Rick's Blog

2010-02-08T06:08:00.000-08:00

In case anyone is still looking at this...

Life is good and I am still this side of the divot. The grandkids are wonderful (all three of them) and Cindy & I are staying busy.

We had our 29th Annual Quail Hunt this year and making plans for the 30th.

We moved our office and are enjoying being in the building with my old partner, Kitt Griffin.

I did have my gall bladder removed last year and occasionally experience some graft vs. host disease but that is reasonably controlled with steroids. I feel almost normal. Well, almost to the new normal.

Thanks, again, to all of you for your support and your prayers. It means the world to me.

Rick

2009-04-18T04:58:00.000-07:00

I haven't posted for a long time. I'm really not sure anyone is reading any more, anyway.

Since my last post...

We did go to Pinehurst. It was fun. A hurricane came within 30 miles of us, so we had to play two rounds in one day and the second round was on #2. It is always cart path only on #2, so I was really beat that night. Kitt helped a lot by fetching my golf balls when we weren't going to use my drive (every hole?). He is a good friend.

We stayed in and played poker that night while the hurricane passed.

Since then my strength and endurance has steadily increased so that I am back to pre-cancer levels now. I still battle with some GVH but that is a necessary evil - kind of proof that the new immune system is working. However, LeMaistre said it is time to do more than steroids to supress it. Most effective would be to install a port in my chest again and go through a series of procedures like dialisis but where they would run my blood under a UV light. Because it would require bi-weekly trips to San Antonio and because it would make my skin ultra-sensative to sunlight (golf is usually played in sunlight) we will try something else first. That procedure is a series of Rituxan IVs that only take half a day each and can be done in Austin.

I did find out yesterday that I need to have my gallbladder removed soon (this week??). It seems either all the chemo or the transplant has caused a stone. It may keep me out of the Member/Guest but it is much better than the pain I had a couple of weeks ago. I'll probably also miss the diving trip to Beliz I had planned for early May. There is a price to staying this side of the divot.

On a really bright note for me... Nick & Kendra are expecting a baby in October. I never thought I'd get to see my grandkids. Thanks to Dr. LeMaistre and his team I'll get to know several.

I will post again. I just don't know when.

Thanks for being my friends.

Rick

P.S. I made it to age 62 about 10 days ago. Something else I wasn't sure I'd do.

"No evidence of active lymphoma..."

2008-08-25T02:49:00.000-07:00

The PET scan report said "No evidence of active lymphoma present..."

That's good news as always in the past the lymphoma showed up within 6 months (or less) of treatment.

Thanks for being there for me.

Rick

July 2008

2008-07-28T11:34:00.000-07:00

Well, it has been over 8 months since transplant and things are going reasonably well. I recently had more GVHD issues and had to start steroids again. I'm sleeping better this time but the leg cramps wake me several times per night. The only way I've found to ease them so I can go back to bed is run warm water over them.

I also had to get another IVIG last week as IGG had dropped to 378. Two days later (last Friday) I had to have an abcessed tooth pulled. I suspect the low IGG had something to do with the infection.

All-in-all I feel pretty good. A week or so after I increased the steroids again I played in a three day tournament. Over the three days we played 81+ holes in 100+ degree temperatures. I survived!

The following Thursday my team (John Chatmas, Troy Geyer, Kitt Griffin & I) won a playoff match to get to go to Pinehurst for a tournament. We'll play 5 rounds+ over five days in early September. This was definitely on my Bucket List!

Since I posted last my grandson, Jacob Richard Ouellette, was born. Brady is proving to be a good Big Sister.

This Thursday Brady & I are going to a Wiggles concert in San Antonio. I am looking forward to it. She likes The Wiggles so much that watching her watch them should be a hoot. She saw her first July 4th fireworks this year. Will & I couldn't watch the fireworks because watching her was so much fun.

Life is good!

My six-month PET/CT is August 13th. I fully expect a clean report.

Thanks for checking in. I appreciate you!

Rick

P.S. If you get a chance, read "Tony Snow's Testimony". He was a great man with great insight and a gift for communication.

MAY 2008

2008-05-20T06:36:00.000-07:00

OK, OK. I've been negligent. But, until lately, there really was no news.

The GVHD did get a little worse so LeMaistre started me on steroids. The steroids worked, but I sure don't like the side-effects (sleeplessness, puffy face, weight gain, muscle cramps, etc.). He is weening me off of them now, but it will take 6 to 8 more weeks and then it will be a few more weeks to get beyond the side-effects.

