Bob's voice: More Mewlings from St. Louis, Day +7

 It has now been seven days since my transplantation and there is no evidence of engraftment yet. The staff reassures me that this is not a surprise. Indeed I have not even lost any hair or vomited so my course has been calm except for periodic plummeting of my blood pressure. They have told me I want or need the buzz cut by day 10. My appetite has been only fair and meat is less appealing to me. Recently I have been ordering chef’s salads with Caesar dressing. This is a mountain of lettuce – total fiber – so my tummy growls and snarls for several hours afterward. If we ever had to commit genocide against rabbits, we could do it efficiently by putting melphalan (my “hemlock”) on all the lettuce in our gardens. The melphalan is working as my white blood count (the “department of defense”) dropped to zero today and my platelets are almost gone. My white cells may have seen our military getting no pay tomorrow and just walking out on the job like our military should. The least we should demand is the withholding of congressional paychecks!

Beth called today that she was coming down with a cold and wanted to know what she should do. I told her about a conversation earlier this morning with another patient who has been here for two months. His chemotherapy had him in remission until two months ago. Then he caught a rhinovirus in the community, the virus responsible for so many ordinary head colds. He spent the next two weeks on a ventilator and he is still here. Beth listened to the story and has been by herself in the hotel all day today except for a brief visit to Schnuck’s. She feels guilty for my being alone today, but her decision was most proper with all the really sick patients who are here. I am the lowest acuity patient on the floor and all the nurses want to care for me for that reason.

I am amazed at the level of these nurses. For the last three days I had Michelle, who is a polyglot, philosophy major from Hebrew University in Jerusalem, professional Persian dancer, and gourmet cook. Yesterday she brought all of her patients homemade chicken and matzo ball soup, which takes her 18 hours to prepare. She promised me in the morning that it would be a good day and it was thanks to her soup and caring above and beyond the call of duty. This morning she traded out my old bed which was killing my back. I bet the last person to use it weighed 800 pounds. The new bed is a dream come true! It has a more than 6” deep mattress that is fairly firm. I have been sleeping more than 80% of the time since it arrived and Beth could not.

Beth envisages stem cells as the Keebler elves that go into that tree and crank out cookies. My Keebler elves are on board, but have not yet reported for duty. I am anxious to watch the red, white and platelet counts reappear, courtesy of the elves. They will discharge me from the hospital when the white count exceeds 1500 (currently zero) and they predict that will be next Monday. If the counts remain stable by Friday the 11^th, they will probably release me from the hotel and send me to Savoy to live in my next bubble.

Day +3

"Let's toast to family," and Nan and I did with our glasses of pinot gris. We were sitting outside at Wild Flower, one of the many restaurants in the Central West End. Although only two blocks from the hospital, it seemed a world away, and I thank cousin Nan for driving down to see me for the afternoon. We enjoyed a nice long walk and then threw kisses from our places on the sidewalk to Bob in his room.

As for Bob, he feels very fatigued and suffers a general malaise. Everything is an effort, and he's spending a lot of time sleeping. Because he sucked on ice while receiving the melphalan, he didn't get any mouth sores, and the vomiting and diarrhea he experienced on the days after transplant are now controlled with medications. He doesn't have much appetite. He says he is going "through the valley" as his blood counts keep decreasing. Those Keebler elves must be doing their job. 

Bob's voice: The day after transplant

I have been given a mulligan on the golf course of life!

 

The days before my transplant, almost every staff member asked me how I felt about the transplant. That was a good open-ended question for history taking, but it became tiresome. About 2:00AM on the day of transplant, David, my very serious night nurse, came in for his usual nursing duties and asked me the same question again. So I decided to shake him up. I told him that I had been lying in bed ruminating over being given someone else’s stem cells and thereafter becoming a really good person. He did not know I was pulling his chain and went into chapter and verse about how that mistake can never occur.

 

I prayed in the morning that God would be with me – the 23^rd rather than the 22^nd Psalm. While I was finishing my morning shower and drying off my hair and face with a towel (so that I could not see anything), I heard the automatic paper towel dispenser in the bathroom cranking out paper. I thought the nurse might have come in, so I wrapped the shower curtain around me. There was no one there whom I could see and the towel dispenser had been working flawlessly. Coincidence? I think not. I said a little thank you for the very reassuring message.

