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