Thursday, July 20, 2006 - 11:45 pm

For those of you who haven't yet read yesterday's comments, Dondon included a message from Mike to all his friends after his November surgery. Don, I think you're right. Mike always knew how loved he was. Always.

From Mike
December 6, 2005

I must say I’ve been deeply moved by the generosity and loving concern shown by so many people. I thank each of you who sent an email, phoned, or just sent a kind thought for my recovery. I am humbled by the depth of your care for my well-being. In some ways, it’s been a chance to understand what my funeral might be like, without the inconvenience of actually dying. I am so fortunate to be a member of your community, and thank you for your friendship.

Warm regards,
Mike

********

Here is an email exchange between married Mike and me in December 2003, after about 6 months of marriage. I loved that we never let our bad moments get the best of us. We always talked things out and got smooshy once again. It wasn't in my nature to be like this. I learned it from Michael.

From: Danna Young
To: Mike Young
Sent: December 11, 2003 10:09 am

Hi there, smoosher.

I was so in my head this morning that I missed my subway stop and had to walk 15 minutes in the rain. Doh!

I am sorry that I was grumpy this morning and that I have not been more affectionate. I think I have been in my head about various things related to school (as usual). I also feel like my feeling were hurt from different small things this week that I never talked about with you. That is my own fault. I think that the two things together (my being in my head and feeling hurt about things that I haven't talked about) have contributed to my pulling away.

I had a wonderful weekend with you and we can't be too far from that since it was just four days ago. Tonight I hope we can talk about this stuff and get smooshy for our trip.

I love you and I'm sorry I jumped on you this morning. I'm also sorry that we initiated a conversation in the car that deserved far more time than we had at that moment.

Love,

smoosher

********

From: Mike Young
To: Danna Young
Sent: December 11, 2003 11:52 am

Hi smoosher,

I just upgraded my system and email program, so now when I read your
email, your smiling face appears in the header, kind of like how the IM
program worked. It made me chuckle when I realized that this morning.
So even when you send me something sad or mean, you're still smiling at
me.

I love you very much, and am also sad we started that conversation at
that point. We'll continue it tonight. We'll have a nice night packing
up and writing a few Christmas cards with the kitties.

smoosh,
smoosher

Tuesday, July 18 - 10:30am (posted by CSM for Danna)

I’m sorry to post this here, but there’s no way to make phone calls to everyone we love.

Mike’s pressure started to drop about 4 am this morning. His blood pressure is now about 65/38. It is slowly (very slowly) dropping. There’s no more that they can do at this point. He’s on full oxygen and max pressors. He’s dying.

We’ve issued a DNR because his pressure has been so low for so long, there’s no doubt that his brain has been severely damaged. We’re just waiting for Lonia to arrive from Cleveland to start weaning him off the meds. We’d like her to be able to see him. She should be here this afternoon. We’ve thought of calling her cell phone to tell her what’s going on, but she was going to depart at 5 am heading here anyway, so calling her to tell her what has transpired this morning would only upset her and possibly make her not drive safely. It’s impossible to know what’s the right thing to do in this situation.

If you would like to come, please do - not necessarily to see Mike, unless of course you feel you want to – but frankly, it’s horrible. I just sit at the foot of his bed, talk to him and play funky music on the radio for him. We’re all here, just chatting, eating, laughing and crying in a little room on the 9th floor in the NICU of the Gibbon Building.

I have a feeling we’ll be doing this for days – chatting, eating, laughing and crying. I’m not a Jew, but I’m stealing Shiva. So there.

Tuesday, July 18, 2006 - 6:45 am

Just got a call from Mike’s nurse. They’ve got him maxed out on all his pressors, full oxygen, full everything and Mike’s blood pressure is dropping. Systolic (top number) in the 70s. They are basically just watching because there’s nothing more they can do. This pressure issue precludes dialysis… So here we are. I’m heading there now.

My mom and dad are coming from their hotel nearby to help take care of Baxter and Lonia is heading back into town. Victoria, Chris and Diana are heading to the hospital now.

Tuesday, July 18, 2006 - 3:45 am

3:45 am: I can't sleep. I haven't really tried, but I just don't feel like it. Talked to Mike's nurse, Nicole, just now. She's up to 12 on the Versed. The seizures are slowing, but if you do anything to him at all (like touch him) he has another seizure - so is still considered to be in status.

His heart rate is running high (140-150). His blood pressure is ok, though starting to get a bit lower. Currently, he is maxed out on two pressors (Neo and Levophed) to increase blood flow to vital organs and maxed out on the primacor (for his cardiac output). She has been able to bring the Dopamine way down to 4, but it looks like she's going to have to increase the dopamine yet again.

She was very glad that we told the surgical team to leave Mike the f*ck alone regarding the insane intensine removal procedure (?%&*$). She said that she was prepared to tell them that if they decided to roll him to the O.R. someone else could bring him down because she wouldn't. She told me that she thought he'd never survive it and was annoyed that they even presented the option. Freaking neurosurgery residents - what are they thinking?

I need to sleep. My being awake isn't helping Mike at all.

