2011 - David

This is simply taken verbatim from the posts I made on Facebook notes - I havent the strength to redo any of this.

Wednesday, March 9, 2011 at 7:51am - Important information on David's health

I havent really been letting folks know what is going on so as these have been David's wishes but I feel that I better get it out here and let folks know what is going on.

David got a number of small clots in the liver and in the portal vein which caused absorbtion problems with meds and led to minor rise in viral load early this year.

This, in turn, caused his platelets to plummet to extremely dangerous levels and cause pinpoint hemmorages all over him. They changed meds and his viral load has stabilized. They have him on Lovenox injections to slowly (very slowly) dissolve the clots.  They also put him on huge steroids to help the platelets but that caused severe diabetes.   They got him on insulin and switched the prednisone steroid to a different one to keep the platelets up.  (He is a mass of red from head to toe)

This steroid, however, has caused massive swelling in his legs that has left him unable to stand or walk.  (There are a host of other minor issues going on too.)  He is in City Hospital and we have switched the steroid to a new one that supposedly has less side effects. 

During all this, he has not been eating (we have been battling <grin>) and he has lost a huge amount of weight and weighs about 100/90 lbs or so so does not have many reserves to fight with.  As of yesterday, the swelling in his legs is slowly going down. </grin>

David takes many medications and had given the hospital the list - unfortunately, on that list were a number of items that were "take as needed" or "take very rarely".  Instead, the hospital gave him ALL of them including - 100mg of morphine (which is normal) but also Dilaudid (very heavy painkiller), Temazapam and Clonazapam (VERY heavy sleeping pill/antidepresseants) and all sorts of other stuff, which left him very disoriented and doped yesterday morning.  I caused holy hell and by last evening he was doing better. 

We are cautiously optimistic that the new steroid will level him out and that we can get him walking so he can come home and fatten him up.  None of us know the prognosis but again, I am cautiously optimistic.  David has succeed in scaring the hell out of me a few times so this is hopefully just another of those times.  As you know, though, he hates fuss and bother and he is sleeping a lot.  My cell is 202-425-4034 and I will try to post updates here.   

We love you all!

Ian

Wednesday, March 9, 2011 at 6:28pm

The swelling has gone down a lot in his legs (feet are still swollen) and he seems to be stabilizing.  He is having some pain but they are trying to figure out his pain meds (although I wish they would listen to me as I know exactly what works, which is 100mg morphine and dilaudid as needed and have left a strong note and message for the doctor demanding that - they reduced his pain meds to 60mg and added oxycontin thinking that that was what caused the disorientation the other night when I know it was because they were adding the temazepam and clonazepam).  Anyway, I got a tiny bit of food in him and dinner will be served in about an hour but he told me to get lost and let him sleep (in a nice way).   Lots of kisses and hugs and I left him dozing.  The nurses are really sweet and promise to call instantly if he calls out, gets agitated or anything happens (he prefers to be left alone most of the time).  He is a little unfocused and couldnt remember his email password etc but I am hoping that that is because of the damn oxycontin. 

The goal is to get him walking so I can bring him home and look after him properly and make him consume calories.  While I was getting the root canal, Billy stayed with him a while and then Julia was there all afternoon.  If folks want to visit or sit with him, you are more than welcome but it is not necessary - the offer to stay here is, of course, completely open - just call or show up.

Personally - they re-roto-rooted my root canal and packed it temporarily and hope that it doesnt stay infected - if I have no pain etc I will race down to DC on Friday and have it finished.

Totally wiped, so I am going to try and get caught up on some office work and head to bed.

Love to all.  Ian

Thursday, March 10, 2011 at 2:00pm

He had a rough night but the main pain issue is under control.  That said, he is having very severe abdominal pain and has not eaten anything since yesterday.  I gave him 3 sips of Ensure and it all came back up.  He is also very disoriented.

