I just had appointments with the surgeon and radiation doctors. All visual fine, the next pet scan to be performed mid April and appointments with both.
I basically eat everything as long as it does not have hot spice, bread is a no, no.
The pet scan came clean. My next appointment is mid January with both the Radiation Oncologist and the Surgeon. I feel good, not to sound like James Brown. The usual side effects still linger, poor saliva, hard time swallowing, dry mouth, strange taste, and occasionally a knock, like my heart beat on my right ear.
My next post will be mid January.
Just wanted to post that I am in good health, my last pet-scan was good, and my next one is in September. I am planing to visit Chicago for 6 days in July. I am looking forward to it. Have a wonderful summer.
Yesterday I saw the surgeon who gave me a clean bill of health. I should see him again in May. He asked that when I see the Radiation Oncologist in mid March, I should have a pet scan done.
I feel good. Still very little saliva, and some times, I get one hick up out of the blue, but just one.
I cannot believe that in a few weeks, it will be two years since my diagnosis. Luckily I found it early.
Thanks again to all my friends and family who have helped and supported me during this ordeal.
I just had a Pet Scan on Friday, October 17th and the results were negative for cancer. What a relieve! Still minimal saliva. Very sensitive to cold, it's like my body cannot heat up, or hold heat. A little tense on the neck area where the surgery took place. Tomorrow I see the surgeon and Thursday I get my teeth cleaned. Next week the Radiation Oncologist.
The end of July was my last posting. I was starting Evoxac, all moisture producing glands in my body started producing moisture, OK, but on day 4 I wake up with a red eye. I stopped taking it and the eye cleared. I am still not 100% on taking it again. I can manage with the little saliva I have.
I spent a week upstate New York and had a great time.
Back to medical issues, about a month ago, I started to hear a knocking in my right ear, mostly at nights when I try to fall asleep. Went to see Dr. ENT and he could not see anything abnormal, and he recommended I do saline nose sprays to keep the area clean, it worked, two days of nose spraying got the knocking out of my ears.
My next Pet Scan is scheduled for Oct 17th. Dental cleaning on the 23rd. 
I have decided to try a saliva inducing medication, which I started today. After consultations with my Radiation Oncologist and my Primary, I have a one month supply of Evoxac. Today I have taken three, and I do feel my mouth with more moisture. Check it out on Google, specially the side effects, a trip! I am just giving it a try, hope it works, acupuncture did not. I will continue threw out this treatment.
I am very amazed at the energy I have, yes I do get tired. It feels like I am on automatic pilot.
Sorry to miss the 5th, but the 13th will do. No appointments this past month. I still find that eating is a pain. Not the pleasant enjoyable event it used to be. Not only the lack of saliva, but the tongue's pushing food down my throat is not there. I have to keep reminding myself that I cannot take such large bites. Food must be moist, and some food burns. I have also noticed that if I bite my lip or tongue, it does not heal unless I apply "Oragel", the saliva's healing action is not there. Hey! I am not complaining, it beats the alternative.
Here is a shot of me on the ferry to Governor's Island, beautiful place. Also one of the four waterfalls installed in the New York City's water ways. It looks better in the picture. 
Yes I am trying to grow my hair long. I hear gray is the new blond. Who knew?
All is medically well. Still no saliva, but so, so taste! I have learned a new way of eating, sashimi is the easiest and tastes the best. I can enjoy a glass of vino, 50/50 with water, it's the only way I can enjoy the vino. And that happens maybe once a month. Vanilla choco chip w/cookie dough is my favorite ice cream. I am reducing the milkshakes to one a day from two. I feel great.
Well, it's been one month since my last update. Just got the results from my last Pet Scan (4/25) and all is good. I have appointments with the Surgeon, Radiation Oncologist and ENT all on May 21, a FULL day at the doctor's, to say the least. Eating is still a job, a hard job, I do not think it will get any better. Some food I can taste, other food just swallows easy. I am currently fluctuating between 175 & 180 lbs.
Till next month. Now to watch Antiques Road Show.
Most is well in this camp. I have a Pet Scan scheduled for mid April, and appointments with Radiation Oncologist and Surgeon in May. Saliva seems like it wants to make a comeback, it's funny, there are moments that I feel my mouth wet, and not from the water bottle that is now my best friend. Bread is still my worst friend. Taste is hard to describe, some things taste about the same, others completely different.
Currently I am in Florida dealing with the passing of my father. May he rest in peace, I love you Papi.
