Day 11 - Life left of the decimal point

Those little stem cells are waking up! This morning’s white blood count moved up from .3 to 1.2 and I am feeling much better. Amazing what happens on the left side of that decimal point.

Julie reported the last three days were challenging. I woke up this morning feeling better. My gut seems to have settled down and the cream concoction recommended by my night nurse has soothed that “unseen area of irritation.” Of course, my underwear has taken a serious hit – but we packed lots of Jockey shorts and there is a laundry area in our hospital hotel.

Butt paste is amazing stuff. Our granddaughter, Madeline, who is well on her way to a life without diapers, is very aware of its fantastic properties. I was introduced to its abrasive resistant as well as soothing qualities many years ago on RAGBRAI – the week long bike ride across Iowa.

Life on the left side of the decimal point holds the promise of more bike rides. Maybe not a week-long tour across Iowa or Nebraska, but certainly summer rides with Julie on the bike trails of Lincoln.

Life on the left side of the decimal point includes a trip to Salt Lake City to visit Andrew and Mary, taking in Mary’s art show, drinking a few cold brews at Squatters, and maybe a stroll through the farmer’s market. There is also a trip to Minnesota to hug Madeline, Courtney and Tim in person, see the remodeling project by Tim’s Dad, maybe a picnic, and quiet evenings of enjoyment being together.

Joyce Rupp is an author and spiritual guide introduced to me through my Prayer and Meditation Group. Her writings and meditations have been a steady companion for me during this journey.

She writes of liminality – “the uncomfortable ambiguity when we are standing in the middle of a juncture of significant change.” As Julie and I have counted the days since the stem cell transplant, we have been in liminal space knowing that significant change is occurring in my body but not yet able to see the results of the change.

Rupp reminds us: “Liminality requires acceptance of mystery and a heart full of trust.” At this time, I must accept the mystery of my body’s healing powers created by God and focus a “heart full of trust“ that those healing powers are well supported through the medicines and knowledge of my care providers as well as the prayers and encouragement of our friends and family.

Another way of saying this which I found humorous and shared with one of the doctors here at the Medical Center comes from the French writer and philosopher, Voltaire - “The art of medicine is in amusing a patient while nature affects the cure.”

I am grateful for the promise of life on the left side of the decimal point and for the creative, regenerative and comforting power that assures such a promise.

Grace and peace,
Tim.

Day 10

Greetings from Room 7435 at University Towers, University of Nebraska Medical Center. The last three days have had its challenges. Tim’s counts have bottomed out from the chemo the week before the transplant. He has received several bags of platelets and is getting two units of blood today. His biggest problem has been intestinal distress from the chemo. He has eaten lots of yogurt, applesauce, toast and Gatorade. He tells me daily that he is looking forward to the day when he can sit down to a steak and glass of wine. I am afraid that day is a few weeks off because even when things slow down, his gut will be sensitive. At least that has been our experience from the past. His white blood count still needs to come up before he can go to outpatient status and come join me in my room in a building adjoining the hospital. At that point they will monitor his counts, see how strong he is and hopefully after a few days let us return to Lincoln. They say it takes about a month of recovery at home before a person can return to work. This is day 10 since the transplant and typically the white blood counts will start to return sometime between day 9 and 15. The sooner the better as we are both getting weary of the process. They are telling us that if they had given him a grade compared to other transplant patients, he would be an A. Everything that he has had happen including a fever a couple of nights ago are to be expected. He and I have been able to walk every day since the beginning except for last Thursday when he was feeling bad due to the fever. The blood cultures drawn at that time have not grown anything so it was probably just his body fighting to make cells. We really don’t want another blood sepsis, but they assure us that they can deal with that too. So we grow weary but we remain positive and hold on to the belief that we are not alone. We are strengthened knowing that many are calling, emailing, sending cards, and holding us in their thoughts and prayers daily. We are planning on being home by this time next week barring any complications. It never hurts to have a positive attitude. Stay tuned. Julie

Pictures of the Transplant / Re-introduction Process

For Julie's co-workers and our many friends and family who have expressed an interest in the process of re-introducing my stem cells to me - here are some pictures.

Harvesting stem cells

 

The stem cells arrive on transplant day and "their" nurse gives them a warm water bath.   The bath looked like an old turkey roaster to me.

