Happy Holidays!

I would be upset about losing my hair, but I didn't have all that much to begin with! However, while there may not have been much there it sure was a good insulator!

Beck and I just returned from seeing Dr. Linker at UCSF. He says the chemo did (is doing) exactly what it was supposed to do. My blood counts are better than they’ve been in a long time, the Sweet’s has not reappeared, there is no pain, and the steroids are down to 5mg daily. All this is terrific. Next week (the day after Christmas) I will have another bone marrow biopsy. I agreed to allow them to do it as long as I know nothing about it. The minute I do, we stop and rethink the process!

Two weeks after the biopsy, there will be a family meeting at UCSF to discuss the hard truth about what will happen, and what we all can expect. Linker blocks out 1.5 to 2 hours for this meeting in off clinic hours so we’ll not be disturbed. Approx 2 weeks after that, I will enter the hospital for the transplant. The date won’t be finalized until mid January, but it likely will occur early in February. Personal to Diane: Lisa will contact you directly to discuss time tables, events, etc.

For now, I just recuperate. There have been bouts of nausea, although infrequent. The doc has given me a stronger medication to fight that. I still am weak and tire easily, but it seems to have improved when compared to the day I returned home from the hospital. As the doctor said today, we have to let your body get strong before we attack it again. Frankly I must admit I’m not looking forward to going back there. I wish I hadn’t had a preview, but I am determined to fight this disease and to eventually return to cycling and to the golf course. The ultimate goal is to ride Seattle to Portland July 11th and 12th 2009. I’ll update when the dates are firmed up. Until then, Merry Christmas to all (or Seasons Greetings as the case may be).

Rick

Going Home with a Sibling Donor

When I arrived here 26 days ago, the expected stay was to be 30 days. It appears now that I will be released as early as tomorrow. More on that later.

The larger news is that my sister Diane has been found to be a perfect donor. This is important for several reasons. Had a sibling match not been found, I would have had to search the National Donor Registry. At minimum, that would have delayed the transplant by at least a month, and probably much longer. Worst case, there would be no match found. The other reason a sibling match is important has to do with transplant complications. The single most worrisome side effect is Graft Versus Host Disease (GVHD). In a healthy system, the body's immune system recognizes and attacks threats. GVHD is the opposite; the newly transplanted blood knows it's in a different environment and begins to attack the host (me). This is potentially life threatening if major organs are attacked. GVHD is also a very common side effect, monitored and watched very carefully. With a sibling donor, frequency and severity are reduced. So I'm thankful I have a sibling donor.

As for departure, I am scheduled to be released tomorrow as of this writing. One of the conditions that needed to be met was that the Infectious Disease docs had to approve my release on a specific oral antibiotic. I was just informed that that approval has been received. I also have to meet a minimum oxygen saturation rate which test I passed with flying colors not 10 minutes ago. However, as much as I hate to admit it, plans could change, and I may not be released tomorrow. The hospital has to get all it's ducks in a row, hoops have to jumped through, paperwork must be completed, etc. Keep your good thoughts coming.

We have only just begun this journey. I still have to fully recover from this chemo, and then the transplant looms. However my blood counts have rebounded remarkably. There's no reason to believe my marrow won't continue to produce healthy cells long enough to reach transplant. There are several silver linings already. My siblings are closer than they have been in years. The disappointment felt by Steve and Linda is a measure of a love we never shared before. And the joy found by Diane is a pleasure to see. In addition, I have received cards and well-wishes from all over the United States from fellow stamp artists that my sister Linda knows, and was further extended by someone named Diane S. (whom I have never met) to the "Guardian Angel Group." Beck and Emily have become fast friends with two women each of whom rents space near UCSF. They came to us through friends who made calls on our behalf. And all of that doesn't begin to cover the endless cards, calls, love, and support that we have received from all of you. Words can not express our appreciation.

More as events dictate,

Rick

"It's Christmas Time in The City"

"Ring-a-ling! Hear them Sing! Soon it will be Christmas Day!"

