Stem Cell Transplant Rescheduled

We just found out that Don's stem cell transplant is rescheduled to start on January 7th (next Tuesday).  He will check in at 8:00 am. 

Don is gun shy now, and is going to pretty much stay at home and away from people (except for doctor visits) and minimize exposure to germs!  We don't want to have another delay!  Additional line flush / dressing change appointments have been made.  Our bags are still packed (and we're ready to go...). 

Now that we know how many days there are before the procedure, Don will try and get some small things done that will work in that schedule, such as desk paperwork and tidying.  We don't want to throw any days away.  We are allowing ourselves to also do relaxing things, such as watching more movies and television shows on Netflix, doing a puzzle, and practicing on various music instruments.  Don has unearthed a couple of old Hohner Chromatic harmonicas, and is being half-way serious about learning to play them (and to accompany Sami on the ukulele).  The harmonica is probably more do-able at the hospital, when he feels up to it, than other instruments (tuba?), but he may still have Sami bring in the guitar later on.

All for now....

Cheers!

New Analogy

Dear Friends... We are all the way back to feeling well. The bug Don had was very short-lived. But, now, we feel a little like you do when your flight is circling around an airport for an extended period of time waiting to land. We do not have a new start date for the transplant, but we hope it is soon. We are so ready to get the rest of the transplant behind us!

In spite of the scratched start of the transplant thing, we are doing well. Doing a few tasks we didn’t think we would have time for, yard clean-up and paying bills, and a some fun stuff. Don was gifted a Netflix membership that allows us to watch a bunch of stuff snuggled in our own bed. Netflix has a limited offering, but we are finding things to enjoy. We are watching Cheers from episode 1. I think we are up to about episode 10. I even watched a movie on my Kendle Fire yesterday while working on a jigsaw puzzle. We are staying home so as not to expose Don to any other errant bugs! But we are not twiddling our thumbs.

Sami packed away most of the Christmas ornaments on Friday. It is always a little sad to say good bye to all of the pretty things. They are so full of nostalgia because they document the years we have been together for Christmas.

News Flash

Don woke up early this morning with stomach flu! Everyone in the family has had it and we had all taken such pains to keep him away from it. He will not go into the hospital until he is well over it. The way we look at it is that we are just lucky it struck this morning and not tomorrow after he exposed everyone at the hospital and had begun the treatment. He is sleeping now. It seems to be a fast-come, fast-go kind of bug, so the plan now is to wait a few days and then begin.

Ready for the Next Adventure

If you have ever been to Disneyland and gone on Mr. Toad’s Wild Ride, you know how we are feeling right now; just about to descend down that first roller coaster slide into a dark corridor and a journey that is new to us. Don checks into a room on the seventh  floor of the Cancer Center at 8 AM tomorrow morning, to begin the final part of the stem cell transplant process. They tell us Don will feel relatively well the first couple of days he is there. It takes a while for the chemo side effects to manifest themselves. Don will be given high doses of chemo on Friday and Saturday. He has a day of rest on Sunday. They reintroduce his own stem cells back into his blood on Monday. WOW. We’ll post updates every few days. We are feeling rested, content, and ready for the ride. We’ll keep our cell phones on unless Don is resting or sleeping. Don’t hesitate to call.

Don, 971-832-0570

Sami, 503-752-1361

Here we goooooooooo....

Getting Ready

Don will bring his new hat too, because for awhile his head may be bare.

It is quiet at our house. We are wrapping a few gifts and packing for the hospital. There is so much stuff to take! There is clothing - they encourage real clothes. Sami has a blow-up bed, and bedding. We both have laptops, Kindles, and iPods. Don is bringing his electric guitar (with headphones). Sami is bringing her uke. We are counting on there being some times when Don is up to doing something besides (well, you know the stuff one does when they are undergoing high-dose chemotherapy). At least we’ll be ready. For now, we are enjoying this quiet time at home. It will be the last for a while. Before dinner, we practiced our music a little; Sami on her uke, Don on his Taylor. Later this evening we'll treat ourselves to one more bottle of champagne and a movie.

New Hats

Eat, drink and be MERRY. Those were the doctors orders (well maybe suggestions). So we spent a lovely afternoon with a beer, some very fine food and two new hats. How do you like them?

John Helmer's Haberdashery on SW Broadway gave us lots of hats to choose from.

We are ending the day with some silly TV and a bottle of champagne. Are we good patients, or what?

The Incacaration Set to Begin!

Don will begin the final stage of his treatment on Monday, December 27^th. He will check into the 7N (north side of the 7^th floor of the Cancer Center) at 8:00 AM that Friday. He will be in the hospital for between 2 ½ to 3 weeks. He should return home almost cancer-free and in remission. Below are some the questions people have asked us, and ones we have asked the doctors. We have answered them the best we can.

