Happy New Year

Wishing you a very Happy and HEALTHY New Year!

Our "bubble" and the good news - Day +97

Bob's days in the "bubble" will soon come to an end, although with flu season going strong, I'm sure he'll still take precautions and keep his hand sanitizer near at hand. His physician suggested that he continue to stay away from children and wear a mask in an airport and on an airplane. He has yet to begin his "baby shots," but he should receive a schedule soon. It's a lot of waiting.

I had hoped that this "bubble" would be like a snow globe with us sitting happily by the fire sipping hot cocoa and playing Bananagrams. But it hasn't been like that. Bob's continued neuropathy in his feet and legs more often keeps him snuggled in bed watching BBC movies and TV series. Pain medication gives him some relief for a couple of hours when his feet feel weird rather than painful, but as the day fades, his discomfort increases. He also continues to be cold, and often wears his cap and scarf around the house. We're waiting for time to heal.

The great news is that his blood test results in early December were all normal. He's not anemic, his kidney function is outstanding, and his white blood cells, platelets, calcium and proteins are all normal.
Normal. The answer to a lot of prayers of many people waiting to find out.

Next week Bob will have a bone marrow biopsy and talk with his specialist about low dose maintenance chemotherapy. The hope is for a long, very long, remission. We're eagerly waiting for this good news.

A note to all my grandchildren

 “Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that frightens us most. We ask ourselves, 'Who am I to be brilliant, gorgeous, talented, and famous?' Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that people won't feel insecure around you. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in all of us. And when we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.
                   - Used by Nelson Mandela in his 1994 inaugural speech

This little light of mine,

I'm gonna let it shine

This little light of mine,

I'm gonna let it shine

Let it shine, let it shine, let it shine. 

This is one of the first songs I learned in Sunday School. It's a favorite of mine even now. Not too many years ago, I was involved with a spiritual group of women, we called ourselves The Lights, and yes, we sang the song. I love each of these women; they are strong, intelligent, faithful, and show love to others. Although we no longer meet as a group, I keep in touch with them, and I know that I can rely on any one of them for anything. I don't much like this phrase, but it is descriptive of their lives, They walk the talk - and let their lights shine. I believe this is what life is about, no matter what your religious views are. This kind of life will bring peace to you and the world.

 

It is our responsibility to let our lights shine. In the book of Micah in the Old Testament, we are told, He has shown you, O mortal, what is good. And what does the LORD require of you? To act justly and to love mercy and to walk humbly with your God. (Micah 6:8, NIV) What does this mean? Basically, do what is morally right; show compassion and love to all (even those who annoy you); practice acts of pardon, forgiveness, and kindness; and know that you do this because you are a child of God - she does these things for you so that you can do them for others - she's in charge!

It's the time of year when we remember the birth of one who modeled this life we're required to live. His light shown with kindheartedness, empathy, sincerity, gentleness, love, tolerance, patience, courage, joyfulness, forgiveness, truthfulness, generosity, compassion, boldness, endurance, enthusiasm, discernment, gratefulness, hospitality, and more. It is this life that I entreat you to live. Let your light shine.

Hide it under a barrel, no!

I'm gonna let it shine.

Hide it under a barrel, no!

I'm gonna let it shine,

Let it shine, let it shine, let it shine.

Don't honk your car horn at others unless it is a safety issue. Smile and greet the person checking you out at the grocery. Give each person you interact with your undivided attention, acknowledging his/her worth as a person. Be grateful and content with what you have. Be enthusiastic. Forgive - it is the most freeing thing you can do for yourself. Show your courage by standing up for those without a voice. Share your food with someone who is hungry. Recognize what needs to be done before you're asked to do it. See others and respond to them as the children of God that they are. Let your light shine.

Let it shine over the whole wide world,

I'm gonna let it shine.

Let it shine over the whole wide world,

I'm gonna let it shine,

Let it shine, let it shine, let it shine.

With all my love,

Mimi

(Happy 1st birthday, Taylor and Tyler.)

