C'mon new marrow--start doing your thing!

Today is day +13 post transplant. Mike's white blood cell count is still <0.1. So, no engraftment yet. A nurse says it takes longer for bone marrow to engraft than do stem cells for some reason. It could be another week or so before we see any increase in the cell counts. Whenever Mike's platelet count dip below 10 (which happens every other day or so) he gets a platelet infusion. Mike's still battling his hemorrhagic cystitis, but it seems to be getting a little better. Instead of peeing ever 5-10 minutes, he pees every 15-30 min. His hemroids are still there but it is not giving him as much pain as before. His hands are still blistered and giving him some problems. The TPN has caused his blood sugar level to be too high, so they give him insulin shots to keep it down.

A lot is hitting Mike all at once, but he's handling everything well. I am just so amazed by him each and every day. I know he's feeling lousy, but he doesn't complain or whine about a thing. He's mustering everything he's got to get through this. We have a stationary bike in his room and he was able to get some exercise in today.

People have commented that Mike is lucky to have me in his life, but honestly, it is me who is the lucky one. I simply adore the guy and the past few years have been the very best of my life, despite all of the health challenges. Mike is like no one else I've ever met. Words cannot describe how perfectly beautiful he is inside and out. He has such a pure and gentle soul and lives his life with honesty and integrity. There is no other place I would rather be than right here by his side and I look forward to growing old with him. This will be just one of many chapters in our lifetime together.

Day +8: One week down

Not too much to report today.  Mike's still doing about the same. 

"Same 'ol shit, different day," says Mike.

Day +7: Bacterial Infection Developed

The blood culture came back with gram positive cocci (staph/bacteria infection).  The doctors say it's likely due to the cathether.  In addition to Vancomycin, they are giving him Gentamicin to treat the infection.  It'll take some time to resolve itself because Mike still does not have a functioning immune system yet. 

It was also determined that he has hemorragic cystitis (infection of the bladder) and not a urinary tract infection.  The symptoms of the two are very similar.  Mike continues to have frequent and painful urination.  There is also blood in his urine. 

On top of it all, he still runs a low grade fever.   Tylenol continues to be given when his temp goes over 100.4.    Those are the major things...the minor, more tolerable, side effects include dry eyes, nose, mouth and skin, blisters forming on his hands and general fatigue. 

The doctors say that everything he is experiencing is a result of his aggressive radiation and chemo regimine. 

We take each day as it comes and are just grateful that we are given another day. 

Day +6

Early this morning, Mike had a slight fever (100.9 and the nurse gave him a couple of tylenol.  They've added a couple additional antibiotics (Vancomycin and Cefepine) to his drug regimine as well.  These are broad types of antibiotics because, at this time, they don't know what is causing the fever.  They're doing some blood cultures to see what shows up.

He still is having bladder/urination problems.  For that he's taking Pyridium and Ditropan.  The meds causes his urine to be bright orange.  No results yet from his urine culture.   He probably taking over 15 different types of drugs simultaneously.  They have a drug for every ailment.

Last night his platelets fell below 10k, so they had to give him another platelet infusion.  The doctors and nurses are monitoring him around the clock.  He's a little tired this morning from another sleepless night.

 

Day +5: Another day, another side effect

Another day, another side effect.  We think Mike may have a urinary tract infection or hemorragic cystitis (bladder infection due to high levels of cytoxan).  They took a urine sample to have it tested--the results should come back tomorrow.  He gave himself a morphine shot to help ease the discomfort.  He's frustrated by all the problems that are cropping up.  There is no rest for the weary. 

He's still got the mouth and throat sores.  The TPN that they gave him last night will provide him with nutrients since he cannot eat.  He occasionally drinks a can of Ensure. 

I usually just hang out with Mike in his hospital room.  I cannot do much for him other than provide him with companionship and assist him to/from the bathroom.  With his mouth being sore, he doesn't talk all that much.  We watch the Tour de France tapes and Netflix movies to pass the time.  I have to wear a surgical mask and gown all the time when I'm in the room with him so that exposure to infection is minimized.  I give him light massages on his legs and feet.  I have to be gentle because with his platelets being extremely low, he bruises like a peach. 

