We're getting our "sea legs"

This weekend as a case in point.

On Thursday Gil got 2 units of red and one of platelets as well as additions to his chemo cocktail. He's now getting the sub cutaneous Velcade, oral Cytoxin (same but smaller than when inpatient) and a heavy dose of prednesone (100mg)

Friday was pretty good, though he didn't sleep much. Saturday was awesome! As the busy helper bees swarmed around working on the billiards parlor or running a water line so the new fridge could make ice, the guy was all over it. He even at one point decided to walk from our porch down the drive and around the barn to build his strength. And hit a few golf balls out the ridge as he went by!! He taught some folks the game of billiards and dove into his new project going through all his CDs (chaos!)

There were a couple of bumps in the road with some intense GI fallout from the chemo but we had the appropriate med so no biggy.

A good friend was taking us out to the best steak house in Madison per Gil's request and 2/3 rds through Gil was snatched into the Twilight zone mentally and physically and couldn't find his way back. He was so wiped that he couldn't even get himself undressed and into bead at home that night.

You may recall this happened last week and both times my gut says something is seriously wrong here . But this week I wondered if it was just going to be an up and down slow rise like last week, as the side effects of the chemo throw him around. Sunday had some stronger moments and Monday even more.

His numbers yesterday red (9.8, white 1 and platelets 9) Dr Callander tweaked the cocktail a bit, adding back Revlimid and some increased meds to hopefully get him more on top of the mouth sores. And a small dose of prednesone two days after the big one to see if it's the sharp ups and downs of the steroids which as causing us the turbulence. I'm realizing that this up and down of energy may be our new norm for a while.

So the future holds some potential adventures. If Gil looks stable this Thursday and gets tanked up on transfusions, we're going to do a mini road trip this weekend!! It's David's 33rd birthday this Saturday, and he and Gil haven't seen each other since last June, so with the help of David's best friend Sean, we're going to leave Thursday after the hospital, spend the night at my cousin's house on the near north of Chicago and then leave the next morn for Elkton Ohio. We should get there in time to visit Friday eve, Saturday day and Sunday morn before heading home. This is a pretty important visit for both of them. I think I have the supports and comforts in place to make this work and Dr Callander is, as always, encouraging us to go for it. So we will.

When we get back, Chris and Miya will have arrived to spend their Spring Break with us, and help get the billiards experience smooth and in the groove.

I suspect there will be some crash and burn moments in these next couple of weeks, but as we breathe into our new norm I think we can weather them. Denial helps. It really is all about enjoying life even if you have to do it in between rushes to the bathroom so to speak.

And, with a little help from our friends , the new refrigerator with ice maker, is IN! Life is GOOD.

The "C" word

The Cancer word sure get's people's attention But not all cancers are created equal, so to speak. Here's my non professional overview to the territory.

What the "C" word does is usher you through a portal into being aware of your mortality, a wonderful gift, and as long as your road is not horrifically painful, I'd say well worth the "fear" price of admission! "Cancer magic" as I like to call it gives everyone close to it a whiff of the JOY of being alive, of how good air tastes to breath.

There are benign cancers, "non invading and conquering the world of your body" tumors. But as in real estate it's all about "location, location, location". Gil's brain tumor wrapped around the base of the brain stem, or his desmoid tumor taking over the grand central station of all the nerves to his right arm as cases in point, with benign tumors like that, who needs enemies?

There are malignant tumors who have hopes of consuming as much of your body as they can, but they vary widely in aggression, appetite, speed and ease of being intercepted in their mission. Many, many cancers are slooow growing, no rush in nailing the puppy. Many cancers have no great plan of doing in the host, they just want a chance at sharing the food source, also able to be dealt with with minimal sweat. The most important thing is how early in the cancer's growth was it discovered, and how aggressive is it. There are cancers who are consuming as fast and furiously as they can and others who are tricky, tricky tricky.

Myeloma falls into that category. It's hard to get at, residing basically inside the marrow of bones, and disrupts the body's ability to make good, life sustaining blood, amongst other nefarious side effects such as kidney destruction, and bone fractures, two that Gil has largely been spared so far. The bitch is when you've found a drug which seems to keep it in a manageable sleeping state, it can and probably will eventually figure a way around that chemical road block and continue to take over the bone marrow, so new drugs must be found, All well and good as research attempts to keep churning out viable treatments.

Until it morphs, as Gil's did this winter into a house afire, blazingly aggressive form. Now the question is, can you impede the cancer without killing the host or making him want to die, which is just as bad.