It has been a week of downs and ups. Rick did not, unfortunately, start the week off in a very good state, and it went downhill from there. He developed 2 different infections, that worsened his condition. Thursday he began showing small signs of improvement, that have continued today. Both Becky and Emily spoke with him this evening and noticed that he sounded a little more like his old self. It would appear that the chemo has done its job, and the blood counts are SLOWLY beginning to rise.

SHE'S A MATCH!!! We received the good news this week that Rick's older sister, Diane, has been deemed a "perfect match!" Should Rick continue to improve, the hope is to allow his body time to rest and gain enough strength to receive a transplant roughly 6-8 weeks after this release. During this time, Diane will go through her own medical work-up in order to be declared in "good medical condition" for final approval. Once again, all the stars must be aligned for the next step to occur.

Emily and Becky will be back in The City for the weekend. We all so greatfully appreciate the outpouring of love, cards, gifts, and words of support. It has meant the world to Rick to hear the voices of those who left messages, and encourage the continued calls. We are continually greatful for all of the love and support that comes our way.

Lots of Love and Hugs

Not feelin Too Hot...

...or perhaps the opposite is true. On Saturday Dad took a downward turn. He started feeling rather 'punk' with general malaise. He didn't have much energy and didn't want to do anything other than lay in bed without TV. He even turned his nose away from food. On Sunday he spiked a fever, which has since broken, however the nausea has come back with a vengence. He is most uncomfortable and his spirits are quite low. Blood cultures have been taken to check for infection, but the doctors seem confident that this was to be expected and a result of the Chemo. At this point his blood counts remain very low, which is not unusal, they would expect the counts to begin to rise by the end of this week. He continues to have red cell and platelet transfusions as needed.

This turn has been felt deeply by all of us. Up through Friday he was feeling quite well, he had a lot of energy, and was getting his minimum of 10 laps around the floor (approx 1 mile) in. In fact people would move out of the way when they heard him coming, he was a speed demon!

With regards to Sibling donors: 2 of the siblings were eliminated in the 1st round of testing, the 3rd is being advanced to the next round.

You continued thoughts and prayers, and overflowing generosity has been a blessing to, and enjoyed by, all of us. His walls are bursting with cards and well wishes that you have all sent, and we make sure that anything that arrives at the house gets to him. Please continue to lift us in your thoughts prayers in the coming days.

Lots of Love, Hugs, and Thanks

On Anti-biotics and Lower GI Distress

Today is Monday, my 13th day in the hospital. I have been biopsied, cultured, and tested. Then they poisoned me. But I am STILL ALIVE!

I survived the dreaded day 7 chemo without nausea and vomiting (OK with only slight nausea). Everyone is amazed, not the least of whom is me. I figured this would be sort of a dry run for the transplant, but now I don't know what to think (except it is NOT a DRY run. I am left with a certain malady not normally spoken of in polite society. It involves keeping myself proximate to the bathroom. It has been ongoing for 4 days. This morning they think it has to do with the amount of antibiotics I'm being given. (All the cultures are negative). The day before I was hospitalized I developed a lump which turned out to be cellulitus (sp?). No biggie (actually it got quite big). It's gone now, so the antibiotics used to treat it will be suspended tomorrow. Hopefully that will also solve my other problem.

The hospital is a marvel of continual sameness. They have figured out how to make their patients the top priority while providing pretty good care. You do NOT, however, want to be in need between the hours of 7-8AM or 7-8PM. That's when the shift changes and out going nurses give their report to incoming nurses. Response time during those hours can be slow; conversely you can run around naked in your room if you're so inclined as you'll not likely be walked in on. Then rest of the time, vital signs are taken, food trays delivered and picked up, meds given, doctors visit, all on schedule that's determined by God knows who (and usually at the exact moment the mystery is about to be revealed on the show you've been watching). Oh well (or as today's nurse whose name is Harrison would say "Oh my glands!")