Merry Christmas

 Tyler and Taylor

HOPE

An entry from "Take a Breath"

From Dr. R. Scott Colglazier's blog "Take a Breath" (on life, love and spirituality):

Curate. The. Corner. (Where You Are)

November 18, 2013 by Dr. R. Scott | 0 comments

Okay, stuff is stuff, and the essence of life is not about getting more of it. In fact, one could argue that we might be served by divesting ourselves of some of it. At the same time, there’s something soulful about a few beloved things — collected, arranged, and cared for — a few things that connect us to beauty and memory and the deepest sensibilities of our lives. A “curator” is someone who cares for and arranges art in a museum, but there’s a relationship between “curating” and “curing,” that is to say, when we curate the little corners of our lives it provides healing energy to our existence. Curating a corner is slightly different than decorating. We decorate to make it nice; we curate to make it meaningful. Take a Breath today. Look around your office or house, your desk or bedside table, and consider doing something wonderful for your soul this week and curating a corner of your life.

To think about...

 

                              

 It is not our differences that divide us.

It is our inability to recognize, accept, and celebrate those differences.

- Audre Lorde

Thelma and Louie - Day +50

We were moping around in a funk, and our condition called for drastic measures. Time for Thelma and Louie to run away from home and head for the road. First stop, the condo in Holland. We waited for the winds and rain of late October to end, packed the van, and off we went. I drove to the rest stop past Kankakee, and Louie brought us through the traffic of I-80 to our doorstep.

It was a wonderful surprise to find that friends Lisa and Harry from Indianapolis would be up here too, and an even more superb surprise to meet up with them at our garage. It made unpacking quick, and we were soon sipping wine, munching on snacks, and catching up on our couple of months apart. Our chatting continued later over a dinner they brought in from one of the local restaurants. It was a whirlwind visit, for after we enjoyed apple donuts and fritters (we'd brought up from Curtis Orchard) over coffee the next morning, they were off. Bob slept the rest of that day and all of the next. He didn't know what to attribute his fatigue to, but it got us thinking that Holland just might be the first and only stop on our road trip.

We were surprised to find peak foliage color in our micro climate here on Lake Macatawa. We look across the lake at Kollen Park, and its trees were dressed in all of the rich fall colors. We could appreciate an Impressionist's view with their reflections in the lake. And, over the weeks we have been here, we have watched the leaves fall, buffeted by storms and strong winds. That weather also brought us a surprise.

On a cool rainy day we drove to Holland State Park to check out the removal of the sand dunes just to the north of the channel. Evidently those dunes were affecting the channel wall, and so the sand was bulldozed over to the main beach area. I miss their presence but understand the necessity. Anyway, it turned out that the dunes were not the story for we saw two guys in wetsuits kitesurfing. A first for us.

 

This photo is from the internet but gives you the idea of what they were doing.

Because of the inclement weather, the waves were high, crashing against the breakwaters beyond the channel, and spraying wildly into the air. These extreme sportsmen raced up and down Lake Michigan fighting to hold and control their kites in the powerful wind. Amazing.

Since Bob is still in a "bubble" with no immune system, I don't have much else to report about our time here. We've dined around 4 p.m. in a couple of restaurants when there were few other patrons, and we've done a bit of shopping during the week and often find ourselves the only ones in the stores. If there's a need to wait in a line, Bob steps away, and I pay. His fatigue and neuropathy limit our time on the go, and we finally decided not to venture to Traverse City and Frankenmuth (a Bavarian-like town with "the world's largest Christmas store"). Thelma and Louie have had their wings clipped but their wanderlust remains untouched (or at least mine does).

Day +50 is an important milestone for Bob because in another 50 days he'll be able to start getting his "baby shots" (against mumps, measles, etc.) to rebuild his immune system. Now he needs to rest to let his body recover from the chemotherapy and transplant, something that his chemobuddy keeps reminding him about. Winter is just a perfect time to do that.

************

“Fall has always been my favorite season. The time when everything bursts with its last beauty, as if nature had been saving up all year for the grand finale.”
                   ― Lauren DeStefano, Wither

Take a chance

Happy Halloween

 Celebrate the day!

Purpose and passion

from the French by Design blog

Bob's voice: Mewlings from Savoy

One month post stem cell transplantation!

