Saturday, September 29, 2012

The Look of the Crypt Keeper!

Upon arriving home, I had lot's of appointments lined up. I had my Zelboraf drug ordered and ready to be sent the day after I got home. I saw my oncologist, had a blood transfusion, canceled my PET Scan to make way for emergency surgery on my detached retina. Yes, after seing Dr Hahn, it was definite that I had a detached retina, that was getting worse by the moment !- I was well on my way to permanent blindness! I started my Zelboraf pills - 2 in the morning and 2 in the evening - they are big enough to choke a horse! I'm very worried about the side effects of this drug and anytime I've been outside in the world, I'm covered head to toe in sunscreen, sun poncho, hat, scarf and gloves (thanks Clare!)

At a Denny's after my first meeting with Dr. Hahn,  Dan and I encountered the worst coustmer service ever!  I'm assuming it was my 'get up' that turned our waitress against us - in addition to the sun protective outfit,  I also had some wrap around sunglasses on under my real glasses, due to my dilated pupils from the exam . She took our order and that was the last we saw of her, at least around our table. She could be seen scrubbing every surface behind the counter at Denny's keeping her nose to the grindstone, so as not to have to look at us. We had to make do with other passing waitresses to check on our food, refill our drinks and give us our check. Dan actually complained to the management which is so unlike him. I can't help it if I look like a freak! I'm just frightened by the sun - and don't want to look like a pork cracklin'!

I had my eye operation on Tuesday September 18th, and after watching the full procedure video on You Tube the night before, I knew exactly what I was in for. I don't really suggest that a person watch an operation of what is going to be done to them the next day - but I was afraid they would have to take my eye out of my head to cinch it up in a silicone belt! I needed to know how that was done. It was gruesome to watch and it was exactly what my operation ended up being. The whites of my eyes were cut away from the Iris and pealed back like a grape,  Four sets of slits were made, upper, lower and on both sides in the muscle so that a thin silicone belt could slip through and cinch up my eye in a belt - tight.  The whites flapped back over in place and sewn to the iris - Well just good as new! Nothing like any images conjured by tales of frankenstein. It worked!

The laying on my left side for ten days was much better than having to lay face down - but still not much fun.

The thing that I find hard is that I feel SO impaired! This eye thing at the moment seems so much worse to me than having cancer. It makes it so impossible to function as a normal person. I don't feel like painting - being on the computer - doing collage - taking photos - reading - watching TV - driving - making music or just about anything else that keeps me entertained and distracted from my cancerous state. I find it very hard going. But I have to do my best to not let it get me down too far. My loving husband went out and got me a black eye patch that makes typing possible. I will test the waters to see if it will help make other activities possible. I hope so!

I posted a photo of how I now see things out of the eye that was operated on - to give an idea of what it's like to see through mismatched eyes; an eye that flat out doesn't work! Don't worry - I'm sure things will get better - in time, in time. Also just to let you all know I look better already - but my camera isn't uploading for me to put up better photos. I won't look like these photos forever!

I also posted through links, very gruesome - I MEAN GRUESOME - photos that shouldn't be looked at by the squeamish! All this will, in time turn to a normal looking - and I hope into a normally functioning eye!

I had two days ago, two 'Procedures' that were not fun - mainly painful as all get out! I screamed the whole way through and the doctor threatened to quit 3 times - but I told him I wasn't going to do a cleanse again and he had to keep going no matter how much I vocalized distress! We made it through an endoscopy and colonoscopy (one after the other) to find that I'm looking A-OK there! But what a drag! I suggest that every one that has to have one done to go completely under. It was awful!!!

To end that day, after I signed the discharge papers the discharge nurse rushed us out into the waiting room saying she had to walk us out to the car. We didn't drive and was waiting on a taxi - she stood over us complaining about how long it was taking and how she wanted to go home! Dan barked at her, saying she was making things difficult - she half apologized - but was so awful. I ended up complaining about her attitude to Duke. It was really uncalled for the way she treated us.

This photo is fine to look at. It is a facsimile of how I see out of my operated eye. It's safe to look at:

What I see out of my left eye.

Very Gruesome Photos! Beware - Do not look unless you can take it!
Large photo of very bloody eye!! Whites sewn on to Iris -Pupil overly dilated! Ugly! Very bloody! The Links below are gruesome - look at your own risk! 

Quasimodo - First day after!

