Visions/Home

Hospital time is very slow. Because of regular checks, prods and procedures, I was interrupted often and it's really hard to sleep as streams of nurses, various doctors and residents make their way though. You lay out of time, in a daze. I was very lucky and had a roommate from VT, who had had a whipple operation by Dr Fernandez. Having a thoughtful and kind man with a related experience in the next bed, made my journey much easier.

The surgery had cut deep into my abdomen; and my skilled team of doctors did the job in just over 2 hours. Amazing!

The healing takes a LOT longer.

My surgeon, Dr Carlos Fernandez-del Castillo gave me a great report and a detailed account of the procedure... the highlight being that it was the best possible outcome: they found the tumor much smaller than they expected (a 2cm shriveled prune like growth) and in an excellent position to be radiated through a small cone. Everything else went well, and now only time will tell...

I'll discuss my thoughts on that in the next post...

By Tuesday, my pain management involved eating 8mg of dilaudid every 3 or 4 hours...leaving me pain free as long as my midriff didn't move in any direction...any move would result in jabs of pain that were uncomfortable but manageable...more drugs would numb all pain, but the narcotic effect would be unworkable...

As it was, by Monday night I was having pretty wild hallucinations... they persisted until today when I was able to reduce my dose by about a third...

After I got home and took my next round of medication, I rested while Monika made some food. Among the many strange things that came my way... I saw Deb's dog Buddy laying on the floor near me (he died March 2), but instead of his flowing golden fur, it was replaced with the iridescent red and brown feather plumage of our rooster... that was some look!

When I closed my eyes, I saw an awkward, young amateur Jewish comedian who wanted to put on an act for me. With his fro and unbuttoned print shirt and chains, he implored me to watch but I didn't want to, so I opened my eyes to get rid of the vision...when I closed them to check, he was still there so I opened my eyes again, but this time just he disappeared, the background around him stayed in my sight with just a cutout of his shape missing... eventually I was able to avoid the show.

Trust me it ain't easy being sick... you should have seen that shirt!

I'm so happy to be home...

Groggy, but on my way home...

I'm going home today!!!

Probably by early afternoon, my dad will come get me, pick up tons of my pain meds and drive me home. I'm on heavy opiates, and my stomach area is really tender even when I'm drugged. I'm groggy and can hallucinate just by closing my eyes... "on demand"

I'll post more when I start to get more comfortable and coherent, and when I'm ready for visits at home... It will take me a while to figure stuff out around comfort, diet, sleeping etc...

I'm looking at about 10 days of pain and heavy medications before things get incrementally easier...

HOME!!!!

Zapped - then zipped...

This is what David's new bling looks like! As Dave proudly showed it off to his sister's family yesterday, the sight of it made his niece faint. She was promptly brought down to the emergency room, where it was determined she was fine.

Yesterday morning Dave's epidural also started to act up, so he had another struggle with Pain, his old nemesis. After that it was pretty smooth all day, and he is getting closer to his old self by the hour. His corner of the hospital room is starting to look like a flower shop! Sweet smells and beautiful colors that remind us of spring!

This morning when I spoke with him he was starting to eat solid food. Dry toast never tasted so good.... He is also starting to peruse seed catalogues, with plans for the garden, and he now wants me to bring him his laptop so that he can resume his reading of blogs and news. This is a great sign, since he felt too weak to do any of that before. The docs are beginning to wean him off intravenous painkillers. Hopefully this will go smoothly.

There are too many of you to thank individually, for the unflagging kindness, love and generosity extended to us by our network of family, friends and kind strangers. You have supported us through these most difficult months of our lives, and many were the times when the solace and strength from all of you was the only thing that kept us from falling apart. You are all in my thoughts, and my heart is full of gratitude.

Peace and love,

Monika

Doing well, but tired and aching....

Dave spent the morning battling severe pains, since his epidural had been placed about three inches too low. And once the spiral of pain had started, it took quite an arsenal of medications to get it under control. By noon, however, he was beginning to feel fine, he managed to sit up in a straight-backed chair, and even walk a lapse around the ward. While he is progressing nicely, there are at times severe relapses of pain, and since he sleeps poorly he is prone to dozing off without warning. Due to these factors he feels it would be best to hold off on visiting him at the hospital, and instead wait until he is at home. That said, he is already turning into his old self, making jokes with the nurses, and befriending his fellow patient.

A decent night and one less tube

Dave had a relatively good night and called a bit ago sounding like the Dave we know and love. They took a tube out of his nose but he remains on an epidural for more time. He isn't ready for visitors or to answer any emails but we will let you know when he is. I'm printing out your posts to send to the hospital. Thanks! Deb

SUCCESS!!!

Deb here, just back from the hospital where I saw Dave in the recovery room along with his Dad and Monika. Here's the scoop:

Dave's surgery was a success. He got operated on at around 9 this morning and the doctor called Monika and said that everything went perfectly...the gallbladder is out, meaning he doesn't need a stent anymore, the tumor had grown very small, and the radiation went well. All things went perfectly!

Dave will be in the hospital for about 5-6 days. He does not have his computer yet but we will bring it to him when he is feeling ready for it.

He was dopily delighted to hear the good news from Monika and is going to go to his room within the hour.

Send all good wishes here and they will be relayed to Dave. Thanks to everyone for the good thoughts, prayers, and energy sent to the Prifti househould this week. We will keep you posted! Debora

Finally...

I't's the day before Friday's operation. I have regained my focus and am eager to enter this last big phase of my treatment.

I'm taking this day to rest, be mindful, and spend time with Monika. We'll probably play scrabble (I'll lose), then walk the dog in the woods. I'll go to yoga one last time for a while, then we'll have a simple meal and be early to bed.