 

Kathryn, my day nurse, gave me the transplant about noon. For the occasion, she wore a Williams College varsity crew team t-shirt, which she obtained while rowing against Williams. Beth got photographs of this memorable occasion. It was not particularly pleasant. My stem cells were preserved in DMSO and frozen in liquid nitrogen. Kathryn had to thaw them in a hot water bath at my bedside and then promptly give them to me as they deteriorate quickly. The DMSO was the hard part, causing an awfully hot sensation in the upper part of my body and nausea, but this all cleared ten minutes after the final infusion. I had been forewarned that I would be very tired the rest of the day, and I slept almost continuously between 2:00PM and 9:00AM this morning.

 

Last night, Sam was my nurse technician. We visited for a while about midnight. He is a very nice family man but his other brother was not. His brother was known in the tri-county area by law enforcement and civilians as “Gangsta.” He died a disgraceful death at age 53. Sam loved him dearly, but there was no changing Gangsta. What an inspirational story!  [Note to stem cells: don’t turn me into Gangsta.]

New Life - The Transplant

The giving of life back to yourself. The stem cell transplant was such a simple procedure, and I took photos each step of the way, but the blog isn't cooperating. I have given it the old college try, and it's not to be, so I'll use words where photos should be!

Kathyrn, one of our favorite nurses, and another nurse entered the room around noon with a liquid nitrogen cylinder. Kathryn removed the top and one of the two small bags of frozen stem cells. She and the other nurse verified that the cells were indeed Bob's. The other nurse was then able to leave.

Kathyrn placed the stem cell container into a bath of water to raise its temperature to between 37- and 40-degrees. Once defrosted, the nurse called Bob's physician so he could be present for the procedure, and she hung the bag of cells on the IV pole and connected it to Bob's catheter. The cells die quickly, so the timing is very important. Once he arrived, the transplant began. First Bob reported that his head and neck felt hot, and a bit later he had some nausea, but all that passed once the procedure was over. (He also received the second bag of stem cells.) It didn't even take an hour!

DMSO is used as a preservative for the stem cells and while Bob was receiving the cells, there was a scent of garlic or creamed corn. Bob's breath would smell like this for the next day as it is expelled through the respiratory system.

And, finally, our special thanks go to Kathryn, a Smith graduate, who wore a Williams crew t-shirt under her scrubs in honor of Bob's alma mater.

Praise be to God for this miracle of life and for those who help bring the whole thing about. And, just a little reminder that great things can come in small packages!:-)

The Sabbath...and addresses

In the transplant schedule, the day of rest falls appropriately on the Sabbath. It was a lovely day since Bob felt well and had few interruptions from the medical staff. Good preparation for the transplant.

Should you want to reach Bob, his address is:
Robert Zeiders
Unit 5900
Barnes-Jewish Hospital
216 S. Kingshighway
St. Louis, MO 63110
(He cannot have any fresh or dried flowers.)

Both of us can also be reached through the hotel:
The Parkway Hotel
4550 Forest Park Blvd.
St. Louis, MO 63108

The Poisonous Apple Continues

I was in the room with Bob for his second and last dose of melphalan at 10:00 a.m.. It is very odd to think about Bob willingly taking this chemotherapy drug that will essentially kill him if his transplant does not rescue him. And, its side effects are most often quite harsh. What a thing to keep waiting for - vomiting, hair loss, mouth sores, diarrhea, fatigue. I know Bob has thought (and keeps thinking about) all of it. However, what we try to picture is those Keebler elves with machetes and karate punches knocking out and killing all those last remnants of cancer. Bob will be taken to the brink and then rescued. Yes, that is what will happen.

Bob is in better humor here in the hospital than he was at home. I'm pretty sure that even though he's not in control, at least he's in his element, a medical environment. And, he's having a wonderful time telling stories to everyone and eliciting theirs. I know you can picture him holding court, enjoying each interaction.

