at a time, then we need to go to the ER. All temps should be reported. The O2 levels were problematic. A cough is brewing. If we reported this to the on-call doctor, they would advise to go to the ER. Rich was refusing, putting me in the middle. So, instead of a phone call, it was time for some fast footwork.

First, ignore the phone. Then begin some regimens for these symptoms. Tylenol, Nebulizer, and luckily, a supply of the antibiotic Levaquin is on hand. Shortly, the O2 levels are back up, the temp is normal and we’re hoping the antibiotic is working its magic. We’ll see how the night goes. In the morning, Rich’s temp is still normal. Throughout the day, his O2 levels vary which doesn’t make me comfortable, but he pleads to stay home. And I don’t blame him. The lack of temp indicates Levaquin was the way to go… this is a bacterial something or other that was brewing. With luck, we’ve caught it in time. We spend Sunday resting from the long watchful night and monitoring those oxygen levels that can’t stay in line.

By Monday, there is significant improvement… O2 remains a steady near-normal. We call the pulmonary doctor who isn’t happy we didn’t phone over the weekend but is in accord with what we dispensed and understands our need to stay out of the ER. We agree to notify her with any negative changes.

Now’s the hard part… keeping Rich rested so he’s well for the party. And thankfully he is. “To succeed, planning alone is insufficient. One must improvise as well,” said Issac Asimov, one of our favorite authors. So we improvise by bringing Rich’s Ikea chair (Poang!!!) and ottoman into the garden for him to relax in. Like a pasha, everyone will come to him for the bulk of the day…to greet his guests by getting up and down or standing for long periods couldn’t be an option… he’d be down for the count before the appetizers were done. And our plan works. Most of the day was spent in the chair but as the sun began to settle down, Rich then was able to get up and mingle, stopping at various tables to sit and chat. He only stepped away from the party for his timed nebulizer treatments. It was a triumph for him to be able to spend the entire day surrounded by so many friends and family, all of us celebrating that he’s in remission. Celebrating with gratitude for the support of everyone that helped us with love through the darkest of times and to find joy in the lightest. Those who were there in spirit followed us as well. It was magical.

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On Monday, Labor Day, we rang the farewell bells as we watched our kids drive off to their homes in Rochester. The house now quiet, we relaxed and enjoyed the aftermath of a wonderful weekend; reliving all the special moments, unwilling to let it end.

As we had for the past week, we continued to sleep on the main floor, still hesitant to try the stairs too soon. We settled in for the evening. Rich’s cough, though, kept tickling his throat. His side mildly sore from a week of coughing, the muscle pulled from the exertions. Overall, not problematic but annoying. Yet in an instant his body is in conflict… a cough and a sneeze explode at the same time and it’s as if his rib is physically torn apart. He screams in agony, holding his side as he falls out of his chair from the force.

Immediately, Nick and I rush to get him to the ER, calling the doctors on our way. Once there, like that little plane so long ago, the ER moves slowly on holiday weekends. After what seems an interminable wait, Rich gets a CT scan… riding off on the gurney smiling and waving goodbye to me like Queen Elizabeth. Like me on that stupid plane. As night once more becomes a new day, we get the results: lungs clear…rib unbroken… muscle torn. Sent home with oxycodone for the pain and valium to relax the muscle and advised to see our doctor within 24 hours. Thankfully: discharged. We feel reprieved.

The following day we visit the pulmonary doctor. She confirms the finding on the radiologist’s report and sends us home with some cough medicine with codeine to use in a few days when the ER meds run out. Calm the muscle, let it heal. Happy the lungs are clear.

Two weeks later, there’s still some pain… gotta be careful not to use core muscles for now… but overall healing. Cough for the most part is gone. Creeps in when Rich gets tired, but mostly gone.

So we continue to make plans. This time we revisit one we had to bypass in the spring when Rich was not up to the event… seeing the new show “Something Rotten” on Broadway. What better time to go than Broadway week? We forgo dinner in the city… that would make the night too long right now. Rich instead decides we’ll walk to and from Penn Station… it’s a beautiful night, just right for a slow stroll.

And it works. Tons of laughs, lots of fun. Great night out.

And we pay for it the next day. Exhaustion, swollen legs, foot pain and that pesky rib acts up. This on top of the continuing prednisone withdrawal and all the baggage that it brings with it.

Which all begs the question, how do we get out of this patient mode? Part of it is physical. But as the saying goes, a body in motion stays in motion – A body at rest stays at rest. We come up with a plan to create a routine of small tasks that will make the house run smoother and get our non-patient out of patient mode… work the mind and body.

The harder part is the mental. How do you stop thinking of yourself as a patient when every time you try, albeit by going unintentionally overboard, it sets you back? The frustration is overwhelming. We feel lost.

Baby steps seems to be the key. And that’s a hard way to proceed when you really haven’t done baby steps in sixty years. It is dispiriting when so many attempts create such havoc, but we have to learn from each one that the amount of extra effort needs to be very carefully calculated. And that there will be setbacks, but we can’t let them stop us in our tracks. One of Rich’s favorite pastimes is cooking. With the restrictions he’s had and the exhaustion, both mental and physical that the medications bring, he’s not had many opportunities this past year. But with Mr. Asimov’s words in our head, we make a plan to find interesting simple new recipes and Rich will go grocery shopping each day for fresh foods to fill the ingredient requirements. His day will be filled with preparing dinner with rests in between so as not to overdo.