A few weeks ago my energy level started dropping, as did my blood counts. LeMaistre said he hoped it was just a natural transition between the mature stem cells Ann gave me and the new cells created by my new bone marrow. But one reading (IGG) got low enough that he wanted me to get a immunoglobulin IV (IVIG). I was sure surprised to find out it cost $30,000!

About the same time I started getting a pain in my left leg. It was like a muscle pull that started in the calf and radiated up the leg. As a precaution LeMaistre suggested a sonogram and, sure enough, there were two small blood clots in the lower calf. Other than the pain it would be no big deal ... unless one broke loose and traveled to the lungs (not good). So he put me on Coumadin pills and Lovenox injections. It must be working because I really bruise easily and bleed profusely when scratched.

The leg pain is less today, but I expect to be on Coumadin for a while. However, I get to give myself the last Lovenox injection tonight. That's good because they gave me dull needles.

Other news: Chris graduated from the Bush School and will start working for Grant Thornton in Houston June 16th. Regan will have her son (Austin?) some time between June 9th and 23rd. Nick & Kendra are happily entrenched in College Station; both working for A&M.

Thanks for checking in.

Rick

CR

2008-02-22T08:10:00.000-08:00

Wednesday Dr. Doty told me I have achieved "CR". I know I've had "CRS" disease for years and thought he meant that was getting worse. The "chemo brain" that Doty has caused over the last 2 years would explain the worsening condition. But then he said "No, Dummy! CR stands for Complete Remission!"

What a relief! I was so concerned that my CRS was approaching Alzheimer's level and that Cindy would be putting me away soon.

Dr. LeMaistre also said the latest scans showed "No evidence of active lymphoma in the neck, chest, abdomen, and pelvis." The report generously used words like normal, clear, stable, and resolved.

Thank you, Ann! And thanks to all of you that have supported us and prayed for us. You are all greatly appreciated!

Now I have a little time to work on my Bucket List.

I'll post again when I have new news.

Rick

Monday, January 14th

2008-01-14T08:54:00.000-08:00

Not much is new, but I thought it about time for an update.

I now go to San Antonio only once a week and LeMaistre has already said we can cut back on that soon. He said I am doing so well there is no reason to come down so often. I like that.

We will do scans mid-February. Neither Doty nor I can feel any swollen nodes and I was like a bag of marbles before. The February tests will create a baseline to compare to in subsequent quarters.

I have played 5 or 6 rounds of golf since transplant. The first round was on Day 30. Yesterday I walked the front 9 at Fazio Canyons. The hills nearly killed me, but I finished. Cindy said I moaned in my sleep all night, though, and I am still very sore today.

My legs are weak, so I am trying to get my strength back in them. I started exercise class again last week. I've been twice now and plan on continueing a Tue/Thur routine. I will also try to walk 9 once a week.

This weekend my SSP (Scum-Sucking Pigs) Study Group will be in from Houston. We'll have dinner and some fine wines Friday night and talk business. Then we'll play golf the next morning. We've been doing this a couple of times per year for over 20 years.

Next week is our 27th annual quail hunt. This group is our old San Antonio neighborhood. Gary & I will be in Freer Wednesday through Saturday. Our cell phones do work there if anyone needs anything.

Cindy turns 60 on January 30th. If you want to send her a card, address it to my office and I'll take them all to her that day.

Cindy Kilmer c/o Rick Kilmer
609 Castle Ridge Road, Ste. 315
Austin, TX 78746-5126

This is a busy January. I'm thankful to be able to enjoy it.

I appreciate you checking in and I appreciate your friendship.

Rick

100% transfer!

2007-12-20T14:48:00.000-08:00

We got the DNA report today and my immune system is now 100% from Ann. All of my cells are gone. So the transplant was successful and I survived with relatively minimal side effects.

LeMaistre does think I'm getting some GVHD, but "some" is a good thing. I'll be wearing long sleeved shirts on the golf course for a couple of years.

Around mid-February we'll do our first set of PET/CAT scan tests to see how well Ann's cells are working against the cancer. I'm betting on Ann!

Merry Christmas!

Rick

Monday, Dec. 17th

2007-12-17T11:54:00.000-08:00

I guess no news is good news. Blood counts keep going up in very small increments, but I think I'm way ahead of schedule for recovery from treatment.

Some time in the next week we'll know the % of Ann's immune system. We are looking for 85% plus. I'll post to the blog when I know.

The next major step after that is PET/CAT scans. We should do that in about 60 days (mid-February). It is one thing to recover from the treatment; it is another for the treatment to work. However, last Wednesday Dr. Doty could not feel any swollen lymph nodes. I, also, can not find any and they were pretty obvious before I started treatment.