I have a Pet Scan scheduled for April 25, a dental cleaning on the 21st. I have appointments with the Surgeon and Radiation Oncologist on May 21 to review the Pet Scan results. It's all looking great. It's amazing.
I just joined a gym, and plan to swim every morning, and try to build some muscle on these skinny bones. LOL I am also looking forward to seeing the Cherry Blossoms in DC this Spring.
Best to all and thanks for your good thoughts and encouragement.
It has been one year since being diagnosed with Scuamus Cell Carcenoma. Changes in my life, yes, I don't have or make saliva, automatic for most of you. I have lost most of my taste buds, I taste things, but not the same as before, boy, do I miss sugar. It's all relative. I'm happy and thankful to be here.
First of all, let me wish you all a Healthy, Healthy, and Healthy New Year.
I saw my Radiation Oncologist On Jan 3rd, all is well, and my next appointment with the surgeon on February 20th and the Radiation Oncologist in April. I have stopped taking the MucinexDM, it dryes my Mucositis, and also the little saliva I have. There are moments that I realize my mouth is wet, now more often than before. I think the acupuncture might be working. I was told that I should start feeling more mouth wetness than before. Right now I am dry as a desert. I am very thankful to the positive results I have accomplished thanks to the doctors, nurses, technicians and staff from Beth Israel Hospital in New York City. Thank you guys!
I started listing out of pocket expenses, for tax purpose, $8,600. which includes, my co-pays, meds, and transportation. I am working on total expenses including the covered. I am guessing close to $100k. Maybe next posting.
Today I had an 8AM appointment with my surgeon, to review the results of my pet scam of December 7th. He found that I was doing very good and I set an appointment for March 19th. A friend of my mother who has lack of saliva, but not from radiation, recommended the drug Salagen, my doctor was not impressed by the drug. It also could damage the liver, and mine is not too strong. On January 3rd I will see the Radiation Oncologist.
I feel good and very lucky on how well I have recuperated from this adventure. Tomorrow I have my acupuncture. It's difficult to tell if it is working. I just have to have faith and just do what needs to be done. Today I say The Little Mermaid, The Musical. A wonderful Disney production. Thanks Joe.
I just had the Pet Scan on Dec. 7th, the results show no sign of cancer. I will see the surgeon tomorrow and promise I will post an update. Today was the THANC Thyroid, Head and Neck Cancer Support group Holiday get together, great food and company. Thanks Jackie.
I feel guilty for not posting a thing in the last month. I have been very busy getting ready for the holidays. I have had 5 acupuncture treatments, one a week, I do not notice any change on my saliva. I will continue for the time being. Work is very busy. I eat more and more, I basically eat everything as long as it is not spicy hot. No significant weight increase or decrease, I guess this is good.
My next appointment with my surgeon is Dec. 7th, I will also get a Pet-Scan that morning. I just spent the weekend at my sister's place in Delaware and she took this one of many pictures of me. 
And for those of you with lead stomachs, here is a picture of my first acupuncture appointment on October 18th. OUCH!
And this one she just sent, it was taken with her camera.
I will make an effort to update every week or two.
Tomorrow I go for my first acupuncture session. I am not that afraid off the needles, but exited at the possibility that I could start generating more saliva, which will make eating a more pleasurable task. I will post comments, and maybe pictures.
A friend, and also cancer survivor made me a very delicious cold avocado soup, thanks Mark.
Friday I see the ulcer doctor. Monday I get my teeth cleaned. Oh!, I forgot, Sunday there is an Alzheimer's 3 mile walk that I plan to attend.
Wednesday I had a CAT Scan done and a later appointment with my surgeon. The CAT came out clean, and he asked I have a PET Scan done in two months when I will see him again. It is very encouraging.
On the food department, I keep eating anything and everything I can tolerate. I have never thrown away so much food. You order or buy something and then I does not go down as easy or tasty as you thought, what can I do, I feel bad throwing away food. One very tasty and filling solution is Cold Sesame Noddles, not spicy. I love them.
I will keep posting comments and experiences once or twice a month. I still find that eating is a very hard job to do, and I mean a JOB and you don't get paid for it. This is because of the lack of saliva, I have to eat wet food, soups are good, but how many soups can you eat in one day. I am able to eat a full Burger King Whopper, and I ask for extra tomato which ads liquid to the burger and I don't have to supplement the saliva by drinking water. Taste buds are very diferent from before radiation, I try to eat something new every day. I cannot taste sugar, which I used to love.