 

The “Wizard of Oz” used an interesting cinematographic technique by commencing and ending with the mundane scenes from Kansas in black-and-white, whereas the fantastic middle portion utilized brilliant and sharply contrasting colored scenes. My amazing adventure into and through the valley of the shadow of death was colored in just the opposite manner. Those portions of my treatment prior and subsequent to the transplantation were vividly colorized, whereas the hospitalization was as bleak as the setting of Babette’s Feast or southern Sweden as filmed in the Wallander series. The anticipation of the transplant was as classical an example of an approach-avoidance conflict as marriage. Once the hemlock was administered, there could be no turning back. But my engraftment was swift and dramatic, allowing me to be discharged about 5 days earlier than most other patients. I rested for several days in the hotel in St. Louis before our daughters flew in from Burlington and Las Vegas. We were rewarded with spectacular weather which we enjoyed during afternoons in the botanical gardens and the world famous zoo and at sidewalk cafes on “The Hill,” the Italian section of St. Louis, and throughout the Central West End District adjacent to the hospital and our hotel. I forgot to buy a baseball cap and so my newly bald head was sunburned. Ceiling lights reflected on my reddened scalp giving my short gray hairs an eerie pink cast, making me think of myself as an Easter chickee peep. My grandson, Noah, who is a freshman at Washington University in St Louis, gave me a Wash U cap which I both needed and wanted.

 

The wonderful world of bright colors resumed upon discharge from the hospital to the hotel. I had feared that the chemotherapy had killed my taste buds until I had my first wonderful meal with pasta and butterflied shrimp on the Hill, al fresco, toasting in the afternoon sun. The bland hospital food had nearly bored my taste buds to death, but they had not died. Meals thereafter became the highlight of my days and evenings. The drive back to Savoy included the plethora of colors from the autumn leaves and the ripening crops. I had safely navigated the most treacherous part of my cancer journey, with the assistance of many prayers and kind thoughts from so many caring friends.

 

But now the colors are different, not as vibrant as before. I realize that I have been changed by this experience. I look at life a little more seriously now and am less free with my rapier wit and invaluable opinions about everything.

Did you know?

We're home and resting - Day +25

I'm doing laundry in our own machines and watching the college football games on our big screen TV. Life is good.

We drove to Savoy on the 16th and I was so tired, physically and emotionally, that I missed our exit. I didn't really need those additional miles to the airport. Ah, but how good it was to finally be home. Bob collapsed into bed, and after I unpacked the car, so did I. Heaven. 

I've been running needed errands while Bob pays the bills. When we're tired, we stop and catch up on our HBO and Showtime series. Little Snickers, Zoe's best friend, who is acting as nurse and grief counselor, has visited two days, and so we get outside to walk her and enjoy the cooler temperatures and falling leaves. We're getting back into a few routines.

Truly, there is no place like home.

Great News - Day +21

It was back across the bridge and into the medical complex again. Bob had a blood draw, and we met with his physician 45 minutes later. It was all good news. The Keebler elves are still in overdrive, and Bob was told that it was safe for him to return to Savoy. Packing and jumping for joy! Oh, to be in our own bed...

It's a family affair - Day +16 to Day +20

Bethany arrived in St. Louis from Vermont on Wednesday the 9th (day +16), and the three of us caught up over an Italian dinner at Anthonino's. The next day we ambled through the Missouri Botanical Garden. The fall colors still hadn't much appeared, but other signs of the changing season were evident. We found some fountains turned off and drained and Christmas lights being hung high in the trees.

Amy's plane from Las Vegas came in that evening. The sisters shared a corner room with two views, including one of the downtown and Arch. They also had the good treats - wine and Amy's homemade cookies - so we dubbed it "party central."

Friday afternoon (day +18) we expected the St. Louis Zoo to be quiet, but the school children must have had the day off because there were families everywhere. From the bales of hay, plenitude of pumpkins, and gigantic inflatable black cat, the fall and Halloween decorations were abundant. We strolled through the habitats of the "lions, tigers, and bears," the monkeys and apes, and the zebras and giraffes before Bob finally admitted that he was tired.