I'm a little queezy and a little weak and I've lost more weight than LeMaistre likes, but all-in-all I'm doing very well.

Thanks for checking in.

Rick

Monday, December 3rd

2007-12-03T09:30:00.000-08:00

Well, this is Day 26 and it was a good day. Dr. LeMaistre said I am doing so well that he's going to let me go to clinic two days a week. That means I can move back to Austin early!

Cindy is going back tomorrow and Mother & I will go up Thursday after clinic. I'll get a long weekend at home this week! Then, some time next week (probably right after clinic on Thursday the 13th) he'll let us move back to Austin and commute down twice a week.

I will come back to S.A. on the 17th, 20th, 24th (maybe), and 27th. Maybe by January I can cut back to once a week.

What a great day!

Rick

Tuesday, November 27th

2007-11-27T13:04:00.000-08:00

Yesterday was a good day. All counts were up again so Ann's stem cells are definitely growing and taking over. LeMaistre was pleased. He even said I could eat salad again.

Apparently the infection risk is back to "normal", so I am out of the woods there. I asked him about being in crowds and he explained that crowds in confined spaces increase risk of getting a cold or the flu. He said I would tolerate a cold or the flu OK now but that fever usually comes with them and if I get a fever he's putting me in the hospital. So I'll continue to avoid crowds in close quarters and sneezy/sniffly people. I'll also avoid handshakes and hugs and I'll wash my hands a lot. I guess I'll miss all the parties this year. Oh, well!

If things continue as they are now I expect to be back in Austin around December 15th. I'll need to drive back to SA twice a week for a while after that, but that's better than living here in this apartment! It sure is getting small!

Thanks to all of you for your good wishes and prayers. They've meant a lot to me!

Rick

Wednesday, November 21st

2007-11-21T14:45:00.000-08:00

Well, like the stock market, I guess my counts won't go up every day. Today the HGB dropped to 8.1 so I had to get a blood transfusion. They say that is expected.

WBC stayed at 0.9 so I am still somewhat at risk.

PLT went up to 123.

We have the day off tomorrow, so we won't check progress again until Friday.

Happy Thanksgiving!

Rick

Tuesday, November 20th

2007-11-20T09:31:00.000-08:00

Counts were up again today.

WBC 0.9
HGB 8.6
PLT 88

We are making progress!

Rick

Monday, November 19th

2007-11-19T12:00:00.000-08:00

Well, we finally made the turn! The white blood count went up from 400 to 700 and platelets went up from 30 to 58. That's not much, but it's the right direction. The nurses also said that's not possible unless the bone marrow is working again.

The hemogloben count (HGB) was down a tick to 8.5. If that doesn't improve by tomorrow I'll need a blood transfusion. Oh, well.

I'll put up more frequent brief postings over the next week or so.

Thanks for checking in.

Rick

Thank you for supporting Prop. 15

2007-11-10T15:24:00.000-08:00

I've been remiss in thanking all of you for your support...

I am so glad this passed. I think it will make a big difference in cancer research and I think it will be very good for Texas economically. This money and almost this much again in matching dollars will be spent creating jobs here. We will attract doctors, researchers, and support staff from around the world. This will be really good for Texas!

Our next job is to be sure the money is spent well. The Board in charge of allocating this money will be very important. I'll be checking into that process and will keep you posted. You may need to write letters to polititians or letters to the editor.

Speaking of the editor... I want to thank Rich Oppel for his support, too. He and the Austin American Statesman were strong advocates of the Proposition and will be a good source of information about the Board. When you see something about an appointee or the process that doesn't look right to you, be quick to write Rich. It is critical that this Board be done right the first time and not be filled with political 'favors'. It's your money!!

As always, I appreciate you more than you can know!

RICK

Happy Birthday, Rick!

2007-11-10T04:23:00.000-08:00

I have a second birthday now. On November 8th we infused Ann's stem cells into my blood. Hopefully, it has already found my chemo-dead bone marrow and has started growing. We'll know in a few weeks.

This whole process was started with two rounds of rather caustic chemo in Seton Hospital. That part turned out to be the hardest. Being tethered to the wall via the IV tree (Charlie) was a little too confining for me.

Then we moved to San Antonio on November 1st. We have the largest 2 bedroom apartment I could get just across the street from the La Cantera shopping mall. Oh, and right next to the La Cantera Resort Golf Course. I'll practice there when I feel better.