Tomorrow I get there at 6 am to be prepped for the 8 am operation. Unless they find bad things and the operation ends fast, I should be done before 11. I will be staying at MGH for 5 days, before I get plopped on the sofa at home like a skinny version of Jabba the Hut for a few more weeks of healing.

There is so much riding on this procedure that it forces me to be reflective of the entire arc of my illness over the past 10 months. Apart from the difficulty of the treatments and the upheaval of our daily lives, I am certainly not the same person I was back in May; before I dropped 25 % of my old body with a healthy diet, and cast off probably another 50% of my old mind, attitudes and approach to life. This part of the illness has been a blessing, and leaves me with a model for how I hope to keep living if I'm able to get past this disease. I have shed a LOT of my old self, and am living a much more paced, appreciative and present life.

I'm SO ready to finally get this operation done...

We will try and get information on how it went, room info, etc... posted tomorrow night...

Thank You for all the supportive thoughts!

New Stent

I spent Thursday at MGH getting my stent replaced. It was successful. The doctor said it went very smoothly, taking a total of about seven minutes to complete. The other 5 hours I spent there consisted mostly of me laying in a pre-op bed waiting for my doctors to finish a much more difficult and time consuming procedure before they got to me.

Spending so long sitting in the ward, watching the constant flow of patients being brought in, prepped, and sent out for their procedures, reinforced the positive feelings I've had about all the care I've gotten at Mass General. In almost a year of weekly (sometimes daily) interactions at MGH, I have not had a single negative experience. The nurses across the board have been skillful and thoughtful, and the layers of oversight and professionalism on display has been impressive.

The thing that bothers me the most is being stuck with needles. Every visit requires at least one or two blood tests or IV's being set. I disliked needles before I got this illness, and it has now grown to dread and loathing. Yesterday I got hit three times...

On March 26th, I'll finally get the intraoperative radiation operation. I have two weeks to strengthen myself physically and mentally, and, hopefully, two weeks without needles...

Never a dull moment...

Now that the operation was postponed, the statute of limitations has run out on the temporary stent that I have in my bile duct. They last for 3 months, and the old one ran out last week, which is why we originally had the operation scheduled for the 3rd.

Monday, I started to have steady abdominal pain in my stent area, and was sent in for blood tests. I will have the stent replaced at MGH on Thursday afternoon. In the meantime, I'm home pumped up on pain meds... Money poorly spent by BCBS for a procedure that the operation would have made irrelevant.

Last week was disappointing. It was a difficult emotional transition to shift from the focused optimism I was carrying into the surgery, to the shock of the loss of coverage and cancellation of the surgery. I have quickly re-focused my concentration on the 26th and have been bolstered tremendously by the out pouring of support by my people in my time of need. When I realized that we could have raised all the money for the operation through the generosity of our family and friends, it took my breath away and allowed me to look past the set back, and ahead again to the operation. I felt like George Bailey at the end of "It's a Wonderful Life"...very rich in every way. And the fact that Monika's appeal was successful, and I won't need to tap that support is even better.

We are blessed to live in such a community as this, and to have you all in our lives. THANK YOU for your continued support.

I doubt I'd still be in this without you all behind me...

Things are breaking our way...

We just got a call from Blue Cross stating that they have reversed their decision and will now pay for the procedure!

It is as if we are finally able to let out a breath that we've been holding for three days... we are so relieved...

My Doctors had appealed again on March 3rd and their request was rejected. Monika then spent 14 hours on Wednesday compiling data, talking to doctors, insurance representatives, and then writing an impressive appeal. It seems to have done the trick!

Yesterday, we also re-scheduled the operation for March 26, so now I have a date to re-focus on, without the stress of how we would fund the $100,000 operation.

So many friends near and far have come forward with offers of time and treasure to get us through this; we are truly humbled by all of your love and support.

THANK YOU!

Update...

Today was a difficult day. We are still reeling from the last minute cancelation of the operation, and the uncertainty of what happens next.

Blue Cross/Blue Shield rejected my claim, and Monika has been spending the day compiling data and studies supplied by my doctors, and is writing a comprehensive appeal as we begin to fight this. Monika was told by BC/BS that this procedure is not considered effective, but we have learned that it was covered until October 2009 when they changed their policies.

After much discussion, we have instructed my doctors to reschedule the operation as soon as possible. They said it would be in April, but there is a chance that March 26th may work; so we are waiting for final word on the date. We decided to go forward even if all our appeals fail, because this represents my only/best chance to get cured of this disease.

We will cross the bridge of fund raising only if we have no alternative. I am deeply troubled by the thought of imposing on family, friends and community. Hopefully the coverage will come through...

Yesterday, as the denial of coverage and cancellation of the operation unfolded, Buddy, the 15 year old dog that lives with us (with our friend Deb) began to fail rapidly and died peacefully with Deb last night. He had a great life and was very old and fragile, but his passing added to an already surreal and stressful day.

Now I need to regroup and regain focus as my next goal gets pushed out a bit. I thought I would be in a hospital room by now, beginning my recovery from the operation, but instead I have to wait, and focus on strengthening my body and mind, and keep eating brussels sprouts and yams and taking tons of supplements.

I will post information on the appeals as I get more information.

Thank you for all your support and kind words...

Cancelled

I am NOT having the operation tomorrow.

At midday today, I got a call from my radiologist that Blue Cross would not cover my operation. We spent the afternoon working with the doctors to try and get through an emergency appeal, but they couldn't make it happen in time for Wednesday.

The out of pocket cost to us would be in the hundreds of thousands of dollars so we need to get the coverage approved first. My surgeon said he has done 120 of these and they've all been covered, so we are all very frustrated.

We will go forward with the appeals process and hopefully reschedule soon.

Needless to say we are not happy, but this is the situation, so now we deal with it...