I am faring quite well all considered. There are other patients on this floor who have it far worse. And on those nights that I do my laps, I see a waiting room full of people who have loved ones in desperate straits, possibly with no warning, getting a crash course on everything I've learned about unexpected illness, frailty of life, and who loves you. Keep those cards and letters coming...
Rick

Dodged A Bullet... Again

Greetings from Long1107 where the meds are hung and the platelets are flowing. It's Friday at 5PM and I feel pretty well all things considered.

I "sailed" through the Etopocin which was supposed to be VERY ROUGH. I felt only a little nauseous yesterday, but no vommitting; I did get a headache, but the "mother of all hangovers" that was supposed to grip me never showed up. Funny, I don't remember getting drunk, hope I had a good time!

Seriously, my chemo has completed and I have been very fortunate in not being overcome with negative side effects. Other than staying pretty close to the bathroom for 36 hours, I have dodged another bullet. At this writing, my blood counts are very low and I am receiving platelets. I was transfused with red cells yesterday. The hope is that as my blood recovers, it will come back as healthy cells, making me stronger for the transplant. I will remain in the hospital for about 3 more weeks as that happens.

In the mean time, my family arrived at the hospital today with all manner of Christmas decorations and photos for the walls in here. Emily is having a great time getting anyone who enters to pick a piece of paper to add to our paper chain. There's a small tree on the shelf, my stocking is hung from the corkboard with care, and lights will be up tomorrow. It's beginning to feel a lot like Christmas.

A special thanks to Kerm for the woodweekend photos, and to the "Poster People". You made my day. I love you all.

The Big Guns

Greetings!

This is Emily, I have not been at the hospital today so this update comes by word of mouth from Mom...

Dad had his last day of Chemo today. It was administered over 4 hours this afternoon, and there was a nurse whose job it was to sit in the room and monitor his vitals every 15 minutes. She did not leave the room at all. He has started to feel the effects of the previous chemos, but has not been 'sick' as of yet. He has not had any interets in food or doing much of anything since yesterday afternoon. As for today's chemo, Mom was told that the effects of the Final Big Gun,would begin within 8-24 hours. So for right now we are holding our breath, and counting the small blessings in each day. We are thankful that until yesterday Dad was feeling OK and his biggest complaint was that he was bored.

It has been nice having Tori here, and she only just arrived! Her presence has lifted our whole family's spirit. We wish however, that she were here under better circumstances, but we continue to be greatful our time together as a family.

As always thank you for your thoughts and prayers. More as events dictate...

Isolated and Loving It

This is day 6 of a scheduled 30 day stay and I finally have a room of my own. It's not as big as the double, but neither is it as congested!

After 4 sessions of chemo, I'm pleased to say I still feel no ill effects. The pain created by the torture lady is gone, although there still lingers some discomfort at the end of the day ( just enough to legitmately order some happy juice!) Other feared side effects have not appeared, no nausea, skin rashes, mouth sores etc. There remains three more doses, effects still could be cumulative, and dose seven is supposed to be pretty agressive, so we'll wait and see what happens. I was expecting to lose my hair, hasn't happened yet. In fact I'm growing a beard. Got to be world's first chemo patient that gets HARRIER!

My stamina and energy have inproved since I got here. I continue to do my laps, and I have no excuse to get bored. There is TV of course, and Beck loaded me with books and games. This post is being done on a hospital supplied computer, and there are video games (eeyew) and DVD's available. I haven't tapped that yet. I don't want to use all my options. This is the hospital and the floor where I will be situated when I have the transplant, so I will explore all optoions even if I save some for my next stay.

I'm still hoping to hear in the next day or so what the results are of my sibling tests. Each of them hopes to be the chosen one. For me, I hope one of them matches, (and I wonder which one). More honestly I want them ALL to match! I will be somewhat disappointed if none matches because everyone is let down at that point, and a delay is not what we're hoping for.