The Poisonous Apple

The week before we left for Barnes, I reminded Bob that he didn't have to go through with the transplant, but his mind was totally made up. He stood firm with his decision. We spent the week tying up loose ends and packing, however, I still only had three hours of sleep before we left as I kept thinking of others things that we might want. (Sadly, this is my usual packing routine.) Once the porter unpacked the van and delivered our bags and boxes to the hotel room (it took him two trips with the cart), I realized I must have been manic.

I don't want to forget mentioning our drive to St. Louis though as we had scene after scene that we called Larry Kanfer moments in honor of our local photographer. The sky was filled with semi-angry storm clouds, but we didn't constantly have rain. What we had was this light that brought out the intensity of the colors on the barns and in the fields. The reds, yellows, golds, tans, and browns seemed to almost glow, really highlighting the beauty of the season. I had never seen this before, and it was a wonderful treat.

We had time to enjoy the shrimp tacos and margaritas, (one each...well, it was happy hour) Bob wanted before checking into the hospital, and we toddled over to admitting with this luggage. We were brought up to the fifth floor and given a tour. There's a family lounge with coffee and machines filled with soda and snacks, a big TV, chairs for visiting, and tables for board games and puzzles. A couple was working on a White Mountains Puzzle entitled The 80's. Guest bathrooms are provided that have showers for family members who want to bunk in with their loved ones, and there's a pantry with soup, bouillon, crackers, ice cream cups, and so on - things that might appeal to anyone with a churning stomach. And, lastly, there is a room with exercise equipment in it for patients and loved ones.

Bob settled into his room, was checked by the nurse, and at 10:00 p.m. began receiving IV melphalan  hydrochloride, a chemotherapy drug that kills everything in the bone marrow. He sucked on ice before, during, and after the drug's administration hoping to prevent or decrease the amount of mouth sores that are often side effects. No turning back now.

What's next?

We will be back in St. Louis on September 20th for the transplant procedure to begin. This time Bob will be checked into a 17-patient hospital floor dedicated to patients receiving stem cell transplants. On the 20th and 21st he’ll be given powerful “poisons” to kill any remaining cancer cells (and we’ve been told that a week later not only will his hair begin falling out but he‘ll experience the harsh side effects from the poisons and incredible fatigue). Sunday (22) will be a day of rest. Ah, the Sabbath. And then Monday (23) will be Bob’s “second birthday,” when he will be given back his harvested stem cells (intravenously in a one-hour procedure). We’ve been told it’s rather anti-climatic, however, this really does provide him with a second chance at life - a fight against the cancer and a return to having an immune system. The stem cells will enter the blood stream, travel to the bone marrow, and start to make new blood cells, a process called engraftment.

Based on averages, Bob will be in the hospital for about three weeks, and then he’ll join me at The Parkway Hotel (connected to the medical center by a third floor bridge) for another week to recuperate and be closely followed.

 Back in Savoy, Bob will have to “live in a bubble” for 100 days or so. He’ll have no immunity to childhood diseases or viruses, and it isn’t until he’s recovered for that period of time that he can begin receiving all those childhood shots for mumps, chicken pox, etc.. He can only be around very healthy adults (no children) and has to avoid any place that may be crowded--stores, churches, airports, movie theaters, and so on. Thank goodness for Skype, football weekends, Netflix streaming, Hulu, and so on.

Harvest Time

Red leaves. Fall, on its way. We spotted our first brightly colored leaves the last day of August while we were still in Holland, and through our early travels this month we have seen the green John Deere corn pickers busy in the fields. It’s the beginning of harvest time for our Midwestern farmers, and it was time for the harvest of Bob’s stem cells (an outpatient procedure).

Bob reported to the Cancer Care Center at Barnes/Jewish Hospital September 6-8 for shots that would stimulate his bone marrow to make more white cells and stem cells. I envisioned the Keebler elves busy at their machines cranking the gears at a rapid rate making a gracious plenty of cells and all of them piling up as high as Jack’s beanstalk ready to be released. On Monday the 9th, Bob had a port put in under his collarbone for use during the harvesting and transplant procedures (the port is for ease in administering intravenous medications - no needle sticks), received the shot to stimulate the making of stem cells, and had a shot to mobilize those stem cells. It sounds short and sweet but in reality took most of the day. Tuesday, the harvest began.