Dr Callander is our knight in shining armor figuring out battle plans and tools. We trust and I'd say love her for her clarity about what's important here, quality of LIFE, and Gil's gift of enjoyment. I'm the man on the ground giving her feedback on the enemy's overt progress and how the battle plan is working for the guy. I feel like I'm a respected part of the team, which is a marvel after some Dr's attitudes in the past, specifically Mayo Clinic which was beyond arrogant and dismissive. But I digress.

So how do you talk to someone with cancer? I know the hesitation, not wanting to impose or seem to have a morbid curiosity about a private matter.

My rule of thumb is if you care enough about the person and what he's going through to listen, then ask! It's not like you're bringing up a painful subject which they wouldn't have remembered if you hadn't mentioned it. Believe me, it's a constant companion, and kind of like the details of child birth, they probably have more info to share with you than you may even want to hear. But if they're exhausted, or don't seem to want to get into it, then

just ask how they are. It's an open question which they can answer to whatever depth they want. And the kind thing is, to just listen. Beware of the urge to tell them about all the stories you've heard about folks beating that kind of cancer or of how GOOD they look. (it can leave the feeling that they don't look bad enough to be getting all this fuss, they must be exaggerating it) Unfortunately, looks, weight gain or loss, skin color etc may have nothing to do with how they are faring in their fight with cancer.

And ask is there anything you can do to help. Frequently the mundane "dirty laundry" so to speak can weigh folks down more than the hospital vigils. I can attest to the tremendous gift value of non guilt producing offers of help around the farm. I have never felt so loved or supported, and by extension Gil can feel that folk's love of him is a gift he can give to me to ease my burden.

So there you have it, Kathleen's handy dandy guide to talking with someone fighting the "C" word. Take the gift of feeling your own mortality through your caring about their's.

And NOTICE how good it feels to breathe.

We all get by with a little help from our friends

It's been a week, and then some.

We left the hospital last Thursday aft and after initial unpacking, while making dinner, I noticed that one of the rear tires in our new Prius was going flat very and fast.

I had nothing left in my energy bank so I used a neighbor life line. And even though he was in the middle of cooking his own dinner, he came. and puffed up the tire and followed me into Barneveld so I could drop it off at the tire repair place. Bless him.

And the next morning another neighbor showed up and helped me take down the porch storms and bring out the glider. Bless him!

Saturday Gil really seemed to be getting back to his old self, personality wise, albeit with a hoarse whisper as the mouth sores had moved to a new level of hellishness and gone down his esophagus. ARG!! Great visit with Adam et al for dinner Saturday night, Adam getting Gil untangled from all his electronic spaghetti. (there should be a special blessing for a computer geek son who is willing to refrain from rolling his eyes at his parent's incompetence in his domain, and still solves the problem!)

Then on Sunday two great visits where he talked and played and even "helped" a friend get the plow blade off our truck. There is a stiff learning curve awaiting me in the domain of "farm machinery" I suspect I'll be using a lot of mentor/helpers to "get by".

Monday was labs and transfusions but Gil started to slide into a profound exhaustion. By dinnertime he was basically unrouseable. We had another dance with "should we or shouldn't we come in" with the on call doc and opted for staying home. The fatigue continues but with longer reprieves.

We had been in conversation with a fellow who sells and fixes pool and billiards tables, who was planning to deliver a billiards table on Weds. I called a dear heart friend who is a professional house painter to get some advise about materials and method to finish off the drywall in the garage (to make it worthy of the grand table!) And he offered to come

and DO IT, with my unprofessional assistance. We were up til 12:30 Tuesday night and then Wednesday with Tom Kavanaugh, aka "a friend in need" we mudded drywall, laid the indoor/outdoor carpet I got and helped the billiards folk get the table all set. They were going to finish the painting this morning while we're at the hospital. I can't wait to see it!!!

Then last night my refrigerator died. I ferried the stuff still frozen enough into the deep freeze and called our local service man/friend who will check it out but thinks it's dead.

When things like this and the flat tire keep happening, all I can do is think "you've gotta be kidding!" It's actually kinda funny from a certain point of view. Besides, I'd been meaning to clean out the fridge; now I may get the ultimate in clean refrigerators!! and a chance to toss out goodies which have been lurking in the freezer longer than they should!

At the hospital today, red blood is stable at 9.4 (that's 10 days) needed platelets, some small change ups with the chemo and a request by Dr Callander for patience; it takes time to see results (though his IGG continues to slowly decline) and a request by us for no more quality of life suckers for treatments. Agreed.

So I am learning how to ask, be open to help.

I am learning to trust that if I need help and ask for it, I won't overwhelm folks with my neediness (my prime fear) . That people won't do more than they want and resent me (another big reason I avoid asking). But perhaps my biggest learning is that there is so much love around, for Gil, for me, for the act of helping a beloved friend. It's a kindness to let it be given, and to notice and appreciate and not take it for granted. I'm good at that.

