Good numbers

Gil's numbers are looking good; his white blood cells and neutrophils have almost doubled since yesterday. He's moved out of neutropenic (no immune system) land. His IGG (myeloma indicator) continues to drop, though I haven't had Dr Callendar put today's numbers in context for me yet.

I've been a little subdued in my blogging the last couple of days. All the different drugs he's on or coming off of, along with the trauma of the myeloma spurt it's self have left him wandering in a "looking glass" world which only sometimes runs parallel to ours. I'm not sure what to make of it and don't want to give it too much energy, but it's disturbing.

Dr Callendar wants to give him a dose of Velcade before we leave the hospital, to try to catch the wave of myeloma suppression that the Cytoxin started. We've been making plans to move out of the hospital this Friday or more likely Monday. I'd like to see what fallout he gets from the Velcade first and be sure he's got the strength and will to get up and make it to the bathroom before we move on. The down side of staying longer is that the hospital is a twilight zone and it's becoming more familiar and therefore comfortable than the real world for both of us.

It's time to move into the next phase and see who we both are now since we've made it round the Horn.

Smoother sailing

His numbers are staring to look a little better. There's been a slight upward movement of his white blood count. We're hoping by the end of the week that his platelets and his red blood will be able to stay above a certain minimum for two days between transfusions. When he makes that benchmark, if his strength is back, we can look to move out of the hospital and in to my sisters house on Winnemac st in Madison. My sister Robin and her husband Jed are living there now but they're moving over a little bit so Gil and I can stay there as an interim spot while he finishes up his stabilization.

Tomorrow they will be getting a reading of his myeloma activity, his IGG. It has come down a little since his initial hospitalization, but tomorrow we'll get a better sense of how responsive his myeloma has been/will be to chemo. If it has gone down enough, Dr Callendar will try him on Velcade again and then look to layering some other drug on top.

There are still lots of unknowns, and a lot of fallout from this latest crisis that only time will tell what degree of normal he will return to.

But it's way smoother than it was last Monday night, as a nurse who had off since last Monday reminded us. Gratitude.

A quiet day

I went out to the farm last night. It felt like a century since I'd last been there (6 days in real time) Gil had Chris, Bob and Roberta and 2 of his favorite nurses to staunch his loneliness. Actually, I don't think he even noticed I was gone!

His numbers are continuing their slow improvement. He continues to gain strength. He managed to get to the bathroom with a walker three times today, and to eat up a storm. He's off the steroids as of last night so we'll see if there's much of a post steroid slump as there's been the last two times. But I'm hopeful that he's out of the woods and we can look toward the next step, stabilization and moving out of the hospital!

More tomorrow

Shhhhh

I'm afraid to say it out loud, but

I don't think the guy is going to die this crisis. I promised my self and the docs that I wouldn't try to anticipate til after Sunday, or until the middle of next week or...

But he's watching sports this morn and attempting to schmooze up the overnight nurses.

Good Lord, how does he do it!?!?!

If I ever say a bad word about steroids again, hit me. Though I fear. looking back, that steroids may have played a bigger role in his cognitive issues in the past than I realized. He may be somewhat more sensitive to their impact. I hope that it doesn't increase as an issue as steroids will be an important tool going forward.

I've been asked for the snail mail address here at the hospital (Sorry, no flowers or plants because of the flora/fauna concern), but plain old cards are fine if you want.

Gil Miller B6/612

600 Highland Ave

mail code 6718

Madison, WI 53792

The sun comes out

We're having a sunny day here. When the "worrisome" doctor showed up, she had no new thing to worry about! She even 'lowed that he was in much better shape than what she'd expected. His numbers are still going in the wrong directions (as expected) but more slowly. They're even pulling back on some of the antibiotics that they think are unnecessary now.

His blood calcium is still high and along with the steroids accounting for his mental state. Gil is very much in a waking dream state. We can get some coherence when we ask him something that is direct, but most of what comes out of his mouth is dream talk, good and sweet dream talk but definitely not tracking with our now. I've been trying to catch what he's saying to remember and tell him later, but it's pretty hard to parse.