Before the treatment started, I my weight was 200 pounds, now I am back to my adolescent 160 pounds. Personally, I feel I need 10 to 15 more pounds, which I will gain, but I don't want 200 again.
Friday I had my first post-op appointment. Everything is fine. The large bandage was replaced with a thin 1/16" tape over the incision which is crazy-glued shut, the dissolving stitches were placed internally, I was instructed that once this tape fell off, I could remove the crazy glue with some alcohol pads I was given. Once the crazy glue is off, I should have sun screen on the scar. It's about 4" long. I am debating to post a picture of it or not. The Dr. asked that I see him again in one month. I made the appointment for Sept.28. Tuesday, 8/28 I have the SPOHNC Head and Neck Support Group meeting. Wednesday I decided not to go to work and celebrate my 52nd having lunch with a dear co-worker friend, and after lunch hit the Metropolitan Museum, I am playing diner by ear.
Yesterday as planned, a biopsy was performed of one of my right side lymph nodes, and it came back negative for cancer. The peg tube was also removed. I should see the doctor on Friday to determine the follow up protocol, I guess tests every 3 or 6 months.
I just heard from the hospital, the procedure is scheduled for 11AM, I need to check in at 9AM. No food or water after 3AM. I really am looking forward to having the peg tube removed. My next posting should be Tuesday.
Today I received the results of the PET Scan. One of my lymph nodes on my right side shows a small cyst that has a 5% chance of having active cancer cells. The doctor recommended that this cyst be removed and a biopsy done while I am on the operating room, if it has active cancer cells, all the lymph nodes of the right side will be removed. If it turns out negative, then close the incision and I will be clear. The surgery has been scheduled for Monday, Aug. 20th at Beth Israel Hospital. I do not know what time it will happen, they will call me Friday and tell me when to show up on Monday. Loly will be there with me. Another procedure that will be done will be the removal of the Peg (feeding) Tube that was installed back on April 2nd. I will not miss the tube.
I cannot believe that it's been five months since I started treatment.
Today I had the 3 month after radiation PET Scan. This should determine if there is any cancer cells still lurking around, and if they are brave to be there, they will be taken out on Monday, Aug. 20th. I hope there is none. I will find this out on Wednesday when I meet the Doctor with Loly. My friend Claire Worley came with me for the scan and after not eating anything since midnight last night, we went for a quick lunch. I got home around 1:30 PM and past out, I just woke up. The Valium they give you to calm you down, knocked me out.
This date is significant to me, the day I started eating food through the mouth. What a trip! It's like learning from scratch. Well the lack of saliva is the most mind blowing. When you have salivary glands, your body sends the right amount of saliva to your mouth. My gland is out on strike, therefore whatever I place in my mouth, needs to have the liquid, if not, I need to feed the liquid to make it go down smoothly. Too much liquid, it all rushes down my throat, I have figured out that about 1/3 of a gulp is good.
Now I am waiting to have a Pet Scan on August 13th and I should find out the 15th I there is any cancer left that needs removal via surgery. I hope none is left.
Every day I eat more and feel better. Thanks for all your good thoughts and prayers.
The surgeon took a look at the CAT Scan and after checking my neck, gave me two options:
We could have surgery now removing the right side lymph nodes, or we could wait the 12 weeks after the end of my radiation treatment, to have a PET Scan done, (a more comprehensive and accurate test) that will tell if the spots in the CAT Scan is cancer or scar tissue. We, with the doctors approval agreed to have the PET Scan performed on August 10th and we have also tentatively scheduled surgery for August 20th, if the PET Scan comes positive for cancer, surgery will happen 10 days later and not 2 months, if the PET Scan shows negative for cancer, then we just cancel the surgery.
Now I just have to focus on getting better.
On Wednesday, we met with Dr. Hu, Radiologist and based on the CAT Scan done last Friday, he thinks the surgeon, Dr. Urkin will recommend surgery, we meet with Dr. Urkin on this coming Wednesday. Not the news I was waiting for.
Tomorrow I meet the radiologist to find out the result of the CAT Scan I had on Friday, this should tell me if I need surgery, or not. I'm going to be a nervous wreck all day tomorrow. Well lets see, nothing I can do, I will just have to wait.
I seem not to have energy, I cannot get enough sleep, feel always tired, and it still hurts when I try to swallow. I am also tired of this. I know, it's part of the recuperation steps. Today I had a Cat Scan to help determine if I will need surgery, Oh! I hope not. I should know Wednesday, June 20th.