It's oddly unnerving territory for me, along with saying "no" when I can't do something, or even (Heaven forbid!) claw back offers I've made during better times.

I am an old dog, but I am learning!

There are a couple other blog themes I've been working on: Tips for how to comfortably talk with someone who has a terminal illness and Conversations with Death as a regular companion. Look for them in future postings!

Writing this blog has been a great way for me to figure out what all is going on. Thank you for caring enough to read it. Several folk have said it's been impossible to write comments. I'll try to get the simple steps to do it and post it.

enough, The End

Better

He's better; the pneumonia is starting to clear. The mouth sores are still awful and the weird way the doxol messes up his taste buds, but no fevers and his immune system is starting to show signs of life. So he'll be heading home on Thursday night, barring any new bump in the road.

And I'm feeling more alive.

A friend came and spent the day with me reconnecting goat fencing and starting to clear the porch so we can set up the glider and Gil can sit looking out our field. It was so satisfying getting something done! And though I have no idea how the Spring will unfold, I can feel it coming.

Here's another poem a friend reminded me of which seems to capture my learning of the other night.

Zero Circle

by Rumi

Be helpless, dumbfounded,
Unable to say yes or no.
Then a stretcher will come from grace
to gather us up.

We are too dull-eyed to see that beauty.
If we say we can, we're lying.
If we say No, we don't see it,
That No will behead us
And shut tight our window onto spirit.

So let us rather not be sure of anything,
Beside ourselves, and only that, so
Miraculous beings come running to help.
Crazed, lying in a zero circle, mute,
We shall be saying finally,
With tremendous eloquence, Lead us.
When we have totally surrendered to that beauty,
We shall be a mighty kindness.

I don't know

I've lived my life trying to know, to understand, to gather info and perspectives until something(s) become clear. I'm a "know it all" wanna be, who even knows so much, that I know that I don't know, as I like to mock myself by saying. But I'm finally starting to get it, that no matter how hard I try, there is too much, too, too much that I'll never understand, and accepting that is the only peaceful way forward.

As I was face to face with last night. Gil had been feeling worse as the doxol coated his mouth with sores and kicked his energy and immune system to bits. Yesterday he didn't really eat and had a hard time even staying awake. At bedtime he had some chills, very low grade fever, and then as high as 100.1. Dr Callander's nurse had said that should be the cut off to call into the hospital because he might not have enough immune system to make a higher fever (interesting, I didn't realize that swelling and fevers were the immune system at work, who knew?) Anyway, I called the on call doc who was up in the air about our coming in, and post call his fever dropped to 99.6, so I got him in bed. Then as he made noise in his sleep and had mini sweats I lay there thinking "I don't know what to do, I don't know, I don't know , somebody tell me, because I DON'T KNOW what to do". The not knowing was more than whether or not to go to the hospital, it was "do we keep on with these treatments or any treatments, do we hold on for the potential bump which could allow one more season of appreciating all the little joys which we've taken so for granted??" And I still didn't know but then I noticed that I was getting up and starting to dress, and I realized I WAS going to take him in. I didn't need to know if it was right, I was just going to do it and not knowing was OK. I think maybe I've been humbled into being OK with not knowing. Wouldn't that be a gift!? This guy's passage has certainly rocked my base way of being in the world.

So just the facts:

The guy's in the hospital with a low level pneumonia, and basically no immune system (to be expected with the doxol) and it's probably going to get a little worse before getting better. And yet he is already feeling better than yesterday. He got 2 units of red and one platelet and IV antibiotics and is back on B6 the unit he's spent so much time in that, I'm embarrassed to say, it feels safe and almost homelike in it's familiar faces and routines. (the nurses were all sad and glad to see him, and the cleaning ladies and food folk too!)

We hope to be back on the farm by Thursday or so. again. And I'm just watching it all and curious about what the heck is going to happen next. Because I sure the hell don't know.

Calling the question

After five days of dexamethasone, and the new chemo doxo, which we knew would be a body slam of exhaustion, perhaps nausea, mouth sores etc., yesterday was not a happy day. Though not full out psychotic as in the hospital, Gil was wandering without his feet on the ground of who he is, and he was getting air sickness, so to speak. Top that off with feeling weak and woozy, and the guy was saying he wanted to quit, and die.

We were heading in to see Dr Callander so it seemed the perfect time to once again call the question, is it time to let go and fade to black? Her response was, of course, it's up to us but we should factor in:

His numbers are improving, red blood 10.4, platelets 19, white 2.5, and even more importantly his IGG was down to 2800 from a crisis high of 4800 and his remission cruising norm of 1600.

His feeling lousy is an expected, temporary side effect of an aggressive treatment, not an indication of a steady decline.