For two days, we have excellent results and delicious meals. And then a fever flares again. We sit and look at each other. What to do? It’s not a huge temp… it just hovers above the “call it in” level. We decide to ignore it. It responds to Tylenol… we wait til morning and discover then the fever is gone.

We discuss how, pre-cancer, this temp wouldn’t even be a blip on the screen. Rich probably wouldn’t have even taken his temp but brushed off the chills he felt as a result of a rather cold marketplace. We discuss how our need to respond has changed with each successive fever over the last nine months. This time, there is no change in breathing or oxygen levels. The only medication needed was a couple of Tylenol… no nebulizers, no ER visit. In the grand scheme of things, this is an indication of some very significant improvement! We begin to move mentally out of patient mode. We’ll need to keep aware of body changes that could be problematic but decide that with caution, we can analyze these changes and review them with a fresh perspective.

The theologian Martin Luther wrote a commentary on the New Testament’s Epistle to the Romans. This book in the bible is full of focus on spirit… grace, transformation and salvation… a fitting one for our current place on our journey. Luther’s commentary says “To progress is always to begin always to begin again.” And so, as always, we begin to begin again… towards grace, transformation and salvation.

Renewal.

Joy is in the ears that hear

Each year, there is a unique gathering of people. In a sleepy suburb with long driveways, at a certain time of day on a certain day of the year, if you look closely, you will notice an increase in cars parked along the side of a certain road. The owners of these cars all seem to be headed towards just one of those long driveways, curiously laden with chairs, coolers, tables, umbrellas and, every now and again, a grill.

Rich, Nick and I have been blessed to be amongst those whose car is parked and whose hands are laden. And when you get to the backyard of that certain house, magic occurs. Music fills the air for hours on end and there is such a celebration of life that it fills your soul and blesses your spirit.

I’ve always felt there is something special in the harmonics of music. That moment when you are in a chorus, singing out, or in a band, or orchestra, playing your instrument and the air simply buzzes with the shared frequency of the music. It’s like nothing else, you feel it in your core. When a chord progression is so unexpected and yet so beautiful, it can bring tears. The emotion of music. The feeling. We’ve seen its power.

There is a wonderful documentary on the effects of music on those with dementia called “Alive Inside.” The trailer alone can make you feel the joy that music brings to these patients. My father’s Alzheimer’s took him to a different place in time than the rest of us. Regardless of where he was in his space/time continuum, Nat King Cole or Glen Miller could always grab his attention. If he was anxious or restless, their music would always settle him down. Gone would be the demands to go home to that “other house,” instead, he would sit contentedly and tap his fingers to the beat and sing along.Certainly does “Musick hath charms to soothe the savage breast.” Its effects are so deep and elemental that dementia can’t hide it away. The memory of those times with Dad run deep. Our daughter Emily, as she drives the kids back and forth to their activities, will play that same music and brings those days with her PopPop back.

Our son Nick spent a good part of his toddler-hood in silence. When his vocabulary dwindled, one word was always to remain… “music.” And at one of his IEP meetings with the school district where we mapped out our plan for him for the year, his therapist said “We recommend additional sessions of music therapy and dance music therapy.” When asked the reason she replied “Because he loves it so.” This spoke to us, not only because of the sensitivity of the therapists who worked with him, recognizing the response he had to music, but to the power that music had to reach a child who did not make eye contact, did not cry out loud, did not laugh out loud. But put on the CD of “A Child’s Celebrations of Song” and Nick would be sitting rapt, in front of the speakers. In his own way of speaking, he would call out his names for the songs as he heard them. “OH! ‘DucklinDucklin’! Is ‘DucklinDucklin’!” Oh the delight! Eyes wide, face brimming with excitement. And as Hans Christian Anderson, whose biographical movie spawned that “Ugly Duckling” song once said, “Where words fail, music speaks.” It has that power.

Lately… and once again… we are in the dark grey days of prednisone withdrawal. That dysfunctional adrenal land where there is no energy, no appetite and the days have a monotonous sense of everlasting sameness. Drab, dull, dense. We had thought we’d be in a different place of recovery by now. Instead, it seems to be a continuing loop of prednisone withdrawal. As always, Rich’s patience for this phase of treatment and his strength of will is inspiring. We continue to look forward the end of the tunnel but some days that tunnel seems just so long! To counter these effects we map out plans: theater tickets, upcoming weddings, gatherings. Things to look forward to. Richard and Noelle’s new baby in December to welcome. Life is good! Some plans may have to change, but sometimes it’s the planning that holds our excitement.

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In the midst of these dim days, it was, therefore, an especially wonderful moment when we sat in our chairs in that yard on that road on that day surrounded by that music. Rich leaned back in his chair, pained neuropathic legs raised to keep the swelling down, eyes closed but with a look of peace that had not been there for a while. The absolute power of music made physical. He lay there and let the sounds, the harmonies, the frequencies of our friends’ voices flow around and through him. It was a magical moment when the confluence of memory, fellowship and sound all merged into one. Alive Inside.

