A quick one...

Hi All,

I wanted to give you a short update. Mom and I just back from the hospital. Dad is feeling better, although I say that cautiously. He seems to again be battling a low fever, and they are monitoring the site where is catheter is inserted as there is a small infection that they believe maybe causing all of this. He is being treated with 2 different antibiotics and as of earlier this evening his blood cultures were not growing anything. In addition he has been given a patient controlled pain drip. So he will receive his normal does of pain meds every hour, and now at certain intervals he can get another small does to help better control the pain with the mere click of a button! He continues to come in and out of sleep more often than not, but we were relieved to find him in a little better state than when I left him yesterday. More as time tells.

Much Love,
Emily

Feelin' the Love

Rick continues to be par with the course at this point. His blood counts have been steadily dropping, which was to be expected and is a good thing at this stage. He has had 3 platelet transfusions thus far and has started to receive injections to help stimulate his White Cell count. Late Tuesday/Wednesday he started to develop mouth sores, which are severely painful and make the simple act of talking and uncomfortable not to mention eating and drinking. He as also experienced an increase in his muscle and joint pains in the last few days. He has done an excellent job of making sure that he gets his daily laps around the floor in, but recently this has become more strenuous.

Emily dove over today to spend the day with him, he seemed to be doing well. We watched a movie and went on a walk, albeit brief, and then he promptly fell asleep. For the last week or so he has been having what can best be described as rolling nausea that would come in waves, but he never actually became sick.

The evening of his transplant Dr. Linker stopped by and when we were asking what we could expect he stated that next weekend (i.e. THIS weekend), he, would either be very sick, or not. This evening he became fairly sick. At this point we are unsure of how long these symptoms will last, or their severity. At this stage these side effects are not related to the actual stem cell transplant, there will be other issues and symptoms when the stem cells begin to engraft. We have turned off his phone at this point, but please feel free to call and leave a message he does enjoy hearing from you. His wall is covered in cards that he has received from all of you which are such a bright spot in everyone’s day. Additionally, the Hospital has a space when you can send patients messages online and they are printed out and delivered. Emily has tested this a few times and it does work so feel free to send a message by clicking on https://www.ucsfhealth.org/adult/contact/patient.html (his room # is L1122).

Becky and Emily are thinking of creating a Million Mile Driving Club with the number of trips and miles that they are collectively wracking up! It makes for long days driving over and back, sometimes leaving after work. Tori has been doing an amazing job of maintaining her sanity while she is away during this time. She has been excellent at calling Rick each day to check in, in addition to calling Becky and/or Emily. We too are appreciative of the support and people’s extensions of kindness during this otherwise crappy time. Continue to keep all of us in your loving thoughts.

Much love and thanks.

A Rainbow… New Beginning, and…Cream Corn

After a 3 hour commute to get into the city today, Beck saw a beautiful rainbow just to the left of the Bay Bridge. She took this as an omen. Rick said he saw the rainbow out his hospital window and he also took this as a sign of good things to come. In short, we were doubly blessed. Actually, Rick was already feeling like God was on his side because his FAVORITE NURSE, Lindsey, whom he hadn’t seen this hospital stay, had been assigned to him today!



The stem cell transplant took place this morning and in some respects was anti-climactic. Rick had been given a myriad of medications, from anti-rejection drugs, antibiotics, anti-fungals etc. to a large dose of basic Benadryl which knocked him out for a bit. Prior to that a person from the lab rolled in a cart on which sat a "warming bath" in which the frozen cells would be brought to temperature. The cells themselves have a pinkish/blush appearance like that of ruby red grapefruit. The 3 bags were individually warmed and hung for transfusion. In addition to the IV drip of cells, the Physician’s Assistant used a huge syringe and collected cells from the IV and then "pushed" them at a faster rate. All in all from start/set-up to finish it was a bit over 60 minutes with the transplant taking about 35 minutes. All the while Rick was being monitored and tested. He came through with flying colors…thus, Rick’s "New Beginning". All the while, Beck snapped pictures of the momentous occasion. At lunch he was presented with a small birthday cake and candle to celebrate his new life. To tell the truth, I think for both of us the enormity of what took place today didn’t really hit until later and we’d had a bit of time to reflect on all that’s gone into getting to the BIG DAY!



The doctor warned us yesterday that the "smell" of the transplant might make Rick and me nauseous. Couldn’t figure out what she was saying. Smell? How would we smell anything that’s multi-sealed in IV bags? Well…the donor cells are frozen in a DMSO preservative. Once the cells enter Rick the smell is emitted through him…his skin and breath! OMG….it smells like a newly opened can of cream corn! VERY pungent. You can actually smell it outside his room. We were assured that it would disappear in a few days!!! Rick said he took a walk after dinner and a couple of people congratulated him, apparently the smell is a dead giveaway that you have just had a transplant! Gotta say this was one thing NONE of the books talked about!! Who knew life would begin like this?!

I love Adevan...

Really, it's true. I have found that Adevan and I get along VERY well! I have, as of today, finished Chemo. As far as side-effects go, it has been relatively easy. With the exception of 2 waves of nausea, which produced nothing (hence my love Adevan), and a little more tired than normal, I have had no side effects so to speak. I get 2 days of 'rest' now, and the Transplant is scheduled for Wednesday the 20th...

So now we sit back and wait. We will let you know how things progress. Thank you for your cards, calls, and well wishes.

Love to you all!

Can you say Mulberry Bush?