His myeloma flare up is recent and we've only just started different treatments which, in her experience, could have several strikes before possibly finding one which could still hit it out of the ballpark.

We can stop at any point, and can (have) decide to stop any part, specifically, no more dexamethasone; it's just not worth it.

And remembering even last week, pre dex, life, the new car, playing pool, visiting with loved ones, food, listening to Celia Cruz, watching movies, snuggling with his well cushioned wife, ALL made life worth living. She thought that after these side effects fade, he should be at least as able to enjoy these as he had been before.

He decided to continue with those treatments which didn't take more life than they gave.

And so I am "calling the question" myself.

Though I don't have an illness which, without intervention, would end my life in a predictable time, I still have a choice. I can float through these rapids, and let myself get beaned by whatever rocks are in the way (which in many ways is what I've been doing these last months) (and which may not have been an all bad way to deal with sudden onset white water)

or perhaps I can take a little more responsibility for managing the well being of my body and soul, and try to steer a little bit. Perhaps this is the time to grow in some areas of my life which, up til now, I could get away with leaving on the automatic pilot of my early life coping habits. I don't want to waste the fact I have a potentially longer life trajectory than Gil. The only oar I have is curiosity/openness. I find myself asking, why chose to live??? I'm going to be really listening for what answers.

Yes, interesting

The weekend went well. Reality, as I like to say, is a slippery thing, and Gil has been checking in wondering if what he is going through is real or a fantasy. For the most part it has been a safe and pleasant playing on the shores of a dream. A surprise was after one night of only 3 hours sleep (dex induced) he actually drifted into a half awake state which had him dozing through most of Sunday and Monday.

The big excitement of the weekend came when Adam and Piper came out for a sleep over on Saturday night. Kate was working, and Adam was helping Gil get his electronics plugged in correctly (ah, if it were only that easy with the brain!). Though Kate wasn't due for another week, Adam, bright man, made sure he had a phone that could ring next to him in bed "just in case".

Good move. Kate went into labor around midnight; Adam got back into town in time to get her to the hospital fully dilated!! and she delivered Sydney Jane Bradbury Hirsch at 3:44 am.

Piper stayed with us and she and I made cupcakes for a birthday party which we had last night when everyone came home to Adams st. Smash hit! Piper got several "big sister" presents; Sydney seems to be a very responsive infant Piper look alike who only "mews" when hungry. The expanded Hirsch family seems off to a good start.!

Back on the Gil front, we went in yesterday for the new round of chemo and were slightly disappointed that he needed both red blood and platelets despite getting some last Thursday. We were reassured that it was too early to expect him to be holding or making his own yet. Once this next round of beefed up chemo is done (about three weeks), we should start to see some impact.

Which brings me to a request. A friend checked in with the Red Cross, and though there's no way (or need) for blood donated directly to Gil, there IS a big need for blood donations. And Gil is consuming a great deal of blood. If you have it in your heart (and veins) to give some blood for Gil, the Red Cross does have cards which you can mail him saying you've given blood with him in mind. And we both would appreciate knowing that the love Gil engenders in folks will help keep the blood supply available for needs like his. If you want.

I'm on Piper duty today and Gil is playing pool. Our next doc appointment is Thursday; more then.

It's going to be an interesting weekend

Body news:

Since Gil's bone marrow is basically 100% plasma (myeloma) cells at this point, there's little room for little baby red, white and platlete cells to be made and nurtured. Hence his difficulty in multiplying and being fruitful with the cells he's been transfused with, though there has been some progress on that front. He just went a full 7 days with NO transfusions! but yesterday was back to red blood 8.2, white 1.6, neutrophils 840, platelets 12 (needing 3 bags full, so to speak) and IGG creeping down (that's good) to 3090. He has responded somewhat to the VelcadeRevlemidPrednesone (VRP) regimin of the last month. He's steadier on his feet and has been able to play cards and pool somedays.

The Plan:

To beef up his response to his chemo by introducing a new one (doxorubicin, hereafter known as doxo)on top of the VRP. It will be added to the Velcade on Monday.

And four days of dexamethasone starting last night. Yes, we decided to head into potential dex induced psychosis land with our eyes open and back at our familiar home, with friends in the wings to be back up monitors as needed. The reason we're doing this is that looking back, dex was the most effective chemo during this last couple of months, and if we can give the myeloma a solid body blow then perhaps the other drugs may become more effective.

For us both, this is the scariest part of the path forward, but we're in better shape stepping into it consciously. And who knows, perhaps being stronger all around, he'll have less reaction this time.

So we are finally moving back to the farm and out of Winnemac and we are driving our new Prius. And I'm ruminating about my addiction to "giving" and difficulty asking for help which I darn well better deal with during this next phase, and about Grace. I hope to get them into words in future posts.