Each year in that yard, t-shirts are sold to raise money for breast cancer research. This years’ t-shirt says “The Ends Justifies the Meades”… Thanks to Greg and Kathy for once again hosting Meadestock, where magic is made. And thanks to all the Meades for your continuing love and friendship. No justification needed. Priceless.

Footnote (non-neuropathic): Joy is in the ears that hear…the title of this post kept on popping into my head. Where it is from and how we came to find it is unrelated to this particular story in some ways, but in others, so right. Rich and I were on our honeymoon, coming back from California on Amtrak when the train stopped for a while in Philadelphia’s 30th Street Station. I got out to stretch my legs in this magnificent station and wandered, as is my wont, towards a shelf of books in a corner store. All the selections were of the “I’m OK, you’re not right in the head” kind of books. Except for one… a SF/Fantasy book. Our shelves at home have a place for Tolkien but for the most part, we go for the more science based fiction within the genre. The Dune books straddle that very fine line, the Myth series made us chuckle for a book or two, but for the most part, dragons didn’t fall into our norm. Give us some Arthur C. Clarke or Ray Bradbury any day. I’ll hitchhike any part of the galaxy. Once I picked up the Shannara series of books by Terry Brooks only because the cover art was by the Brothers Hildebrandt… and I love their Tolkien calendar art… but was wildly disappointed. If Mr. Brooks could have stolen more of the plotlines of the Lord of the Rings, he would have had to have called is hero a hobbit. But I digress. Here I was with a dilemma as I searched for some reading material and the only thing available of interest was yet another probable rip-off of Middle Earth. The cover even hinted of a bit of the Brothers’ artistic style. I vowed that I would demand a refund from Del Rey books if this turned out to be. Maybe even send the Messers. Hildebrandt a sternly worded note regarding their business choices. Little did I know purchasing that book, “Lord Foul’s Bane,” would start us on a captivating series that spanned thirty-six years of its writing.

Saltheart Foamfollower, one of the Seareach Giants, the Unhomed, is a character that makes us smile, regardless of where in the story we are. His words, the full quote, seem so apt for the journey that we’ve been on… “Joy is in the ears that hear, not in the mouth that speaks. The wold has few stories glad in themselves, and we must have gay ears to defy Despite.” Once again, we’re reminded that it is how we approach what life brings us that makes all the difference.

The universe is trying to tell us something!

The Best Medicine Ever

As our kids were growing up, on the weekends we’d all climb into our big bed and lay in a mish mosh, watching movies on TV when the nights were as long as the days. As Rich and I sat, sometimes watching our kids instead of whatever was on the television, we would know… in this bed were the people we cared most about in the whole world. There was a feeling of peace that would flow over us. A contentment for the richness of our lives. Often as we traveled the country, it was the same even as our family grew… here we are together, experiencing this moment, threads binding us tighter together even as our love expanded to include our new members, new memories.

Despite the medical events of this past year… and it is a year since we first started this latest journey… we’ve been blessed. We have not only crossed the wide and rocky sea of this cancer treatment, but more importantly, we’ve been honored to be on hand to welcome the newest baby of our daughter and son-in-law, the graduation of our youngest son, and the wedding of our older son to his bride. What an amazing year it has been! Our family has grown in so many ways and it has been an incredible year of celebrations. Some celebrations we have had to view from afar, but always our hearts have been with our family.

There is a Chinese proverb, “God gave burdens; he also gave shoulders.” These past few weeks as it has been for this year, our shoulders have been lightened by our family. Richard and Emily have come down from Rochester at various times to be with Rich at home while I go back to my office. They bring some more life into the day to day routine. Our grandkids run about. Meals are cooked, shopping is done; lifting the daily burdens from Nick, Rich and I. It’s a respite that is sorely needed. Our gratitude is not only to them, but their spouses who have given us this precious gift of time. With all of our children, we’ve been blessed.

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In the time since Rich’s last discharge from the hospital, we’ve seen such wonderful progress in his recuperation. His breathing sounds clear and that his lungs are clear has been confirmed by the pulmonary doctor’s slew of tests. Slowly but surely, medications are being adjusted to smaller doses. We look forward in a number of weeks to saying goodbye to prednisone!

We have a physical therapist coming to the house twice a week. Gone is the use of the walker. Now a cane lends support but the PT sees improvement in the strength in Rich’s hips and legs as he completes his daily exercises as prescribed. The damage to his lungs, as well as his muscles, is slowly healing. With someone spotting him, he can now go up a full flight of stairs. Once more, we sleep in our own room on the second floor… we rejoice!

Though the house is now quiet,how wonderful to sleep in that bed that once held our whole family on those cold winter nights! How wonderful to have had these moments these last few weeks where kids and grandkids were all together with us, snug despite the arctic cold outside, watching movies and sharing laughter and, yes, some burdens as well.

Surely, that has been the best medicine, ever.

Blessed.