Bob and Roberta just showed up; he was delighted. His hospital room has become a living room and when Adam magically pulled lovely containers of hot food out of his bag last night, a 4 star restaurant. I would have never thought 2 days ago that we would have this time. I intend to relish it and be curious about what's next.

Oops, I meant to say

Folks have asked about visiting or calling.

We're limiting visits to the immediate family, partly because he has NO immune system at this moment and want to limit his exposure to the normal flora and fauna that cover us all. And he doesn't have the energy.

Calls are somewhat the same thing. He isn't really able to speak, and today "under the influence" he was speaking but slurring and hard to understand, not making great sense.

So, for the multitudes of you who love him and want him to know that or any other specific memory, the first step is email me at piperkath@gmail.com and I'll read your message when he can take it in. If a phone call seems possible we'll give you a phone # and a specific time, but honestly, that will be really rare. He just doesn't have it to give.

I'll leave you with the highlight of the day, his singing along to Finnian's Rainbow and being playful with Chris. I hope we get another great day tomorrow.

Three sheets to the wind

Not to riff on the sailing metaphor too much, but his blood calcium level (down a titch from yesterday) has left the guy punch drunk. He's been absolutely a stitch this morn. I'd try to share some of his kindergarten humor, but, as they say, you kind of had to be there. Anyway, he ate a whole bowl of oatmeal (slowly, slowly) first food other than a little ice cream in the last 3 days. And he managed, with much assistance, a trip into the bathroom. His son Chris is here now, and it is so sweet the look on Gil's face as he looks at Chris. An added benefit, Chris was a NA in a nursing home years ago, so he has all the right impulses and habits to help. (I keep forgetting to put on the latex gloves)

A sweet little ice cream story, I'd been going down to the cafeteria market to get him ice cream most days this last week. There was no "orange custard choc chip", his lifetime favorite, until 3 days ago. Yesterday when I went to get it I saw that the tub was getting low, and knew that they change up flavors whenever one runs out. So I told the woman behind the counter, " my husband may be dying, and the only food he's eaten in the last three days is a little orange custard choc chip, his favorite favorite Babcock Hall ice cream. Could you get another orange custard tub when you replace this one?" and she reached over the counter and patted my cheek and said "oh you poor dear", came around the counter and hugged me, and told her co worker, "we're going to keep the orange custard coming". I was so touched.

We're savoring the calm seas and the joy in Gil's face as he sort of sings along with Jeri Southern (an absolutely fabulous standards singer, she was Miles Davis's favorite). I know we're not around the Horn yet, but what a gift a quiet, uneventful day filled with his favorite music can be.

A song of praise for nurses

It was a good night. I'll write a detail blog later but this is a song of thanks for the skill and compassion of nurses who have such a powerful impact on survival, comfort, and peace in a hospital.

One of the many groupies Gil has in the hospital is a nurses assistant he befriended that last time he was admitted. Her name is Anne. Yesterday eve he got a burst of energy from the dex and was able to be awake and talk a little. We had already determined that though he wasn't in much outright pain, he was uncomfortable, physically and mentally. Anne spent hours with two other assistants (one in training) ironing out all the little wrinkles (literally and figuratively) that interfered with his relaxing. I won't list them all but we were left with an organized room with a cot for me next to him, many little little amenities , and the feeling tone of a slumber party. And he and I slept from 11pm til 5 am with no thrashing, bed changing crisis or bad dreams.

We've been gifted with a little grace in our trip round the Horn. The dex and the new antibiotics helped, but simple human kindness and attention to detail and a kiss of good luck gave us a deep and delicious reprieve from the discomfort and anxiety which had been draining us.

I am swimming in a flow of gratitude that approaches JOY!