Q. What happens in the hospital?

A. For the first two days high doses of the chemotherapy drug, Melphalan, will be given to Don through his catheter. On day 3 he rests, and will probably get to come home for a few hours. On day 4 he will have his own stem cells reinfused back into his blood. The rest of the 2 ½ to 3 weeks will be spent treating side effects, doing what ever is necessary to restore his blood to health, keeping infection at bay, and recuperating.

Q. What happens if his body rejects the transplant?

A. That has never happened. That only happens when a donor’s cells are used.

Q. Will the chemo make Don sick?

A. Everyone is different. Common side effects include nausea, mouth sores, tiredness, abnormal bleeding. He’ll probably have some of these side effects, although some people react nominally.

Q. Will he loose his hair?

A. Yes, at least some of it.

Q. Will he have blood transfusions?

A. This is very common because the Melphalan kills off not only the cancer cells, but many of the other bone marrow cells. It is common to get transfusions of red blood cells and platelets.

Q. Isn’t there a risk of infection?

A. Don will get a host of meds to prevent infection. It seems there are meds to lessen all the side effects.

Q. Can I visit Don?

A. Don can have visitors if he feels up to it. Visitor must wash their hands well before entering his room. Any one who is not feeling well or who has a cold, a fever or an infection of any kind should not come. We’ll let people know if Don wants visitors. Please call first. We’ll publish phone numbers in this blog and by email.

Q. How will they know it is safe for Don to come home?

A. They will test Don’s blood to see when it has recovered enough to fight infection outside of the hospital on its own.

Q. When will we have the old Don back again?

A. It takes several months for a person to get back all of their strength and vigor. Everyone is different.

Q. What can I do to help?

A. We don’t know now. Knowing you care is a great big help. We’ll be more specific as the situations arise.

P.S. Fresh flowers and fake arrangements with moss are not allowed.

Stem Cell Collection a Success

Here’s the latest as of today... Friday the Thirteenth

Yesterday was stem cell collection – day three. The short version is that Don had a really good day with 6.05 million good stem cells collected, for a three day total of 11.57 million. The goal was 10 million. This means there is enough for two transplants! No more 5-hour long stem cell collections.

The stem cell collection process is pretty mundane. One is connected by two of the “lumens” sticking out of the chest to the collection machine. Don was not at all mobile. Laying in bed that long gets uncomfortable. Plus one either has to be on good terms with a bed pan, on plan ahead.

The night before last was a long one. Don’s incision site continued to leak blood. Don was up much of the night dealing with that, staying over night again at the hospital.

To compensate, yesterday Don slept during part of the stem cell collection. The machine sort of chugs along and the sound is similar to being in a train. When he woke up Sami taught him a few ukulele chords. Don and Sami strummed “Ain’t Misbehavin” and Cici, the Red Cross nurse danced to the music. Don observers that ukuleles are neat because they are so portable and cute as well!

The stem cell harvest is over and Don is relaxing in his penthouse suite

Following the stem cell collection, Don and Sami made another gurney excursion through the bowels of Providence hospital (asking occasionally, “are we still he Oregon?”) Dr. Gibson (the catheter placement surgeon) met us in a little procedure room, where he the area with a shot, cleaned the incision site and sewed a “purse string” set of stitches around the place where the catheter enters Don’s body and pulled it shut. Sami stayed for the 15 minute operation. That sewing job effectively stopped the bleeding.

So, we are now in maintenance mode until the high-dose chemo and reinfusion happens, soon after Christmas. Maintenance means we visit the Out-Patient Infusion office at the Cancer Center three times each week to get the line flushed and the dressing replaced.

It may take Don a while to get used to three lines and valves dangling on his chest. They complicate dressing, undressing, and bathing. The apparatus should not get wet, and Don doesn’t want them to get tangled in his clothes. How to sleep comfortably is being worked on.

Before closing, we want to mention that we thought both of the Red Cross employees that did the stem cell collection were really great. Mike was there on day one, Cici did the collection on day two and three. Cici was a kick! She was professional and thorough in her procedures, but all the while she was kind and warm-hearted, and easy to tease and get giggling. You can almost say that we had fun. She called the collection machine “the albatross,” in a positive way.

The bag with the dark pink fluid hanging over the collection machine contains Don's stem cells. At the end of each collection day another Red Cross employee would show up with a little ice chest take the bag and transport it to Red Cross headquarters where it will be stored on liquid nitrogen.

Don wants to take this opportunity to thank Sami for her endless help and morale support, from being a second set of ears, to tying shoes and washing hair, and chasing down many cups of coffee at the hospital, and especially being there with him through all of this.

Don ends this entry by saying that he now feels a little more like a cancer patient.

Cheers!