They are taking him to do a CT scan of the abdomen - possibly the pain meds have just caused backup and this is what is causing problems.  At the same time he just keeps moaning and wanting the pain to stop and the docs keep babbling on about do not resusitate orders and the nurses keep talking about looking into Hospice etc.   I am kind of at my wits end as I am convinced that we can get this back under control but I really dont know Davids wishes as he isnt too rational right now.

To do the CT scan he needs to drink stuff - I am not sure it will stay down.  He wants the stomach pain to stop but got angry when they asked about doing a colonic type stuff.   At the same time I dont want to say "Dope him to the eyeballs" as the doctor has scared me that he might od/stop breathing etc.

I'm starting to get a little panicky - not really panicky - I just want him to stop fucking hurting and I dont really know what I am doing.  I dont know if he is dying and I am just living in a dream world thinking that we can get this beat and get him home but I dont think he thinks he is dying and I remain convinced that we can get this stabilized.

Val is coming in to talk with me.   Hopefully they can get this CT scan done asap and we will have some better options.

I'm kind of frightened right now and have to go out the room for a little cry every so often.

Ian

Thursday, March 10, 2011 at 6:44pm

The CT scan has come back.  There is a massive bladder infection so I have authorized runs of Flagyl, Diflucan and Cipro.  The docs here in Martinsburg, although very good, do not have an infectious disease doc at this hospital so they have recommended that he be transferred and I am calling his hematologist in DC (who is the best and head of Georgetown's department) and getting a transfer arranged to Georgetown hospital which should happen first thing in the morning.

They are also going to do a thing in the morning  (cant remember what it is called right now) where they draw some of the fluid out of the abdomen that seems to be contributing to the pain.

I have had my 1 hour nap so am heading back to the hospital.  Will keep everyone posted.

Ian

Friday, March 11, 2011 at 9:38am

Damn this gets confusing.

Things are looking better this morning.  They ran and are running the antibiotics for the bladder infection.  He slept through the night with NO PAIN!!! Hooray!!!  My mom, Val, slept on a cot in the room and I got a solid 8 hours sleep.

The main doc here (a hematologist who both David and I like) came in this morning and said that the whole "transfer him to Georgetown" is bullshit.  He has no exotic infections going on and he feels that we are doing all that can be done here and that moving him is unnecessary stress and results in training the nursing staff and going through all the idiosyncrasies of David's particular needs again.  I agree with him.  The nurses here love him and treat him well.  My family are here and we are able to look after him and I dont see any compelling need to transfer him.

He still has not eaten anything for days and still throws up if he is given anything. The doc listened to his stomach and there may well be a blockage.  I have authorised nutrient feeding through the IV to try to keep his strength up and they are going to check further.  If surgery is required to clear the blockage, that is fine with me.

He has bed sores on his bottom so we have arranged for a special bed and are now rolling him every two hours (he doesnt like that but once he is settled is fine).

On the good side, his platelets remain up at 45.  The steroids go down 1 mg a day so we are now down to 12mg (from 60).  The pain is much less.  The legs are no longer swollen (feet are still swollen though).  The huge bruises, spots and marks are all healing.

Today I am more optimistic.  I believe his mom is coming up to stay so that will be great.

More later!  Love to everyone.

Friday, March 11, 2011 at 9:49pm

David got to Georgetown hospital and is in the Emergency room where they are looking after him and we are waiting for a room to open up.

He is talking faintly and mostly (99% of the time)  lucid but very weak and thin. He is in no pain.  We are having lots of kisses, cuddles and hand-holding. The surgeons are not going to operate as his odds of getting through surgery are almost non-existent at this point.  They are doing another CT scan to try to find why he has the abdominal pain and why he cant eat anything.  It could be peritonitis, fluid, infection of the fluid - who knows....  Regardless, they are going to keep running antibiotics and put in a central line so he can get nutrition.  My concern there is how we get the meds into him.