Rounding Cape Horn

There has been a shift in the way I'm hearing the doctors and nurses. Though it's clear to everyone that we're going through a perilous stretch, rounding Cape Horn, there are different takes on the info we're presented with. I'm choosing to see him the way Dr Callandar does, as very vulnerable as is to be expected with how low, low, low his blood counts were before he got a full body slam from the sumo wrestler Cytoxin, but with nothing we can see to preclude him coming out the other side of this. She is the most experienced, most "expert" and has known him for the longest stretch, and she is not surprised by what she's seeing. Giving him the Cytoxin was risky, but with the myeloma flaring and his historic resiliency she felt it was a risk worth taking. And I agreed with her.

On the numbers front, his white blood count is the relevant indicator of where he is in his rounding the Horn. They are .6 as of this morning and will likely drop to zero, stay there and then slowly, slowly rise from the dead. The "worrisome" doc just came through and is sending the palliative care team in to see if they have any ideas how to make the guy more comfortable.

They're going to give him steroids, dexamethazone, and I take back all my historical aversion to it! It likely will perk him up, help fight the myeloma and reduce the blood calcium which is the latest "worrisome" symptom. It seems like a great idea. Chris is showing up this early eve, and Bob and Roberta on Friday. He may be only able to feel their presence, unless the steroids really perk him.

I showed up at 2:30 last night; couldn't sleep without worry attacks. He was sleeping with his Ipod playing All Albums; I spent the night DJing his music for maximum joy and peace. We're listening to Jan Garbarec's Officium right now. Check it out, it's some of his soul music, along with Celia Cruz when he needs to rouse.

Rounding Cape Horn; pray for "steady as she goes" weather.

Hard Times

It's hard

looking at the uncertainty of what will happen to him over the next 4-7 days. He has been pretty out of it yesterday and today. Yesterday the doctors on the unit said it looked like the Cytoxin may not be knocking out the Myeloma though it for sure was knocking out all of his good blood. Later Dr Callandar was more upbeat, saying it was way too early to call the Cytoxin benefit either way. It was a bit of an emotional roller coaster. Distilling the info from all the nurses and docs I think it's fair to say the next 4-7 days are a crap shoot. He may die from any number of things before he gets any benefit from the Cytoxin, and he may in fact get no benefit and have the raging myeloma on top of no red, white or platelet cells. He likely wouldn't survive that. They will keep transfusing him til it's clear whether or not he'll be able to make his own, probably in about 3 weeks.

If he survives the next week and starts to regain some strength, we may move into my sisters house in Madison to be near the transfusions. If he makes it out a month and is making/holding his own blood cells and the myeloma is just simmering not boiling, there may be some other meds to try. If he got a real bounce from them, adding months to his life, it would qualify as a miracle, but hey with all the shit this guy has gone through, he's always been able to tune into that miracle wavelength. I wouldn't bet against him.

I am numbstruck. You'd think 4 years into this myeloma thing I would have wrapped my mind around the fact it's terminal. But facing the prospect of loosing him is more than I can let into my heart except in little doses, crying as I drive the car listening to music. I gather info, synthesize, develop options for the different scenarios, and then crumble over little things. I'm forgiving my numb self and inviting her to be open to all of what's happening, the miraculous and the terrifying. I've handed off my responsibilities and am just being with him, hoping there will be more days like Saturday night Sunday morn when he was schmoozing up the nurses. It's a dark passage, and terrifying but damn it makes me in awe of Life and all the "more going on than meets the eye" of it.

Sill in the passage

He was better a couple days ago but now it's clear that he's still in the dark passage, in and out of the fog, various potential "issues" constipation/impacted bowel, pneumonia, mystery pain in his gut? pelvic bone? rib? hanging in the wings threatening to burn the house down if ignored. So we're hyper vigilant at all times. I feel I've been accepted as a sort of NA though told repeatedly that they can handle his care without me, and I believe them, so my care giving is because I want to. It's a good balance.