Tuesday, July 18, 2006 - 2:30 am

2:30 am: Just got a call from the surgical team. They had been called in by neurosurgery to look at Mike because the C. Diff bug seems to be getting worse (or something like that). The surgeon presented the option to me of operating to remove mike’s entire intestine. I was like, “What the f*ck? He would never survive that surgery. You’re aware that he’s in Status and in full blown DIC?” To which he replied, “Yes, I’m aware. And I completely agree with you. He most likely would not survive this surgery. To be frank, I don’t think he’s going to survive anyway, but I had to call you and give you this option of a surgical procedure.”

“Umm… no.”

Diana’s on the phone with him now. She agrees that operating right now makes no sense at all.

Monday, July 17, 2006 - 7:30pm (posted by CSM for Danna)

Short story – not good.

Long story…

They were able to place the line for the hemodialysis (CVVHD – a slower more gentle form of dialysis which they’ve opted to do). That line is in his neck. As they tried to insert it into his groin, they had trouble because he’s so filled with fluid that all the marks they use to navigate in are messed up. So, instead of the vein, they hit the artery. There may be bleeding in the abdomen as a result, but right now, that’s the least of our trouble.

The real trouble is that he has entered status epilepticus, meaning he is seizing almost constantly – in the entire left hemisphere of his brain. This is bad. Very bad. A person cannot survive in this condition. Once in “status” they use “status protocol” to address the problem. This protocol involves a progression of meds to see if any one of them stops the seizures. Since he’s on EEG leads, they can monitor the activity in real time to see what medicine works. The first med, phenobarbitol, did not stop the seizures. They then tried dilantin, which slowed them, but didn’t stop them. The next med to try is versed. This is a med that basically induces a coma to protect the brain and stop the seizures.

The problem, among the other 2000 problems, is that his blood pressure has dropped. It’s currently about 75/45. His heart rate is high (130-140). They have him maxed out on dopamine (28 mg/hr) to keep the pressure up, and have started the other pressor (neo) again to also bring the pressure up. No success yet. Ok, so other than the general fact that blood pressure this low is not good, there are a series of indirect effects of the low blood pressure that are f*cking with our plans. Namely, low blood pressure precludes them from a) starting any dialysis (systolic needs to be at least 90) and b) starting the versed drip.

So we’re just sitting here, waiting waiting for them to get this under control.

In the event that the status epilepticus does not resolve with meds, Andrews says we have about 48 hours. As long is Mike is in status, his brain is under fire from these seizures. The longer it goes on, the greater the brain damage. And given that the seizures are in the left hemisphere which is the dominant side, this is just bad. And given that we can’t even start the f*cking drip of versed to potentially interrupt this madness, we’re just stuck stuck stuck.

We’re in the Gibbon Building waiting room from hell on the 9th floor outside the NICU. Yes, the one with no freaking windows and bad TV on non-stop. And yes, this is hell.

Thursday, May 4, 2006 - evening

[South Park's rendition of Mike, Bax, and Danna - by Dondon - with Bax added by Mike.]

Mike looked so good today. Great color, very alert. So good that they wheeled him to radiation in a wheelchair instead of wheeling him down in the bed. He also was able to get himself from the wheelchair to the chair with minimal help and ate a good amount at lunch.

I told one of the doctors who works with cardiologists Dr. Mandel (her name's Cindy) how great Mike is today. She said that his hemoglobin is way up - from the blood he received yesterday. I told her how well he had done getting from wheelchair to chair for lunch. I showed her the sign I posted above his bed indicating that he needs to be moved around a lot cause he's going to be here for 6 weeks or so. She said that was a great idea so that new nurses would realize the importance of getting him up even when he's tired.

Mike perked up and chimed right in:

"It's true. You really have to tell them what each individual patient can do, otherwise they tend to use the least common denominator.”

Cindy and I grabbed each others hand in shock. It was such a lengthy and meaningful statement compared to what he has been doing lately.

Later, it was really warm in his room and at one point I said I was so sweaty I was glistening like a pig. Mike said, “Mmmmm…. Glistening pig... that's hot.”

Very Mike.

********

I'm still not sure what exactly to do with the info I got from the NYU neurosurgeon this morning. I talked to Kelly (Andrews and Evans' nurse) late morning and told her that I really needed to have that family meeting as soon as possible. I told her that I had received information from another experienced surgeon that suggested there was an alternative path we should be taking with Mike. I told her that I trusted Evans and Andrews had a plan for us and that there were good reasons behind it, but I need to be clear on exactly what that plan is and at what point they move to a contingency plan in the event that Mike does not improve. Dr. Wisoff (NYU) was honest and told me he would rather not sit down or conference call with Evans and Andrews. He said it would be uncomfortable since their entire philosophies are different. I respect that. He said from minute one that he embraces a philosophy of radical aggressive resection through craniotomy. He admitted that his approach is not deemed best by all. Point here being that the meeting will not include the NYU doc.

*********

I've been thinking a bit about how people are responding to our story. I've heard from many family, friends, and distant acquaintances that there's something addictively devastating about this saga. Some folks tell me they have trouble sleeping, check the blog throughout the day, reread passages over and over. And while I certainly appreciate folks being up on the latest details prior to visiting Michael in the hospital, and I do draw strength from the knowledge that I'm not alone here … I do fear that people could drown in this.

And that is the last thing Michael would want. He doesn't like pity and he is not a fan of wallowing. Period. Mike has seen his fair share of hardship prior to the S.F.T. and was never one to dwell on it. He's a positive guy who sees the glass half full. Always.

