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!

Amigos!

Happy Times!!!!!

Hard to say Goodbye!

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!

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.

LOVE!!!

The Money Pit Of Staying Alive

I saw the images side by side, and it seemed true, the brain tumor that had been a hot white glowing spot on my cerebellum had changed into black hole. What! Three weeks after radiosurgery and it's gone! I spread the news on FaceBook and got lots of cheers and hallelujahs, (thank you all!) but the best and funniest response that I got, one that made me double over with laughter, was from Ryan Martin.

Quote:

FUUUCK yes!!!!! This rules, but I do want to forward the idea of having surgery regardless, and putting in a diamond or emerald where the tumor was and have MTV document the procedure in their new reality spin-off show Pimp My Brain (hosted by Xzibit, of course)

This was so funny to me. It's had so much replay value in my little cancer world. I bring it up every time I have a chance. Thanks Ryan! Pimp My Brain! I wish I could!


So, what all this means (the disappearing Brain Met) is that I have the OK to go to NYC to see a Melanoma Specialist for a screening, that will hopefully allow me to take part of a clinical trial. This is great news! And terrifying news!

I'm scheduled for an appointment at 11am on September 6th. I don't know how many days I'll be there for the consultation, which includes many test, PET scans, CT, MRI's, blood test etc. If I pass these tests then I will return to NY on September 17th or so to begin the trial treatment. I will be there for 4 months, a long time to be away from home.

The main drug I'll be taking is the FDA approved Zelboraf. This drug kills cancer quick! It also has many side effects, too many to list, but one being photosensitivity. This is why, while I'm in NY, I'll be looking like a NY crazy! I will be covered head to toe, in whatever will keep the sun off  me. Otherwise I may blister up and get sent to the ER.

I'm making UPF/UV Sun Protectant ponchos. I'll also be wearing gloves, yes, in the summer! I do not want to walk around as one giant blister with a single hair. For some people, hair falls out if you get a fever while on the drug, and the sun induces fever.

The second drug is called a MEK inhibitor. This is the trial drug; it has been shown that this drug keeps the Zelboraf working. Zelboraf on its own works well for about 7months. After that the body get's imune to the drug's effects and the cancer comes back with a vengeance. So this MEK inhibitor keeps the Zelboraf working and people can get quite a few years in before going into the downward spiral to death. Who doesn't want to keep living longer?  Anyone?

I have to tell you all, that getting this close to a trial has been so incredibly hard. I've been turned down for about 40 trials because of my history with breast cancer. NYU is the only one that has considered taking me on.  It's all so confusing too, because to get the best chance out of life, I have to get care so far away from home (Thank God I love NY!). This means that I'll be out of state, and out of network, and I'll be responsible for all balance billing. What does that mean!?

I have tried so hard to find out how much this trial is going to cost me. I'm calling it 'The Money Pit of Staying Alive'. Air travel, housing cost in two cities, and the completely unknown cost of my medical needs. Ugh! I feel ill and I'm already ill!

 I had called Duke to get prices on PET's, CT's, and MRI's along with labs and ekg test. That was the easy part! But I couldn't get the same information from NYU, they didn't have the codes or the information of what tests I'd need. So, there's no way to know how much my responsibility will be.  I set up a consultation with a trial manager here at Duke thinking she might be able to shine the light on what my responsibility will be; and what I can expect. Her news was not good. She said, that I and my insurance company will be responsible for my standard of care. Which means everything except the un-approved drug. You would think that a clinical trial would pay for all testing and care by the drug company running the trial - but, NO. The drug company will only pay for the MEK and a few tests regarding the MEK only. I do know that I'll need 5 PET's (around $6,000.00 each), and the trial will only pay for one. The rest is up to my insurance company and me. And, I have been informed by the clinical trial manager in NY, as well as the benefits listed in my minuscule State insurance, that insurance companies, mine included, Will Not Pay for Any Experimental Treatment. It's just so damn confusing! I just wanted a few little things....

I want to stay alive and I want to know how much it'll cost me.


I want to thank everyone who has donated in the past and those who will donate in the future. I don't know how we will manage. I fear we're getting in over our heads!

La femme au masque de fer

Time is warped for me. It goes slow, so slow, I don't know how or when I will ever arrive at the moment I feel I need to be in. The events that I want to take place seem so far away and unobtainable.

I'm just waiting for time to pass. Waiting again, to know what my future holds. I have to be careful with the time I have. I don't ever want to wish it away, but sometimes it's hard living in the moment. 