The staff here continues to be a marvel. Today the State is doing an audit, so the place is literally crawling with volunteers. If you ring a call button or make a request today, there is NO delay in response. This AM, while I took a shower, one volunteer went to get me a laptop while another changed my bed. A guy could get real used to it!

So that's it from here. I'm sure Beck and the girls will keep you updated as well. (By the way, Tori's coming on Tuesday. It'll be great to see here again even if the circumstances suck).
Thanks again for all the love and support.
Love,
Rick

PS To Cousin Tony: jumping out of perfectly good planes makes NO sense to me and could make you my roommate. Think about it!!

Try this while tethered to an IV pole

Greetings from bed 2.
I'm pleased to say that after 2 sessions of chemo, I am doing well. There have been no side effects as yet, but I expect that to change. I am scheduled for 4 more days of the current regimen, then 1 day of something that is supposed to be really nasty. The 7 days are designed to kill my blood while not effecting my marrow. Then I will require 3 weeks to recover. I am being tested twice daily to monitor the need for transfusions. All the while, I am required to shower twice daily complete with new clothes, changing bed sheets, no jewelry (Beck loves it, she gets mine too). I'm trying to get 10 laps of the floor daily. I do it 3 laps at a time. Ten is ssupposed to equal a mile. I'm tracking all these requirements on a white board in my room so visitors and staff can see what's happening.

Beck and Emily have been here since Thursday. It's nice to have them here. They are staying at a nearby hotel and commuting by MUNI. They were at Union Square for the lighting of the tree last night, along with thousands of others. They have also discovered some new restaurants. More ammo for when I get out.

The staff here has been great. I have been blessed with nurses who care and are easy to work with. Each nurse has only 3 or 4 patients and is responsible for all my care including housekeeping (other than garbage and mopping the floor). They are attentive and responsive. Without exception, the skill set of the nursing staff meets the job description, and they love their jobs. Very cool. The doctors seem to meet the same high praise with the exception of Dr.What's -her- name, whose bone marow biopsy training was from Abu Garub, the Doctors have been great as well. I will be interested to see if anything changes after the holiday weekend is over.

All my siblings have been tested. Their samples are here. Results have been delayed due to the holiday, but next week I should know if there is a match.

Speaking of Thanksgiving, I'll close by saying how thankful I am on so many levels; for such incredible medical care; for so many friends who love care so much; but mostly to my family (you know who you are) without whom this would be unendurable. I love you all...
Rick

Rick Update 11/22

Happy Thanksgiving!

We are currently sitting in the hospital watching the USC v ASU game :o)

Yesterday Rick had a series of tests run so that there would be a baseline to work with from here on out. One of these tests was the bone marrow biopsy. Rick has had 3 previous biopsy's feeling pressure but NO PAIN, yesterday however that was not the case. He recounts that he was not given enough pain meds and not in enough time to actually kick in, and as he states it was "45 minutes of terrorism, something that would make even President Bush ponder".

Today has been a rough day for Rick, he has been in pain still from the biopsy yesterday, we have requested to have the pain meds upped.
We are currently waiting for day 1 (of 7) chemo to begin. The doctors have referred to the 'coktail' that he will be receiving as 'big guns' a total of 3 medications administered for varying days. The doctor has indicated that he may start to feel crummy tonight and if not that he would begin to feel crummy tomorrow.

At this time Rick is playing a game of Hot Beds...he is a new bed/room today, and tomorrow will be moved, again, this time to a completely private room. He has asked that if you wish to contact him, or to leave a message of encouragement, that you NOT contact the hospital, but rather call his cell phone as he is not alwasys up to talking, thus allowing him to still get messages and hear from you.

