Relief pitcher

Well, Dana finally succumbed to the head cold she thought she was getting for the last 4 days. We called young John up from the bullpen, and he came up Tuesday night. Dana left Wed. morning for SLO after cleaning the apartment; she did not want to leave any cold germs behind. When I talked to her yesterday, she was cleaning in SLO.

John and I had a shaky start because I forgot my cell phone, and left him bad instructions to the Stanford Cancer Center. Normally I call when I am just about done; it can be 2 hours or it can be 4 hours. I used the house phone to call John, and he left to come get me, but I knew when he didn't show in 15 minutes that my directions failed him. Eventually he showed, bent but not broken.

Everything is fine with me. My WBCs are at 3.3, big jump Wed. from 2.7. All other counts are up and looking good. The doc looked in my mouth yesterday and said 'Could be a month before that heals completely.' Bummer. The sore mouth is making food choices for me, and forcing me to blend things that aren't naturally blended. I am down to 169 lbs, from 180 when I left the hospital. The 180 was a bloat; I should weigh 160-165 in fighting trim. I am nowhere near fighting trim. It's going to be a long road back.

John said to me last night 'It's like you're under house arrest,' and that's true, except I can go out. The biggest fight is with boredom. I was watching a PBS show on Brain Health, and they showed that in order to keep brain plasticity you had to learn new things. You couldn't just do crosswords or sudoku, but had to take up new skills, and force your neurons to seek out new pathways and make new connections.

So, I am searching the library for some DVDs to learn French, for the once-healed Paris trip I owe Dana. Dana wants to pick up a couple of ukuleles and learn to play, easy for her as she plays guitar, not so much for me. John and Mike both play ukulele, so that we would be entertaining as long as I don't sing. Knitting? I am always chilled because of drugs, I could make big sweaters! I should get better command of Spanish, I only have the present tense right now, and not much of it. A tenuous grasp of reality. I started on Tai Chi in Fground, seems like a lifetime ago, and I should try that some more. If any of you have recommendations of what new skill I should learn, send it on. Nothing involving heavy lifting, industrial lubricants, or live (or dead) animals please. Keep it low microbial too, and inexpensive.

Today John and I will go grocery shopping, mostly for soups. The cabinets are stocked with beans, all kinds of beans, but no soup. I won't see John for many hours; he goes to bed at like 4 am, and I get up at 7 am. Maybe around 2 we will go shopping.

Pancakes, Yumm

That's right, pancakes this morning, pretty good! I just wanted to write a short post to correct something I said last post. The doctors do not want my WBC count to steadily increase, they expect it to get to where it is and then fluctuate but with a long-term upward trend. I found this out yesterday when my WBC dropped from 2.9 to 2.7 and started asking more questions. They will only get concerned if it trends downward. I am now on every other day visits to the Cancer Center (henceforth ITA - Infusion Treatment Area), weekends off. Cool.

GOt a package in the mail from Yawkey Way, a Red Sox calendar and program, and a little packet of Fenway dirt. I tried to cut up the dirt and snort some, for power, but it is decomposed granite and doesn't cut well. Thanks to Matt and Marian for pulling this off for me, too bad we couldn't win the ALDS. Looks like the new rule is only 1 championship per year for Boston teams, and the Celtics get '08.

My great friend Mike B has agreed to be my caregiver next weekend, so Dana can go home to SLO and see Mike and John, be home, and especially to see Mikey in a couple of plays he is, 'Wind in the Willows' and 'The Lottery', an odd combo but that's high school theater. So that will be great; she needs a break.

Pancakes this morning reminded me how damaged my nose is, my sense of smell and taste are shot. I could taste the syrup but not really the pancakes. I can taste sweet and salt, but barely. Gatorade is tart. Anyway, I was thinking of this in bed last night and pondering on it, and I wanted to relate a story, but Dana says it is too graphic, or at least needs a warning, so here is your warning: the following is a graphic story of nose clearing.