Yes, tired. Over these two days, he'd done an incredible amount of walking compared to his usual three laps around the hospital floor. He also hadn't brought a cap with him to St. Louis and refused to buy one or some sunscreen, so his hair-challenged head, having never seen the light of day, became a bit sunburned. The pink of his head made his white fuzz look pink too, and he called himself a "pink chickie PeeP." We decided to "dine in" that evening and ordered two small deep-dish pizzas to go from Pi Restaurant at 400 N. Euclid. One was the south side classico with mozzarella, sausage, mushrooms, green bell peppers, and onions, and the other was the kirkwood with mozzarella, Italian meatballs, red peppers, and basil. The pizza has won many awards and the company claims that it's President Obama's favorite, and it was good but not as good as Papa Del's in Champaign.

Amy had a wedding in Champaign that she wanted to attend on Saturday afternoon, and she and I drove north. While she enjoyed her friends, I was able to clean to make the house Bob-friendly (dust free). Sunday before we trekked back to St. Louis we visited with Dave and Kathy to wish them a happy 17th anniversary, and stopped by Kent and Lana's to give our birthday wishes to Kent.

Meanwhile, Bethany got to see Noah start in the Washington University varsity soccer game. Bob and she were able to share time and meals with Noah over the weekend. And, Noah gifted Papa Bob with a Wash U cap that Bob badly needed and loves.

Bethany flew back home Sunday afternoon, and Amy left a few hours later. Then Bob fell into bed. He slept for twelve hours, was up for less than an hour, and then slept five more hours. Yes, he admitted he was tired but said it was all such fun that he wouldn't have changed a thing.

Life on the outside, Day +16

It is wonderful having Bob back in the hotel room with me. Life seems as it should be! He spent the first days sleeping a lot. Perhaps it was the relief of having the transplant behind him, but we also wondered if he had switched day and night (easy to do in the hospital). Sunday while I spent the afternoon with my dear cousins Nan and Jean (the YaYas) at the Missouri Botanical Garden, Bob concentrated on staying upright, and it seems to have helped.

It was a perfect sunny afternoon at the Garden, in the 60s, and the Best of Missouri was displayed in huge outdoor tents, everything from pottery to chocolates to lawn art and mink teddy bears. I did think Bob needed some of the dark chocolate coffee bark from a local chocolatier, Kakao Chocolate (www.kakaochocolate.com). Yum, artisan chocolate at its best.

For the most part, we women ventured through the garden following no particular route, just strolling toward anything that caught our eyes. Various divisions include children's, boxwood, rose, home, Victorian, Japanese, and so on. There are numerous sculptures and water features. It is absolutely lovely, and I'm hoping for a return visit tomorrow with Bob and Bethany.

Jean brought hair clippers with her and when we got back to the hotel, I gave Bob a prison-like crewcut. Not the best. He's not had hanks of hair fall out, but he is doing some good shedding (we need to quit wearing dark clothes:-). The doctor assured him that he would not escape losing his hair, so we decided on a preemptive course of action. He looks great but needs a little sunshine on his scalp. 

Monday, Day +14, was the earliest date we thought Bob would be released from the hospital. Instead, it was the first of many celebrations. St. Louis has an area south of I-44 (south of Forest Park) called The Hill. It's an Italian neighborhood with family-owned restaurants on many of the corners. Kathryn recommended Anthonino's Taverna (www.anthoninos.com, 2225 Macklind Ave.), where authentic Italian and Greek food is served. It has even been visited by TV's Guy Fieri. We went early, 4:00 p.m., sat at an outside table in the sun, and enjoyed an indescribably delicious dinner.

We were back to the Siteman Cancer Center for Bob's follow-up visit on Tuesday. Blood tests first and then a meeting with his physician's nurse practitioner. Those Keebler elves are continuing to work overtime to produce the blood cells that Bob needs. The medical team had set up a platelet transfusion for him that he didn't even require! Instead he was sent to Interventional Radiology to have his catheter/port removed, a more involved procedure than either of us anticipated, but all went fine. (No more Press 'n Seal with loads of tape to keep it covered during Bob's showers.) We also had prescriptions to pick up at two different pharmacies, and a very nice lady in optical fixed his bent glasses' arm from when he had rolled over on it in the hospital.