We have also created a blog for the updates that we will use in lieu of email updates from now own. Please check it, add it to your favoites, post a public comment as you can. As always, emails are also welcomed if you wish to send a personal/private message.
http://rickupdates.blogspot.com/

**it is important that you be sure to add the 'S' at the end of 'updates' if you are free typing the web address into the browser it will recognize EXACTLY what you type and may direct you to an incorrect page if it is mistyped! Again the correct site is: http://rickupdates.blogspot.com/

We wish you all a wonderful Thanksgiving and that you are doing exactly what you want today with exactly who you want. Today in the cafeteria Emily and Becky were both moved to tears when they thought about all of you, who would thinking of us tonight and lifting us in your thoughts and prayers over your dinners. We try and find the blessings in each day, and today that was on the top of the list.

Love,
Rick, Beck & The Girls

P.S. Many of you have asked what, if anything, you could do. He is currently on a a floor which does NOT permit fresh flowers, plants, Fruit (the nurse says that this is the one time that an all processed foods diet is OK), or children under the age of 12! We will send one final email tomorrow (in an effort NOT to post personal information on the blog) with the his final contact information if you wish to send cards.

A little Prayer....

Courtesy of Maria--
Hail Linker, Full of Grace
Help Rick become a successful case!

Amen

Rick Update 11/20

Greetings…Today Rick and Becky went to UCSF for a follow up appointment. We had considered cancelling the appointment as none of the siblings blood work was going to be available for review. In the end we decided to go. It became very clear from the beginning of the appointment that Dr. Linker was not pleased with the most recent tests and control of the disease. Rick’s Sweet’s Syndrome began returning as of Monday, along with a downward shift in Rick’s overall status, which are indications that disease (Myelodysplasia) is in fact not under control. The doctor had hoped for a better response from the previous chemo: he wanted to see the blasts in the bone marrow drop, did not want to see the return of Sweet’s, and to see an improvement in the blood counts. The most recent bone marrow biopsy indicates that the blasts have remained constant since August. The percentage of blasts in the bone marrow are an indication of the advancement of the disease towards leukemia; therefore the most recent tests indicatethat the disease has not progressed. HOWEVER these results are open to interpretation, and at this point,Dr. Linker feels more comfortable re-running the biopsy and reviewing it himself for determination of blasts.

Dr. Linker stated more than once, that “we are in atight spot” between transitioning to transplant and taking a more serious and aggressive approach, such that Rick would be given a “Real Leukemia Chemo”. This treatment would bottom out all of his counts, he would become VERY sick such that he would be hospitalized for at least 4 weeks. Dr. Linker ruminated a lot on this issue, weighing the options, and what the best course of action would be givenRick’s current state. Because of the invasiveness of this Chemo and how rough it will be on Rick, there was a lot of time spent thinking and processing which is the better of the two options by Dr. Linker, “Would I rather take my chances on helping versus hurting you with the chemo OR sending you into transplant in not very good state?” Things will either go really well,the disease and symptoms will be under better control, and Rick would be in a better place for the transplant, OR as with all types of serious chemo,there is a grave possibility that things could go very wrong. Ultimately, after 45 minutes of going back and forth, (it was clear that Dr. Linker was hesitant to go this route because of how invasive and rough it will be) it was decided that Rick would be hospitalized today and that the aggressive chemo would commence. After reviewing the audio tape of the appointment (Thankfully Emily has her hand-heldrecorder from her days collecting data!) Becky and Emily believe that Dr. Linker choose this course of action because Rick is not currently in a good state and that doing nothing would only continue the decline, fearful that ultimately he would no longer be a good candidate for transplant.

We went over there today not sure of what to expect,Rick has the clothes on his back, literally, and that’s about it. He is at the Moffitt hospital of UCSF and currently does not have phone access, the phone in his room is broken, and the cell phone is off as he does not have a charger. We are expecting Tori to arrive from the East Coast sometime next week so that we may be together. This very unexpected turn of events has taken us all by surprise. We are all nervous and anxious, and now, more than ever, we ask you to keep our family in your thoughts and prayers as we begin this sudden and unexpected journey. During this time of giving thanks, give thanks for what you have and the blessings that come each day.

All our Love,

Rick, Beck, and The Girls