Bob reported at 8:00 a.m. to the apheresis center. He sat in a recliner and was hooked up through his port to a machine that spins out and collects the stem cells and then gives back the other blood components. Bob was at the center for about six hours hoping that at least 2.5 million stem cells were being collected - that’s how much it takes for a transplant. If 5 million could be collected, the extra could be stored for another transplant, if needed. We were told that this process could take anywhere from one to five days and that with Bob‘s age it might take the longer rather than shorter time.

 The bag you see at the top right with the  red liquid contains his stem cells!

Well, Halleluiah, Bob was an over-achiever! Turns out those elves had worked overtime. He got a phone call around 5:00 p.m. that very evening and was told that more than 14 billion cells had been collected, and he could go home. We packed and left the next day. It was good to be back in our own bed. Time to rest, gather our resolve, and prepare.

The Plan

At Bob’s appointment at Barnes on August 20th  we had very good news. The results of his blood tests and of the PET scan showed that his response to the chemotherapy had been very good but not perfect. Indeed, the only lesion that Bob has in the vertebra is sterile, presumed free of cancer. Bob discussed various treatment options with the specialist and decided to proceed with the stem cell transplant. Based on current research, this offers him the most time before relapse and the longest symptom-free duration of life.

Go, Bob!!!

"The Good, the Bad, and the Ugly"

Amy brought Taylor and Tyler to Savoy for a little over two weeks, July 23-August 8. Oh, what fun to cuddle with and give bottles to the babies, to watch them learning to roll over, sit up, and crawl, and even to see them take their first bites of baby cereal. Amy especially enjoyed taking her good-natured babies to meet her many friends still living in town. She is a wonderful mother - loving, patient, and prepared. We rejoiced in lots of family time with Dave, Kathy, and Jack stopping by often, and Jeremiah and Betsy making a trip from their home in North Carolina. The babies were passed around freely, each of us begging for holding time.

Yes, I learned to feed both of them at one time.

Having just finished gardening, Amy with Taylor and me with Tyler relax.

Sadly, it was during this time that Bob started experiencing uncomfortable side effects from his chemotherapy. (He was also fighting a cold that held on for a good month.) He was on a three week cycle with two weeks of medicine followed by a week of rest. His drug cocktail included a pill that he took everyday, a shot that he self-administered twice a week, and a medicine that was taken once a week. In addition, he had one 20-minute infusion per month. The goal was to complete four cycles which Bob has done. At the beginning, his worst side effect was turning into a Jack Russell Terrier after that once a week drug. He was a man in motion without a purpose or attention, sometimes speaking in partial sentences. It lasted only a day or two and was ameliorated when the dosage was split in two and administered on two different days. The infusion gave him a two-day flu the first time he received it. The second time, he had entirely different symptoms, and by the third, he had no side effects at all. Fatigue and some light-headedness crept in fairly early, and Zoe, our Yorkie, has especially enjoyed Bob taking two to three naps a day.


It was the injectable drug that ended up driving Bob into depression. It brought about a myriad of painful symptoms in Bob’s arms, hands, legs, and feet. At first Bob had a lot of back discomfort and was concerned the disease was eating more lesions into his vertebrae. On August 7th, the orthopedist ordered an MRI and blessedly discovered that not only did Bob not have any new lesions but that the only one he did have was smaller! But the bone pain did not go away and was joined by this additional peripheral neuropathy*.  He can have shooting or aching pain and/or numbness. Lately he says he feels like his feet are getting frostbite, and that there are ½ ping pong balls under the soles of his feet that he’s trying to walk on. One of the few times I was not with him, he had a painful and frightening fall on concrete stairs when his legs just failed him, and he had little strength to pull himself up. Some or all of the neuropathy may be reversible. We pray for healing.


*Neuropathy is a collection of disorders that occurs when nerves of the peripheral nervous system (the part of the nervous system outside of the brain and spinal cord) are damaged.  The condition is generally referred to as peripheral neuropathy, and it is most commonly due to damage to nerve axons...Neuropathy can affect nerves that control muscle movement (motor nerves) and those that detect sensations such as coldness or pain (sensory nerves)...from Medical News Today.

