|Chris, Angie, Brooke and Samantha at the
front door of our new home.
We closed on June 15th.
Enough room for the car collection and the recording studio.
As most of you know by now, Chris' Lymphoma has returned. In an attempt to be able to inform everyone at once of how he's doing, I decided to use a webpage to outline his treatment and daily progress. This is a much more complicated treatment, and it will be easier to get it all in print for you. Bookmark and check back to this page periodically.
We discovered the re-occurance a few short weeks ago. A PET scan revealed a cancerous area near the pancreas and small intestines. Last time, Chris went through 6 rounds of CHOP chemotherapy. A pretty standard treatment that Chris responded very quickly to. This time, the chemo Chris is receiving is called RICE (or ICE) and will prepare him for a Bone Marrow Transplant. The transplant is of the Autologous type meaning that his own cells will be used. His cells will be harvested after this RICE chemo, then he will undergo very intensive daily chemotherapy before the cells are reintroduced. His body then takes over and over the course of 10 to 12 weeks it will start to produce white blood cells, platelettes and red blood cells again. He will not be allowed to work for 2 to 3 months.
He will be treated by the doctors at the Rocky Mountain Bone Marrow Transplant center in Denver. There is more information on the center and the treatment at rockymountainbmt.com .
The following is a time line of what has happened so far. Updates as they happen.
Thurs 5/10 - A PICC line was put in. This will allow for easily administrating the Chemo as well as harvesting and re-introducing the cells.
Mon 5/14 - His first day of Chemo. He was given a slow dose of Rituxan ( the R in RICE). It is administered slowly to reduce the reactions.
Tues 5/15 - His second day of Chemo. He was given Etoposide AKA VP16. Both of these days were out-patient at the Rocky Mountain Cancer Treatment Center.
Wed 5/16 - He was admitted to Luthern Medical Center, Wheatridge for a continuous 36 hour Chemo treatment. He will be given Ifosfamide+Mesna followed by Carboplatin and more Etoposide. He is in room 641. A spacous, private room with cable. He will be discharged on Friday the 18th.
So many of you have asked if there is anything you can do to help. It is a hard question to answer. But I discovered a great brochure from the American Cancer Society that offers some ideas. It is called "How To Be a Friend to Someone With Cancer". I was hoping to find a link to it on the web. But it is not on their website. So I scanned it. BeingAFriend.pdf I hope it helps.
It has been a rough weekend for Chris. Everything really hit him after he got home on Friday. By Sunday he was still pretty tired and weak. But he was starting to bounce back a little. By Tuesday, though he would tire easily, he was back to his old self.
Fri 5/25 - Chris' blood counts are good. So, he's all set to start the next round on Wednesday the 30th. It will be the same schedule as last time. The first two days are out-patient and the next 2 and a half in the hospital. We will let you know which room as soon as we know. After this next round it will be meetings with the transplant doctor and tests for a little while.
Tues 6/12 - There has been so much going on, I have had little time to update. Chris got through the second round of RICE chemo right after Memorial Day. He was released from the hospital on Sunday the 3rd and stayed with Mary's family until I came back from Illinois. It took Chris longer to recover this time around, but by that next Friday he was starting to get back in the swing of things. Yesterday he had another PET scan and we met with the transplant doctor. The PET scan showed that there still is activity, but the area has reduced enough that another chemo round will not be necessary. He has some testing and we will be taking a caregiver class at the end of this month. Mobilization chemo will take place after July 6th in preparation for the stem cell collection. Then the real fun begins!
Wed 7/4 - Chris has gotten through the testing and we've taken the caregiver class. The bottom line from the class is that taking the extra precautions in cleanliness is what is expected. But we already knew most of that. Chris was to have started the Mobilization chemo this friday. Because of some deadlines we are trying to meet with the new house and finding extra time to spend with the kids, the transplant doctor has agreed to push everything back a week. This means his next chemo will be on July 13th. This chemo will involve an overnight hospital stay and consist of Cytoxan only.