On November 2nd I started 5 days of outpatient chemo. That was designed to kill as many cancer cells that were left as possible and to wipe out my bone marrow while not quite killing me. That is the doctors' balancing act. I don't think they give enough chemo that it kills directly, but they are constantly worried that it will damage some other organ or initiate some other illness that kills. Consequently, they are constantly measuring and testing through the process.

They needed to wipe out my bone marrow (or very nearly so) to create a blank slate where my donor's (Ann's) cells could take up residence. I understand her DNA will actually replace mine. I also assume her allergies and a few other things. If I start cross-dressing, just shoot me! It takes about two weeks to know it is working and about a month to know to what final extent.

To give me her stem cells Ann had to endure a lot. She started with five days of growth hormone shots that caused her bone marrow to over-produce stem cells and force them out into the periphery blood system where they can be more easily harvested (no bone marrow tap). This process causes headaches, bone-aches, and other uncomfortable side-effects before and after collection; but the hard part was collection.

On collection day they put a large straight needle (a transfusion needle) in each arm and hook them to a centrifuge machine. The blood comes out of one arm, the stem cells are spun out, and the processed blood (less stem cells) is put back in the other arm. Ann had to lay in a hospital bed, moving very little, while they collected as many stem cells as possible. The first day was about 8 hours.

Usually one day is enough, but I think Ann's cells knew where they were headed and they were reluctant. We wanted 5 million + cells and only got about 3.5 million volunteers. Consequently, it took a second day. Her two days were far worse than my five days of chemo. I sincerely appreciate that she was willing to do that for me.

The first batch had to be frozen because it was collected more than 24 hours prior to use. The second batch was kept thawed and was infused into me first. They used several large turkey basting syringes to "push" this fluid that looks like thickened blood into the tubes in my chest. I had no reaction at all to that batch. I guess my bone marrow really was dead because it never saw Ann's cells coming!

The frozen cells were different, but the reaction was to the preservative they add when they freeze it, DMSO. Yes, that is the horse liniment we used to rub on sore joints! I immediately got a dry cough, a tightness in my chest, and became very flushed. Is that what menopause feel like?? Are you that old, Ann?? As soon as they were done (about 10 minutes) the reaction stopped. I ate a late lunch and took a drug-induced nap.

I've felt a little better every day since, though Dr. LeMaistre says I will probably get more fatigued for a week or so before I really start improving.

From here a whole lot of measurin' will be goin' on. I'll go to the hospital every day, give blood and see the doctor. If anything is out of kilter, they'll adjust medicines, give me a transfusion or put me in the hospital. By Thanksgiving, those visits may be down to every other day and by early December, twice a week (I hope).

During this and for the next year or so, we'll have to watch for signs of Graft vs. Host Disease (GVHD) or rejection. It can be treated, but must be dealt with quickly. And, since the greatest risk is closer to transplant we will have to live in San Antonio, close to Texas Transplant, through December. For most of 2008 I'll make frequent trips to San Antonio to see LeMaistre. I'll take advantage of that to see my clients here.

Well, it's time to go to the hospital for my daily visit. More later...

RICK

Infusion Day

2007-11-08T03:40:00.001-08:00

Well, this is I-Day!

I expect it to be anti-climatitic, but everything we've done so far has been for this day. The actual process will be to take a blood sample, start an IV (get fluids flowing), see Dr. LeMaistre, start IV of Ann's stem cells about 10:30 (should only take 30 minutes), and continue saline IV for several hours while they monitor my reaction. Piece of cake!

I think Ann suffered most for this. She had to lay around in a hospital bed for most of two days with a large straight needle in each arm. She is certainly my hero! Bill was a real trooper, too, as he sat with her and took care of her while we were doing our things elsewhere in the hospital. I sincerely appreciate both of them.

It is almost 6 AM and Mother just got up so I'll close this for now. Later today or tonight I'll post a blow-by-blow of these last few days.

Thank you all for your good wishes and prayers. I am doing very well and I believe mostly due to your support. I appreciate you!

Rick

TRANSPLANT update & schedule

2007-10-24T04:27:00.001-07:00

Well, it's set!

