December 2013 Update

I went to see the cancer doc today. The M-spike increased to 1.2, up by 0.2 over the past two months. The good and the bad news is that it is increasing at its same, normal rate as before, no faster, no slower. Although the doc will not make any predictions, I can do the math and see that at this rate, it will probably be sometime in mid 2015 before I resume chemotherapy, if I were to use the same trigger points as before. The better news though, is that the cancer doc is talking like it would be kind of nuts to resume at those levels, and might be wiser to let the cancer go higher before resuming chemo. That could push it back another full year before resuming, to mid-2016.

 

Carol and I will go see the good folks at Mayo in late January, and see what they have to say. Meanwhile, thanks for all the prayers, and happy new year to all!

Happy (early) New Year!

On New Years Day 2013, I swam one mile and was so excited about it that I set a goal of swimming two miles on New Years Day 2014, and foolishly made the mistake of publicly stating my goal on a forum such as facebook. Then along came a stem cell transplant at the Mayo Clinic Rochester for the months of January and February, and I was out of the pool as a precautionary measure against infections for months.

On June 24, I was able to resume swimming, and was pleased to get in a one-mile swim 10 days later on Independence Day. I have been trying to keep the routine up, and got in another one-mile swim last week.

Today, I went to the pool, planning to do a 1200 meter swim, but after I got into the swim, I decided, "Hey, I'm here at the pool, the swimming is going pretty good, I'm going to have 1200 meters (about 6 furlongs or 3/4 of a mile) in anyway, I've got an available time slot and the pool isn't busy on a weekday (could be busy on a holiday) - why not go ahead and get in my two mile swim a few weeks early?" So I did.

As the title declares, "Happy Early New Years!"

October's Test Results

I am continually humbled by the number of people who ask how things are going on the cancer front, or otherwise check up on me, and pray for me. I gave a blood sample a couple of weeks ago, and got the results and saw the cancer doc last week. The M-spike (measure of the cancer) has remained stable at 1.0 over the past two months, and has increased by only 0.3 from the reading 6 months ago in April. This means that the cancer is increasing at a much slower rate that it appeared to be over the summer. I will go back for another local test and data point in late December, then go back to see the friendly folks at Mayo in late January. Although the cancer doc will never make such predictions, I could see this going another couple of years before resuming chemo if all continues to go on the current course, although I am hoping and praying for much more time than that.

 

Bottom line is that for now I am feeling good, off chemo, and not scheduled to go back onto chemo anytime soon. Further, the cancer does not appear to have done any damage to the body (bones, organs, etc.). As my pastor's recent sermons from the Sermon on the Mount have reminded us, anything beyond these things is not something to worry about today. We have done all we can, and trust the rest to God.

 

Thank you all for the love, care and prayers.

Steady as she goes, Captain.

On July 8, I had a blood sample taken and shipped to Mayo Clinic for analysis. It showed no increase in the M-spike, which is the measure of the cancer. This level, no-increase is the new "hoped for", and is good news. More updates in about a month.

June Update

 

This week we got test results back from blood samples taken on Monday, June 10. One sample was analyzed locally by my local cancer doc, and the other was shipped in a chilled container for analysis by the Mayo Clinic in Minnesota. The local M-spike was 0.8, up from their M-spike of 0.7 in April. The Mayo M-spike was 1.1, down from their reading of 1.3 in May. The samples taken on Monday came from the same arm, at the same time, using just one prick of the needle and tubing. So, the Mayo lab read a little bit higher than the local lab, which is not a big deal.

What all of this means is that the surprisingly high M-spike reading at Mayo in May is probably a valid data point, but it also means that the cancer is not growing at an aggressive rate. The various cancer measurements (M-spike, bone marrow biopsy, and something called kappa free light chains) all tell very different stories, but taking them all into consideration, it is probably safe to say that the cancer is down to 1/5 or ¼ its level prior to the stem cell transplant. That’s not as dramatic a decrease as others have experienced or as we had hoped, but it is still good. If the cancer would stay at that level indefinitely without increasing, that would be wonderful.