I'm going to go out to the farm for the night, bring dog food, get clean clothes, gather the presents he wants to give various favorite staff. Whenever he feels good, he chats up everyone! like the latina women who brought his food or cleaned the room (the later one caught me in the hall and went on and on about how nice my husband was and how even though she was working on the other side today she was going to come by to say hello to him) His desire/need to be in relationship with every good soul he comes in contact with here (and there are many on this unit) amazes me. It would exhaust my introvert soul, but it seems to enliven his. So I've been told to make sweets, bring music and music DVDs. Everyone here loves him. I gather they ask to have him and truly hover when they can.

His numbers are lousy (no surprise) for those of you who know numbers, get this platelets 7,000, hemoglobin 8, white blood 1.2. He's not out of the woods yet. Yet it does seem the Cytoxin has slowed the myeloma, perhaps dramatically. He's too drowsy/weak to want to eat (excuse me, is this Gil Miller?!?!) but it's likely fallout from the low blood counts or maybe the chemo. Anyway, we're moving through the passage; it's just a matter of time.

The tide is starting to turn

Gil's symptoms are quieting down as we head into the neutropenic (very low immune system) period of a week or so. It feels somehow as though the myeloma dragons are weakening. His lungs are sounding clearer and though he had intense night sweats last night, he didn't have them during the aft/eve yesterday or this morn. The hot spot of pain is quieting, though there are other new pains that can be quite strong but shift around.

His red blood and platelets are still rock bottom despite transfusions but *good news* his creatinine (kidney function) is better than it's been in years. Cytoxin is known for clearing kidneys but has also knocked Gil into diabetes though he should no longer need insulin once everything settles down.

My intuition is that, though everything is still precarious for the next couple of weeks, he will get a bounce and a chance to find a new maintenance chemo for the next phase.

We have gone through so many crisises in the last 14, 15 years that crisises have become way too familiar, and in a macabre way, comfortable, I'm embarrassed to admit. I want to try to handle myself a little differently this time 'round. I am trying to be a little less stoic and to allow all the generous hearts around us to give what they are moved to give. I'm looking at "what is", my human strengths and weaknesses and Gil's, as what we have to play with this lifetime, and the support we've been gifted with as a resource to be used not wasted. My son David would get on my case about being all airy fairy, but this feels like a real perspective shift that may be the gift (there's always a gift) of this pain. I try not to wax too philosophic on these blogs, but there is something to be said for feeling the reality of death; it sure makes simply breathing an incredible feast. I just hope we can both hold on to it if we get another chance at normal life.

enough, more later

It was a night

I went to have dinner with Adam and friends, and got a scared call from Gil to come back. He'd been sleeping and must have somehow jostled an IV line, and woke up in a puddle of blood. Ach! They had already put in a picc line for administering his chemo and all the transfusions he'll need this next week or two. The IV lines were kept in for ?? Anyway he was feeling a little fragile and with the Cytoxin scheduled for 11:30pm with a diuretic to be started 2 hours later (Cytoxin can be hard on the bladder so they want it flushed out ASAP), I decided to spend the night next to him in the hospital.

It was a good idea. Between the frequent urination, coughing (his little bit of pneumonia acts up, of course, lying flat at night), and soaking sweats/bedding changes, we were up a lot of the night. There was also a somewhat smaller repeat version of the bleeding problem. They'd taken out the IV but his platelets were so low that he started bleeding from under the gauze. They were short staffed last night so I felt really needed which more than made up for the rough sleep.

This morning, having showered, had doctors rounds and set up his Ipod with Adam & Kate's speaker system, he's listening to "Celia Cruz and Friends" at the highest volume and dozing.

He's a much happier camper! And I'm going to head over to A&K's for a nap/shower and to buy Gil a pastrami sandwich. The myeloma has really knocked out his appetite this last week or two. Dr Callandar admonished him to eat as much as he can, protein yes, but also just calories and me to bring in tempting food. There is Babcock Hall ice cream every day in his near future, and runs for special foods as desired. It's a hard life.

YES!