Cindy & I saw Dr. LeMaistre in San Antonio yesterday and stem cell transplant is now scheduled. He was happy with what we accomplished in the last two rounds of chemo and he was surprised I had withstood it so well. He wants me to recooperate a little more, but we are now scheduled to start next week. This is the plan:

11/01 Dilantin pills to prepare for chemo - move to SA
11/02 Fludarabine + Busulfan CHEMO in SA (8AM to 3PM ??)
11/03 Fludarabine + Busulfan CHEMO in SA (8AM to 3PM ??)
11/04 Fludarabine CHEMO in SA (8AM to 1PM ??)
11/05 Fludarabine CHEMO in SA (8AM to 1PM ??)
11/06 Fludarabine CHEMO in SA (8AM to 1PM ??)
11/07 Day of Rest
11/08 TRANSPLANT DAY
11/09 Cindy & I will lock ourselves in the apartment for a week or so and avoid contact with most everyone until my blood counts recover. Telephone & email will be our form of communication for a while. We will have to go to the clinic daily and may have to have a few transfusions, so our days will be pretty busy. Please forgive any delay in getting back to you. We will, but dealing with the cancer comes first.

Cindy & I will spend most of November & December in San Antonio. We have a great apartment near LaCantera, where I hope to play a little golf while recovering. I will, of course, do everything the doctor instructs, but I also intend to work part of every day. I will have my computer and cell phone and files will be sent or transferred frequently to and from the office. Gary, Norma & Nick will be helping me stay on top of things and handling all client service needs from Austin.

Norma will always have my schedule of appointments and my medical schedule. Please call her at 512-329-6100 to arrange a telephone appointment.

As always, thank you for your friendship, your support and your prayers.

RICK

The Hook 'Em / Gig 'Em

2007-10-24T02:48:00.000-07:00

Coach Royal joined me at the Barton Creek Lessons for Life fundraiser for the Lance Armstrong Foundation.

Saturday 10/13/07

2007-10-13T07:54:00.000-07:00

Good morning!

Early this morning I went down to the Capitol to support Lance Armstrong's effort to get Proposition 15 passed. I believe Proposition 15 will advance cancer research and, perhaps, save your kids or my kids from having to endure the kind of treatment I am going through. Please vote for it and, far more importantly, please use all your contacts and influence with others to get them on board.

P.S. ANN: I did keep my distance from people.

UPDATE: I saw Dr. Doty yesterday. The lymph nodes in the neck and underarm appear to be resolved. There are some very small, mushy nodes in the right groin, but all the poison hasn't soaked in yet. I believe we are on track for transplant the week of 10/28. I intend to sign an apartment lease as of 10/26 and move in that weekend.

From now to then I will need to be very cautious as a cold or an infection could decimate our plans. For that reason Cindy and I will avoid crowds and any other form of "contamination". This will be difficult for Cindy as she really needs to be with people.

THE PLAN (with lots of assumptions):

10/15 - a short chemo infusion (Vincristine) and start steroids again
10/17 - PET/CAT scan
10/19 - meet with Dr. LeMaistre ???
10/24 - see Dr. Doty again
10/26 - sign lease and start move to San Antonio
10/29, 30 - chemo killing bone marrow at Methodist ???
10/31 - infuse Ann's stem cells into my system
11/01/07 - life starts all over and gets better every day!!!

Thanks for checking in.

RICK

UPDATE Monday October 08, 2007

2007-10-08T14:31:00.000-07:00

Last Friday at 8:30 AM I met with Dr. Doty for my scheduled checkup. Lab reports were good (where we needed them before I could start the next round of chemo that was scheduled for the today). He suggested I go back to Seton that morning and start early.

I dropped everything and checked in by 9:30 and had the first bag of Rituxan hooked up to my chest before noon. That was finished by 4 PM and I started Zofran, Mesna and Cytoxan by 5 PM. I was well on my way with the second round of Rituxan + Hyper CVAD before I even had office things and clothes for the 5-day stay!

I will finish Wednesday about 6 PM and get two days in the office this week that I had not expected. We will try to schedule PET/CAT scans for next Wednesday and a meeting with Dr. LeMaistre in San Antonio for the following Friday 10/19. If we can get all our ducks in a row we hope to start the lease on the San Antonio apartment 10/26 and be ready to infuse Ann's stem cells on 10/31. That will make the week of 10/29 my "sick week" and, hopefully, I will be on a track for recovery the following week. Maybe I can be home for Christmas! Of course all of this depends on getting my ducks in a row (tests, good labs, coordinating with Ann, etc.).

Things are going well! Please keep sending up the prayers. He is listening.

RICK

Regan's Trip to the Farm

2007-10-08T14:08:00.000-07:00

On September 29 & 30 (one week after Regan's birthday) I took Regan for an overnighter to the family farm in Placid. All the way there, while we walked around our farm, and while we walked around the farm the had belonged to my grandparents (Ma & Pa) the next day we recorded stories of when I was growing up. I showed her where siblings and cousins swam and played as kids, where I hunted rabbits, where Pa & I hunted arrowheads, and Bear Cave. I also attempted to answer "all her unanswered questions". It was a great trip for both of us.