I have actually told several of our friends to take a break from this - Go do your thing. Live your life! Have fun! Check in with us in a few days or a week. If Mike felt that people were feeling guilty about having a good time in the face of his situation, he would be so annoyed. Seriously… I think he would be pissed off. And if you know Mike well, you know this is absolutely true.

I realize that in recent days I have used this blog as a space to vent my frustration in a way I hadn't been doing before. Earlier I had just used it to communicate the latest details of Mike's condition to a large number of people in a very efficient way. Perhaps in changing the tone of my entries I turned the content of the blog into a more painful experience. But please know that I use this space as the forum where I can get it out of my system. But, I don't sit around crying all day. I make a point to avoid wallowing or getting buried because that is not what Mike would want. Simple as that. And then there's Baxter - who shakes his groove thing, squeals with delight, screams "touchdown!" when he feeds himself with a spoon and runs into his playhouse, throws the shutters of the window open and says with his head tilted to the side, "hellllloooowwwww."

I think we all could learn a lot from Mike's own words about the situation. He wrote a long email to friends and family in late October, announcing his diagnosis. He gave the dry boring details of the case and ended with the following:

“I am feeling surprisingly calm about this. I am fortunate in that I tend to worry about things I can control, but not so much about things I can't. I'm in excellent hands at Jefferson, and I am in very good health overall, so I should bounce back well. It's not the obstacles you face, but how you react to them that's important. I'm confident this will be just another chapter in the story of my life.

I appreciate your thoughts and well wishes, and will send an update once I'm home and able to recognize objects again.”

That's Mike - in a nutshell. "It's not the obstacles you face, but how you react to them that's important."

So, take a break from all this. Enjoy your own partners, children, jobs, housework, and home repair projects. Instead of a source of devastation, try to use this story as a source of inspiration. This is going to be a long haul and we'll need to draw strength from all of you at various points down the road. And yes, some days I'll be at a low point and my entry will be a downer, but know that after I close my laptop, I feel lighter. And when I leave my house to head to the hospital, I get into my car, put the windows down, sunglasses on and appreciate the warmth of the sun as I sing Jack Johnson at the top of my lungs.

Wednesday, May 3, 2006

[Photo: 1/05 - 2 month old Bax and Mike - in the witching hour. Yes, Dondon, Kathleen, Cheryl, Randy, and all those other pregger people whose names I can't divulge... between the hours of 4 and 10 pm lil' babies do a lot of this.]

Dr. Andrews said one thing yesterday that seems to have changed how I’m starting to think about this whole thing. He said that we need to take it week-by-week – not even day-by-day. One week at a time. I think that helped me reorient myself towards what is inevitably a chronic situation.

This morning I got up with Bax at 6:15 am and then returned to bed to sleep from 8:45 am until noon. I guess my body needed permission to slow down in its approach to all this.

Mike’s exhausted today. Not much of an appetite. Got radiation therapy a little late today (1 pm) because this morning his blood count was too low and they needed to give him some blood before radiation therapy. Dr. Andrews talked to me about it a bit. It seems Mike was looking a bit anemic this morning. He’s been so sick with fevers and had so much blood drawn and been so dehydrated he just didn’t have a lot of blood. The new blood should help him all around. BP is a bit low (90/60) but he has to be on meds that keep it low because his heart rate races without it. This morning PT came in and sat Mike on the edge of the bed and his heart rate jumped over 140.

Lovely Judy (NP – nurse practitioner) came in to chat with me at length this afternoon. She told me that it is quite a challenge keeping Mike’s numbers in normal range. For instance, this morning Mike’s nurse was just 1 hour late giving his DDAVP and Judy came in to find the Foley bag (catheter for urine) so full it was overflowing on the floor. His sodium had jumped from 132 to 141 in a matter of hours. Interestingly, Mike seems to do better (cognitively and in terms of wakefulness) when his sodium is a bit higher (140-145) rather than in the lower range (130-140). Maybe his body has just gotten used to peeing more and having higher sodium. Who the hell knows. I can barely make heads or tails of any of this. I asked Judy what the heck they think the deal is with Mike’s heart rate jumping to high and she said it’s possible that it’s simply due to the excess pressure on the brainstem.

Just a thought - the term “benign” is such a misnomer for this tumor. No, it’s not cancer, but it’s not “benign” either. To review… the parts of Mike’s body and functioning that have been affected thus far:

Vision loss, No short term memory, Extreme fatigue, Fevers, High heart rate, Incontinence, Diabetes Insipidus causing dehydration and high sodium, Hallucinations, No production of cortisol or testosterone

And then there are the indirect effects: Muscle weakness from bed-rest, Infections likely from foreign bodies (like vp shunt), Appetite loss likely worsened by radiation.

Oy yoy yoy.

Sunday April 9, 2006

Today was a much brighter day!

Mike was alert and even feeding himself lunch today. He answered almost every question correctly - except for our exact street address number and who ran against Bush in 04 (but let's face it, how memorable was John Kerry... really).

He made several jokes and seemed surprised to learn that he had an additional surgery friday morning. He didn't realize why we were instructing him to stop touching his bandage on his head. "You have no actual skull bone under there, Mike. One big soft spot... like a baby. That's it." He raised his eyebrows. "Ahh... I see." It's still tiring for him to have his eye open for long periods of time. his right eye is still mostly swollen shut.