Mike's really tough.  All the stuff his body is enduring is brutal.  I know I would not be faring as well.  Even one of his nurses said that she would not undergo a bone marrow transplant knowing what she knows and seeing what she sees.  She says she has a low tolerance for pain and would not be able handle it. 

 

 

 

Total Parenteral Nutrition (TPN)

Today Mike's mouth sores are getting worse and it's difficult for him to chew and swallow.  They give him morphine to help with the pain.  Right now he's trying to eat lunch, but it's painful for him.  Mouth and esophagus sores are a very common side effect from the chemo and all the immunosuppressant drugs he's taken. 
 
Tonight the nurses will administer TPN to Mike.  TPN is given to someone who cannot eat anything and must receive all nutrients required daily through an intravenous line. 
 
Yesterday Mike had an infusion of platelets because his nose bleed wouldn't stop.  Today, he still has some slight nose bleeding, but nowhere as much as yesterday. 
 
 
 
 

Day +2

After a rough couple of days, pretty tired and doesn't have much of an appetite.  Eating is torture he says.  This morning Mike had some nose bleeds.  Despite everything, he's doing alright.  He's one tough cookie.  
 
His white blood cell count (WBC) is .10.   A normal WBC count is between 4,000-11,000.  For bone marrow transplants, the chemo and radiation will drop all his blood counts down to nothing.  In a couple of weeks, the new bone marrow should engraft and then start generating new, healthy blood cells. 
 
I know many of you would like to talk to Mike on the phone, but he's exhausted and simply talking on the phone takes a ton of effort.  Once he gets some of his energy back, he'll be calling some family and friends.
 
Continue to send your emails (mikewu@gmail.com)--I do read them to him.  He may not reply to you for a while, but he does like hearing from you.  
 

Day +1

Mike phones me at 6:30am asking when I'm coming to the hospital.  He wants his pajama pants and some nuts to eat...at least that's what I think he said--it was way too early! 
 
I arrived at the hospital around 8am and found him eating his breakfast.  He tells me that he had a rough night and didn't get much sleep.  He was having bouts of diarreah.  He has minor nose bleeds and his mouth and nasal passage is very dry.  We informed the doctors of this and they will be bringing in a humidifier in his room to keep the air moist.  He doesn't have any stomach cramps this morning, but does have a slight headache.  He's tired today.
 
The docs will administer Methotrexate to Mike today.  In addition to FK 506, these meds are to prevent graft versus host disease.
 
Less than a week in the hospital, he's already homesick and wants to go home.  There's nothing more that I want to do than to take him home...but we have to wait for another month or so. 
 
 

A long day

It's after 9pm and I just got home from the hospital.  What a long day today has been.  Mike started the day feeling fine, then he got two bags of bone marrow infused into him.  The first at 9:15am the second at 5pm.  After each infusion, he felt horrible.  He had massive stomach cramps, headaches and vomited.  This is the probably the worst he's ever felt.  I pray that the worst is behind us.  The docs think that he's having this reaction because he donor whom he's gotten the marrow is B+ and Mike is O+.  The blood, they say, is fighting it out with one another and could be the cause of his cramps and such.  I don't think they really know why he's feeling so lousy.  Again, I pray the the worst is behind him. 
 
It's simply heartbreaking to have someone you love so much go thru so much pain.  It's not fair.

Morphine is our friend

The first bag of bone marrow was infused into Mike's system.  It took about four hours.  Shortly thereafter he started getting massive stomach cramps.  I've seen Mike in pain before, but not like this.  He says, on a scale of 1-10, his pain was at a 10.  Mike has a really high pain threshold, so if he says he's at a 10 he must seriously be in pain.  The doctors don't think the pain is due to the transplant, but rather from the chemotherapy or the egg salad sandwich he had for lunch.  They took some blood to get tested and did a abdominal xray to check things out.  To ease the pain, they gave him some morphine.  Within 15 minutes, the pain subsided.   The docs will await the results of the blood and xray tests before they administer the second bag of marrow.  The morphine worked quickly and did its job. 
 