The picture of me is in front Ma & Pa's house. I spent most of the first 6 years of my life and many summers after living in that house.

Seton Hospital #1

2007-09-24T08:11:00.000-07:00

Well, last week was a bear! I was told to check in Seton Hospital on Monday at 7 AM and did so, but due to a few communications blips, didn't start the first bag of poison until about 5 PM. They were kind enough to start the saline drip much earlier, though, so I was attached to the IV tree (nickname "Charlie Tree") 24/7 for the whole week.

The last bag, Adriamycin or "The Red Devil", is shown here under the brown bag. It is so devilish that they are afraid for anyone to see it. It is super caustic so while it is dripping (the final 48 hours) they have to check vital signs and blood draw from the catheter every 2 hours (night and day !!). This gives me an opportunity to check the overseas markets throughout the night and stay on top of things for all my clients.

I really do try to get a decent day's work in. After Dr. Doty leaves in the morning I watch the opening bell. Gary/Norma/Nick will call about mid-morning to check in and I try to finish reading IBD and any market analysis reports Gary has sent up. Cindy brings the new stuff from the office around lunch. We discovered I can walk Charlie and Cindy down to the cafeteria where the food is better, so lunch will be there from now on. I try to shoo Cindy away after lunch so I can work/read/make phone calls. She usually shows up again by early evening.

At least I didn't feel too bad most of the time. I did start to get a pnemonia-like cough Friday that got progressively worse through Sunday. Sleeping Friday and Saturday nights was almost impossible and coughing began to hurt so bad it brought tears to my eyes. It is better now, but I can tell my blood counts are low. I expect to be near full speed by Wednesday.

The next hospital stay will be 10/8 through 10/12. I'll get the same sequence of poison, but the poison is cumulative so the week and few days following may be a bit tougher. Since the blood counts will be lower, company will be more restricted. Dr. Doty said I may have to have blood and/or platelett transfusions. But my email works and I will post my cell number if anyone wants to call. There is a phone in the room but it does not have voice mail. My cell does. And, since the doctors and nurses frown on me taking calls while they are poking around, leave a message and I'll get back to you.

Our goal is still Stem Cell Transplant starting early-to-mid November. That will put us in San Antonio through year-end. We will have an apartment at La Cantera and I will have an office set up there. Nick or a messenger will bring files from the office weekly and I will recieve lots of stuff by computer.

I apologize for the interruption to face-to-face meetings, but we will get back to normal in 2008. Please don't hesitate to arrange a telephone conference through Norma. I want this to be as easy as possible on all my clients.

As always, thank you for your thoughts and prayers. They sustain me.

RICK

From Seton Hospital

2007-09-19T01:04:00.000-07:00

Well, it's 3AM Wednesday morning and the steroids have kicked in. I'm wide awake looking North out of a seventh floor window.

I checked in before 7 AM Monday morning and twiddled my thumbs all day waiting to get started. Things move slowly on Mondays. I finally started Rituxan about 5 PM and Cytoxan about 9 PM. The Cytoxan is administered over 3 hours every 12 hours (9 AM and 9 PM) for 6 rounds. I get Zotran and and Mesna to offset side effects of the Cytoxan.

For 48 hours starting day 3 I'll get Adriamycin and on day 4 I'll get some Vincristine. All of the above are through the Groshong port so I am tied to a IV tree machine 24 hours a day. Of course there are various blood draws and vital sign checks throughout the day and night so I know all the nurses on all the shifts. But the steroids (Decadron pills) have kicked in so I am wired all night now anyway, so who cares?

This treatment has caused an elevated blood sugar reading so they also check that every few hours. I ate part of a candy bar after dinner last night so it spiked above 230. I had to have a insulin shot. Guess the sugars and starches are out for a while.

Hopefully, I can check out some time Friday.

Next week some time we'll check the heart to be sure these drugs aren't causing damage. Assuming that is OK I'll check back into Seton for another round of this treatment the week of October 8th. We'll probably let that soak in for a week and do scans to check progress the week of October 22nd. Assuming it will take a bit to get results, schedule events at Texas Transplant, and collect stem cells from Ann, I hope to check in at Methodist in San Antonio the week of November 5th or 12th.

Of course all of the above is conjecture right now.

Thanks for checking in and, as always, thanks for your thoughts and prayers.

RICK

2007-09-15T10:12:00.000-07:00

My mother, Cindy & I went to Breckenridge for a long weekend and got to spend some of our time with good friends JT & Ashlee Tollett. It was a great weekend, but the altitude was hard on us lowlanders.