As the day went on he did get increasingly fatigued. He didn't seem to recall things that had happened earlier in the day, like who had been in to visit or what he had for lunch. But that could simply be the brain shutting itself off to heal some more - or at least that's how I'm going to think about it.

The plan right now is for another surgery Tues or Thurs to replace the bone plate and to change the external shunt he currently has into an internal programmable shunt. We'll see how he does tomorrow.

One day at a time. Never has this stupid expression meant so much. One freaking day at a time.

Thank you for your amazing support through this total saga. The love from friends, colleagues, family, extended family, long lost friends, congregations of our loved ones, and friends of friends of friends... is simply overwhelming.

PS: For those of you wondering what exactly this tumor looks like and where it is, this photo is an MRI of someone with a tumor almost identical to (though perhaps slightly larger than) Mike's. The big mass in the center is the tumor.

love, danna

Backstory through April 7th

Backstory

My husband Mike (age 38 - shown here with 15 month old Baxter in March 2006) was diagnosed with a benign brain tumor (craniopharyngioma) in October 2005. His only symptom was a glare in his peripheral vision. If left untreated, these tumors halt all pituitary functioning, cause blindness, neurological and personality changes. On Nov 11th, he had an almost complete removal of the tumor (except for a rim along the hypothalmus) through a new endoscopic approach through the nose and sinuses (at T. Jefferson hospital). He recovered well and returned to work at Christmas.

He was scheduled to start radiation therapy to prevent regrowth in Jan, but an MRI revealed that the remaining cells had formed a cyst. On Jan 28th, he had an additional surgery to implant a shunt to drain the cyst. The procedure had to be repeated twice over that week because the location of the shunt was not quite right. Over the month of February, he was supposed to start radiation, but the surgeon spotted something questionable in the MRI that made him suspicious that an infection was brewing. Radiation in the face of infection can have catastrophic results, so radiation was postponed. Over the course of the month, Mike was not himself. he was fatigued, unenergetic and at the end of the month, appeared to have lost his sense of direction. Throughout this time, bloodtests continued to show no problems.

The week of March 13th, I watched as his cognitive abilities changed before my eyes - becoming forgetful, not knowing the day of the week, and falling asleep mid-conversation. I was in touch with the neurosurgeon all week and multiple MRIs and blood tests showed no problems. I even sent him to the ER on friday, March 17th and he was sent home with a clean bill of health. The main problem throughout this time was that Mike was funny, friendly, and did not feel as though anything was out of the ordinary - so was not in the state of mind to say, "Can you give me a neuro exam? I'm not funtioning properly in terms of my cognitive abilities." The next morning, Saturday, I watched as Michael cognitively unravelled. He began confabulating (making up things that never happened), and his short term memory vanished. He couldn't even recall if he had taken his meds or not or even what meds he was on (which, with a non-functioning pituitary gland and numerous life-saving medicines, can be fatal). He tried to feed 15 month old Baxter breakfast multiple times and he thought the date was Jan 28th.

I brought Mike to the ER at Jefferson that afternoon and told the ER doctor that I could NOT take this man home in his current state. It took 3 hours of explaining that "Mike presents well and is funny and charming, but I guarantee that a neuro exam will reveal major problems." Finally I was heard and he was admitted that night. Sunday, in the hospital mike got worse. Sunday night his fever was 104. One of his hormonal imbalances due to the tumor makes him urinate so much that he becomes dehydrated. With meds, this is no problem, but the balance was thrown off and he spiraled out of control on Sunday-Monday. His vision loss continued to the point that he was almost blind. His sodium was 168 (normal is 135-145) and his resting heart rate was 160. Because he kept having to use the bathroom, he repeatedly would get out of his hospital bed heading for the bathroom, and would forget he had an IV in, so would rip it out of his arm or the wall. He also tried to leave the hospital in a mad dash down the hallway. So, Sunday night and Monday, Michael was strapped into his bed in the Neuro ICU. At that point, we were not certain that Mike would be coming home from the hospital. Finally, with no other options, they decided to remove the shunt in his head on Mon afternoon.

In a sort of miraculous turnaround, after surgery Mike quickly began to improve. Over the next four days he got back to normal, sodium and heart rate down. Cells from the shunt were tested that week and revealed that there was, in fact, a slow growing infection is his brain. They administered huge doses of targeted antibiotics through his IV.

However, MRIs also revealed that the remaining tumor cells, having not been radiated due to all these complications, had regrown at an unprecedented rate - making the tumor almost its original size. This meant after all this, we were almost back to square one. So, they attempted to remove the tumor again using the endoscopic approach (for the second time) on tuesday March 28th. Unfortunately, the scar tissue from the first surgery made this approach fruitless. All vital structures are stuck together with scar tissue : optic nerves, corotid artery, hypothalmus.

Because Mike's vision loss and double vision were quite bad, any chance of resuming his old life and job depended on having vision restored. The only chance of this was through a craniotomy - a fresh approach through the skull. This took place Tues, April 4th.