In the midst of hell, about Day 11 or 12, when my lips were those big masses of black, my nose was also a mass of black. Lying in bed trying to breathe through the mucus-laden mouth or the clogged nose was difficult. I started testing opening my nostrils wider with my fingers and discovered the tunnels were clear, I just had these clots covering the openings. The nurses all had told me not to blow my nose or I might start a nosebleed, and that wouldn't be good with no platelets. But they didn't say I couldn't undergo mining operations and clear the nasal passages.

So I carefully and meticulously removed the clots covering my nasal openings, stopped the minor resultant bleeding, and all seemed well except my nose kept collapsing on itself, the way a camel's does, closing the opening. I thought of BreatheRight Nasal Strips, and took some tape and jury-rigged my nose to stay open. Much to my delight, that lasted until the next afternoon. We bought some Nasal Strips and I started clearing my nose and using those every night, guaranteeing free air passage through at least one passage. They worked great, except for distorting my nose by noon the next day. I think this helped me heal faster.

I also discovered how beautiful everyone's eyes are. We spend very little time looking deep or long at someone's eyes, they are always flitting about, and we attach too much social significance to staring into someone's eyes. When nurses are working on your IV lines, they are often right near your face, and you can study their eyes, which I sometimes did. I discovered such a variety of colors, blues, yellows, brown, greens, all mesmerizing. Dana's blue eyes are like diamonds, with sparkling gold flecks throughout, beautiful. I bet staring into her eyes is what has me mesmerized, with her melodic voice.

Inquiring minds

All these questions, sheesh. I struggle with this stuff too, but I get to ask the docs. Here is how things have happened:

On day Zero (September 30) I got the transfusion with Lisa's marrow cells. My WBCs were on the decline at that time. I was in the hospital and starting to get sick. The effects of the irradiation and the chemo had started to hit, and the old marrow was dying. WBC went to 0.1 (homeless WBCs hiding under trestles). Mucositis set in, we wrung our hands, but then on day 10 my WBC showed a tiny spark and went to 0.2. Engraftment of the new marrow had taken hold a little, and pumped out a few WBCs.

The WBCs steadily but slowly rose, slowed by the immunosuppressant FK506 so that no GVHD would start. On day 19 my WBCs showed a pretty solid jump from 0.7 to 1.3 and I took that to mean the engraftment was solid and we were out of the woods. However, the mucositis had taken its toll and my mouth and tongue and lips were ravaged. I was on TPN (total parenteral nutrition) through the IV, like a big bag of chicken broth, and that was all my liquid and food until day 20.

My mouth has mostly recovered. The last 2 days in the hospital I drank Ensure and tried to eat, but wasn't ready for solids. You had to take in 3000 ml a day before they'd let you go, but I think they cut me some slack since I was trying. The last of the black lips fell off 3 days ago, but I still have a few lacerations on my tongue and inside my cheeks.

Now, I'm slowly adding solid foods. I had cream of wheat and scrambled eggs for breakfast, with tea, gatorade, then, a tuna and non-dairy cheese sandwich for lunch with a non-dairy milk shake. I'll probably have whatever the SuperCareGiver whips up for dinner (soup?).

We are settling in to this phase. Today was typical of our new routine. We left here at 9:40 this am for my 10am appointment at the Cancer Center. I am mask-free here in the apartment, and in the car if the windows are up, and in the rooms of the Infusion Treatment Area (ITA) in the Cancer Center as it is HEPA filtered. I do have to wear the mask in the waiting room. I sat around and read the paper and got into the ITA at 10:30.

The ITA rooms hold about 6 patients in a common room, separated by curtains. You can have guests. They draw my blood tests and check me out. You sit in a recliner and have your own TV. I read. Once a week I get a chest X-Ray. Once my blood tests come back in an hour or two, they give me whatever they need to (potassium, magnesium, blood), hook my fanny pack IV up with a new load of FK506, give me new batteries, ask me for my list of everything I ate and drank, then away I go. Today was unusual because they reduced my FK506 dose to an amount they can handle with pills, so I was liberated from the fanny pack, no tubes, for now.