For more photos check out http://ashleetollett.blogspot.com/
Ashlee showed me how to create my blog and I am grateful as it makes it so much easier to push out current info to lots of friends at one time.

2007-09-15T09:44:00.000-07:00

I had to use three different shotguns and shoot left-handed some, but I got a limit without damaging the catheter in my chest.

2007-09-14T07:36:00.000-07:00

Well, a lot has been happening. Here is what I know today:

The R-ICE is not accomplishing what we need so Dr. Doty wants to change poison. This one will be a bit more caustic so I will receive it in the hospital. I check in Monday at 7 AM and will be there at least until Thursday morning. We will repeat this every 3 weeks until we get the necessary results, then I will move to San Antonio for SCT.

The poison cocktail I will start Monday is Vincristine, Adriamycin, Cytoxan, and Mesna. I think there is another ingredient or two, but I don't know what they are. Some of these were in the R-CHOP mix I took last year, though I suspect the quantity has been increased.

I'll post again when I know more.

As always, thanks for your prayers and good wishes.

RICK

2007-09-12T06:31:00.000-07:00

Well, we had a setback yesterday. Dr. Doty said this chemo is not accomplishing what we need to get where we can start transplant. As sometimes happens with cancer, we need to find a new poison.

Doty will confer with Neelapu @ MDA this week. My next appointment with Doty is Tuesday the 18th. I will post again as soon as we have a new game plan.

Thanks for checking in.

Rick

2007-09-02T07:11:00.000-07:00

NOTE: double-click on any photo and it will increase in size

Wednesday, August 29th

2007-08-29T17:17:00.000-07:00

Well, this may be a hard report. There is more that I don't know than I do.

For the second time, I developed a pain in the left side of my stomach and chest about three days after the last day of chemo. We did CAT scans of the area and (thankfully) found no damaged organs. So, while the source of the pain is not determined we do know it is not being caused by something that would make us stop treatment. Just chemo; just deal with it. It does interfere with golf, though. Oh, well...

Dr. Doty and I agree that the lymph nodes are smaller, though no current scans confirm this. The real test will be the comparison between the 08/14 scan and the one we will do about 09/19. That will tell us the plan for the rest of the year. I still think we'll do 2 more chemos after that and start SCT about mid November.

I'll keep you posted.

RICK

2007-08-28T08:56:00.000-07:00

This was Brady's first trip (her dad, Will's, too). The whole family was there: my mother, Sadie, Cindy, Regan and Will, Nick and Kendra, and Chris. They went on 3 float trips, played in the water, tossed washers, played cards and ate. It was a great family outing even though I didn't feel well. Expected, I guess, since it was only 3 days after chemo.

2007-08-28T08:37:00.000-07:00

Fazio Canyons at Barton Creek the afternoon of the second day of my last round of chemo with my friend, Bart Couch. I felt pretty good that day. It didn't last. The poison soaks in by the weekend following chemo.

Latest Decisions

2007-08-22T05:08:00.000-07:00

Cindy & I saw Dr. LeMaistre Monday and Dr. Doty Tuesday.

I had a PET/CAT scan last week but the only scan they had in Austin to compare to was done in February. As expected, that comparison showed disease progression. They have requested one done at MDA in June. Hopefully, that comparison will show regression since June. These comparisons will dictate plan of attack:

If we have regression since June, I will continue R-ICE #3 and #4 and test/scan again about September 19th.

If I am in remission in September we will stop R-ICE and go on to transplant about the first of October.

If we have continued regression in September, but not remission I will take two more rounds of R-ICE and plan on starting transplant mid-November.

If we have progression (now or mid-September) we will change bug spray and plan SCT at an appropriate later time.

Personally, I believe there has been regression of the disease since June and am on track for SCT. My sister (the "perfect match" donor) will do her prepatory tests August 30th and have cells collected soon after. I really need her to not have Hepatitis or any one of the many other "hidden infections" that are possible.

Well, I'm off to Day 2 of R-ICE #3. Another fun morning at the Chemo Country Club!

Thanks for all your good wishes and prayers. They are working.

Rick

Monday, August 13th

2007-08-13T06:28:00.000-07:00

I saw Dr. Doty Saturday night at his home. He and Cathy were hosting our Sunday School class kickoff party. We watched the movie "Inherit the Wind" for discussion the next morning.

He said he and LeMaistre agreed we may do as many as 4 more R-ICE chemos here in Austin (for a total of 6) before starting stem cell transplant (SCT) in San Antonio. He said the goal of SCT was to "step on the last cockroach." Consequently, we will "kill as many as we can here - as long as the bug spray we are using is working and as long as the bug spray we are using doesn't kill me, too." Dr. Doty has certainly mastered the art of communication!