The bottom line of all this analysis is that right now I am feeling great (still having to take it a little easy, but feeling great) and I am off of chemotherapy drugs. I now pick up and live my life as close to normal (or maybe a little better than normal) as possible, but we will continue to monitor the cancer every couple of months and hopefully this will last for a long, long time.

Thanks to all for love, prayers and concern.

Update # 2

On Monday afternoon, Carol & I sat in a small consultation room at the Mayo Clinic, and a very solemn faced doctor apologetically gave us the very bad news. Based on results from blood samples taken that morning, it appeared that the stem cell transplant had failed to alleviate the cancer. She was bewildered and obviously felt very badly for us, but could offer no explanation. We would sample again in June, and make plans to attack the cancer via chemotherapy. It's not just going back onto chemo that was the bad news - it was loss of a nice number of years off of the survival timeline, whatever that timeline might be.

On Tuesday and Wednesday afternoons, after returning to Dallas, we spoke to the same doctor via telephone calls and got just the opposite news. She had received results of the bone marrow biopsy, and just as bad as the blood analysis was in the bad direction, so was the bone marrow biopsy extremely to the good in the good direction. The biopsy showed the cancer to be at 2% or less in the bone marrow, by far the lowest it has ever been since diagnosis (it was 64% at diagnosis, 12% when my blood showed cancer to be the lowest in May 2010, and about 25% prior to the stem cell transplant in January). The bone marrow biopsy declares the transplant to be a success, but no one is using the R word (remission) as of yet.

Officially, we are awaiting another blood sampling to be done in June before any declarations are made, but the Mayo cancer doc is very optimistic. She described the Monday blood sample, in her medical terminology, to probably be "just a flukey test."

So, what has happened? In short, on Monday afternoon we got some very bad news, a lot of people did a lot of praying, and on Tuesday and Wednesday afternoons we got some very good news. I did nothing at all to merit this good news. Thanks to all of you for your praying, and please continue to do so. To God be the glory for the great things He has done.

100 day post transplant check up

in everything give thanks; for this is God's will for you in Christ Jesus. (1Th　5:18　NAS)

I will bless the LORD at all times; his praise shall continually be in my mouth (Psa　34:1　ESV

Today I saw the doctor at Mayo for my 100 day check up following transplant. To say that it didn't go as well as we had hoped would be a serious understatement. To say that it was worse than our worst imaginings would be accurate.

We are still awaiting results of the bone marrow biopsy, but based on analysis of the blood samples, it appears that the transplant had little to no appreciable impact on diminishing the cancer. The cancer is actually higher now than it was when we left here in February, or about half the level it was when we came here in January, and growing at a substantial rate.  For now, the plan is to check the blood again in about a month, and probably resume some form of chemotherapy soon thereafter.

So frequently Christians quip off "praise the Lord" in response to good news, and we should, but a proper understanding of theology is that God is always good, always kind, always loving, and always deserving of the most enthusiastic praise our hearts can ever muster, so in this, too, we give thanks and give praise.

I thank all for their prayers on my behalf. Please keep it up.

My Hair

I lost all hair on the top of my head and most of my beard during chemo at Mayo. As of April 29, I now have a full beard back, and a definite discernable fuzz on the top of my head.

Epilouge

It has been brought to my attention that I have not made any blog entries since coming home. My apologies for leaving the story incomplete. I was discharged from the program at Mayo on Feb. 14. It took us more than a half day to wrap up our business in Rochester and get checked out of the Gift of Life house, but we left early afternoon, and made it as far as Des Moines, Iowa, before stopping for the night. We were planning to take two more days for the trip home, but we got up Saturday morning and drove the whole way.