Originally we thought Chris would go through the transplant as an outpatient. But our insurance company has given the go ahead for inpatient treatment. Though there are added risks to doing inpatient, we feel inpatient is the right choice for us. Visitors will always be welcome while he's in the hospital. But there will be some strict rules. Handwashing will be EXTREMELY IMPORTANT important. This rule will be EXTREMELY IMPORTANT for several weeks after he comes home as well. Don't bring in any outside food and no plants or flowers. And a special visitors restroom must be used. Visitors will not have to wear a special suit. The actual transplant date is now July 30th and will take place at Presbyterian/St. Luke's.
Fri 7/13 - Chris is getting his Mobilization Chemo tonight and through most of the day tomorrow. He should be ready to check out of the hospital by tomorrow evening.
Tues 7/17 - The Mobilization Chemo went well. Chris has had a good amount of energy these last few days and was back to work on Monday. His energy level should decrease as his blood counts go down. By Friday he will likely be pretty fatigued. His blood counts will be tested everyday starting Friday. When his counts start to come up, his the stem cell collection will begin.
Sun 7/22 - Chris has been going in to be tested bright and early every morning since Friday. His blood counts have just not been high enough for stem cell collection. Until today !!! His white count went from 100.1 yesterday to 400. He is undergoing the collection process this morning.
Thur 7/26 - Chris' brother, Mick, recently received an email from a friend who explained the procedures Chris has been undergoing in a most understandable way. Jim Bender has a Ph.D. in Immunology and has been involved in research on stem cell biology. Currently he is helps design and test clinical systems to generate therapeutic cell populations from hematopoietic cells. In other words, he knows a lot about this stuff. This is what he had to say:
Chris has been feeling great. We've been working on finalizing decisions on the house rehab and getting things to a comfortable point before Chris enters the hospital on August 6th.
Mon 8/6 - Chris checked into hotel Pres/St. Luke's this morning: Room 3305. And he's already bored! I'll be bringing the laptop to him tomorrow, but he is able to use the internet computers in the family lounge down the hall also. I left him there surfing the internet about an hour ago. It always takes a while to get through the paperwork and get set-up before the Chemo can begin. He should be started on that around 4pm.
Again, visitors are welcome. There are no real visitor hours, but it would be a very good idea to phone ahead to see if he is up to having visitors on the day you're coming. It will be very rough for him this first week. We do ask that you wash your hands once you get to the room. And I'm sure it goes without saying that if you have a cold or think you're coming down with something, hold off visiting until it passes.
This week he will receive the last of the chemo. The actual transplant is on Monday the 13th. In the coming days, I will try to keep you up to date on those all important blood counts and hopefully be able to explain what it all means.
Chris and I would like to thank everyone for their prayers and well wishes. It has meant a great deal to us to know so many people are cheering Chris on!!
Tues 8/7 - Not much has changed today. The Chemo continues and Chris is still feeling pretty good. We got the laptop set-up for him and he's been surfing and emailing a lot. Then there is the cable in his room. We don't have cable at home, so this is quite a treat for him to be able to watch the Sci-Fi and History channels. Yesterday, before they started the chemo, his blood counts were low. Today, they jump up. Go figure.
Wed 8/8 - It is common to be introduced to new words when dealing with any medical procedure or condition. We're learning many, but the most important one is Neutropenia. Blood counts are monitored daily and posted on a calendar in the room. It shows how "Neutropenic" Chris is each day. Neutropenia means a lower than normal number of neutrophils. And Neutrophils are a type of white blood cells that kill harmful bacteria. So of all the numbers posted each day, the Absolute Neutrohil Count (ANC) is the most important right now. I'll be posting his numbers here everyday. But they won't mean much without some an idea of what is considered normal ranges. So, here is an abbreviation key along with the normal ranges for each.
Chris' Daily Blood Counts
Thurs. 8/9 - Though Chris' counts are starting to go down, they were still quite good today. He's able to walk any where on the hospital grounds as long as his ANC is above 1000. He took avantage of that twice today. We even got a chance to sit outside for a little while without having to drag the IV stand along. After the infusion on Monday his ANC is expected to plummet. He will still be expected to take daily walks, but as long as the ANC is below 1000 he will be restricted to his floor only.
Fri. 8/10 - Just a quick note to let you all know that Chris is doing just great. We expected him to feel pretty sick and tired by now. He is neither!! If you were thinking of visiting him over this weekend, do it. He is very up for visitors.
Sun 8/12 - The infusion (the transplant) happens tomorrow at around 1pm. Keep thinking those good thoughts everyone!