The craniotomy involved an incision from the ear up the skull along the hairline to the top of the head. Once inside, Dr. Evans spent hours trying different avenues to gain access to the tumor with no luck. The entire area is interconnected with scar tissue - carotid artery, hypothalamus, optic nerves. He had to back out and say the next step would be radiotherapy. On Wednesday Mike was kind of there but tired, and on thursday about the same. Friday am Mike was almost impossible to rouse and didn't know where he was and responded inappropriately to questions. They rushed him to surgery Friday am to put a shunt in to drain some of the fluid that was collecting in the third ventrical. They also removed a portion of the skull to give his right frontal lobe room to swell with less risk of damage. After surgery he was able to follow basic commands (squeeze my hands, wiggle your toes, stick out your tongue) but still had trouble with where he was and other basic questions. Sometimes it was gibberish. Other times it was just non-sequitors. Once again they have his arms and feet restrained because he gets restless and tries to pull at his various dressings and IVs (and given that he has no skull bone over his brain in the front, that's not a good thing).

As the day went on he seemed slightly more alert... nothing dramatic, but more likely to be able to give appropriate one word responses. It took a lot to rouse him from the sleepy state he seemed to be perpetually in. His heart rate was quite high (140-150).

Before I left that night, I got him wide awake and he was able to look me in the eyes with his left eye (right eye is still swollen shut). he told me he loved me and I told him that we were a team and that we would beat this to which he replied confidently, "We will." I kissed him goodnight and he repeatedly said, "kisses" in a quiet voice as he drifted back off into slumber.

(summary through April 7th)

July 13, 2006 - noon

[Bathtub - not actually me. Some random alcoholic penguin-lover who put this jpg on the internet.]

I had a vivid dream last night just before I woke up. I had gone to the doctor to get a physical exam and they found that I tested positive for some virus that had the potential to cause an epidemic in the country. I myself wasn’t sick, as my body had developed the antibodies, but I was a carrier and could infect others. It would take 40 days for the virus to work itself out of my system and for me to stop being a carrier.

The government ordered me under quarantine for a period of 40 days. I freaked out. I explained that my husband was gravely ill and I was his advocate. I told them I had a baby who needed me, and it was impossible for me to be in their custody for over a month. They insisted it wasn’t negotiable – yet I went ahead and contacted all of our lawyer friends to get the government to drop the quarantine orders.

As the dream went on, and the government representatives explained what quarantine was – a 15X15 room with a twin bed, two sunny windows, a tv, all my personal clothing and toiletries, an elliptical machine , 3 meals a day delivered through a slot in the door – I found myself wishing desperately that they would detain me.

It was a way out. A guilt free, out-of-my-hands way out.

********

I know I am going to survive this. As my therapist told me, “You’ll survive. You’ll be f*cked up – but with grace.” I love that expression - and now that's my goal. "Fucked up with grace."

*******

Last night, I took a long bath and just sat there, sunk way down in the water looking down my very long body towards my feet. I don’t take baths very often – as I told my sister once, baths are better in theory than in practice. They sound so relaxing and inviting, but once you’re in one, it never lives up to the hype. Yet, while I don’t take baths a lot, they’re like coming home - sitting there with your own body for a moment and remembering looking with those same eyes at those same legs in that same position as a little kid, as a teenager, as a twenty-something. The world around me is chaotic (mmm... understatement), but my body is always here, just getting me through one struggle at a time. So I took a moment, lying down in the tub, to breathe deeply and look down at the physical body that I have completely forgotten about over the past several months.

I had a strong sense of peace lying there. So strong that I feared I might be tapping into something serious going on with Mike… but I wasn’t. I think I finally (at least in that moment) fully embraced a zenlike perspective. Everything is fine. If Mike dies, it’s ok. If Mike gets well and we fight this tumor for decades to come, it’s ok – cause I’ll have my best friend by my side. If Mike gets sort of well, but not well enough to live at home, it’s ok. Maybe what I was feeling was the pretty f*cking accurate observation that anything would be preferable to where we are right now – and we can’t live where we are right now forever. Therefore, things have to get better. Anything... would be better.

It feels like if we can just mike to survive these acute physiological issues of blood, heartrate, pressure, and electrolyte balance, we might be able to hang with my actual Mike again. It’s like either he’ll be dead or he’ll be going to the movies. Given his amazing turnaround Friday night (just 6 days ago) and the fact that it doesn’t appear that he suffered major damage as a result of flatlining yesterday – he could be totally in there. Also, I recently learned that after swelling up Saturday and Sunday post-craniotomy, Sunday night (July 9th) the swelling started to resolve and he was really alert on Sunday night. Apparently his nurse, Tom, who has taken care of him in the past, went out to the nurses’ station at one point Sunday night and told the nurses that he had taken care of Mike numerous times, but he thinks he finally really “met” him. So, as recently as like 80 hours ago, Mike was “there” there.

So, (in comedysportz language) to review… If we can just make sure Mike doesn’t die… maybe we can hang with him – the real him - again. Death or Fun. I choose fun.