Gruesome Eye 1
Gruesome Eye 2
Gruesome Eye 3
Gruesome Eye 4
Gruesome Eye 5
Gruesome Eye 6

How To Keep Up When Things Are Happening Too Fast!?

I don't know how I'm supposed to keep up with this blog when so many things are happening! It doesn't help either that I'm half blind, and my computer keyboard is wavy and has spots!

I was going to write a lengthy account of NYU's ER and my clinical trial dismissal - but now I think I'll try to keep the account on the shorter side, so I can be more current and relevant.

NYU's ER wasn't as horrific as I had thought it would be.  I got filtered out of the waiting room pretty quickly.  Though I did spend quite some time in the ER room -from 4:00PM to 11PM. I ended up having a CT scan and three eye exams by three different doctors. Very, very young doctors I might add; one women who looked like she was 22, and some 27ish year old males. All three hovered around me in a discussion over a sonogram one of the doctors did of my eye. To me the image was disturbing and it looked very much like a retinal detachment (pictured in a previous blog entry) - but the three doctor's collective opinion was that it was just loose floating vitreous. I was really lucky that my great friend Stacy came to the ER just to keep me company. That helped the experience to be a better one, since it had been a long time since I've seen her. With her there the ER faded into the background and if we'd had a beer in our hands it would have been just like old times! It didn't matter where we were, it was just great getting back together!

Earlier while I was waiting to be seen - I got a bit of great news from the trial people. Seems that the drug company said they would foot the bill of my expenses for the trial. I was so happy that I still had a chance at the trial. I had been told to go to see a dermatologist in the morning and that I would need to be at the clinic for the beginning of the test. Since the eye wasn't looking like a detachment - things were really looking up for me.

After a relaxing evening with Mike and Suki, I prepared to meet the next day. I took a car service into the city this time -  no chances were going to be taken with me falling over in the subway. The dermatologist was quick and saw nothing of interest, which was a good thing! Next I was off to the clinic. I walked the three blocks, and it was the first time I actually felt connected; that I was indeed in NY.  As soon as I got to the clinic, they ran the blood work through the tests. It turned out that I was very low on Hemoglobin. My reading was 8.7 ( By the time I got back home at was at 7) It's supposed to be between 12 and 14!  No wonder I was so slow, light-headed and faint! I was very anemic. The trial people wanted to arrange a blood transfusion on a Saturday. I was like, OK what ever it takes! I'm sure I'll feel better! Then I asked to make sure the drug company was footing the bill on the transfusion- and the trial girl went white, stopped what she was doing and ran out of the room. A few moments later everyone, including the doctor running the trial came in the room. There were some somber faces and heavy sighs.  I looked them over and said, "You're all here to tell me I can't be part of the trial! Right?!"  All eyes were cast to the floor, except for the doctors, who said, the transfusion wasn't going to be paid for by the trial. She went on to say, that they were sorry I had spent the time and money coming up to NY, but I should just go home and get care there. That was the end of it!  To say I was devastated, is an understatement. I had tried so hard, I mean SO HARD to do everything I could to be a part of that trial and it wasn't working out. I had to re-adjust my thinking into being happy that I had tried so hard; and now I knew for a fact that treatment at home was the best thing out there for me. I could put it all behind me because I knew I did everything I could to get two more years out of life, but failed.

I got on the 2nd Ave. bus, got out at 13th street, then began my search for a dark bar to cry in. The problem was it was too early, 2:00! All my favorites wouldn't open til 4! I searched out Life Cafe (Thinking it'd be open for lunch) - But, no, it's closed; and I thought I'd settle for one of these new Hooka Bar's - but YUCK! I couldn't see myself weeping next to a giant Hooka Pipe. I thought of Lucy's -  closed, and the old Odessa - closed;  but the diner part of Odessa was open. So, I sat in the front booth to watch the Avenue A'ers parade in front of me as I drank back my beer and let out some tears. I was thinking about how the east village really hadn't changed. Just the people were younger versions of the same people that were out and about when I was around. Replacements. Replacements with more money.

Stacy met me at Odessa, which made things so much better. After a beer and fries with gravy on the side - we sat in Tompkins Square Park. It was such a nice late afternoon. We met up with a great painter and friend, Santino, at the Indian food place on 1st ave that has all the chile peppers hanging down in peoples plates. At first I was a bit worried that it would be a bit overwhelming for me, in my anemic and blind state - but once we were seated it was just a lovely evening. I didn't want it to end - but Stacy was smart and made sure I didn't over extend myself, and we ended up having the best time, the three of us, in Stacy's car driving back to Brooklyn. Nothing replaces meaningful conversation!