I call Dana's cell when I'm finished and she is there in 5 minutes. We left there today at 12:00. I put on my mask and walked out to meet her, got in the car, took off my mask, we make out, and then we went to the grocery store. I have to wear the mask in the store. I have a brand new gut, so I am off coffee for now and maybe for good. Bland diet. I shopped in the baby food aisle today but didn't buy any. We bought puddings, teas, lactose-free dairy, eggs, sorbets and Sprite. My digestive system is like a kid's, and I will coddle it along until my mouth finishes healing.

Today my WBC is 2.9. Normal is 4.0-11.0. The docs are looking for a steady slow rise in WBCs, not like last time. They do not want the WBCs to jump and decide to go attack my liver or anything else, so slow and steady she goes. My total neutrophil count yesterday was 1.84, above the minimum, meaning I am not neutropenic (immune deficient), but the rules are different for BMT patients, so the mask and dietary rules apply regardless.

Here is the latest photo, with another one I took in the depths of hell (10/12), for comparison.

Phase IV Begins

At 9:00 this morning the whole doctor team came in, all smiles and handshakes and congratulations; everyone loves a victory! Dana missed it, too bad, but she was busily cleaning and preparing the apartment for my arrival. When Dana arrived at 9:30 we had to meet with pharmacists, IV pack nurses, the nutritionist, and the charge nurse, and Dana had to pass the dressing rechange test (she aced it). We got out of the hospital at 12;30, ahead of schedule. Dana and I are now in the apartment in Palo Alto, and it is perfect. 5 minutes to the hospital, very clean and homey feeling.

So now begins phase IV, daily visits to the Cancer Center, fine tuning the immunosuppessant FK506 so that the new marrow does not go into attack mode, and treating any of the myriad other problems that could occur - liver and kidney being the scariest, but many others as well. So we await now and see if I continue to get lucky and graft versus host disease is minor. Day 90 is now the big target date. They say nobody goes home before 90 days, so that is the target to be in SLO, December 29.

My feeling is this bone marrow has settled in just fine, is working at making product, and I will get some annoying level of gvhd just to remind me not get cocky. My skin has always been my weak point, so that is my guess for minor problems.

I have to tell you that the last 21 days, especially days 6-18, was not like any of my other stays. Those were picnics, walks in the park. This was thru the gates of hell and back again, and don't I pity all those patients that can't tolerate pain and discomfort as it seems I can, nor heal as fast. I am blessed in this department.

Around Day 3 the mucositis set in. Remember the cross-country spikes from high school, with 1" spikes from the toe to the ball of the foot? Imagine a little cross-country meet in your mouth, starting on your lips and ending at your butt. I have said I was just a big sick tube, but not until this started did I really feel like it. That is when I last blogged in earnest. The way they deal with the pain of mucositis is by allowing the patient to control the flow of pain meds, pushing a button as often as every 15 minutes to deliver more fentanyl. (This part is somewhat hazy.)

This is all controlled by hooking you up to a monitor that reads out your vital signs (BP, pulse ox, temp) at the nurses station and triggers an alarm if anything goes wrong. So the tendency may be to overmedicate, and being aware of that, I didn't. But the system limits you much further - you are tethered to the IV pole, to the Pain Control Access system, and to the power to run this. You do not drink, eat or move except to pee and poop. I started getting all my action in my dreams, and in my bathroom attempts.

I was horrified to find myself crapping my pjs just reaching for something, or waking and trying to untether in time to make the bathroom. Not just once or twice, and I had asked the docs to reduce the fentanyl dose that was delivered. I would clean up as best I could, and then reasoned that it was the hospital's system that got me here, and hit the call button for help. Turns out that this was not uncommon.

More horrific than those accidents were the dreams. I would have to work my way up out of a dream to prove it weren't real. I woke up one night and yelled "I did not kill my dog!" I do not remember the dream, only that it was so real I was sure I had killed Woody, I had this awful sense of shame and hopelessness, and only by waking could I make it go away. I was shredded. I had other dreams about the Beauchemins involving lots of junk fancy cars parked throughout a big house, and another where Dana and I were trying to hug but we kept passing through each other. I was sure one of us must be dead, and had to swim up to reality to make sure we weren't.