In the evening we stayed in the Central West End and walked to the Brasserie (4580 Laclede Ave., www.brasseriebyniche.com) for dinner. Again, we sat outside at the end of a row of tables. Everything seemed to be authentically French from the round cafe tables and black and tan woven chairs outside to the dress of the wait staff as well as the preparation and presentation of the food. Bob had the braised beef, carrots, bacon, horseradish, mint, potato puree, while I indulged in the roasted chicken, mushrooms, bread, jus. Both delicious. And we even feasted on dessert: caramel pecan tart with brown butter ice cream for Bob, and chocolate mousse with hazelnut shortbread for me. A very romantic celebration.

Unfortunately, Bob was reminded of the treatment he'd received and was up with nausea, reflux, and gastro distress throughout the night. We had been told that his recovery would be like this - peaks and valleys - but in the larger picture this is small potatoes.

We're looking forward to Bethany's arrival late this afternoon, and the celebrations will continue.

Now, a political message

My post to "The Office of John Boehner" Facebook page:

You've discussed all of this to death. Bring it to a vote. We want the government up and running and our country's debt paid. Now, throw out the tea and try some coffee.

I welcome you to post, too.

Blessed, Day +11

October 4th has been a sad day for me since my mother passed away on this date. However, now it holds a new and better memory as it is the day Bob was released from the hospital following his stem cell transplant! It's now a jump for joy day.

Nurse Kathryn gave Bob his stem cell transplant and was the one to discharge him from the hospital. His blood tests showed another big jump:
     white blood cells - 10.9
     absolute neutrophil count - 9701
     platelets - 40

A day of thanksgiving. A day of hugs to nurses. A day of best wishes to those still receiving treatment.
 
Time to leave and continue recovery in a St. Louis hotel room.

Blessed.

Look at the numbers, Day +10

   Day     White Blood Count     Neutrophils     Platelets

 +6                                      0.1                                                                                       35

 +7                                      0.1                                                  0                                   22

 +8                                      0.3                                                  0                                    9

 +9                                      0.6                                                30                                   31

 +10                                    5.1                                            4335                                  32

ENGRAFTMENT!!!

Bob may be moving in with me at the hotel tomorrow where his recovery will continue.

God is good. Amen.  

The Best Day Yet, Day +9

Best day yet! As soon as Bob awakened, he felt like it was going to be a good day. He did his laps around the floor, his self-imposed motivation to "earn" that first cup of coffee. While sipping it in the family lounge, he chatted with a patient's husband, hearing about the plans this thirtysomething couple is making for the next year. He added a few pieces to the puzzle we're enjoying working on there - a White Mountain Puzzle entitled Lunch Boxes, that includes everything nostalgic from Care Bears to I Love Lucy to Flipper.

Back at the room, he called me and found out that David was on his way to St. Louis, an unexpected surprise. And, so the day went. In the afternoon, we attended a meeting for patients and their families called Recovery that discussed the information we had received in printed form about Bob's life after the hospital. Let's see...no driving, no feta or blue cheese, no live cultures in yogurt, no drinking...but these are all temporary and in the small potatoes category after what he has been through.

Before Dave left, he walked to Tortillaria Mexican Kitchen (8 1/2 S. Euclid) and picked up dinner for us. We enjoyed a gracious plenty, from chips and salsa to tacos. Bob and I feasted on our favorite Caribbean Shrimp Tacos but without the margaritas. After this nourishment, Bob challenged his next-door-neighbor to three laps and then settled for the evening.

It was a day of joy. It was a taste of the future. Thank you, thank you, thank you. Amen.

And so it goes, Day +8

There are many days I don't go outside. I take the third floor walkway from the hotel to the hospital parking garage, continue across the walkway over Euclid Avenue into the Center for Advanced Medicine (CAM), and finally end up in Barnes-Jewish Hospital North. Then I take the elevator to the 5th floor, Stem Cell Transplants and Leukemia. When I'm lucky I hear musicians serenading all of us from their first floor position at the bottom of the atrium in the CAM. One late night I caught two male hospital employees in blue scrubs playing piano. I cheered them on.