Mike and Suki took such great care of me that night and the next day - and I had a few visitors come by - Clare Harmon, and Ken Schles. I was feeling fragile, and Mike kept filling me up with fresh vegetable juices - keeping me topped up on some much needed energy, and nutriments. I was very thankful to have such good friends!

Mike and I went out that night to meet up with Brian Turner and Ryan Martin at a great Thai place called Zaab-Elee. Wow! What a great place and what a great evening! That was one of the highlights most definitely! The food was out of this world and the company couldn't have been better! Thanks Mike, Brian and Ryan for a great NY moment!


Happy Times!!!!!

Hard to say Goodbye!

Sunday, September 16, 2012

I ♥ NY

Most all  my NY photos were taken from the inside of a car.

Day one:

Well, I don't really know where to begin with this one...For those of you who don't know, I tried sooooo incredibly hard to get into a clinical trial for Zelboraf with a MEK inhibitor. I had some big stumbling blocks on the way - like a brain tumor that had to be zapped, but I was so anxious about being part of the trial, nothing else seemed to matter. The brain tumor was just something that set me back by three weeks! I only saw it as a small obstacle! Once the tumor had been deemed stabilized (really it was gone) I had the green light to go to the trial's screening process. The Friday of Labor Day weekend I noticed that my peripheral vision had gone. I was at the fabric store in Durham getting items to finish off my sun proof ponchos and ducked into a dark Chinese restaurant. While slurping up my hot and sour soup I noticed the man sitting to my left had disappeared!  What?! I turned my head, and there he was wrangling his chop sticks like a pro. I turned back to my soup, and he disappeared again! I got on the phone to Durham Eye Center to try to get them to see me right away - but as it was getting late in the day they couldn't arrange it. They tried to set me up with an appointment in Raleigh that next Tuesday - Monday was Labor Day, and I was set to leave for NY on Wednesday. I knew I'd be seeing an opthomoligist appointed by the trial so I let it slide, keeping Tuesday for errand running.

I was happy to be staying with Suki Hawley and Mike Galinsky who took incredibly good care of me. I was picked up at the airport and visited with them and their two sweet kids that evening. I was super nervous about my appointment the next day - which was the first day of school for Fiona and Harper, that was nerve wrecking enough for Suki and Mike; and to add me into it, what a crazy Thursday it was going to be! I intended to go alone into the city for my appointment - but Suki said she would come with me after the kids were dropped off. Wow! I'm very grateful she did come.

I suppose all the travel and worry, the fast pace of the city, added with the heat and humidity just piled up on me - everything turned to slow motion. I got weaker and weaker with every step I took towards the Clinton/Washington subway station where I was to meet up with Suki. We took the G to the Metropolitan Station, and by that time I was gasping for air. It was hard for Suki to keep my pace because I was walking so slow. People blurred as they rushed past us. I'd done that ride years ago, over and over again; steps, tunnel, steps, long walk, steps, platform, train, steps, etc. But now it was just way too much for me. On the platform waiting for the L train I glazed over and told Suki to watch me. I shimmied against one of those tall stainless steel electrical boxes and just about went down. Thank god I had Suki to keep me on this side of this world. We made it on the train and all the way to Third Avenue, where it was our intention to take the bus to 34th Street. Outside on the corner looking at the huge city, I felt overwhelmed again and sought out a fire-hydrant that was sticking out the side of a drug store to sit on. While I sat - Suki dashed to get me some water. Again, Suki kept me on this side of blackness. Thank you Suki! I saw a banana waving in front of my face. A bite of it and a drink of water gave me strength to go on - but this time in a cab! I had turned into one giant glob of sweat!

I registered as a new paient at NYU Langone Medical Center and it took ages for me to settle down. I felt like mercury beads slowly coming back together in a Sci-Fi movie; after an hour I became  whole again. Suki stayed with me while the trial manager talked me through the process and walked me through the contract. I signed and initialed each page. They gave me an itinerary of appointments and I was ready and willing to do it all - anything I could do, so I could live longer with the inhibitor drug. I had mentioned my eye to them before I had arrived in NY, so they asked me about it. I told them my peripheral was going in and out and they wanted me to see an opthamologist right away.  This is where we hit our first snag. The trial opthamologist was out of town so the set me up with a Dr that would have cost me $1,400.00 out of pocket. He existed outside the trial approved physicians.