"It's summertime and the living is easy," at least some of the time!

So, what have we been doing all summer? We’ve been able to spend one to two weeks each month in Holland doing some boating, shopping, sharing good times with friends, and eating. Bob has called it “escaping.” (That’s what we’re doing right now before we head home on Tuesday.) Generous friends even provided us with delightful opportunities to ride on their much larger boats including a 43’ sailboat and a 37’ cabin cruiser. These big boys take boating to a whole new level.

And, I had only one bad scare there. Bob finally agreed to go to Urgent Care on July 10th because of fatigue, labored breathing, and a lot of edema in his legs. My exasperated words the previous night had been, “Bob, it sounds like you’re dying.” I had not watched Bob sign in, but we were barely seated when the nurse rushed out and asked Bob if he was having pains associated with a heart attack.  He replied, “No, but I came here to find out if I had one a week ago.” Yes, I did have that deer-in-the-headlights look. He had never mentioned a word about his suspicions.

The  doctor listened to his heart and lungs, and told us he was ordering an ambulance to take Bob to the hospital. Bob retorted that I could just drive him. We weren’t long in the hospital’s ER before Bob was given a private room on the special cardiac floor where his heart was continuously monitored. He endured “the big work-up,” and his diagnosis was acute congestive heart failure due to fluid overload. He was able to leave the hospital late the next afternoon with the condition resolved, but the cause of the crisis remained a mystery. One guess was that he’d had an arrhythmia (abnormal heart rhythm) that threw his heart into failure, and another was that one of his chemotherapy drugs did it. The edema continues, but Bob manages it everyday by checking his weight and the puffiness of his legs and then determining if he needs to take a water pill. Just another blip.

Back at home, I’ve gardened more extensively since we’ve spent more summer time there, and even put in a few tomato plants (of different varieties). The first two weeks of June, I cleaned beds, did some redesign, moved perennials, and planted annuals. The garden is always a place of miracles and peace for me. Our flowers have performed fairly well, but the August dryness has taken its toll. Now I’m making plans for next year. I’ve also enjoyed hours of reading, choosing mysteries, thrillers, and other light novels to suck me into the story and out of reality.

Before and After

April 1, 2013. That’s the date that Bob was diagnosed with stage one multiple myeloma*, as yet an incurable but treatable form of blood cancer. I wish it had been a nasty April Fool’s Day joke being pulled by his hematologist, but I knew it wasn’t. With the doctor’s diagnostic sentence, our lives were forever changed. Before and after.

That phrase, “before and after,” has been part of our lexicon since seeing the 1996 movie of the same name starring Meryl Streep and Liam Nieson. This mother and dad have two children and seem to be living the perfect life. Then a teenage girl who has been dating their son is found dead in a field, and their son is a suspect. Roger Ebert and other film critics didn’t rate this movie very highly, and I can understand some of their issues with the plot, but the emotion it generated in me remains to this day. Why? Because before and after moments are part of the human condition, jarring steps along our life journeys. Happening unexpectedly, like in the film, they throw our lives off kilter, and the lives we lead afterwards are forever different from those before.

For us, it has been five months since that diagnosis, but our lives have already been considerably altered. For example, we’ve discovered that we’re lucky if we can make plans for a week that don’t have to be changed, that we have as many trips to St. Louis as we do to Holland, MI, and that Bob, who felt fine before his diagnosis, is now suffering the effects of his chemotherapy. We pray for a miracle, for strength, courage, and grace. 

I recently finished reading French film artist Marcel Pagnol‘s memoir, My Father’s Glory and My Mother’s Castle. Toward the end he wrote, “Such is the life of man. A few joys, quickly obliterated by unforgettable sorrows. There is no need to tell the children so.” I’m trying not to let this be my story. In truth there is much we humans have absolutely no control over. However, we can control our responses, and jarring steps, before and after moments, cannot only alter lives but can transform them. I’m hoping that this one will color me with more love and compassion.

*Multiple myeloma is a type of cancer that begins in the plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the body’s immune system. When plasma cells grow out of control, they can form a tumor, usually in the bone marrow. This type of tumor is called a myeloma, and if there are many tumors the cancer is called multiple myeloma.