The temperatures in St. Louis have been at least ten degrees above normal most days with clear skies. But outside Bob's window is a tree that tells us fall is on its way. A couple of days ago I noticed a small patch of leaves had turned from green to red. Only a couple of other leaves have joined them, but perhaps we'll see more when it becomes cooler on Sunday.

If you picture a bell curve and then flip it upside down, Bob is right at the bottom. His absolute neutrophilic count is 0. (Neutrophils, a common type of white blood cell, are essential for fighting disease. Normal is over 1,000.) His white blood count is 0.1. (Normal is 5-10.) His platelets, which help clot blood, measure at 22,000. (Normal is 150,000-450,000.) His hemoglobin, which carries oxygen to the blood, is at 9.2 (instead of 12-16), and his hematocrit is 27.5 (instead of 36-45). The melphalan has done its job.

Bob has been receiving growth factor shots each day since Day +5, just like he did before the apheresis to stimulate stem cell development. Today he received his first transfusion ever, a bag of platelets. The bag looked like it held thick chicken noodle soup without the chicken or the noodles!

Only occasionally does Bob search for a word as he's speaking, a sign of chemo brain or chemo fog. It's extremely common. He also is having some difficulty maintaining his blood pressure when he stands up. It seems there is a very fine line between his intake and output of liquids so that his pressure is high enough but he doesn't have swelling in his legs and feet. He's being as careful as he can and has had no falls (although he is embarrassed by having to wear a yellow bracelet that says FALL RISK. He calls it his gomer bracelet.). Other than these specific things, he just has a general feeling of malaise and fatigue and continues to be bothered with the pain from the neuropathy.

I have nicknamed him Captain Courageous. (Yes, I know the real title of the book is Captains Courageous and the plot summary doesn't fit but the name sure does.) He has met all of this head on with an optimistic attitude and without whining. And, you won't be surprised by this, he has enamored himself with all of the staff and some of the patients. He teases and jokes and extracts their life stories, and soon they seem like friends. He's in his element and fighting for his life.

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.

It's all in my head

Haven’t seen anything new on my blog site for months? The problem isn’t that I don’t have anything to say about a current event or haven’t remembered an interesting bit from my childhood. Indeed I have a huge file of ideas, each on a Post-It or scrap of paper (I haven’t figured out how to organize them yet.). And every morning as I drink my first and sometimes even my second cup of coffee, I welcome random thoughts to drift into my consciousness and bring me more ideas to ponder. (An aside: I thought that I was unusual, being someone who would gaze out the window, not really focusing on the garden or the lake, but letting my mind freefall, until I recently read everyone spends half of their awake hours daydreaming.) So, again, my problem isn’t a lack of something to explore, it’s that I write everything in my head and not on the computer. I just never quite get there.

Yes, I want to write and even feel a need to write but don’t start my day at the computer.  It’s similar to my wanting to exercise and knowing that I should exercise but never quite making it to the treadmill.  And, let’s see. . . I want to sort through all of my recipes. . . I want to make more entries in my art journal. . . I’d like to gather the family to make soup and cookies for the homeless. . . I’d like to organize my closets. . . and so on.  But it’s difficult to do these things when what I really feel like is hibernating.

Hibernating just seems so natural during winter. I can stay in my comfy PJs (the favorites being the red flannel with the penguins or the light blue cotton with the moon and stars) in the king-sized bed with its eight pillows and down comforter and read, daydream, or watch movies. Zoe (our 12-year-old,10-pound Yorkie) loves to hibernate too. Bob, not so much. His computer sends out a siren song that he is unable to resist. But I guess the time to arise has come.

Punxsutawney Phil didn’t see his shadow, so an early spring is on its way, and I have a lot to do. I’ve started my Lenten devotion and have organized all the bathroom cabinets (out with the 2008 medications). Now it’s time to get to some serious cleaning -- wading through the big storage closets downstairs, washing all the kitchen cabinets, cleaning all the glass on the pictures. You know the drill. And, yes, its time to start sharing some of my stories and recommending some of the great memoirs I’ve read.

Stay tuned. This bear has emerged from her den. I’m back.