My Radiosurgery went well. It didn't take that long really. 45 minutes clamped on the table. What made the experience difficult, was that the face mask that had been made for me in the previous week had shrunk about 2 sizes when it was allowed to cool completely. I thought I had been prepared for the experience, I thought I knew what the mask would feel like. I took two lorazepam to keep me calm while on the table; I thought that would have been enough preparation, but once I was in the radiosurgery room I felt rushed. Everything was done at breakneck speed. My belongings had been handed off and piled up in a chair in the corner as I was led to the table. As I laid down, the back part of the mask cradled my head. Within the first second my head hit the back,  the front part of the mask was placed over my face and tightened, clamping me to the table. I was shocked at how tight it was! Had it been any tighter I would've had the marks of the mesh on my face, it reminded me of a very long day in fishnet stockings; bloody cross-marks cut into skin. 

Another problem I had was that my left nostril came up against a cross-mark in the mesh blocking off my air supply on that side. I felt panic and wanted very much to reposition myself for better air inhalation - but that was not a possibility. There was absolutely no wiggle room! I wanted to kick and thrash about, but I didn't. I tried to gulp down air through my mouth when I realized that in the rush I had forgotten to take a swig of water or coat my lips with balm. The technicians had run behind protective glass as soon as I was bound in position, and through the loudspeaker I was informed that we were now waiting for the doctor to arrive! What?! I was fighting hard not to scream, I had to take a step back into calmness. I had to keep my eyes shut and visualise myself in some other place, somewhere floating in a mass of open darkness.

I then heard voices announcing that the doctor had arrived and felt someone kneading my arm while leaning in close to say I was doing great and we would be done soon. I recognized the voice. It was the voice of the doctor who had his hands roving up and down my arm. I said to him, "If anyone is looking for the perfect form of torture;  this is it!" I think I remember him letting out a half-hearted chuckle; but I can't be sure.

The process finally began! The table revolved around in different postions pausing for blasts of loud sound. I could sort of see through the mesh, the lazer beams lining up as the table came to a stop. As far as the actual radiation went, I could feel no change, no pain, no feeling other that the tight mask holding me in place. I couldn't quite get the rhythm of mouth breathing; it caused more dryness and made me need to swallow or wet my lips, which kept me in a cycle of of unrest and pure panic. If I couldn't swallow properly, could I drown if it went down the wrong way?

The table had remained still for quite few minutes, and I heard a small crowd of steps surround me. It was announced we were finished and I could feel the clamps being loosened. I shot up, catching my breath and feeling like I had just been rescued from being buried alive. Thank God!!

I was led out of the room and back to Dan who had been patiently waiting. I was a bit disoriented from the experience, and we discussed what our next move should be. Our choices were to take a taxi home, call a friend to pick us up, or take a taxi to the garage where our car was being fixed. Yes, the day before while out doing errands, the starter on our car had broken in half! Right in the middle of grocery shopping and laundry! I know it was a bit silly to go pick the car up at that moment, but we had plans for the next day, which was Dan's birthday. We got home safely and I slept into the evening.

The following day was lovely. Presents for Dan in the morning, breakfast, and then for lunch we went out to play a game of pool! Dan won! Then a nice evening watching "Norm"

So now I'm just waiting. At the end of three weeks we will be able to see if my brain tumor has stabilized, and if so, I can then make arrangements to see a melanoma specialist at the NYU Langone Medical Center. In the meantime, I'm painting, playing music and watching The Norm Show with Dan and Glen.

Thank you to all that have been supporting me, you all are always in my thoughts!

Cancer On My Mind

Yes, Literally! A 4mm spot has appeared in my Cerebellum! I have been trying desperately to get into a Clinical Trial for weeks and weeks- and it seems like every step of the way I've had something come up that looks like it will knock me out right off the bat. It seemed like Tampa and Philly were the only trials coming along nicely, but I went over the trial managers head at Tampa while she was on vacation and talked directly to the drug company. After reviewing my case they decided I wouldn't be a good candidate. I was holding out for a trial in Philly - but the Philly trial wanted something that was easy to biopsy. I have cancer deep in the cavity of my chest, lungs and possibly in my small intestine. I also have a small lump on my arm, so I went to the clinic to have it biopsied. It was benign, Hooray?*~##@*! But this time I wanted it to be cancer- because it was a requirement to get something biopsied to get on the trial!