If we pump him full of calories and antibiotics for a few days, then he has a better chance of coping with whatever needs to be done next.  Hopefully the scan will give us a better idea of what is going on and the liver doc, the hematologist and all the others will check in and give their two cents worth.  (All these docs are so bloody young!)

There is a strange balance between pessimism and optimism.  His spleen is hugely enlarged (but has been for a few years).  His liver is a total mess (but has also been for a few years).  He has small clots in the liver and a larger clot in the portal vein (that is being treated with Lovenox) and there are a bunch of other issues in addition to the "whatever the hell is going on in the abdomen" thing.  We have "do not resuscitate" and "do not intubate" etc orders on him (his wishes) but at the same time if they need to do surgery I expect them to take reasonable and rational steps so it is a fine line making the right decisions.

I am back at the condo to nap for a few hours and Natalie is with him in the meantime.  Jenni drove all the way from Delaware to West Virginia and back again today and was an amazing help (I love having so many friends who are medically trained!).

David (and I) sends his love to everyone for all your support and caring.  I think we are doing the right things and I have high hopes so, fingers crossed.

Saturday, March 12, 2011 at 8:38am - - We have a diagnosis! (sort of)

Vanessa stayed with David until 2am and I took over - the room is nice, large, quiet and has a really comfy chair so I slept a little (hope Vanessa did too!).  They have (they think) figured out what is going on - there is severe colitis and he has a perforated bladder (hence the bladder infection and the air surrounding the bladder, which is causing the pain.)

They are, hopefully very soon, going to start putting nutrition through the iv and we are going to try a little food or Ensure as my greatest concern right now is how weak he is from no food for such a long time.  If we can build his strength up then they can do something about the bladder but obviously dont want to mess around with surgery at this time.

We have a bunch of specialists coming in to give their opinions so, knock wood, we now have a better understanding of what is going on if not how best to treat all this!

Thursday, March 17, 2011 at 12:12am - Wednesday Night Midnight - Somewhere between magic and a dream.

It has been a rollercoaster few days.  David is asleep finally on just the dilaudid drip (2mg/hour).  He has had no medications, no sleeping pills, no bolus shots of dilaudid at all!  I thought I would update the events of the last few days.

By Saturday afternoon at Georgetown they diagnosed that he had a massive bacterial infection of the blood, bladder and gut.  In addition there was air outside the bladder and between the ascites (water outside the tummy) and the skin which was what was causing the pain.  His legs and feet had horrible edema, high blood sugar levels and all the other issues he has been dealing with heroically for years.  (For most people platelets at 3 are deadly, so are blood sugar levels over 900).

They started running massive antibiotics but could not operate or do a tap due to the low platelets.  One minute they were positive, the next not.  We had every specialist possible through the door - surgeons, hematologists, liver docs, infectious disease docs, urologists etc.  The main team of docs and nurses were nothing short of superb and I have never seen such dedication and compassion (mind you, David instantly makes everyone love him - the nurse from City Hospital called every day, the nurses and docs at Georgetown were crying and hugging him etc).  All of them were giving different suggestions but none were positive. I started pushing to get intravenous feeding at least in him and we were running huge amounts of saline to give him hydration but the saline was just causing the belly to swell more and cause more pain.

The docs started running massive dilaudid injections but he was throwing up and had not eaten anything or drunk anything in 10 days.  By Sunday he was doped to the eyeballs and the pain was still unbearable.  Every so often he would have moments of lucidity.

He said "Make it stop" so we upped dosages to frighteningly dangerous levels of painkiller. 

He said "I've done this for you, I want to be with you forever but it's getting harder to keep fighting", which broke my heart. 

He said "I've loved you since the day I met you", which shattered my heart. 

He then said "Two days.  Only two days more then we stop." 

I agreed as every instant of his pain caused indescribable pain for those of us there.  I had to keep leaving the room and dont think I have ever wept as deeply so many times in my entire life.