***************

I’ve gotten lost a bit in the timeline here (not to mention in an ongoing battle with Susan about how many surgeries Mike has had. CSM, we were both wrong) Here's the summary:

• Surgery #1: November 11 (endoscopic resection of tumor - success. All but a rim on the hypothalamus was removed)
• Surgery #2: January 28 (implant catheter to drain cyst... miss)
• Surgery #3: February 1 (move catheter... too close to artery)
• Surgery #4: February 3 (catheter is just right)
• Surgery #5: March 20 (remove catheter due to complications and infection)
• Surgery #6: March 28 (endoscopic surgery through sinuses to try to get the regrown tumor - no dice)
• Surgery #7: April 4 (craniotomy to try to get the regrown tumor - no dice)
• Surgery #8: April 7 (emergency surgery to implant new catheter for hydrocephalus and to remove bone plate)
• Surgery #9: April 13 (replace bone plate and implant internal VP shunt)
• Radiation therapy: April 25 – June 6 (30 sessions)
• Rehab at Magee: June 7 through June 26th
• Surgery #10: June 30 (try aspirating cyst with needle – no dice)
• Rehab at Magee: July 1 through July 6
• Surgery #11: July 7 (craniotomy on the left to aspirate cyst – success)
• Surgery #12: July 11 (front left bone flap removal to release blood clot)
• Surgery #13: July 11 (hemi-craniotomy to remove back skull flap)

So, a couple of more funny and f*cked up things on the home front.

Kylee turned to me two days ago and said, "Aunt Danna, Does a chicken know it's a chicken?"

Let us all take a moment and ponder that deep thought. Given the f*cked up world we're living in right now, that question may be as relevant as any.

********

Jae’s van broke down yesterday. Thanks to the saints at Bax’s daycare, she got a ride to the garage and the van's now fixed. Than, last night, Kylee (my niece) had a fever. She saw the doc today – strep throat. FANtastic (that's sarcasm). Then, in the middle of talking with my sister about Kylee’s fever as I’m downstairs in my UNDERWEAR, my cleaning lady comes into the house (yeah, she has a key and usually we’re not home when she’s here). I acted like being in my underwear was totally normal and told her we wouldn’t be needing the house cleaned today.

**********

Then, I get a call from a mortgage protection company. “Mrs Young? I was wondering if you had a couple minutes for me to talk with you about your pre-application?”

Oh right! Them. A week ago, I got so f*cking tired of getting letters with big bold print saying, “Mike Young! Last chance! Hurry or you’ll miss your opportunity to get mortgage protection!! Just fill out this brief questionnaire below!” -- that I finally just filled it out and sent it back. Here's how I responded:

History of serious illness? Yes.
Currently under a doctor’s care? Yes.
Ever been hospitalized? Yes (“currently hospitalized, actually”).
Any medications? Yes (“levoxyl, hydrocortisone, DDAVP, Decadron, androgel, provigil… and 10 others… not enough room, sorry. Full list available upon request”).

So, the woman on the phone says she wants to go over some of the “flags” raised on our application. Here’s what I said to her in an overly pleasant, somewhat maniacal tone:

“Well, I’m sure you are a very nice person and you are just doing your job. Here’s the deal. There’s no way in hell you’re ever going to insure us! No way in hell.”

“Are you sure of that, Ma’am? Why don’t we go over some of these questions?”

“yeah… well - I sent it in as a joke. I got tired of receiving your letters. There was a reason I wasn’t applying for mortgage protection. Namely, that my husband has been hospitalized for 4 months.”

“I’m sorry to hear that, but, are you sure that you wouldn’t be eligible?”

“Umm… Yesterday they lost Mike’s pulse and he was code blue in the neuro-intensive care unit where he’s in critical condition from a brain tumor for which he’s had 13 brain surgeries. I may be going out on a thin limb here… but my hunch… just a hunch… is that you’re not going to be giving Mike mortgage insurance.”

“Ma’am. I am sorry to have bothered you.”

“No problem. I understand. Just, you know… sometimes maybe if people aren’t writing you back – aren’t taking you up on this “fabulous” offer for mortgage protection… maybe there’s a reason. Maybe they look at the questionnaire and say, “Pointless.”

She quietly apologized again and hung up the phone.

I'm crazy. But at least I'm still laughing.

Remember - "F*cked up with grace."

July 18, 2006 Friends Gathering at Young House

(it's Anne L. here writing at Danna's request.)

Mike died today at 11:20 am.

Danna would like all their incredible friends and loved ones to know that everyone is invited to join together at the house all afternoon and evening. Children are welcome. She plans to turn on the sprinkler to run around in, and we'll all roast outside and remember our dear friend Mike.

There will not be a traditional funeral. Instead, Danna will have a celebration of Mike's life in a few weeks. She will post more tonight on this.

"What gives dignity to death is the dignity of the life that preceded it."

8 years ago,  in March 2006, Mike and I had just returned from a short vacation to Charleston, SC.

Within days of our return, he would be hospitalized and would remain that way through July.

I used to blame his insistence on taking the Charleston trip for his death, since he put off radiation treatment so that we could go.  But, you know what? As far as options go, all of Mike's options sucked. And at least we got 4 days of warm sunshine, delicious food, horse-drawn carriage rides... and we even signed up for a time share while we were there (I should have known he wasn't quite in his right mind).


I rarely revisit the dirty details of the hell that was Oct 2005 - July 2006.  I recorded some of it in this blog.  I also wrote a book-length manuscript which some publishers were interested in, provided I was willing to go back and make some changes.  I wasn't.  Once it was written, I couldn't even bring myself to open the document.  But today, for some reason - curiosity, i guess - I went back to the part of the manuscript about that Charleston trip.

Sure enough, I had forgotten most of it.  The brain is a brilliant creature.  If you leave a memory untouched - if you choose to not access it - it's like it was never there, like it never even happened.