Their spa experience with the warm water bath was required because the stem cells were frozen and came packed in dry ice.   Each bag came in a metal container - the container was labeled as was the bag of stem cells inside.

 

The stem cells had their nurse to watch over them.

I had my nurse to watch over me throughout the process.

What a team!

 Of course, I was prepared to greet those little fellas as well with a name tag - just to ease the introductions - and a sign to let them know how happy we were to have them back.

They monitored my vital signs through the process....

and Julie kept my spirits up. 

 

Finally, stems cells are back and we celebrated with a cake provided by the Medical Center staff.

Grace and peace,

Tim.

Day 5

I am sitting in the hospital room on day 5. That is five days from the reintroduction of my stem cells. The count of days started at minus 6 (-6) with the start of the chemotherapy to knock out my bone marrow. This is the twelfth day of my hospital stay.

My countdown proceeded upward to day zero – the transplant day. I received chemotherapy drugs each day during the countdown. The most eventful day was the last. I had to eat ice chips and popsicles before, during and after the administration of the chemo drug, Melphalan. Apparently, keeping a cold mouth helps to prevent or lessen mouth sores caused by the drug.

I didn’t complain – I like popsicles and there was a ready supply of grape and cherry, my favorites. Julie likes root beer flavor so I invited her to share in the mouth chilling fun.

On the day of the transplant, I broke out a sign welcoming my stem cells back and name tags for Julie and myself to avoid the awkwardness of a stem cell not remembering our names. This journey needs some light-heartedness.

Julie posted the sign on the heart monitor and I gave us both name tags to wear as we greeted my stem cells back to my body. The humor was appreciated by the medical staff and we have received many a smile and comment on our effort.

Julie and I walk each day. We wander the hallways. I have to wear a mask and gloves now whenever I leave my room because my blood counts have dropped. One of the housekeeping staff, Mark, who operates a floor cleaner, has become a friendly contact on our evening journey. From some reason, my mask and gloves is a clear give-away that he can spot from quite a distance down the corridor. Each encounter is cause for the sharing of brief pleasantries.

We have had a few welcomed visitors. Some of our visitors had to gown up and put on masks and gloves; others we have met in the large lounge with me in mask and gloves. Unfortunately, my blood count has fallen so low that I am not taking any visitors at the present time. As I hit the lowest point of the bone marrow’s shut down, my immune system has become so compromised that I am not able to fight off any invading germ.

So for now it’s Julie and the medical staff who are my daily companions – oh, and I bet we will see Mark, the floor cleaning guy, during our evening stroll. It’s always a good thing when you can share pleasantries with the people in the neighborhood.

Grace and peace,
Tim.

Return of the stem cells

They’re back!! I successfully received my harvested stem cells this morning. It was quite a process involving thawing the frozen cells in a warm water bath – pampering the little fellas;  hanging the bag of thawed cells to drip through the IV tubing – “line up you guys”, “let’s go, let’s go”; then into the catheter in my chest and on to their ultimate destination – my bone marrow.

Now we wait to see if this crowd of stem cells can negotiate their way back to my bone marrow. Being stem cells of the male persuasion I hope they ask for directions if they are having trouble finding the destination.

If you were visiting me today, you may wonder from the smell,”Who’s cooking up creamed corn in the hospital?” Yep, creamed corn. That is the odor of the preservative used with the frozen stem cells. It is released from my skin and on my breath.

That's  the medical explanation.  Or maybe, those stem cell characters like packing creamed corn on these trips. I know I loved to take creamed corn in my camping knapsack when I ventured into the woods with the Boy Scouts. Nothing like creamed corn over an open fire!

I am feeling good -- strong and rested following my two hour nap and a warm shower.

Julie and I tour the hospital hallways each evening when the chance of encountering germ ridden folks is minimized. It is actually quite pleasant to walk the hallways with the evening lighting and the stillness that settles into a busy place at the beginning of the night.  It's a reflective time of the day and time just for the two of us.

Julie and I are so grateful for all the warm wishes, prayers and encouragement we have received from everyone. Thank you.

Julie tells me it’s time to go for a walk. Good night for now.

Grace and peace,
Tim.

Last Chemo Treatment – we hope!