Last Wednesday after my Doctors' appointment my sister took me to her house to spend a long weekend with the family (mom & dad are there for Alicia's HS graduation). As you can expect, some days were good and some were not so good. Lots of pain in my throat. Now I am home, and just working on getting and feeling better so I can go back to work.
After staying in all day medicating myself, boy do I like this medication!, I am looking forward a long weekend up at the Cabin. Mouth pain, burn, hot, caliente, I think I figured it out. Will let you know Tuesday, no web, email, cable, or computer up there.
On your left, is Loly, picnicking at Madison Square Park, under two metal trees, yes they are metal. Loly came up for my support group and my appointment with the Chemo doctor.
Oh! I just got my laptop back from work today.
But the pain stays, based on the latest figure I got from the doctors, this painful process should end in 2 to 3 weeks. My mouth feels its on fire.
Saturday Michael and I headed upstate, I have been under very heavy throat pain, since the treatments ended, the pain just gets stronger, it even hurts to swallow water. I also took my laptop to work to have some program installed so I can work from home, so guys I am using Michael's computer and these updates will not be as often as before. Maybe I will get it back before the weekend. This week I have for Tuesday, the support group, and the Oncologist, Wednesday I have an appointment with the radiation Dr. The Pain does not get any less. I also cannot wait to start chewing. Please be patient!
My last treatment! But as the last couple of days, I feel very lousy. I am very tired. No calls please, it really hurts to speak. Claire you are a darling, I could not have made it without your help. I love you, and George.
You have no idea how I feel. Happy, ready to come out of my skin, I also feel more pain than I did before, I have to UP the good drugs. I want to celebrate, but I don't want to be disappointed. I have been told that my current side effects should be the same for the next 3 to 4 weeks, improving slowly. Thanks for not calling last night, and I will ask the same favor for tonight. Sorry but the tongue hurts too much. I just fed my peg and will be taking a sleeping pill. Thanks again for your encouraging messages. I really, really appreciate them.
Be very careful for what you wish for. Today my next to last treatment I had a Dr. Appointment, my throat has been the worse ever, I was winning off the pain killers too fast, my bad!. I go downstairs, basement to find out that the radiation machine got sick. If it is fixed by tomorrow, Thursday will then be my last day. Guys, thanks a million for your comments, emails and calls, but tonight, no calls please, it really hurts to speak.
Thanks
First and foremost, I have to wish my mother, Doňa Lola, Mami, un muy Feliz Dia De Las Madres. Yo se que es muy dificil tu estando en la Florida mientras que yo aqui en Nueva York.
I took a well deserved brake on my postings, I was getting home after the radiation, so tired that all I wanted was to hide under the covers in the fetal position. I just spent my second weekend upstate. The weather was even better than last.
I have only three more radiation treatments left. I will be done on Wednesday, May 16th. Don't know if or how to celebrate. Today, we woke up early and were ready for a 8AM drive up and down hills, seeing the occasional wild turkey, raccoon, porky pine, etc. Well today were greeted by the complete milking staff for the farm at the end of Dingle Hill Road. 
Boy are these cows big. Lets say about 50 cows being brought out to pasture by this adorable Border Collie. Here are some shots for your viewing pleasure. I just have to say that them cows do not look that big when you drive by one of their herds and go MUU!!. 
A weekend upstate New York, was maybe the solution for this lay ed back Sunday.
Day twenty five! ten more to go. "ALMOST THERE"!
The days after chemo are usually very ruff, hidden pain, you get tired by just opening your eyes, and many times you just want to quit!, and I don't mean it, just a flashback from one of the many videos I saw pre-treatment.
Now I just want to think of being upstate laying on the hammock. I have spent most of the day sleeping.
Closing posting for Friday, next posting will be Sunday, PM.
Have a wonderful Kentucky Derby Weekend.
On a scale of 1 , the least and 10 the most amount of pain, today was a "9" for me. Tired, hurt, tired, head ache, tired, I hate this, but then I think of the w/e upstate. it shoots to a bearable 5 and, visualizations helps you know how much, thank you Diane. I am taking your CD and I promise I will listen to the complete disk without interruptions, and I will let he machine pick up the call.