Mon 8/13 - Well, the infusion went well. Not that it is a wild procedure. They just thawed out bags of his cells and injected them through the port he has in his chest. Simple, really. It is the next few days that we all have to be careful when visiting. DO wash your hands. DON'T bring him any raw fruits or veggies. NO flowers (even dried) or plants. He was given benedryl and an antibiodic before the cells. He pretty much slept all day. We will see what tomorrow brings.
Wed 8/15 - For the most part, Chris' counts have been holding steady. His white count did go up on Tuesday which also made the ANC number higher. But by today everything was back to around where it had been before. He being given an antibiotic (Vancomycin) to combat possible Staph contamination of the cells that were re-introduced. The effects of the Chemo seem to be catching up to him. He's had a considerable amount of nausea the last couple days. But he is trying to get his walk around the hospital in every day. All and all, he's been feeling pretty miserable.
Thurs 8/16 - As you can see Chris' counts are coming down. We took a walk around the hospital today. It may be the last one he takes other than on his floor for a while. He's still not feeling too good and he doesn't have much of an appetite right now. But he did seem a little more perky today. They had to move him to a new room because of a plumbing problem. He is now in room 3301 and the last digit on the phone number is now 1 instead of 5. Of course, he always has his cellphone with him.
Fri 8/17 - Chris is officially Neutropenic which means his white blood cell count is very low. His ANC is below 1000. He is still feeling really lousy and hasn't been able to eat much. He hasn't really been up for visitors today either.
Sat 8/18 - The nausea is starting to subside. And the ANC is down to 80. Tomorrow he could be at 0. Then we look forward to his counts coming up. When the ANC is at least 1500 for three consecutive days, he gets to come home.
Tues 8/21 - Chris has officially "bottomed out". His ANC is at 0. Except for the fatigue, he has actually been feeling better. He is discouraging visitors right now, though, simply because his counts are so low. So, if you want to see him, be sure to call him first. Now we wait for the counts to go up!
Thur. 8/23 - Not much to report. Chris has been feeling as good as can be expected. His nausea has come back a little and his appetite is returning very slowly. As of yesterday, he hadn't developed any mouth sores. The doctor said that if he hasn't gotten them already, he may not now. That's good news. He's ready to get out of there as you can imagine. But he discovered the Food Network and is having a blast collecting recipes. He may be the first to use the kitchen when we move to the new house!
Word from the doctor this afternoon is that Chris looks like he is "grafting"; meaning the new bone marrow cells have found their way to their proper place and are probably starting to multiply.
Fri 8/24 - Chris' blood counts really jumped today. Yesterday his ANC was at 8. Today they are 760! And it is looking like he could be home by Tuesday!
Sat 8/25 - WOW!!! His ANC is at 3182!!! And now the doctor says he may be home on Monday!
Sun 8/26 - ANC is at 7553!!! He'll be coming home tomorrow!!!!
Mon 8/27 -Chris is home now and all settled in. But stay tuned. It's not over yet. We will have to make visits to the Cancer Center three times a week where they will check his blood counts, etc. Although his White and ANC counts are very high, all the others are fairly low. A transfusion of blood platelets or other components may be necessary in the coming days. He will require fluids at home for at least the next few days. A home health worker will be by tomorrow to show us all that.
Except for fatigue, he is doing very well. The real work for me now begins; trying to make him meals he'll enjoy. Nothing really appeals to him right now. Hopefully, both that and the fatigue will get better in the next few weeks.
If you would like to stop by for a visit, be sure to call first to see if he's up to it. You'll have to wash your hands when you get here. And don't bring him anything unless it is something he asked you for. It still is not a good idea to bring plants and flowers.
It is great to have him home. And we are looking forward to him feeling stronger and stronger.
Fri 8/31 - Chris has been home for several days now. His appetite has not been great. As with the CHoP Chemo last year, it is a little bit of a struggle finding foods that taste the way he remembers. And despite my nagging, he hasn't been drinking enough. Combine funny tasting food and dehydration and you get no appetite. He is getting a bag of fluids at home every day and they gave him an extra bag at the doctor's office today. We were also given a few tips to help to try to stimulate his appetite that he's been anxious to try.