It is 8:30 a.m. and Tim is chewing on crushed ice for 30 minutes before his last chemo treatment. He will continue this throughout the infusion and 30 minutes after. They say that it has been shown that if the mouth is kept very cold, the mouth sores produced as a result of this chemo are reduced by 50%. That sounds like an easy solution.

He also gets popsicles so I ordered up a root beer one for me. Figured it could be a good photo moment. Stay tuned !

This infusion is only about 30 minutes long and then he is done for the day. Tomorrow is the big day. The transplant should start at around 9:30 a.m. He has 4 bags and each should take about 15 minutes. It is hard to believe that all these months and treatments culminate in a 1 hour procedure.

They call transplant day, “day zero.” They refer to each day after as day 1, day 2, etc. They tell us that on day 5 he gets antibiotics, day 9-15 the bone marrow starts to regenerate new cells and so on. But every milestone is followed with the words, “but everyone is different.”

So far the only side effect he has had while the chemo has been given has been a big cramping in his right hand. Goofy!

They are giving him a muscle relaxant. He will be tired and sleepy in no time. Good deal, then I will have control of the TV remote and he won't even care.

Tim has done very well so far with no nausea to speak of yet. We have been able to go for long walks around the med center at least twice a day. He has been strong and in good spirits. We know that the later part of this week and next week may be more challenging.

We miss all of you and appreciate your thoughts and prayers. Share this with others.

Love,
Julie and Tim

It takes village

I am sitting here in the University of Nebraska Medical Center watching the snow float down onto the “Healing Garden”. It is quite pretty but not a place I would go to sit at this time of year.

Julie and I have also checked out the chapel and a small meditation room that sit among the many rooms, hallways and massive doors within this medical complex. These intentional quiet spaces offer opportunity for reflection and the centering of oneself in silent meditation. I was pleased to see places for the spiritual. These are gifts for those seeking healing and their healers alike.

My chemotherapy started up Thursday evening and I am now on a routine getting two drugs twice a day – 4 and 5 AM then 4 and 5 PM – through Monday with the last treatment on Tuesday.

These are long days with small spurts of activity and then lots of time on my hands. Julie is staying in the hotel that is attached to the hospital. She comes to visit and spends a good portion of her day with me. We take a walk twice a day that is very helpful.

The nurses have cautioned us about visitors – no coughs or sniffles allowed and if you have not yet had your flu shot at least two weeks ago – call me. The good news – Julie is still receiving visitors so call her and she would love to meet face to face – just not in my hospital room.

These precautions are for me. They are based on the expectations that my blood counts are going to drop compromising my immune system once again. Most importantly, I am so close to day “zero” – that will be TRANSPLANT DAY the day I get my stem cells back. We don’t want to unnecessarily risk not moving forward with the transplant / re-introduction of my stem cells.

Of course Transplant Day would not be possible without the prayers and encouragement from all of our family, friends and co-workers.

In addition, we are especially grateful for all the excellent medical care, compassion and laughter received from the staff at Nebraska Hematology – Oncology, the staff on the fifth floor at BryanLGH East, the staff in the BryanLGH Specialty Clinic, as well as the staff at the University Hospital.  Sandra Sasse, our Lymphoma Case Manager at UNMC has been an invaluable source of knowledge, understanding and compassion throughout this entire journey.

This shout out has to include the ancillary services in radiology, nuclear medicine, the laboratory (dare not forget the laboratory), emergency room, and the UNMC geriatric clinic. Why was I at the geriatric clinic? I’m not sure but it must be where they send all the bald old men with a limp for their Neupogen shots and blood draws. Of course, I cannot forget the good natured and talented Red Cross nurses in the stem cell collection room at UNMC.

Finally, I am grateful for the talented doctors who have guided and accompanied both Julie and me through this journey: Dr. Hutchins, Dr. Vose, Dr. Moravec, Dr. Morin, and Dr. Stadler. There were also many other doctors and physician assistants at the various hospitals whom we have encountered and who attended to my health care needs.

For all of these various supporters and health care providers we are grateful.

As you can see – it takes a village – not just health care providers, but a true community of various skills, strengths, and sensibilities. Each group adds value to the process of healing. From my perspective, no one group is more valued than another in contributing to my healing, wholeness and harmony. I praise God for the creation of such a community.

Grace and peace,
Tim.