More to follow
I was so tired Monday, all day, I could not imagine waking up Tuesday morning, at 6'ish and taking a train to one hospital to get the Tuesday's radiation, and then walk to the other hospital to get the chemo for that date. Spending the night hydrating w/Loly by my side. Woke up through out the night. Well, all that liquid had to go somewhere, but I was ready to move out by the time Regis started at 9AM. I was discharged at 11AM then took a cab to the Radiation hospital (yesterday's first), had the radiation done, went to the drugstore to drop prescriptions for mouth sures. Took a well deserved nap longer than 2 hours. Later in the PM picked up the drugs and now updating the blog.
Michael head upstate last weekend, and brought the minivan from the dealer. I am looking forward on heading up this weekend. Just to seat on the porch and watch the wild animals do their thing. I have planted perennials and this is the year they will work for me, not many baskets this year. Maintenance free animals, sculptures, etc.
Well, I forgot to post last night, I was very tired yesterday afternoon after the radiation. Felt as usual, very dry, and was very very tired.
Tomorrow will update the two previous dates.
I cannot belive that tomorrow I will start my Fifth Week of Radiation. Total weeks Seven.
What a beautiful day in the city, my friend Steve stopped over and we went for a walk down 9th Avenue. The temperature is mid 60's with on and off sun. The Tribeca Film Festival is in full swing.
Oh! what a day! I had an early morning appointment with Dr. Culliney. My blood was checked and the levels are back to normal. My next and last chemo treatment will be held from May 1 to May 2. Daisy Palacios, Dr. Culliney's Clinical Nurse Specialist, checked my blood levels and we both agreed to go for the chemo. The first available date is Tuesday May 1. This also means that I will only have two chemo treatments, not three as originally thought. Not a big deal on the outcome. By the time I was leaving Daisy's office, my body went into a mayor lock-down. I felt that a train ran me over. I went downstairs for my radiation treatment and did not even get the saline rinse. I needed to lay in my bed and sleep. I called my counselor Marilyn, who I had a 3PM appointment, and cancelled. My body just could not give any more. I got home at 2PM, fed my peg, went to bed and woke up later at 5:30 after I am sure a well deserved nap. Now it is around 10PM and just woke again. My throat is still tender, but I can swallow water without pain. That is so good.
Today the radiation treatment went without a hitch. I took a leisurely walk across 14th street and basically window shopped to the west side, I stopped at "Havana Chelsey" Cuban restaurant in Chelsey I have been frequenting since I moved to NY, almost 30 years ago. Noris a very nice lady that works there and I consider her like my sister. We were both very happy to see each other and I was able to drink 1/2 a Materva, an Argentinian carbonated drink made from Mate, I think it's a root. I was able to swallow other than water.
Today is known as Matinee Day, also among many, Hump Day, Mid-week etc. Today happens to be the middle of my cancer treatment and also the moment when all the pain of this accumulating radiation just keeps doing it's job, just hammering the tumor and body with all this force. Thank God for Magic Mouthwash.
This morning Sister and I had many questions, and the hope that we could get some if not all of them answered. I went for my radiation at 12:00 noon, after which I got my mouth sprayed with saline solution, it really makes my mouth feel a little better. From there we tried to make an appointment with Dr, Culliney, the chemo doctor. We spoke with Ann Marie, his appointment specialist. I Also wanted to go to the support meeting that ran from 1:30 to 3:30. I also saw Bridget, the Nutritionist who asked if I could use her office to feed my peg. Bridget is so wonderful, of course, and I was left at her office with the privacy and cleanliness necessary for this operation. Loly and I headed to the support meeting. It is always good to meet new people, and more so if we have something in common. By the way, tomorrow, Wednesday, April 25 is my hump anniversary. My half way point. The meeting was very informative, and I handed out the business cards that I designed. They were taken very positively. After the support group ended, we headed to Dr. Culliney's office, to discover that an appointment has been set for this Friday at 11:45AM. I just hope I do not miss the protocoled 3 chemotherapy treatments scheduled. I guess I cannot do a thing until Friday.
Loly has been ,the air that keeps me alive, there are no words to express the gratitude I have for her support, strength, power, and love I get from her. Thank you my dear sister. I hope one day I can love you a fraction of the love you a giving me.
This morning I woke up my sister Loly, at 6;45 AM to head to the Union Square hospital for an 8AM Radiation treatment, which was taken and I was shipped to the 1st Ave & 16th St. Hospital for the preparations for Chemo. My friend Pat, a survivor who both of us met on my second opinion appointment, showed up and he hung out with us till about 2:45 I then got used to the hospital bed, we were advised that my chemo could no be performed today because my white blood cells count was not up to par. This was about 3PM and I just had my mind set for it, what a slap in the face. Well Mr. Farnos, call and make an appointment with the Doctor to seen when can we re-schedule. Loly made a special trip from Wilmington for this treatment, Let's do what needs to be done to remedy this situation.