The trial manager sent a new person in to talk to me and pretty much said that the trial was going to be too expensive for me, and I should consider going back home. She said that I could go to the ER and have my eye checked out there to see if I had a detached retina (that would keep me out of the trial) and she was going to see if the drug company would foot the cost of all the trial.

I didn't like the sound of going to the NYU ER. Who wants to go to an ER?! I felt faint and was going to walk the three blocks but I didn't trust I could make it without Suki who had to get to a business meeting. So I waited for the bus. I climbed aboard and tried shoving my metrocard into the slot - but it had been covered with tape. The driver said to me, "Where have you been?" I said, "Away for six years! I'm going to the ER." He explained how I was to use the machines at the bus stop and get a receipt to show. Gawd! It took me forever to make my transaction. I turned around expecting the bus to be gone - but there he was patiently waiting for me. I rode the three blocks and he pointed out the ER entrance. New Yorkers are nice!

I'll write the next instalment while at the clinic tomorrow. I have a hemoglobin check, a talk with my Oncologist's PA about Zelboraf's side effects, a session with my cancer counselor, a moment with the Duke finance department, and an appointment with the Pre-Op team about Tuesday's surgery. Oh! And a phone call with my new eye surgeon!  It'll be a full day! Whew!

Saturday, September 15, 2012

Holy Crap! What Now?!!!!!

My visit to NYU ER - Oh, the good ol'times!

I thought I best get on with doing this blog, because so many things have happened, and now it looks like I'm going to be face down in a pillow 24/7 for 10 days straight (24/10)!
I have a detaching retina - and I was kinda OK about it - matter of fact, like, just get it fixed! Right? But now it looks like I might have to spend ten days face down after the operation as my detached retina heals. Only getting up 15 minutes at a time, each hour. This is a 'quite common' regime in the retinal healing process; though my eye surgeon made it all seem like a walk in the park. He also said that a Sceleral Buckel, a gas bubble, or vitreous replacement is used in repairing detached retinas. For me, the Dr. said it could be one, or a combination of those remedies listed; and it wouldn't be decided on, until he was able to get in there and see how bad it was.

Here's where it all went pear shaped!
I must admit, I looked on some internet forums to get an idea of what the post op healing process would be like, and Freaked!!! I'm still up the Freakland high-tower and will be there until someone gently talks me down. People on the forums were talking about having to lay face down with their head in one position for 10 days. That's looking into a pillow for ten days!  No reading, no computer, no watching TV, no sudden movements, no sitting upright for more than 15 minutes each hour. 45 min down/ 15 minutes up.  For ten days! No knitting, painting, no playing cards - just me and my new best friend, Pillow! It's just so dreadful to me! To me, it's worse than cancer! If I'm sitting up and facing the world, I can at least pretend that I'm normal - That's hard to do laying face down looking at a pillow. That is not a normal life! A pillow shouldn't be looked at that long - it's damaging! I can't stand the thought of doing nothing for ten days straight! How will I get through it? - Oh, the imaginary horror!!

I won't really know until after the surgery what my post op routine will be - but I can tell you this, other people out there in the world had to lay face down for ten days straight, un-drugged! That is my definition of hell and my new worst nightmare! I'm a fidget-er!  I have to be doing something! Always!

I was thinking I would leisurely write my blog over the next few days, but now I feel such pressure knowing I can't type while face down. I'm not supposed to strain my eyes. I'm not supposed to look at a computer! I was going to tell of my up and down roller coaster ride of being in NY, but I might just have to put that on the back burner. We'll see. I might feel like getting it together for tomorrow - I mean it's unbelievable all the things that happened! Good and Bad, and Ugly, really Ugly! And Good!

If any of you have had a detached retina repaired - please write to me and let me know it's not that big of a deal. And it's only ten days! Right!? And that I can lay still for that long. People get through hardships everyday - right! They get through it - right! Even if they have to look at a pillow for ten days. Right! I mean it, please write to me if you've had this problem!

I do want to say this before I go:
Love to all in NY, especially my host Mike Galinsky and Suki Hawley, who took such extra special care of me. Thank you! I couldn't have been there without their help. Please support them and their film Battle For Brooklyn at Dean Playground on Friday September 28th at 8PM!

I'll do my best to keep on writing.