In the midst of all this dreaming, I was actually making the motions that were going on in my dreams. My IV alarms started going off more frequent, and I had twisted IV lines. The nurses confronted me to say that I was twisting my lines on purpose, some nurses had seen me working at the lines. I was not in my best arguing form at 2 am on fentanyl, but managed to ask why I would do that? I thought maybe I was just twisting and turning in my sleep.

Dana pointed out to me that when I napped during the day that my hands were very busy, trying to do some actions. One night (around Day 12) I had a dream that Mikey had been abducted by Chinese mafia, and there was some overall sense that exceeding bad harm was coming to him. He was about 8 or 9 years old. When I finally rescued him he was in this sack, and I struggled mightily to open this sack. I awoke and found I was trying to open my blanket, a single layer of cloth.

I asked the doctor to untether me from the fentanyl and I would deal with the pain on my own. I did not hit the more fentanyl button for a couple of days, so he unhooked me. I rode it out from there with much better results. Other than the dry heaves from swallowing blood and mucus, the pain was already abating, so it worked out just fine. The dry heaves make a great abs workout, by the way.

While I was down there in hell, I could feel the support, the hands reaching down to me, trying to pull me up. I wanted to write a blog entry, but literally could not without ruining my laptop. But I knew you were all there, pulling for me, and I really thank you for all that support and caring, for helping me and my family rise up from the depths. The road is not finished, but that was a hard stretch and with all your help we are through it.

Up from the depths

Friends, family, I am back. The docs told me this am that my WBCs had reached 1.3, up from .7 the day before, and I would leave the hospital for the local apartment on Tuesday. Hooah! I would've blogged sooner, but I finally have slowed the flow of blood, mucus, and saliva so that I can write. I haven't a cup of coffee in 3 weeks, nor anything to eat, but that new bone marrow from Lisa has taken root and is pumping out WBCs.

Dana and Mike fittingly ran the Nike 1/2 marathon today and are doing well. Just a short blog for now, more gritty details to follow as I rise firther from the depths.

Still waiting

I've been waiting to have some good news to post but unfortunately there isn't any yet. John is in and out of fitful sleep and saying strange things, probably from the med cocktails they tell me, though he is off pain meds for the most part. We are at day 15 and they had told us engraftment normally takes place between days 10 - 14 so any day now things should start to turn around.

Hopefully the next post will have good news.
Dana

Before and After

It's Dana again. John has just finished showering (sheesh, what a struggle while attached to eight lines) as I started typing this. I asked him if he wanted me to write anything here for him. These are his words.

Far off, slowly, a figure emerges. As he approaches, the damage is evident. He moves like a wounded animal.

In earlier days there was no time measure for a round of a fight. It ended when it needed to. I certainly needed it to end. I don't know how long this round has been going on, but it is hell. The only reason I'm writing this now is because Dana volunteer to and she had taken some pictures.

I've been slammed hard and long. Since the transplant I've had no food or drink. I'm tethered to an IV pole. I lie here in a semi-stupor all day fantasizing about ice water.

Dana is back writing now. John is holding pretty steady. He continues to be in great discomfort but he was still able to beat me at Cribbage yesterday. He is running a slight fever off and on which they are controlling with Tylonol. They are giving him antibiotics just in case there is any infection, but they say some slight fever is common. The mucositis is the most difficult to deal with. His mouth and esophagas are swollen, raw, and bloody. He has a rash on his back, his limbs are swollen, and there is some fluid in the lower lungs. All this is being addressed. He is still on IV pain meds but they have reduced them, at his request, so that he can read. He has a button he can push every 15 minutes for more pain med relief if he wants to. The med cocktail has made him shaky and weak.