Not very easy to explain, but the best way is, I have no energy. It hurts to breathe. I even fell asleep on the radiation table, I must have been snoring. Last week the nurses started spraying saline solution in my mouth right after radiation treatments. This refreshes my mouth in an inexplicable way. On my way down to radiation, I walked to Times Square to bump in to the "Naked Cowboy", he is a relatively new New York staple, always in Times Square, now that the weather is warming up, we will be seeing more and more of him.
Now here is today's portrait of myself at Union Square Park, it was a beautiful day, a little on the cold side. I hope I can get some z'z tonight. Thanks to all of you leaving comments. They are very much appreciated.
Today I felt like any energy I had, was sucked out off me. Don't remember if I mentioned before, but I go to bed at 11PM, 1/2 hour after taking my sleeping pill, but like clockwork, I wake up at 2AM and cannot fall back asleep after I wake up. I went to work early at 8AM but by 9 I needed to lay down, which I did at my job's medical office. I dosed off for about one hour, but had no energy at all. My managers ordered a car that took me to the hospital. Today I also requested pain killers, which took me for a hunt, no every pharmacy carries the kind prescribed. My friend Michael came with me for my radiation, and I rested in his apartment while he went for the "pain killer hunt", and found them! Thanks MJ. I hope that tonight I get enough sleep, and maybe go to work tomorrow.
Today I met with Ed from the IHT. We first went to my appointment with Dr. Culliney, my Chemotherapy doctor. At this point I discovered I had the wrong date for my next chemo treatments, the correct dates are April 23rd and May 14th. Leaving his office I dialed Loly to advise of new dates, she was just booking a trip to Dubai on April 22nd. Needless to say, she found someone else to go for her. Yesterday I mentioned my saliva is getting very thick, with the consistency of shewing gum, very hard to spit, and if I try to swallow, it sort of chokes me. Everyone at work tells me I look good, but boy, its not the way I feel. I called Pat, survivor friend I met at my second opinion appointment, and he was very helpful guiding me through this difficult time. I then went to get my radiation for the day, and Diane was a sweetheart and sprayed my mouth after the the treatment. Usually my mouth gets very dry after treatments. This is a welcome treat. THANKS !
Today is the beginning of week three, my mouth is very sore. It's getting difficult to swallow my own saliva, but I am committed to at least keep swallowing water, I cannot let the throat muscles take a rest. I designed some personal presentation cards which I printed myself. Not bad for a first timer. Tomorrow I have appointments with Dr. Culliney, Medical Oncologist and my usual radiation. Ed from the IHT will meet me at 1:30PM to hang with me. I am really looking forward catching up with him, too bad we cannot have another of out usual lunches like the ones we had at the IHT.
Today, Loly & Herb braved the terrible Nor'easter storm and came for a visit, and also brought me "Gatorade". They did not stay long, it was very dangerous driving with the rain, wind, etc. My friend Linda Matos was singing at "Dillons 54 Dinner Theater & Cabaret" at 6:30PM but mother nature don't want me to go, I feel lousy. I just want to curl under the comforter and sleep, something I am only doing 4 hours/day with sleeping pills.
Today I took prescriptions to drugstore, did some local shopping, Gatorade, sundries, and basically layed in bed listening to music. Very relaxing, no radiation, and also no food. It's all now via "the peg". My mouth is not getting better, the bite still biting! While walking down the street, in front of Sardis, saw this incredibly, I am sure expensive, automobile, a beauty! Tomorrow Loly and Herb might visit for the day, weather permitting. Maybe we will just hang out or go to a museum.
On the emotional front, this week has been very hard. I've realized no more eating for a month and a half or more. Of course, you just cannot do something, for your body to want to do it. I was also very sad at the loss of a very dear close friend to alcohol.
Today I met with Dr. Hu, Radiation Oncologist, to determine what to do about the fever. He as well as Dr. Culliney think I should not continue the Amisfostine. I agreed. My treatment went well. The mouth is getting very dry, taste is gone, and I have lost 3 lbs. I should be adding 3 cans of supplement/day. The goal, once I cannot eat, should be 7 cans/day. Today I did not taste this very interesting chicken spinach soup from a neighborhood eatery, also the roof is starting to get very raw, and hurting. Today I did the extra 3 cans of supplement.