Saturday evening was horrible.  He was so ill and the prognosis so bad, that I raced to the condo for a couple of hours sleep at about 4 am Sunday morning.  When I woke at about 6am Sunday I posted an update here that said we are nearly at the end.

When I arrived at the hospital, expecting him to be in the semi-coma, eyes rolled back, death-breathing condition of the night before, I was stunned.  He was sitting up in bed, talking away, felt a little hungry and even ate some scrambled eggs, drank orange juice, took his pills and kept them all down.  Suddenly, we were back in the game.  I immediately deleted the facebook post and we swung into "Right - let's kick some ass here!" mode.

As the docs all came in during the day, things seemed to be better.  The docs were a little more cautiously optimistic and we thought we might have a plan.  Reduce the steroids while trying to keep his platelets up.  Start intravenous feeding so we could get nutrition in him to regain some strength and weight (he weighs nothing).   Then, maybe we could do the tap and perhaps even do a scope to see what was going on in the colitis.  He kept waking up and we were having wonderful loving conversations.

Things looked great for a time.  His mom arrived and Natalie and Vanessa were there along with my family but David didnt want any fuss or visitors and he told us to discourage folks from traveling as we really didn't know from minute to minute what was happening.  Lorri even drove from Alabama and got as far as Roanoke but David said to just head home as we really thought things were turning around.

By Sunday evening, though, things started going back downhill again.  He would manage to eat a couple of bites of something or take some Ensure and his pills but then, a couple of hours later, he would start being sick, which caused more pain. We still had very high hopes though as things, in general, looked up. 

On Monday lunchtime a large group of the doctors came in.  They said that things didn't look good and it was time to consider options.  The platelets were dropping still (no surgery), the edema, ascites and infection precluded a tap to reduce the swelling as that would simply spread the infection further.  There antibiotics were not reaching the places they needed to as there was not sufficient circulation and getting this stuff moving is very tough at the best of times.

We had long talks all day and by the evening he said, unequivocally, "Enough".  No more pain, no more constant injections and draws and discomfort.  Lots of crying, lots of tears, lots of huge meltdowns and lots and lots of love.  The docs said we should contact Hospice and start making some decisions, which we did by late that night.  He was floating in and out of consciousness, (eyes rolled back, looking terrible) and when he was compos mentis, said to the docs that he wanted to come home to WV.  They asked if he wanted to go to a Hospice or home and he said that he wanted to come home and just be with me and Vanessa and Natalie and Martha.  (No offense to anyone but he was firm in this - he didnt want noise, fuss, or too many people and we had enough to move him and do whatever needed to be done without too many folks involved - none of us are running on much sleep at this point).  The docs and Hospice of the Eastern Panhandle (who are beyond amazing) swept into action.  We stopped all the intravenous feeding, all the pills, all the drugs, all the saline and kept the lowest dose of the steroid and a ton of dilauded which they set up through a constant drip of very high dosages with a button to burst a massive dose into him when it got unbearable.  Tuesday night I spent alone with him, crying and holding him.

By Tuesday morning, our bed had been moved over and a hospital bed with materials was set up by it.  Natalie, Vanessa, Val, Cliff, Julia and Martha all headed back up to WV and David and i were supposed to leave in the ambulance at 11am.

At 10:45, all the docs and nurses came into the room (most of them were crying) to say that they thought that he was so ill (he was comatose at this point and doing the dying breath thing - one gasping breath every 8 - 10 seconds or so), that the odds of him dying en route in the ambulance were about 50% - 75% and that they could not, in good conscience recommend this.  They said he would probably die in the next two hours.  At this point I was numb and devastated.  I decided to sit and think for a while and, after condolences and hugs, they all left the room.   Tears were rolling down my face.  I put my arms around him and talked softly, told him how much he was loved and cried. 