Here is a before and after. The squeamish may wish to look away. It really does look as if he's been in the ring with Mike Tyson. Our hero is down but not out and his opponent isn't pulling any punches. If the docs are right, this round will last another week or so. I wish there were some way to make the time pass more quickly, but on we go. These photos were taken a week apart.

Calling all WBCs!

Dana here again.

I know they described all this. I know they told us what could, probably would, happen as John went through this process. But somehow as we listened, I think John and I both felt that he would be spared. Not that we thought he'd breeze through, but he had handled everything they'd thrown at him so well, so far.

I came face to face with the reality of this devastating process when I walked into John's room yesterday. He looks gawdawful and he feels worse. He has not been able to even listen to me read your blog comments yet, but I did read him a couple of emails today and will be reading him your comments a few at a time over the next few days. He slips in and out of sleep, mostly drug induced I think. He rallied a bit when young John and I came in and even cracked a couple of jokes. When I asked him if he'd missed me his eyes welled with tears so I am happy to be back and by his side, even if it is just to sit here as he sleeps.

Dr. L. came in today and said he is doing really well. He said he knows it's hard to see that but that he is very happy with how things are progressing. The nurses say he is a good patient and is doing everything he is supposed to be doing, his mouth care, his breathing exercises, etc. We are waiting for engraftment which we thought would happen in 10 to 14 days but Dr. L said today it might be more like day 20. Here is a description of engraftment from the National Marrow Donor website. They explain it better than I could.

Waiting for Engraftment: Days 0-30
After your bone marrow transplant you will have low blood counts. This means that you have fewer than normal numbers of red blood cells, white blood cells and platelets. Over time, the donated cells you received for your transplant start to grow and make new blood cells. This is called engraftment. Engraftment is an important milestone in your transplant recovery.


Infections
Until your donated cells engraft, you will have low counts of all types of blood cells. You will have very few white blood cells to fight infections. This means you can get an infection easily and infections during this time can be serious, even life-threatening. Your transplant team will take steps to protect you from infections. You will be at risk for infection for many months, but the period before engraftment is a time of especially high risk.

For more detail and information I will refer you to the website:

http://www.marrow.org/PATIENT/Donor_Select_Tx_Process/Waiting_for_Engraftment_Days_0/index.html

So, time to let those WBCs know their vacation is over and they need to head on over, the sooner, the better! I've read in the BMT blogs of others that things start to improve and heal almost immediately once the body starts producing WBCs again.

Young John came back up with me and helped me move our stuff over to the new place. I know his dad was happy to see him. I wish Mike could visit but it is probably better not to have him see his dad this way, it would just upset him. Young John handled it well and was a good support for me. I haven't had a chance to settle in to the new place yet but it will be great to be so close to the hospital now. It is less than ten minutes away.

John's pain is managed for the most part but he is really miserable. He doesn't want guests or phone calls right now. He just wants to get through this in his own "warrior" way. He can't have flowers, he can't eat, he can't read, he can't even get up and read email, so there is very little you can do right now. He would probably appreciate a card or a picture to put up in his room but I can't think of much else. He knows you are all thinking of him and he will get through this. This part is just very hard.

The address to send mail here at the hospital is:

Stanford University Medical Center
Attention: John Fiore Unit E-1
300 Pasteur Drive
Stanford, CA 94305

(And if anyone has any pull with the Red Sox, please feel free to forward his address to them.)

Thank you all for your comments, notes, prayers, and good wishes. They help get us through.

Smackdown

Hi everyone, Dana here. John has gone from bad to worse as they told us he would. I saw him briefly this morning, looking really miserable, with dry heaves and a tongue so swollen and sore he had trouble speaking. The docs came in while I was there and decided to put him on continuous IV pain meds and nutrition. He can barely swallow. I think he lost this particular round but all this is right on track with what they told us would happen, so I know he'll come back strong in the next one.

He was understandably grumpy this morning and wanted me to go, so I left to take Lisa and Manuel to the airport and then drove back to SLO for the weekend. Our social worker has also encouraged me to take a couple of days off now while I can. Once he is released from the hospital he will need a caregiver (me) 24/7 for about three months up there in Palo Alto.