Monday night was not the best night for me. I had 103 fever, which hung around till Tuesday. At the Hospital, Jill, Diane and Maria were very concern so was I, but the blood work was normal, x-rays, etc. Maybe the Amisfostine (trial). Tomorrow is another day.
Pink of fuchsia?
Here I am just before my 5th treatment, one week. Wesley who came with me to the appointment took this picture. I don't want to count the weeks to go. My stomach was still sore from my last night's sushi, plus my Fridays appointments are at 12Noon. Left the appointment around 2sh and walked up Park Avenue now heading to 32nd street, home of Corporate Counseling Associates where I will meet with Marilyn. Later tonight, I was blown way by my friend and neighbor CYNTHIA ENFIELD, who performed in a "Rocabaret", "My Brave Face", at Don't Tell Mama on 46th st. More performances April 12 @ 8:30 PM and April 14 at 5:00 PM.
After this vocal treat, I headed to my neighborhood trusted pizza place for a double pepperoni slice which I only had two bites and it tasted just like cardboard, smelled like peperoni, but it was cardboard, and not even tastee! Now writing this blog and making sure that I don't forget to clean the Peg, teeth and I better just do it, and not write it, it's too late, good night. Tomorrow the Visiting Nurse Service of New York will be here.
Here is Leo and 1/4 of me on a beautiful Thursday afternoon in Union Square
"La Pedrera" (MILÀ HOUSE), the chimneys on this building designed and built by Antoni Gaudi (1852-1926), resemble warriors. I posted a close up of these on March 13, 2007. It was a beautiful day in Barcelona, one of my favorite cities, I want to go back.
I have noticed that cold drink is hurting my teeth.
Bought an assortment of Gatorade "Orange", "Berry" and my fave "Glacier Freeze" (Windex). I like the taste of blue!
I have to flouride my teeth every night, for the rest of my life.
Radiation day three was spent on the phone, most of the morning, got 9 cases of 24 cans of Nutrition supplements. Today, Henry came with me to the treatment, I had to be re-tattooed, and x-rayed. I was on the table with the mask and puling on the weights for almost one hour, but you do what you got to do. We had a bite to eat and I want back home via work, and received a very warm happy welcome from my colleagues that were still there at 6PM. I plan to go to work tomorrow.
Loly and I jumped up at the 6:30AM wake up call to rush down to Beth Israel's Union Square facility for my first radiation zap!, left the hospital at 8:30AM, from there we walked to the 1st Ave & 16th St hospital where the Peg tube was to be inserted and the first of three chemo treatments was to start. Checked in, private room, no less!, 9:AM, and waited anxiously for an event time line. We found out that the Peg would be the first procedure (10-15 minutes) but the preparation would take longer. Frank (Mr Peg) stopped by my room and explained the procedure. They go through my mouth into the stomach and with a camera/flashlight do hickey they find the correct position to cut, and just like a plumber, snake the feeding tube. OH! guess what they found near the exit of the stomach. An ulcer! BINGO. I have to start playing the lottery. Frank mentioned that there might be some discomfort and that is what drugs are there. Twenty minutes after I was brought back to my room, the pain and discomfort started. We called the nurse and told them of my discomfort for which they gave me 3 units (not sure gr, mg, etc) of morphine and I waited. One half hour went by and nothing, same pain, to which we again called the nurse, who called the doctor and another 2 units were administered. As the second half hour ended, I started to feel clammy, and then I turn to Loly and said, I think I am going to faint. In my mind, [I went to the Pearly Gates and St. Peter said, "go back" to which I said "They don't want me in Hell"] and I woke up to a room full of medical personnel, and remember seeing a nurse in the back holding a syringe with a 3 or 4 inch needle, (Pulp Fiction)and someone said, he is OK. Simple, my blood pressure plummeted because of the morphine. "No fault." The Pearly gates episode was in my mind and I never lost consciousness.
Now it's 5PM and the chemotherapy starts for 3 hours, after which, I was then hydrated all evening through vein and peg, I was waking up to pee every 3 hours and must have peed 6 litters or more. The nurse was satisfied of my hydration.
Now its 6AM on Tuesday and I am up playing with the remote trying not to wake Loly up.
Liquid breakfast was served, it was supposed to be solid, but I drank it, and when the doctor walked by and saw liquid, insisted it should be solid and a second solid breakfast was served which a also swallowed. A 10AM we had a "learn how to work/clean the peg" meeting to which I had invited my best friends Wesley and Henry to attend, just in case I get to the point where I cannot handle and work my own peg, they can do it for me.