For those of you counting the days until transplant, STOP. They sent my blood samples to the Mayo Clinic for dosage instructions, and they were delayed by weather. We're in all stop for 24 hours making the transplant date Feb 20 at this writing. We SHOULD get results back today and chemo SHOULD recommence at 8PM today. Transplant SHOULD occur on Wednesday Feb. 20. Personal to my Only Older Donor (OOD) Sister; I appreciate everything you've done, but not enough to ask for another delay so the transplant could happen on your birthday! Happy Birthday anyway. I won't mention your age as that would probably create a run on candles!! Love to all...
Rick

And Awaaay We Go

All,
As you know, I entered the hospital a week ago today. Chemo was to begin that day, but I wasn’t given a room until late afternoon, so Tuesday became the start day. Then a colonoscopy was scheduled so we were delayed pending the results. When the report came back negative, we had to wait until the following Monday or Tuesday as this particular chemo has some very specific protocols including sending blood samples to the Mayo Clinic. Over the weekend, we were told various things, but 8AM Monday was the chosen time.

At about 2PM Sunday, my hematologist told me that she had awakened the previous night alarmed that there may be a drug interaction issue. Since then, she has done some homework and learned that indeed the drug I was taking for colonitis (Flagil) would elevate the levels of the chemo drug rendering our ability to accurately determine proper dosing levels. It was determined that Flagil would be replaced with another drug and we will wait until Tuesday to allow the Flagil to clear my system.
Monday came and went while we waited to see what other delay would occur. None did, after all the waiting, at 8AM today, the chemo started flowing. It took 2 hours to complete the first dose, then it will be repeated every 6 hours for 16 doses. In the mean time, my blood has been drawn and sent off. Conventional wisdom says I’ll not have any adverse effects (other than fatigue) for about 6 days. At that time, nobody knows if I’ll get sick, or how sick I’ll be. So far, I’m a star! Here’s hoping it stays that way.
Rah Rah Ree
Kick ‘em in the knee
Rah Rah Rass,
Kick ‘em in the other knee
GO ME

Hurry Slowly

All,
I promise not to make a habit of using the blog as a "Reply" button, but I have received so many emails that keeping up is problematic. But please don't let that stop you from writing.

Things have been in turmoil and continue to be. There has been another delay as it has been discovered that I have a lower GI infection. Not life threatening now, easily controlled and cured, but could lead to disaster if my immune system was suppressed. So we have another delay, hopefully only a few days, but potentially longer. We'll know more Friday or Saturday. I'm disappointed, I'm mentally and emotionally ready, but waiting is the right thing to do. We'll keep you posted.

Thanks to everyone for the emails, cards, balloons, prayers...everything.

Drugged and Harvested

***written on Monday Feb. 4***
On Monday Feb. 4, Diane went to UCSF and had blood stem cells harvested, which are now "mine" she can’t have them back even if she wanted them! The goal was to collect between 3 million to 8 million cells for every 1 kilogram of my weight. Never an underachiever, she gave up 9.56 million. The process was not as pain free as advertised, but with the appropriate chemicals, she came through feeling OK! The process of getting the catheter installed took about 90 minutes and the harvesting took about 3.5 hours. Then we sat and waited to see if enough cells had been collected. All in all, we were at the hospital from 7AM until 6PM, a long day and the anticipated "fancy dinner" turned out to be cashew chicken at the Thai restaurant in our hotel. We went to bed almost immediately after dinner, and were asleep moments later.

Tomorrow I will head to the hospital for labs, X-Rays, EKG and then the catheter is to be installed, a process that requires sufficient sedation that I will be unable to eat or drink after 6AM. I can hardly wait! After that I will be admitted and chemo is to begin. Diane says this is the beginning of my recovery.

***written the evening of SUPER TUESDAY Feb. 5***
If life teaches us nothing it is that things rarely go as well as planned! We arrived at the hospital today, once again with only the clothes on my back, ready to begin my pre-hospitalization work-up. From start to finish I arrived at 9am and did not get to my room until after 4pm. Earlier in the day we met with the nurse practitioner and were made aware, again, that a rash that I have had for sometime persists, as does a "lower intestinal issue". After extensive review of both, it was determined that further tests will need to be run in order to have a baseline prior to transplant. The reasoning behind this is that the rash and GI Issue are common ways that Graft versus Host Disease (GVHD) presents later, and they want to ensure that if/when GVHD occurs that they are able to determine whether it’s a recurrence or GVHD.

Therefore, tomorrow they will biopsy the rash as well as do a colonoscopy to get a handle on what is happening and what may be causing it. They do not want this to sidetrack the transplant, however they are erring on the side of caution, the start date for Chemo has been pushed back roughly 2 days to the 7th and therefore the transplant is now slated for the 14th in order to allow the test results to come back. Due to the delays today I did not get to my room until after 4pm, and alas I do NOT have a view of the Golden Gate Bridge! I am however across from the nurses’ station so I know that when my call light goes on they will see it!

So while things have been pushed back slightly, we are still all systems go for Transplant next Week. It has been great having my sister Diane here, I know that she is beyond pleased to be a match and to provide more than enough stem cells for transplantation, and I know she would give me more if she thought I needed them! And I am thankful to have been lucky enough to have a family match! We will be sad to see her head back home tomorrow.

**a note from the Caretakers: Thank you to everyone who has called and been thinking of us, we greatly appreciate it. We know that many of you would like to talk with Rick, however, he has again requested that you refrain from calling the hospital directly. Please call his cell phone. If he is not available please leave a message he loves to hear from you all. Know that he does get the messages even if he is not able to call back. Additionally it is clearly apparent that the cats already miss Dad! All they want is a lap to sit on and someone to pet them, well Molly does Bella is still skittish, they aren’t used to being home alone so much :o)