We arrived home at 10:30 PM on Saturday evening, Feb. 16. Our neighbors had the yard all spiffied up, spic and span clean, with new flowers planted and a welcome back heart on the door. They had even bought some basic grocery for us so we wouldn't have to stop late to do so. They sure knew how to make us feel welcomed back into our own home.

I started working a few hours from home the week after we got back, and then going in a few hours every day or so the week after that, gradually building my time back up. I took six weeks to transition back into working full time.  With all the sickness going around at our church, we were home for a month before we attended in person, as opposed to watching via live streaming on the computer.

Finis

I have been graduated, discharged, and generally kicked out of the Bone Marrow Transplant program at Mayo. The doc thinks it likely may have been a success; we won't know for sure until the 100 day check up in May. Having survived it at all is literally its own milestone.

The M-spike dropped from 2.4 to 0.9, and should fall some more. Think of proteins still being in the blood, and continuing with half-lives until diluted with new and good blood being produced from the marrow. Another indicator of the cancer, something called kappa light chains that we typically haven't monitored, has decreased to 10% of the pre-treatment value.

Our plans are to ease on out of town today and take 2 or 3 days for an easy trip back to Texas.

I am feeling good.  It is good to have this behind us, and we are hopeful that it will have accomplished the purpose for which we undertook it. Thanks for the prayers and encouragement.

Hospitalized

Late Thursday evening, 2/7, I was admitted to hospital with fever, and severe shakes and chills. It turns out my body was producing an abundance of white blood cells (WBCs), a condition called peri-engraftment, or engraftment syndrome. The function of white cells is to attack things, and these were young and inexperienced WBCs who bent themselves on attacking anything and everything in the body, and creating general mayhem.  After running lots of tests to exclude other possibilities, things got under control by 2:00 AM Friday.

As a precaution, I was kept in hospital Friday and Saturday for observation and very lengthy IV infusions of various antibiotics and things.  Sunday I was released, and I am now back at the Gif of Life House on out patient status with Mayo.

Indicators

While it is still too soon to say that engraftment has occurred, there are some promising indicators over the past few days.  After the white blood cell count bottoming out and staying for several days at 0.1, it increased to 0.2 yesterday, and 0.4 today.  This most likely means that the new stem cells are making themselves at home in the marrow, and making those WBC’s.  I am also facing less fatigue and nausea (still a lot, just less, and more manageable).
 

Our daily routine is still to go to the hospital every morning, and now every evening as well for various medications, blood draws, and some transfusions. We were there until 10:30 PM last evening.  We usually ride the shuttle van now in the mornings, and take our car in the evenings when the van doesn’t make its runs.
 

Rochester remains a winter wonderland.  After a week of temps in the -10 to +15 range, today starts a stretch in the 20’s and 30’s.  A fresh falling of snow makes it all look nice.
 

Thanks for all the love, prayers and concern.

Engraftment

The stem cell transplant was accomplished yesterday, 1/25/13. It felt really good, emotionally and physically, to get those stem cells back into my body again. What is going on in the body right now is that the marrow cells exposed to the chemo will continue to die over the next few days and the stem cells replaced into my blood stream will find their way to the bone marrow (where they are happiest) and begin to develop into the various cells necessary, most notably white blood cells.

While the big stuff is over, the critical phase of engraftment has begun. The stem cells need to re-establish the bone marrow. Our routine over the next few weeks will be to show up at the hospital at 9:00 every morning and have an examination and a blood sample drawn. Most days, we walk the 5 blocks to the hospital, and it will be good if we can keep this up. Adjustments will be made daily to the various oral medications I am taking, and if necessary I might have to show back up in the evening for a special infusion/transfusion of one type or another.

This is all in addition to lifestyle modifications and germ warfare equivalent to several chapters of Leviticus, including wearing a face mask, avoiding crowds and social contact, avoiding certain types of food, and cleansing, cleansing, cleansing.