He also gets pretty worn out as you can imagine. The first couple days he just wanted to lie around in bed. And he really hasn't been up for visitors. As a matter of fact, if you've tried to call him only to have to leave a message, it is because he hasn't felt like talking to anyone. We did go on what I would term an ambitious walk this morning. It wore him out, but he was glad he did it. He hasn't been lying around sleeping the whole time. We're catching up on some movies we've wanted to see. And we are getting a lot of card game playing in (Thank you, Kelly!).
The doctor visit today, went well. He has his counts checked every visit. They are looking good. Everything is still low, but a couple are just under the normal range. And all are slowly moving up.
Sun 9/9 - Yes, it has been a while since the last update. I do apologize. There hasn't been too much to tell. Everything is getting better with Chris. He is still getting IV fluids once a day. But his appetite is coming back, and he seems to have more stamina the last few days. Though some days are still better than others. He has been answering the phone more often. And he's had a few visitors that have really lifted his spirits. His white count got very low the first part of this week, so he got a booster Nupregen shot and by Friday they were back up again. We are scheduled to have his counts checked again tomorrow and are hopeful that they remain on the up swing.
Fri 9/14 - It has been 30 days now since Chris' transplant. And he is doing very well. The transplant team has started the exiting process. This simply means that he will be handed back over to his Oncologist and will only visit the transplant office for designated follow-ups. We've stopped the IV fluids at home now as he is drinking more. He is also eating much better now. He even cooked dinner last night. The challenge in the next few months is to keep him from getting sick. A challenge made more difficult as we enter cold and flu season. Even I will have to get a flu shot this year. Olive Garden's soup and salad (Chris' favorite lunch selection) is still out for another 15 to 20 days yet. And there are many more things that put him at risk for the next couple months. What antibodies are still left in him (all the stuff we are vaccinated for and have built up immunities to through out our lives) will be determined at the one year mark. And he will be re-vaccinated at that time.
We are still concerned about his White count. He had to have another Nupregen shot on the 10th (that's two since leaving the hospital). Another blood test is scheduled for this Monday. If his white count has stablized and everything else looks good, his port will be removed. And that part of "Nurse Angie's" job will be done.
Tues 9/18 - No Nupregen was needed. Chris' white count was within the normal range and all his other counts looked good as did the full chemistry report. He is officially off the IV fluids now. His port will be removed tomorrow. There is finally a feeling of moving toward the next phase, so to speak. A PET scan is scheduled for the 24th. And he starts seeing his Oncologist next week.
Tues 9/25 - The results of that PET scan came back today. And everyone will be happy to hear THERE IS NO CANCER ACTIVITY !!!!!!
Wed 9/26 - A MESSAGE FROM CHRIS.
Hello everybody. This is Chris here.
I’ve been waiting a bit before placing my own message up here on Angie’s wonderful web page until I had a more complete picture of the results of my recent transplant and associated cancer.
As Angie posted last night, we just found out the latest PET scan turned up no evidence of any cancer activity – which of course, is the best news we could have hoped for and the whole purpose of just about every thing I have done these past few months. Success against Cancer is measured in time. We are excited about the latest PET scan results, and we keep our fingers crossed.
I need to deeply thank each of you…our families, our friends & neighbors, my wonderful Gaiam family at work (best “get well” card ever!), the many different forum members and even the many total strangers who have supported me in so many ways through the ordeal. I wish I could be more eloquent, but I can do no better in expressing my gratitude to you than with a simple heartfelt “Thank You”.
I am making great progress and recovering my strength slowly but surely. My taste is returning (YEAH!!!!) and the doctors have given me the green light to return to work the end of October. Though it has been a long while, I am months ahead of most other transplant patients and am doing remarkably well. I am blessed in so many ways – thank you all.
I’m looking forward to quietly slipping back into the mainstream, somehow. I’m overwhelmed with the “celebrity” all this has brought on and with your support for me. And I’m completely overwhelmed with the loving care and commitment of Angie, who has had to endure all that I’ve been through, every day, entirely too close for her own good. Bless her heart. She has surely blessed mine.
A final mention, I apologize if I have seemed unresponsive to emails and phone calls these past few months, that’s just the way it went for me. I’ll try and make up for that as I continue to get back into the swing of things.