Anyway, after the biopsy I was chatting with my Doctor about how I'd been feeling - tired, clumsy, overheated- (driving around without air conditioning) and I've even been dropping things as well. My typing skills have gone way down the pan. My doctor's words were 'Uh Ho!' and, he scheduled me for a Brain MRI.
I thought nothing of it at the time. I ran right out to fax some papers over to NYU thinking I'll be in NY in a few weeks! My oncologist had told me he wanted me to go under the care of Dr Anna Pavlick @ NYU, as she is a melanoma specialist. So while I'm out faxing NYU some green-light papers - Dr Morse is emailing me that I have a 4mm Brain Tumor. You can see how this puts a damper on my plan!

Today I had to have head mask made for me out of plastic mesh. I had been freaking out about it all day - the hot plastic was then laid on my face and pushed around until it formed to my features. I then laid there until it hardened. I felt trapped!!!! Then a damn FLY started landing on me, dancing around on my legs and then buzzing around my vice-gripped face. GET IT OFF ME!!!!

What I had been fearing for the last few days, was indeed horrible! Thank God I had my Rooster by my side making jokes and reading me his hospital observation poetry!

This also sums up the way I felt -

That last line should be -"Are You Caught Forever By The Curse Of The MRI"

I go in to have my brain box zapped on Tuesday the 24th! YIKES!

I'll let everyone know how it goes!

On a much better note I have a NEW Tape out called, Moon Mountain by me, Letha Rodman Melchior, on the great Label Called

ROBERT & LEOPOLD

I am so happy to have these works out in the world - working on this collection gave me something to look forward to and to keep my mind from going into dark places. 

Thank you to you Ryan Martin for making it happen.

Please get yours at Robert and Leopolds website.

There are so many fantastic artists on that label, and I am honored to be among them!

Full on War!

As you know, if you've been following this blog, my breast cancer seems to be in remission - and that has been a great relief. But, the rest of my body is still deep in the trenches of war, doing it's best to hold the fort. Since my last operation on March 12th, a bit of cancer that is 1mm bigger than the last bit that was extracted has grown in it's place; and in addition there are new spots on my lungs lower lobe, and it is also likely cancer has grown in my small intestine. It just wasn't as defined as the other spots. There are also some lumps under my skin, one below my elbow and one above my left knee. They just didn't make it into the frame of the PET, so they are inconclusive lumps. I have to keep a watchful eye on them.


I have spent the last two weeks diligently calling every clinical trial I could get numbers for. I had made it my job to not take no for an answer. I would not give up looking even though I kept getting turned down or "excluded" from these trials over and over again because of my history of breast cancer. 27 of the 30 trials could not hear my boobs cries of victory over breast cancer, and turned their backs on me. I have the chance to join only three. One in Philly, one in Tampa and one in NY. I still have hoops to jump through for each one of these trials and I don't know which one will be The One that I get 100% accepted into.

I'm incredibly frightened by the thought of leaving my home and my hospital. I'm so happy with my team here and the new cancer center is something out of the future, it's just stunning. Tears welled up as I shook 'Ol' Doc Onc's' hand. I felt I wanted to hang on to his limb and climb up to the safety around his neck and look down on the uncharted waters that are about to swell up and pull me in. I don't think he'd understand that I was only trying to cling to the things I'm familiar with. I don't want to leave my care here at Duke - but he said that what Duke has to offer me at this point is a poor relation to what I can get at these other facilities. Earlier I freaked him out by asking, "What if I did nothing? How long would I last?" He just about fell out of his chair. What if you did nothing?!!!!" You can't do that!!!!" I suppose I was just trying to suss out how quickly my disease would advance if I didn't do any kind of treatment. He said a year or there abouts. I need more time than that. I don't want to leave my beautiful wonderful husband, my sweet little bird (who is naughty and bites). I don't want to leave my friends and memories. I don't want to miss out on what everyone is doing.  I would miss checking into facebook! I have to do one of these trials.

With taking these combo trial drugs I can easily squeeze out another two years or maybe even more.  I'll have side effects, such as photosensitivity (great for looking out on that beautiful Tampa Bay Sun!) The feeling of bruised feet and achey joints. If I think back, I suppose I had it worse during my other treatments.

The rest of this week I'll be trying to get all the forms, fill them out, cross my t's and dot my i's, and see what the luck of the draw is. I don't know where I'll end up.

Living with uncertainty is difficult enough - but when cancer takes away the things you know best and trades it out for something you don't know at all - it really shakes you up.


I'll keep you all posted.

Love,
Letha