Another night time visit to the cancer center

It is 8 PM and we are back in room 720. Once a day is okay, but we are a little tired of making two trips a day to the cancer center. On Monday, when he had his "line" installed, the incision  bled abnormally and he actually came back and stayed the night so they could keep there eyes on him. The second day (yesterday), the stem cell collection was not up to snuff, so we had to return to get a second med to mobilize his stem cells, Plerixafor. Today's collection netted more then half of what they need to do two transplants. That is great news, and means we will only be at this part of things for a day or two more... Yea! But we are here for another Plerixafor shot, plus his incision is bleeding a little again. So back we come.

The nurse put it in prospective, telling us about  another patient who has been coming in twice a day for six weeks for shots. (!!!)

On another good note, Sami's ukulele buds came by this evening and we jammed, Don was our audience, and we all had a good time. (Thank you Brenda and Jen).

Good night, one and all - we're outta here!

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Full Spead Ahead!

Don's dressing was changed one more time in the night. There was no clear reason for the blood loss. But after she changed the dressing, Don's nurse sat with him and applied pressure to the incision for about 15 minutes and that did the trick. No more bleeding. One nurse speculated that something must have been nicked during the placement of his central venous catheter yesterday.

At home Sami slept soundly, while in the hospital Don slept so as not to pull on, or roll onto his catheter and bandage. Probably not a very good night of sleep, but this morning everything was a GO for the next step to begin, the collection of Don's healthy while blood cells (stem cells).

Sami returned to the hospital before the break of day. Mike, the Red Cross nurse, rolled in at 7:30 AM with the"pheresis" machine, which is really a small centrifuge that spins around separating the lighter white cells from the heavier red cells.

We enjoyed Mike, the Red Cross nurse who collected Don's cells. Before he hooked Don up he explained a little about the machine and the collection process.

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We chatted with each other and Mike while the machine made a whirring sound. The process took about four hours. Don felt nothing out of the ordinary, even though his entire blood supply was filtered four times. A bag filled with a murky pink liquid, The catheter is really two tubes which allows for the blood to go both in and out at the same time. Amazing!

I expect some one at the Red Cross is counting the cells while I write this. It usually takes several days to collect enough. The whole process will happen again tomorrow. We are tired, but the cats are happy to have Don back, and he is happy to be back, so all is well with the world.

Looong Day

Today was a long day filled mostly with waiting around and hanging around. We checked into the 7^th floor of the Cancer Center (patient rooms) at 8 AM. Don changed into a swell hospital gown speckled with green flowers and hopped up on his bed. They took his vital signs. Next he placed his lunch order. He was already looking forward to lunch because he could not eat or drink until the procedure was finished. Then we waited. His procedure was scheduled for 11 AM. At 11:10 the surgeon showed up and said it would be a couple more hours before he could put Don’s “line” in because there had been an emergency and everything else was put on hold. Don’s lunch showed up at noon, and Don looked on longingly as Sami ate it. At 1:15 they finally took him down to the surgery area and installed the tube through which his blood will be filtered, and any meds or transfusions he may need will go in to his body. He was back up to his room by about 3 PM. A second lunch was ordered and he finally got to eat about 3:30. All seemed to be fine, and after waiting around for another hour they sent us home. Sami ran and errand and when she got back home, Don was on the phone with the staff because his dressing was soaked with blood. Back we went to the hospital, and back he hopped into bed. The wound continued to leak some, and so Don is being kept over night. After all, he is supposed to be back there by 6:30 AM. At least he got dinner, at about 8 o’clock PM. Sami is back home getting ready for tomorrow and reassuring the cats, and plans to climb into bed shortly. Hopefully, Don is already snoring away in room 720.

We are tired, and we are fine. The nurse said this was not terribly unusual and that the “collection” will most likely happen as planned. Our short-term goal is to get some sleep. We’ll post again tomorrow and let you know what happens.

Further Down the Road

Yesterday and today (Dec 7 & 8) marked the beginning of “mobilization.” That means each day Don is given a shot of Neupogen to stimulate his body to make lots of stem cells and move them out of his bone marrow and into his blood stream so they can be collected. Neupogen is the brand name for the drug, Filgrastim, a growth hormone. These shots go on each day until enough stem cells have been collected and stored for his stem cell transplant. The common side effect of this drug is bone pain, which he has experienced in his pelvis. The nurses say this is a good sign – it means the drug is working. As seems to often be the situation with Don, the pain has been mild. It did not stop him from joining in the Christmas decorating we did with the help of Paul and Emily.

By way of simplification, our Christmas tree is little bitty this year, but most beautiful!

Crossing the Street

Before Don’s body is subjected to the strong drugs of the stem cell transplant, the doctors want to know about his over-all physical condition. “Quantification” is the name of the game. To put numbers on Don’s physicality, yesterday he took tests, lots of physical tests; Pulmonary function, Echo cardiogram, EKG, a chest X-ray, and blood work. To find out his mental state and the nature of his support system we met with a Social Worker, then we met with the Transplant Coordinator to get more details of the up-coming procedures.