A note on the shower thing. The docs strongly encourage him to get up and shower every day not only to get his lungs expanding a bit and avoid issues there, but also to wash the bacteria and such from his skin as he now has NO working cells to fight off infection.

Bill, congrats on getting through BMT and getting back to the gym. I'm happy to hear your taste buds are working again! Spencer, we look forward to the day you and John can meet mask to mask. I hope you both, along with Rich, will continue to check in here. It's really encouraging to hear from you who have been through this and are coming out the other side.

Ellen, thanks for checking on our boys. Looks like they are doing well and that is a big load off our minds.

Pat and Bruce, thanks for delivering lasagna and flan to Mountain View fer heaven's sake! Gosh darnnit! It was delish!

Lisa and Manuel, what can I say? We are eternally grateful. You have been so gracious and giving. You have some goooood karma coming your way!

Pat, Mac, Mo, and Lisa S, thanks for keeping us entertained. I doubt John will blog for the next few days but I will try to keep you all posted, get it?
Posted.

I will leave you with this lovely poem written by Barbara Crooker for her friend who was undergoing BMT and, I'm imagining, was about at the point that John is now.


The jonquils. They come back.
They split the earth with their green swords,
bearing cups of light.

The forsythia comes back,
spraying its thin whips with blossom,
one loud yellow shout.

The robins. They come back.
They pull the sun
on the silver thread of their song.

The iris come back.
They dance in the soft air
in silken gowns of midnight blue.

The lilacs come back.
They trail their perfume
like a scarf of violet chiffon.

And the leaves come back,
on every tree and bush,
millions and millions of small green hands
applauding your return.

--by Barbara Crooker, The Cancer Poetry Project


Xs and Ohs,
Dana

Woooops

I woke up this morning, Day +2, and feel like I got hit by a truck driven by Mike Tyson. The bastard is cheating! The side effects are really piling up. The mouth sores (mucositis) are pretty painful; it feels like I chewed glass shards a few days ago, and the cuts are just starting to heal. I made the mistake today of ordering scrambled eggs with diced ham, onion, and pepper. I should've gone with just eggs. Without going into too much detail, my digestive system is off kilter but I am not nauseous. I take Imodium about every 6 hours.

I am on so many drugs that I can't keep track of them all. That was my reference to Haight Ashbury - the Summer of Love, 1967, was when Owlsley introduced LSD to the Grateful Dead and many others. I feel a bit like a chemistry lab myself, drugs to fight the effects of the drugs that are fighting the effects of drugs that are fighting the effects of irradiation and chemo drugs. Today they will give me PCA, patient control access, which is basically a button that I can push to give myself more painkiller. If the mucositis gets bad enough that I cannot eat, they will feed me with an IV drip. I had a mouthwash of lidocaine and other stuff this morning to make my mouth numb enough that I could take some pills.

Fentanyl or dilaudid for pain
Actigall protects the liver
Benadryl for allergic reactions
Compazine for nausea
Imodium for diarrhea
Triple wash to numb mouth
Cipromax antibiotic
Allopurinol protects kidneys
Bactrim for pneumonia prevention
And at least two or three others I am forgetting.

Yesterday I was visited by the physical therapy nurse, who wanted to make sure I was getting enough exercise. It is true that there are some windows during the day where I feel like I could exercise, if by that you mean get out of bed, and she wants me to do so, so she plans to bring me an exercise bicycle, and left me with a list of exercises to do. We'll do our best.

So basically I feel like crap, as planned, and it is going to get worse before it gets better. Hooah. Taking a shower is a major undertaking, trying to keep all this tubing protected and the port site dry, so I have that to look forward to every day. And to add insult to injury, the Red Sox game was not on last night.

I have prided myself on having an iron gut, but that just ended as I am writing this. I just lost breakfast and all the morning medications into the bowl. Dang, Tyson lands another big shot to the gut. I am wobbly-kneed, seeing double, but I will right myself before he closes. That is all for now.