I was checked out around 12:30PM and walked to the Union Square hospital for my second radiation treatment. I was tired, worn out, but took the second radiation treatment and grabbed a cab to get home and get in bed to sleep. I was really, really really wasted.
Loly left for her Seder at Marsha's in Philadelphia, and I just curled in MY BED! And collapsed!
Some of the members of table 53, our host Tom, in Aqua
Below you can see our host Tom fulfilling one of his responsibilities with the Court.
Yet another look from our host
Here I am pictured with Marilyn Urraya, Counselor at Corporate Counseling Associates. Marilyn has been very helpful during my mood swings.
out OK. Then you lay on this table with a cradle for your head, the ceiling of this lab is a picture of this cherry blossom with blue skies in the background. The circle on top is part of the machine. This by itself helps calm you down subconsciously, considering this lab is in the basement of this hospital. The technicians place pillows under my knees, and I pull on these two handles. The mask, that was molded a few weeks ago, is then placed over my head and locked in place to immobilize the head and neck area. Lasers lights are then lined up from the mask's markings with the tattoos. Not very comfortable but I will do what it takes to get rid of this cancer. On this next picture, I am posing with Maria Machuca, RN of the 
Thanks Loly,
I Love You !
North view from 8th street up 7th avenue, 3/25/2007
Today my Dentist appointment was cancelled at the last minute. Tomorrow, Loly is coming for my simulation "dry run". This procedure matches the computer's predetermined targeted area generated from the x-rays, tattoos, mask, etc., to the actual body (me), laying on the table and making sure that it all lines up. Making this treatment as effective as computer/humanly possible. At least that's how I understand the procedure.
Today was my support group meeting
of SPOHNC. We heard a presentation by Dr. Stewart Fleishman on nutrition, a very detailed explanation on the right fats, proteins, and the importance of maintaining weight throughout the seven weeks of treatment.
Here I am with Jacqueline Mojica, Speech Pathologist, Head & Neck Institute, Beth Israel Medical Center. Oh! she also moderates the support group meetings. As part of the meeting, some of us were handed handed a DVD "Words To Live By" Patients helping other patients on their journey with head and neck cancer. Produced by THANC (Thyroid Head and Neck Cancer Foundation). This DVD is divided into 7 chapters, each topic looked at by, and described, by a cancer survivor in their hope that their stories help other patients. (I really recommend it, and do not mind having a viewing, let me know).
Jackie also showed me a few "swallowing exercises", because of the radiation, this is another one of the lovely side effects, that if I don't take care of now, I could have serious swallowing/throat problems later on in life.
Butterflies in my belly, not because of hunger, but just a little stressed. I am looking forward for tomorrow's support group at Beth Israel.
This was a second picture I wanted to post yesterday, but by a stroke of a key, the picture disappeared, and instead of frustrating myself trying to figure out how and why?, I figured I would post it today.
A tug boat Hackensack at Chelsey Piers.
Here is a picture I took today on my walk downtown, this one on the right is a brand new building that just opened in the last couple of weeks, very modern, great lines. It's located at 11th ave and 23rd st.
A week from tomorrow I start the Chemo and Radiation Therapy. This week I have a Support group on Tuesday, Dentist on Wednesday, and the Simulation on Thursday. I have started reading about the foods that I should eat during the treatments.
I am also getting nervous about the PEG Tube that will be attached to my stomach, but I look forward to it. I will be part of the "Collective", "The Borg"!
I took a well deserved break from the postings.
Two weeks from today my chemo and radiation starts.
It's been snowing all day, nasty and the web is accting up.
My mouth feels much better. I'll try to post a picture tomorrow.
This morning, my mouth felt, tender (delicate), well, it's got three holes that were not there yesterday in the morning! Filled my prescription for Fluoride, Amoxicillin, and picked up some Ensure. I don't want to risk the healing of the three extractions eating hard food too early.
Unrelated topic: I have noticed that I am loosing my patience with drugstore attendants, specially with "not smart ones".
Today I had the appointment with the hygienist, and later in the hospital, the dentist removed 3 pieces. Two on one side and one on the other. It is very important that the teeth that are left be in good condition, radiation weakens the teeth and from now on, I have to do nightly fluoride treatments to them.
Tomorrow I will have dental appointments all afternoon, first to finish the cleaning at my dentist office, and later at 5:30PM, I will pick up the "fluoride carriers" from Beth Israel's Oncology Department.