About half an hour later his eyes snapped open and he said, completely clearly "What's going on?"  "Where am I?"  "This is Georgetown isnt it?".   I raced out into the hallway and dragged the head doc and the nurses back in the room who stood there, utterly thunderstruck and dumbfounded.  (I could hear commotion in the hallways as more of the docs and nurses came racing back and could hear the words "miracle" start being used in the hallway)

The social worker and the palliative care doctor carefully started to explain that they were going to send him home to WV but that he could, well, he could......

"Honey, they think there is a real chance that you will die in the ambulance on the way home", I said bluntly (we dont mince words with each other).

"What are the other options?" he asked.

"You can die here or you can die at home - or possibly on the way home" I replied.

"Those are the only options huh?" he asked with a grin. 

Then, addressing the head doctor (all of whom were staring at him in amazement with their mouths open), he asked "Well, come on....what is my diagnosis".

They couldn't speak so I rattled off everything that had been going on and David responded "West Virginia - so long as you are with me".

At that point there was a huge amount of running around as the docs and everyone tried to start setting this all up again.

At this point, the head nurse, who adored David, came in the room to see this miracle and David announced, to even more shock.  "I'm hungry.  I really want french fries".  I said "I'll go and get them" and he said "No, you said you were staying with me."  He then looked at the nurse and said "You wouldnt want me to die on an empty stomach??!"  He then started making jokes, chatting and what, for me 60 seconds previously been heartbreak and wrenching tears, became guffaws of laughter.

At this point the head nurse called out, "I'm taking break, take over, I'll be back" and raced out of the room to return 10 minutes later with a plate of french fries, which he promptly devoured.

About an hour later, he slipped back into what we now call "Scary, Dying Breathing"  and two hours later an ambulance arrived and we brought him back to WV.  The dilaudid drip stopped working in the ambulance and, because it was locked as it is a heavy drug, there was supposedly no way to fix it or get it delivering drugs to him for the pain.  The ambulance guy (CMT?) tried to get it going, we called Hospice and Georgetown and they couldnt help but they did let slip that there was a special code with would allow access control although not enable me to open the box or access the line but they could not give that code to me but could give it to the Hospice people once we reached home.  That was  not acceptable for me for him to go two hours without painkillers so within 10 minutes I had hacked the thing to force it to blow out the air bubble by blasting a bolus through the line.

We got David home and set him up in bed.  The Hospice nurses came and set everything up and were wonderful. He was completely out of it and his breath was getting worse and worse.  I honestly thought that last night would be it so lay with him, cuddled him, talked to him and said reassuring things.  "You're home, you can let go, we love you" etc.

I must have fallen asleep around 2am but at 4am this morning he woke up, demanded a cup of coffee and we had Jethro Tull blasting at full volume through the house (I totally didn't care that this woke up the whole house (and probably the neighbors) – all that matters is David’s comfort and wishes and anything he wants, he gets!) 

Through the day he has drunk lots of liquids, water, soy milk, apple juice, a glass of scotch and a small sip of good tequila.  He has eaten small bites throughout the day and his color is good.  His pain is way down, his belly is less distended and he is completely in the moment.

He is still going – organizing books, updating facebook, updating his wishes and giving me instructions, listing what he wants given to whom and just, in general, being extraordinary.  His strength and will to live have been mindblowing.

Today we have had the kind of day that two people rarely get and have said to each other the things that need to be said. Words of love, words of apology for actions done or undone or for words said or left unsaid.

Most beautifully, he said that being with me yesterday and today are somewhere between magic and a dream.

I don’t know how much longer he has, hours or days, but each second is precious in spite of the fact that I have had about 4 hours sleep in the last 5 days and haven’t left his side for long for the last two weeks.

Around 10pm he started to fade and I read him to sleep, without having to give him any extra boosts of painkiller at all today.  I know that this is almost certainly that boost of energy that terminal patients sometimes experience at the very end and that we may only have minutes or hours but deep down there is still that little voice of hope.  Since stopping all medications and all measures yesterday, he has been more alive than he has been in weeks.  "What if?????" that little voice whispers.