But, I'm starting to wonder if, instead of seeing this trip as a harbinger of the dreadful things to come, I should think of it as Mike exercising his right to live - and die - the way he wanted.

Let's face it:  If Mike had survived this, he would never be the same.  Not only would he not be able to do the things he loved (improv, design, cooking), he would never be able to live unassisted.  He would be blind and would need constant medical care.  He would require massive amounts of medication: massive steroids, testosterone supplements, as well as synthetic forms of EVERY hormone and chemical that is governed by the pituitary gland.  He would suffer from electrolyte imbalances, would continue to have lapses in short-term memory, and would likely need to live in a nursing home.

I know I've written this dozens of times over the last 8 years, but, I need to remind myself:  Mike would have wanted to die rather than live through that - and he would have wanted to die rather than putting all his friends and loved ones through that.

A few days ago, I was listening to a rebroadcast of Terri Gross' interview with Sherwin Nuland, the author of "How we Die."  Nuland is one of the fathers of the hospice and palliative care movement.  He confessed the guilt he had about urging his cancer-stricken brother to try an excruciating new cancer treatment - one that was unlikely to work - but at least would give his brother a "chance".  His brother died anyway, and Nuland regrets that by his own urging, his brother spent his last months going through this awful treatment, instead of just being with his family and dying in peace. Through this experience, he gained clarity and perspective on what it means to die with dignity.  Nuland writes:

One of the points I try to make in this book - and I make it a number of times and a number of different ways - is that what gives dignity to death is the dignity of the life that preceded it. When we have brought about a situation where we are loved and we love, where our lives have been lives - not necessarily of great accomplishment, but of a sense of having given something to others - whether those others are as close to us as our children or parents or whether those others are as far away as a radio or a television audience. When we have done that, our deaths have dignity. Our deaths become a part of our lives in the sense that with our deaths we give something to those who are left behind as we have given our lives to them.


So, in addition to all the joy that Mike brought to people through his friendship, his improv talents, and his infectious laughter, in the spirit of Nuland's quote, the dignity of Mike's life was also enhanced but the way he chose to live in those last months.  By insisting on taking this trip, Mike may have hastened his death, but that, in and of itself, might have been the best possible outcome.

*******

March 8, 2006.  Mike and I left for Charleston.  Bax was in good hands with Deke and Aunt Victoria and Mike and I were both excited to simply get away.  Mike had planned a relaxing trip with reservations at the Andrew Pinckney Inn – a BnB just off of the market in Charleston.

When we got to the airport, Mike realized he had forgotten one of his medications.  His Desmopressin (DDAVP) nasal spray.  This was the medicine that he used to supplement a hormone that his body didn’t make anymore since the surgery.  It is the hormone that our bodies release that tells us not to urinate out all the fluids in our body.  Without this medication, Mike would pee and pee and pee and then become dehydrated.  His sodium would elevate and he would get tired and slightly whacky.  This is the condition that we would battle for months, Diabetes Insipidus.

He convinced me that it wasn’t a big deal.  He had refills on his prescription and we would simply get it filled once we arrived in Charleston. 

Once on the plane, Mike had to pee.  Not like you and I have to go pee – but like a desperate need to go pee – n.o.w.  He got up while the “fasten seat belt” light was on, received a reprimand from a flight attendant, and proceeded to the bathroom anyway – twice.

That afternoon, we checked into our room and immediately went in search of a pharmacy.  We walked the streets of Charleston and Mike had to stop several times to pee – behind a bush and in a parking lot.  He was so embarrassed, but there was nothing he could do.  He needed to get his medicine.  We got to the pharmacy, got his refill prescription for DDAVP transferred and waited for it to be filled. 

Once we got it, I was relieved.  He took two puffs of the magic pee-inhibiting nasal spray and we headed out – ready to actually start our vacation.  About ten minutes into our walk back to the Bed and Breakfast, Mike realized his palm pilot was missing.  He had been playing some games on it while waiting for the prescription to be filled, but now it was gone.  We retraced our steps to the pharmacy and found Mike’s pile of maps – which he had also forgotten – but no palm pilot.  It seems that someone took it. 

In typical Mike fashion, he sighed a quick sigh, shrugged, and said, “No big deal.  I have everything saved on my computer at work.  I’ll just have to get a new palm.  That one was outdated anyway.”

I felt so angry.  Not at Mike for forgetting the medicine or the palm pilot.  But at Mike for not acknowledging how weird this all was – how unlike himself he was.  We walked in silence.  Finally I stopped him, “Smoosher, do you feel like yourself?  Cause you certainly don’t seem like it.”

He looked hurt.

“No,” I backpedaled, “I just mean… you seem distracted or absent-minded.  Less able to remember things than your usual self.”

“Hmm,” he said quietly, pausing to think for a moment, “Maybe you’re right.”

And that was it.  End of discussion.

The rest of our vacation in Charleston was a combination of smooshiness and total dread.  Mike was smooshy.  I, in contrast, was watching my world fall apart before me. 

Mike slept about fourteen hours a night and napped for another 2 or 3 in the afternoons.  In the night, when he got up to use the bathroom, each time he would struggle to open the door to the hallway.

“Smoosher, what are you doing?” I would ask.

“I’m trying to go to the bathroom, but it’s all locked up,” he said.

“That’s cause that’s the door to the hallway.”