Dr Callandar walked into his room a few minutes ago, and I burst into tears. I'd been thinking this morning of trying to find her and ask about the catch 22 of waiting til he stabilized to go after the myeloma. And then, she appeared! And said just that, that we needed to hit the myeloma hard and then look for stabilization.

So, the plan is

he'll get a super dose of Cytoxin, which is the intense chemo he got with his transplant. It'll knock his immune system out completely by next week and hopefully put a big dent in the myeloma. He'll stay in the hospital til he's safe to go home. There's a little crackle in his lungs that they're going to x ray but it's likely they'll start him on antibiotics anyway since when his immune system goes, he wouldn't have much to fight pneumonia with.

I am feeling

safer and grateful.

We knew he was "full of shit"

And that may be the cause of the "hot spot" of pain. The Velcade's side effect of peripheral neuropathy can effect the colon, which can lead to ...no movement . Since we all know that "what goes in must come out" they had him drink golytely, the salty drink that those of us who have had colonoscopys know intimately. Success! though it will take a while to know if it actually helped the pain source.

On the chemo front, Velcade is absolutely out, but they need to wait until he's stabilized and a little stronger before they subject him to the side effects that come with any chemo. Somehow that seems a little catch 22; he can't get the chemo until he's well enough, and he may not be able to be well enough til he gets some chemo to reduce his myeloma.

He slept 98% of the day, which is more than yesterday, but less moaning in his sleep, and the pain seems to have lessened. It's really hard to see his trajectory at this moment. He has continued to receive platelets and red blood cells as his myeloma keeps eating them up, but he's not going through them as fast as previously.

Unfortunately we're heading into a weekend when new interventions or tests are unlikely. We'll see what tomorrow brings, but I suspect we'll be in a holding pattern until Monday.

Meanwhile on the home front, we've be told 6" to 8" of snow are coming our way on Friday and Saturday. I asked a good friend if he could plow for us and our cabin renter is going to take care of chickens, eggs, dogs and goats.

And I'm going to just stay in town til the guy turns a corner. More tomorrow.

We're still in crisis

Gil's back in the hospital with a "hot spot" of pain, which they are attempting to find the cause of. There have been lots of tests; I'll post the results when I get them.

But unfortunately it seems that this myeloma chemo may not be working.

There are others, and I'm sure they'll try them, but right now it seems that the myeloma is continuing to grow.

I'm scared .

It's been a little bumpy...

When we got home Gil seemed stronger and more "with it" but by Saturday night he started to fade into shortness of breath and profound weakness. Since that was what we'd experienced last week, I assumed that his hemoglobin and platelets were probably low again. When he had a reoccurring nosebleed this morn I was all over the on call doc and his recommendation to come in to the hospital for labs and probably transfusions.

Yet when all the tests came back, yes his platelets were low and they did give him a bag, but everything else was at least as good or better than when he left the hospital. What the hey? The guy is there disoriented and weak, weak, weak. The docs that were on today were the same ones he'd had during his recent stay and they ran tests on everything, and all they could come up with to explain it is his myeloma it's self. I never realized that myeloma has all those symptoms independent of the blood levels. So it's a wait and give the Velcade time to kick into gear plan.

And, oh yes, the reason he was better and able to do his ice cream trek was probably the massive amount of steroids they pumped into him for 4 days; he was probably just coming down from them on Saturday. Oh well. At least we know it isn't anything else like an infection or something. And we are blessed with skilled and creative doctors who won't give up 'til they turn over every rock in our road. It just may be a little bumpy for a while.

On the bright side, I was able to successfully plow our driveway after the 6" dump of snow last Thursday. Gil told me exactly what to do and had a sign up on the door when I came in saying "I am so proud of you". I did feel proud of myself too, as I've avoided getting that skill in the past and in general don't like to use large noisy machinery. I suspect it's a skill set which I will be getting some experience in.

He's HOME!