When Mike was pain ridden with stomach cramps, there was nothing I could do but watch and try and comfort him.  I joked with him and told him that that's how I feel every month when I have my period.  He told me not to belittle his pain. 
 
 

New day, new bone marrow...a new life

At 9am today, Mike was infused with bone marrow from international donor #205020.   They drip the done marrow into his system, thru his catheter.  Bone marrow transplants are similar to getting a blood transfusion.  Bone marrow transplants are not like organ transplants which require invasive surgery.  They will give him two bags of bone marrow (totaling 1 litre).  It'll be several hours for all the marrow to drip in. 
 
Mike's holding up ok.  He's lost about 5 lbs., having some more diarreah, has dry mouth and dry nasal passage, and has some pain during urination.  All of these are not uncommon side effects of all the meds he's been on.  The docs say they will monitor it closely. 
 
It will be about two weeks before they see any engraftment of the new marrow.  
 
Mike has his Phonak cycling cap on and has been watching the Tour de France.  Despite not feeling his best, he's always able to give me a smile. 
 
 

A day of rest

Mike has completed his radiation and chemotherapy treatments. The docs will administer some meds today to help prevent graft versus host disease when he gets his transplant.

We are told that he marrow was successfully extracted from the international donor and that it is now on a flight to CA. Stanford should get it tonight and the transplant will take place tomorrow as planned.

Right now Mike is sleeping. They've given him some Benadryl to help with the nausea. Benadryl just knocks him out. He's a little congested and is still sore from the catheter replacement. But otherwise, he fighting on.

Mike's been passing his time watching tapes of the Tour de France. Our friend Bill and my brother in law Kent taped the tour and a Lance Armstrong profile piece. Mike is cheering for Tyler Hamilton. He's even got a Phonak (Tyler's team sponsor) cycling cap on right now. We're looking forward to planning a trip to Europe next year to catch the Tour live.

We are not alone

Mike and I are certainly not alone on this journey. We have so much to be thankful for. Our family and long time friends continue to support us every step of the way. Recently, Mike and I met two bone marrow transplant survivors (Ron (with his wife Kim), Sara (with her husband Jason)). They have given us so much inspiration and hope. When we met, we became fast friends. I'm so glad to have met them. They know exactly what we're going and have been giving us valuable advice and support. In addition to Ron and Sara, we also know of two other BMT survivors--Alan, whom we've met on-line thru aadp.org, and David, my coworker. All of them are leading full and healthy lives now. I know that Mike will get thru this and will part of the BMT survivors club!

We also have wonderful co-workers. I'm currently on leave from work so that I can focus and be Mike's primary caregiver during this time. I miss seeing all of my friends at the office. For the past year and a half, they have become my support group. They kept me laughing, they kept me sane. I'm fortunate to work with such generously supportive people. I cannot fully express the enormous gratitute I feel towards my manager and all my colleagues.

One of the bright spots last year was our participation in the Leukemia and Lymphoma's Team in Training program. Thru this, we met some amazing people--the coaches, participants, the volunteers and everyone involved with the program. We still keep in touch with them. Mike so enjoyed cycling with them and he looks forward to the day where he can get back on his bike and join them again. The folks at the Society's TNT program signed three large banners wishing Mike well. These banners will be placed in his hospital room so that he can see all the people who are cheering him on. Even strangers (who are involved with TNT) whom we have not met are sending us kind words of support via email.

Again, thanks to everyone for your prayers and support. It means a lot to Mike and I.

Chemotherapy done

Mike has had two days of chemotherapy (yesterday and today) following his radiation treatments. Considering the circumstances, he's been feeling good--just tired. He's had bouts of diarreah today and a litte nausea. The docs will give him meds to help with both. It's amazing how much a body can endure. Mike's tough as nails. He's been handling everything pretty well so far. I'm so proud of him.

Tomorrow (Thurs) is what the docs call 'a day of rest' where he won't have any chemo or radiation treatments. He will start taking a drug called FK506, which is to help prevent graft versus host disease.