I have a PET scan tomorrow. Next Monday we see Dr. LeMaistre and then spend the rest of the day with his staff. I think that will be SCT Class. Next Tuesday we see Dr. Doty (to discuss PET scan results) before starting chemo #3. I will post new info by Wednesday of next week.

RICK

at my desk 08/09/07

2007-08-09T06:49:00.000-07:00

Well, I finally clipped off the few remaining stubborn hairs. You can officially call me "Slick" again. It is amazing how much cooler it is in an air conditioned room without hair. Perhaps we should require everyone to shave their heads in the summertime so we can turn the a/c up and save the world from global warming?

news as of 08/07/07

2007-08-07T10:58:00.000-07:00

Well, the good news is that the chemo is working. Lymph nodes are clearly smaller and blood flow has returned to the right arm. I can grip the club and I can finish the swing; I just can't remember where the ball went!

Chemo side-effects are cumulative, so I am feeling it more as we progress through the series. The most prominent side effects are fatigue (like jet lag) and a weak, raspy voice. But no nausea so far.

The doctors want to take advantage of this so we are scheduling 2 to 4 more rounds of R-ICE here in Austin. Since those are 3 weeks apart I may not start transplant until early November now.

Thanks to all of you for caring enough to check in on me. I sincerely appreciate each and every one of you.

Rick

R-ICE round 2 at The Chemo Country Club

2007-08-01T04:48:00.000-07:00

R-ICE is a a combination of Rituxan, Ifosfamide, Carboplatin, and Etoposide with a little Diphenhydram and Mensa thrown in for good measure. Strong side-effects were predicted but, so far, mine have been mild. I've had some indigestion/heartburn/hiccups/reflux but no nausea. The reflux weakens my voice some and causes me to sound a little hoarse, but you'll be happy to know (or not!)that I can still talk. As of yesterday my hair is falling out again so I'll answer to "Slick" again soon.

These treatments come in threes - 3 days in a row, 3 weeks apart, so I will be at the Chemo Country Club again today and tomorrow (about 3 to 4 hours each day). The first day (yesterday) they give me the Rituxan so they add Benedryl, which makes me loopy. The first day takes 7 to 8 hours - a long day.

The first day I miss a lot of calls because I sleep a lot (Benedryl), but days 2 and 3 I have my cell phone and use it and I'm back in the office in the afternoon. The first couple of weeks of stem cell transfer calls may be more challenging, but I will have a computer and email, and I will return calls as quickly as I can, and I will be checking with the office several times a day. Please send business email to the Retirement Counselors site as Norma will be checking that too. Or better yet, CC: Norma@RetirementCounselors.net

The game plan is to achieve as much remission as possible with R-ICE (administered in Austin at SWRCC - the Chemo Country Club). This stuff is working well so we are considering a couple of extra rounds before stem cell transplant. The decision will probably be made August 21st. That means transferring to San Antonio to start stem cell transplant will be anywhere between August 27th and October 1st. We will be in San Antonio for about 2 months, but most of that time is just to keep me close to their hospital (Methodist) in case I experience "Graft vs. Host Disease" or "GVHD" which is really my body rejecting my donor's cells. Very understandable considering that my sister is my donor. Man, is she going to be hard to live with after this!

Enough for now. I'll post again in a few days.

Thanks to all of you for your prayers and good wishes. They sustain me and the prayers are being answered every day.

RICK

07/30/07 with Brady Lynn Ouellette (#1 grandaughter)

2007-07-31T05:50:00.000-07:00

schedule as of 07/23/07

2007-07-23T15:09:00.000-07:00

07/31 CHEMO starting about 9 AM (6 hours ??)

08/01 CHEMO starting about 9 AM (5 hours ??)

08/02 CHEMO starting about 9 AM (5 hours ??)

08/03 Neulasta shot

08/14 PET scan @ 8:30 AM (3 hours ??)

08/20 Dr. LeMaistre @ 10 AM (decide on treatment protocol)

08/20 rest of day at Methodist meeting with members of the team

08/21 Dr. Doty @ 2 PM (discuss treatment)

08/25 move clothes, etc. to San Antonio apartment

about 08/27 ??? start stem cell transplant process at Texas Transplant

Sister is a match!

2007-07-18T07:02:00.000-07:00

My sister, Ann Kilmer-Robinson, is a genetic match! This means she can donate stem cells which the doctors can use to replace my immune system.