If he is the same tomorrow as he was today (if we even get to tomorrow), part of me is so tempted to ask the nurses tomorrow to do one last blood draw, just to check.  Just to check his platelet count and blood sugar and vitals.  Just to confirm that I am delusional and just exhausted.  Just to confirm that there is no hope.

I don't know anymore.  Things have been so up and down and this doesn't even feel real any more.  All I do know is that he is right about one thing.  "Today has been been somewhere between magic and a dream."

I love you all.

Ian

Friday, March 18, 2011 at 5:12am - Sleeping and no pain

I am not going to give any more unnecessary details in these posts as I want everyone to immediately visualize the tall, beautiful, wonderful, quirky man that we all know and love when you think of him.

Yesterday was a quieter day.  The hospice folks came by and we decided to up the amount of dilaudid to keep him comfortable and add some valium to the mix to stop him from being agitated.

Natalie originally had to leave as she has grad school but stayed the the night again and I am so glad she did.  She is one of David's oldest friends and he loves her and for me, she is a rock and I couldn't function without little talks with her every so often to give me strength.

I had about 3 hours sleep (a good night) and held his hand all night.  He squeezes and still, in spite of enough drugs that if we divided it among all of us would down all of us instantly, opens his eyes and whispers "I love you" to me.

His heart and his will are so strong the but the rest of him is very weak.  His sisters arrived in the area very late last night so will come by this morning to visit. 

I love you all,  Ian

David and I lay and cuddled together most of the day. His mom, sisters, my family and Natalie and Vanessa were with him throughout. That afternoon, once everyone had left the room and just as I left to get a cup of tea, he took a last breath and died.

Sunday, March 20, 2011 at 7:57am - Obituary and Wake Notice

David Michael Womack 1965 - 2011

David Michael Womack, artist, philosopher, and “renaissance man” died Friday, March 18th at age 45 at his home in Martinsburg, West Virginia surrounded by those he loved. Born and raised in Huntsville AL., as an adult David traveled the country and world, living in many places including Mobile AL, Silver Spring MD and most recently, the District of Columbia, Palm Springs CA and Martinsburg, WV. Blessed with a brilliant mind and quirky sense of humor he was always armed with a joke (or a well placed zinger).

Although he referred to himself as a misanthropic curmudgeon, David truly never met a stranger he did not want to get to know better and he was beloved by everyone with whom he came in contact. David was a passionate, life-long learner with varied talents and interests including pottery, fiber-arts, sculpting, writing, and cooking. An eclectic reader, David could usually be found curled up with yet another obscure book on art, philosophy, history, or social theory. Even at the end of his life David was organizing the myriad of books he still hoped to read. David spent much of his life working to achieve social justice for Lesbian, Gay, Bisexual, and Transgendered people. David worked for many years at the Human Rights Campaign prior to his retirement (in 2008) to focus on his health. Over his lifetime he supported many non-profit organizations focused on the arts, civil and human rights, and providing services to those in need.

David is survived by his partner of 6 years, Ian Gibson-Smith of Martinsburg, WV; his mother, Mrs. Martha Delaney of Huntsville AL; his sisters Mrs. Lisa East and Mrs. Holly Snow of Huntsville AL; his niece Samantha East of Salt Lake City Utah; his husband’s parents – Clifford William Smith and Valerie Smith and his sister-in-law, Julia Lam and her two sons, Collin and Duncan Lam from Shepherdstown, WV. David was preceded in death by his stepfather, Mr. Frank Delaney. David will be remembered by his many, many friends around the world.

There will be a wake in Martinsburg, WV on Saturday, March 26 from 2pm until 6pm and a memorial in Huntsville at a later date in April. In lieu of flowers, David requested that his friends consider donating blood regularly as he benefited from that precious gift on many occasions. Memorial contributions may be made to Hospice of the Panhandle, 122 Waverly Court, Martinsburg, West Virginia, 25403 or the IanThom Foundation, 39 Stagshead Court, Martinsburg, WV 25404.