At the end of the day, his grade card was full of great numbers. 

Our favorite moment of the day was watching the Echo cardiogram screen in the darkened room as Don lay on a cot and the technician smeared cool jelly on Don’s chest with the sonar probe. The probe sends sound waves toward Don’s heart that are translated to shadowy pulsing shapes on the screen. We watched the chambers of his heart, the muscle walls, and the valves, all busily squeezing, relaxing, flapping, and beat, beat, beating. So much activity! We marveled at a machine that operates 24-7, from before we are born, until the day we die, perhaps 80 or 90 years, with no maintenance, aside from giving it regular food and exercise. The technician told us a heart cycles 4 liters of blood through it every minute. WOW! As a man who dealt with machines all of his life, Don was in awe of the one inside his chest. Sami’s take on the deal is that it is no wonder rhythm and music are so important to us, because at our very core we have a rhythm machine. When the technician turned up the audio of the sonar waves moving over Don’s heart they sounded like underwater rap music.

These tests are considered phase one of the stem cell transplant. Phase two is Mobilization and Collection of the stem cells, all out-patient stuff. That begins the day after tomorrow, Saturday, when Don gets his first shot of the mobilization drug, Neupogen. This part of the process takes about a week. We'll report on the details as they happen.

A Message From Don

Hi Everyone!

Thank you all for your sharing your support and concern for me over this last year.  It really makes a difference knowing that so many are rooting for me.

The truth be told, this hasn't really been all that bad a year for me.  The short version is that I've really not dealt with any symptoms of Bone Marrow Cancer, just the side effects of the treatment.  It was detected early enough to let me miss the bad stuff.  The treatment (chemo) has been quite tolerable...mainly lack of energy and LOTS of visits to the Providence Cancer Center, which end up taking a chunk of the day away once or twice a week.  I've had to be realistic about what I can and cannot do (my 'project mode' went out the window this year), but I've been free of nausea and discomfort for the most part.  The cats appreciate that they get more time with me on the couch.

If you haven't heard, it was a almost a twist of fate that the cancer was detected when it was.  My previous primary doctor moved out of the area, and I needed to find a new doctor, but I procrastinated.  I had a routine colonoscopy scheduled for the first of the year, and needed a referral from my primary doctor, so that moved me to find a new one.  Well, the new doctor I chose, Dr. Marina Mezey, immediately saw my tendency to Multiple Myeloma based on my existing records (mainly because of anemia).  She called me in a memorable phone call one evening, to tell me not to be alarmed, but that I needed more tests to be sure one way or the other about the possibility of Cancer.  Well, the rest is history, but it was because of her sharp eye that my diagnosis was made when it was (apparently a borderline call at the time).

I look forward to the next step (stem cell transplant) with mixed emotions...both wanting to get it done, and having a degree of anxiety.  It is a major procedure, with significant risks.  But, Sami and I both agree that we can't change the situation, and just need to deal with it in a positive manner.  We are both tuned in to everything that is expected to happen, so we expect no surprises (that's important to me).  We have had very positive experiences with all of the professionals we encounter at the Providence Cancer Center.  So...we are ready to proceed, and to emerge on the other side with something approximating my former condition.  And, thanks to medical advances, I expect to emerge in remission for enough years to make this all worth while (I may get to repeat the treatment down the road, however).  It wasn't that many years ago that having Multiple Myeloma was a death sentence.  I picked the right time to deal with this!

Thanks for listening!

Don

The Green Light

Don has been given the green light to get a stem cell transplant, which is the magic that begins a long-term remission of his "Multiple Myeloma" a cancer of some of the cells in his bone marrow. This is what we have been working toward ever since he began treatment over ten months ago.

There are three parts to the process:

Part 1: Medical tests to determine his over-all health, That is scheduled for Wednesday, December 4th. (out patient)

Part 2: "Mobilization and collection," where they get his stem cells ready to collect and then collect them. Right now that part is tentatively scheduled to begin December 6th or 7th and takes about two weeks. (out-patient)

Part 3: The transplant. This will probably happen after Christmas. It begins with two days of massive chemotherapy and then transfusions and reintroducing his own stem cells back into his blood. The rest is recovery. He will be in the hospital about three weeks. (In-patient)

They tell us that it usually takes several months to regain all of your strength and vigor. 

We invite you to join us on this very interesting and sort of scary journey......

For 10 months Don has been making weekly visits to the Cancer Center see his doctor and to get various drugs to bring the cancer level way down in preparation for the transplant. Here he is hanging out in the infusion room with one of the wonderful nurses, Heather.