“Oooh,” he would say in a jovial exaggerated tone, “Doh!  Silly Smoosher!”

Our first night there, we went to the ATM to take out money.  Our account was overdrawn.  Not by a little – but by several thousand.  The entire trip we charged everything and agreed to figure out what was wrong with our finances when we returned to Philly. Instead of transferring money from savings to checking, as planned, Mike had done the opposite - leaving us in the red. 

Our second day there, while poking around in the market, we found ourselves roped in to an upscale time-share pitch.  In exchange for an hour and a half of our time, we would receive free tickets to two attractions (that we planned on seeing anyway) along with a four-day three-night vacation package. 

“We don’t have anything planned…” Mike suggested.  “Maybe we should do it.”

Why not? 

One hour later we were inside the sales office of “Bluegreen Resorts” at the Lodge Valley Inn in Charleston.  After touring the Inn, we sat down with Valerie, our charming sales agent, and talked about how much we loved vacationing. 

Valerie used a questionnaire as a guide in our Q&A:

• Describe your ideal vacation.
• Looking ahead to the next year, how many trips do you think you’ll take?
• What kinds of trips do you see yourself doing?
• What about the next five years? 
• What was your favorite vacation destination thus far? 

While the questionnaire was designed as a sales pitch, it provided Mike and me a rare opportunity to reflect on all of our past travel experiences.  Are there were many:  Kawai, Honolulu, Disney World, Shenandoah Valley, Martha’s Vineyard, Lake Placid, The Poconos, Islands of Adventure, San Francisco, Miami, Lake Tahoe, Monterey Bay, The Florida Keys, New Hampshire, Cape May, Bethany Beach, Maine…

After three hours, Mike and I agreed to discuss the time-share package over lunch and return with our verdict.  We returned to Valerie and told her that we wouldn’t be comfortable buying in completely, but would love a trial package (about $1000).  As we filled out the paperwork, Mike began to fall asleep at the desk – repeatedly. 

“Mike, are you ok?” Valerie asked.

“I’m fine,” he replied, not realizing he had been nodding off. 

Valerie then brought in Justin, the young man in charge of finalizing sales.  We gave handsome young Justin our IDs, signed the forms, and shook hands.  Mike and I left the bluegreen sales office that afternoon smooshy and excited – smooshy from all the reminiscing about our wonderful lives together and excited about the future. 

Ten days later, watching Michael unravel in our kitchen back home and packing up his things to rush him to the Emergency Room, I would place a call to Justin in Charleston, SC. 

“Hello.  Bluegreen.  Justin speaking.”

“Justin.  My name is Danna Young.  My husband Michael and I signed up for your trial package a week ago.  My husband is very ill and I need to cancel our enrollment.”

“Ok.  That’s fine,” he said impassively. “We can’t refund the initial deposit, but we’ll cancel your enrollment.”

“Thank you,” I hung up.

Why did I choose that moment to make that call?  How did I know that this was a big enough deal to warrant my canceling this timeshare?  I have no fucking idea.  It was an insane – though shockingly logical – thing to do. 

The morning following our enrollment in the bluegreen sampler’s package, still in Charleston, Mike left to go for a jog by the water – three blocks from our bed and breakfast.  Fifteen minutes later, he was back in the room – smoothie in hand.

I laughed, “Some jog!”

He grinned a bit.  “Eh,” he shrugged, “I couldn’t find the waterfront, so I grabbed a smoothie instead.”  I looked at him quizzically, but he didn’t seem to register my concern.  I watched as he emptied his pockets onto the nightstand.  There, in the pocket of his shorts, was a map.

That afternoon, we shopped in small boutiques along Market Street, holding hands, sipping on lattes.  In one shop, Metropolitan Deluxe, we laughed at quirky gifts, magnets, and cute tableware. 

“These scream ‘Danna!’” Mike said, pointing to some throw pillows with bright pink and yellow gerbera daisies embroidered on them.  So true.

We browsed for about fifteen minutes.  “You about done, smoosher?”  I asked.

“Yup,” he replied and walked decisively towards the back of the store. 

I just watched, horrified.

I stood stunned as he looked around him, turned back and looked at me briefly.  I didn’t move.  He put his hands in the pockets of his windbreaker and nonchalantly walked back towards me, past me and out the door – as though nothing had happened.

Between our return home on March 11 and that Friday, March 17, I watched as Michael fell apart.  I saw him having difficulty getting organized enough to feed Baxter dinner.  He put the wrong lid on Bax’s sippy cup and struggled to use a can opener. 

On Wednesday morning before work, he stood at the kitchen counter, looking concerned. 

“What day is it?  It’s Monday, right?” 

My brow furrowed, “Does it feel like Monday?”  convinced that the Socratic method could get him reoriented.  He didn’t answer.  Instead he asked again.

“It is Monday, isn’t it?”

“Smoosher, what did we do last night?  What show did we watch that we love?”  He had to be able to get that.

“24?” 

We hadn’t watched 24 in months.

“Are you serious?”

“Smoosher,” he began to get frustrated. “What day of the week is it?”

“It’s Wednesday, Michael.  Remember?  We watched American Idol last night?”

He closed his eyes for a brief second, palms of his hands on the counter, squinting.  He began to nod, “Right, right.  Yes.  I remember.  It’s Wednesday.”