If this proceeds on a typical schedule, I should continue to feel reasonably well for another day or two, while I still have some functioning marrow. By Wednesday of next week, 1/30, I should start to feel really crummy, and that should last for a week. Patients usually have to be admitted to the hospital briefly during this time for infusions or transfusions, but I certainly hope to avoid this.

Hopefully, by Friday, 2/8, my blood counts w ill be up and I will begin to start feeling better. Then, maybe another week of recovery before I am released. This could shorten a little or stretch a lot, but it is a typical schedule. A succesful engraftment with ashortened time frame, no hospital stays, and no transfusions would be appreciated.

Since we seem to be settling into a routine, I will only update the blog as major developments occur. Little news items go onto facebook.  Thanks to all for the prayers and words of encouragement.

Chemo & Transplant

Stem cell harvesting was completed today. With a goal of collecting 6 million stem cells over a week's time, we collected 4.2 million on day 1, and an amazing 10.4 million today. This jumps the schedule ahead 4 days, and means that the next three days will be the really big ones. Wednesday and Thursdays are the days they will kill the bone marrow, and Friday will be the day they reinject the stem cells to get the marrow going again. Thanks for all the prayers. We are truly grateful to God for how well (not necessarily easy) the past few days have gone.

Harvesting - 2

Harvesting

It is Monday morning, 1/21/13. Today is the start of the harvesting phase of the transplant process. As I type this blog entry, my blood is being withdrawn from my body, spun around in a centrifuge at 2400 rpm to separate the stem cells into a thin layer from which they are extracted and stored, and then the rest of the blood is placed back into my body. By the time the process is completed over a 4 to 5 hour period, the machine will have withdrawn, processed and replaced the equivalent of more than 3 times the volume of blood in my body. You'd think all that spinning around of my blood cells would make me dizzy, but I seem to be doing okay.

Our schedule today and for the next few days is to show up at the hospital at 7:00 AM and go through the plasmapheresis process for 4-5 hours. This will go on until they have collected about 6 million stem cells (enough for two transplants). It could be 3 days, it could be 7. They/we just don't know. Today through Wednesday we also have a training class that starts early afternoon.

The weather outside is cold. The high today will be -5, but the wind chill is -33. Carol has some comments about it from our brief walk outside, but this morning we  rode the shuttle from the house, rather than walk the 3.5 blocks from house to clinic.

So many of you have sent me messages of encouragement and have let me know you are praying. I am truly overwhelmed, and grateful for each one.

Boosting

Last night, Carol & I arrived back in Frostbite Falls, MN.  We flew from DFW into Minneapolis-St. Paul (from one twin cities to the other), then caught a shuttle on to Rochester. It is a balmy 7 degrees here at 10:00 in the morning (balmy, as in insane, not balmy sunny and warm).

We have received insurance approval to proceed, so this afternoon, I begin Step 3 of the transplant process, boosting. Today through Sunday, I will receive injections in the stomach of a drug called neupogen to trick my body into producing more stem cells than normal. This will force the stem cells, which normally like to hang around in the bone marrow, out into the normal flow of the blood stream. Other patients tell me it doesn’t hurt, but little do they understand my low definition of “doesn’t hurt.”

After this afternoon’s appointment, I will go over at 6:45 or 7:45 each morning for my injection, and then they will check stem cell concentrations early Sunday evening. If there isn’t a large enough concentration of stem cells in the blood stream by Sunday, they’ll hang a sign (by drug) onto the entrances back into the bone marrow that says “no stem cells allowed,” and they will back up and be forced to accumulate in the blood.

 Friday, I am also to have a palindrome installed, which will be a couple of tubes coming out from a central vein in chest, to facilitate all the blood working coming up. It is also referred to as a “central line,” not to be confused with an Illinois Central Line, or Southern Central Line.

If all goes according to plan, we will begin Step 4, Harvesting the Stem Cells, on Monday.