The bone marrow donor is from Taiwan I believe. They will harvest the bone marrow from that donor on Thursday and then have it flown in to CA. Friday is the scheduled day for the transplant where they'll infuse the donor marrow into his body.

Mike's blood type is O+ and the donor's blood type is B+. After the transplant, Mike will assume his donor B+ blood type. Not only that, Mike will also inherit any allergies and stuff that his donor has. For example, if his donor is allergic to peanuts, Mike will also be allergic to peanuts. The docs haven't told us anything about the allergies, if any, that the donor has yet.

Taking a break

I'm taking a break and using an internet terminal at the hospital library to enter this blog. Stanford's new Cancer Center was opened in March of this year. It's a nice, bright and airy new facility that we'll be frequenting on a daily basis after he is released from the hospital.

Yesterday, we had a minor setback with Mike's catheter. It got pulled out of his chest a bit and the docs may need to redo the whole thing. We're waiting to hear back from the the docs today to see what they're going to do. Mike was a bit disappointed but I reminded him (and myself) that we're going to go thru a lot of ups and downs during this process and that we have to remain positive throughout it all.

He joking asks if he can change his mind at this point and back out of doing the transplant. It's hard for a guy who has been so physically active his whole life to be confined to a hospital bed for an extended period of time. Physically, it's been hard for Mike. The other day, Mike thanked me for being with him. I told him that I'm going to take care of him now so that he can take care of me for the rest of my life. We both know that we're going to go thru hell in the upcoming months, but the end result is what we have to focus on. The end result is him being cured of the cancer.

Radiation Treatments Begin

We had an early start today at 5am. We had to be at the hospital by 6:45am. We didn't sleep that well last night. Mike's still in a lot of pain around his cathetar area and the gauze is saturated with blood. The nurses informed us that the bleeding will occur and will stop when it incision starts to clot.

Today is the first day of his radiation treatments. Mike's getting full body radiation. He stands, strapped in, in a wooden chamber while this massive radiation machine zaps him. He also starts taking a myriad of medications--over 10 different types for helping with nausea, antiboitics for fighting infections, etc. etc. It's a lot of medications and most with varying intake schedules. I was a bit overwhelmed when the nurse was going over everything with me. We're getting so much information on cathetar care, dietary restrictions, medication administration, oral hygiene... Now I know why patients needs a primary caregiver. It's difficult for patients, who are heavily medicated and aren't feeling so well to take care of themselves.

I made some soup for Mike and I for dinner. Half way into his dinner, Mike went to the restroom. From the living room, I could hear him heaving. I rushed to the restroom and I found him hunched over the toilet puking. Afterwards, he cleaned himself up and I cleaned up his vomit. I wish he didn't have to go thru this. I wish I could make him feel better.

Mike's been quite the trooper. He's still his cheery, bright self. He's been taking everything in stride. He's amazing.

Another chapter begins

Another chapter in our journey has begun. For the past month or so, we've been getting ourselves ready for this time. Today, Mike got a catheter placed in his chest. The catheter was placed in a large vein under his collarbone. The catheter is for administering fluids, chemotherapy and to obtain blood samples. It was difficult for me to see this tube coming out of Mike's chest. I get pretty queezy seeing blood and stuff, but I need to get used to it since I'll eventually be the one who will be flushing his catheter with heparin every day and cleaning the area around the incision after he returns home from the hospital. His catheter is attached to a large bag of fluid which is placed on a luggage cart. This stays with him 24/7.

This was a long day at the hospital and Mike was drugged up and didn't get much to eat since he had to get the catheter placed. On the drive home, Mike threw up. Fortunately, he was seated in the back when it happened, so I didn't see it nor smell it as much. The first thing that came to mind when I heard him hurling, was the scene in the movie 'Stand By Me'. There's a pie eating contest scene in the movie where one person ate so much pie that he started to puke. This caused a chain reaction and everyone started puking. I have a sensitive stomach and I thought for sure I'd lose it in the car as well, but I did not. Mike's really sore from the catheter placement and just tired all around.