Though his numbers are still pretty low (or high as the case may be), we've learned a lot and are hopeful that he will continue to respond to Velcade and steroids. First the numbers:

hemoglobin: Tues 6.3 6 units of red blood cells later today 9.5 (normal male 13-15)

platelets: (clotting factor) Tues 11,000 Weds 21,000 today 13,000 (they gave him another bag of platelets before we left the hospital, hopefully his own will start kicking in).

createnin (kidney function indicator) Tues 2.6 today 1.9 (Gil is usually about 1.5 which is above normal but ok, these levels are too high)

And now the stories:

Wednesday evening Gil got a yen for ice cream, Babcock Hall orange custard chocolate chip ice cream to be specific. Heck, if you're staying at a UW facility may as well take advantage of UW's ice cream he thought. So he asked the nurse if he could take a walk; she said sure. And he walked from the 6th floor by the VA all the way down to the cafeteria at the far end of the clinic building, had his ice cream, and realized he was too tired to be steady on his feet coming back. He commandeered an empty visitor's wheel chair and slowly walked behind it using the chair to keep steady and made it back. I was a little upset when I heard about it (given that the guy was too weak to walk 10' on Tuesday afternoon!) but the residents who came around this morning were quite impressed by Gil's persistence if not his judgement. They made a case for discharge today and the powers that be agreed. Piper and I visited him in the hospital this morning. She was a hit with the patients and staff and enjoyed playing with the Boggle letters with Gil down in the "room with the tree" visitors room.

There were several good things that came out of this crisis. Perhaps most important, the docs discovered something which might be contributing to the forgetfulness and confusion that has become more and more of a problem of late. One of the meds Gil has been taking at a fairly high level for his restless leg syndrome, when his kidneys are not flushing well, can build up and cause confusion. I'm excited to see what happens to his cognition as we ween him down on that drug.

Another gift of this time has been that our complacency has been shaken. It is easy to coast in denial as all the drugs are keeping the dragons at bay. We both felt the precariousness of his life and a renewed appreciation of each other and "how good it feels to be alive" as my mom often said in her last days.

We have no way of knowing how long this drug or any others they try will keep life going in this bionic man's body, but we both know we will savor each moment more having seen the spector of an out of control myeloma wild fire.

6 units of red blood cells later...

His hemoglobin is still low, but up from when he was admitted yesterday. His platelets and kidney function have improved somewhat also. Last night the doctors had a bunch of lab tests run to see if there were any other explanations for his symptoms. The general consensus today is that what we are seeing is just rampant myeloma growth with all it's traditional fall out.

Unfortunately, it may take a month or so to see if the a drop in actual myeloma indicators from the Velcade and steroids. In order to be released from the hospital they need to see red blood cells making it on their own and his kidneys flushing a little better. He'll be here at least through Friday.

Gil's myeloma returns with a burst of energy

Haven taken a month off of his chemo to do the knee replacement (rehab is going very well, thank you!) Gil's myeloma started making major mischief with his red blood cells, platelets (what helps the blood clot) and his kidney function. We didn't realize it til his energizer bunny battery was dying out this last week or so and he started getting feverish, weak and frequent nose bleeds. He had started back on his old chemo last week, but even before the knee surgery it had already started showing signs that it was no longer as effective .

We went to the clinic today and Gil's doc gave him platelets and several bags of red blood cells, as well as a big dose of his next chemo (which actually he had used before his stem cell transplant) Velcade, and 4 days of steroids to really kick it in to gear. He'll be in the hospital for the next couple of days as they try to get his blood levels and kidneys back into reasonable function.

It is a sign that we're into the next phase, and how important it is to be vigilant. Myeloma at full speed can do a lot of permanent harm in a short amount of time. There's every reason to think that Gil will respond and bounce back but the down side of Velcade is that it is delivered by IV twice a week , along with weekly dexamethazone, AND it tends to deliver peripheral neuropathy as a side effect. But hey, life is sweet and with a new knee the guy will be dancing and golfing and doing all those things he loves to do. Numbness and pain in the feet may be an OK price to pay for LIFE.

I'll be updating this blog as I get new info and numbers