Tuesday Afternoon (Happy & Sad Stories)

On the brief visit we just had to Mayo Clinic in Rochester, we were kept pretty busy rushing between appointments and testing at the clinic. On Tuesday afternoon, however, we did get a chance to visit with some of the other guests in the Gift of Life Transplant House. Most of the stories have happy endings. Many of the patients are there for a stem cell transplant, using their own stem cells, and the history of success is very high.  Others, though, for various reasons, cannot use their own stem cells and must rely on a donor. Their success rate is not so high, and on Tuesday one resident got the news "We're sorry, your body is rejecting the donor's marrow. We've done all we can do, and there's nothing left to try," and his reply was, "I just want to go home." We visited with his sister/caregiver that afternoon.

And then, there are the situations where even the happy story is integral with a tragedy.  Some of the patients are receiving transplants of heart, lung or liver, and there is the awareness that although they are alive and have survived the transplant process, it was at the cost of some other person's life. Sometimes, the organ recipient will read or hear in the news about a specific young individual's life cut tragically short by an accident, and know they are alive because that youngster has died. They share the emotional mixture of joy and sadness, and gratitude and guilt.

Late Tuesday afternoon, we had to run back to the Mayo Clinic, then wandered the shops of the downtown area after dark. The picture to the right is of Carol at our dinner in a well-recommended Italian Restaurant named Victoria's. That's an odd name for an Italian Restaurant, but the food and the atmosphere were superb!

Synopsis of Step 1

Just now have time to give you a little update on the completed Step 1 (Assessment) at Mayo.  Monday and the first half of Tuesday were filled with all sorts of tests and sampling. They took 13 separate samples/tests, including a sample of the bone marrow and numerous X-rays. We had a brief break on Tuesday afternoon, then all day Wednesday was spent meeting with the RN who will be the transplant coordinator and the doctor in charge of the procedure.

 

The upshot of it all is that my heart and lungs are in great shape, and the other organs such as liver and kidney are in good shape, too. The skeletal frame is also in good condition, with still no sign of damage from the disease. Cancer activity in the bone marrow is at 20% - 30% (20% - 30% of the cells are affected by the cancer).  This is still significantly less than the 65% at diagnosis, but up from the 12% at last measurement 3 years ago. The M-spike indicator of the cancer showed no increase from last November at Mayo (7 weeks ago), but I'm a little unsure of those readings.

 

Carol & I decided to return to Texas for a week of working while in Step 2 (waiting for insurance to approve further procedures). If all goes according to plan, we will head back to Rochester on Wednesday afternoon, and begin Step 3, which will be several days of injections to boost stem cell production, and getting fitted with hardware called a palidrome (sp?), which is flexible tubing inserted into a major vein in my chest to allow for extensive blood work in Step 4.

 

Thanks for prayers, friendship and concern.

Home Sweet Home

Our home while I am receiving treatment at Mayo is the Gift of Life Transplant House, 705 Second Street SW, Rochester, MN  55902.  Here are some photos of the house. The first was taken at 6:45 AM while I was walking the 3 1/2 blocks to the Mayo Clinic. The second was taken on the way back home shortly after noon.  Also ,here is a like to the house website. The picture on the website is of a second, newer house right across the street. http://www.gift-of-life.org/

















The portion of the house shown was originally the residence of Dr. Edward Judd, the first doctor/surgeon to join the staff of the Mayo Clinic after the two original brothers. We are staying in a new wing added onto the house at the back. 

Step 1

The stem cell transplant is a multi-step process. On Monday, Tuesday and Wednesday of this week we are in step 1, which is testing, testing and more testing to evaluate the stage of the cancer and detemine my viability as a stem cell transplant patient. They have sampled and tested all sorts of things, including a bone marrow sample on Monday.  After 3 days of testing, we begin a week of waiting on the insurance company to approve the process (step 2). During this week, we plan to return to Dallas on Thursday, 1/10, work for a week, then come back to Rochester on Wednesday, 1/16.