jacquesusa's Cancer Blog

April 22, 2008

Chapter 5 WE HAVE LIFT OFF!!!

Views: 187

Well, i finally can say i started my radiation. I felt prepared and ready to forge ahead.
The first big question i had was answered. Would i get sick from the amaphostine? Well no i didn’t. The doc gave me a script for Zofran which i understand is some serious anti nausea pills which i take 2 hours before the daily amaphostine injection. Appartently it did the trick. I did feel slightly queazy about 3 hours later so i took a second one and that did the trick. I spent the day trying to figure out if i could feel any symptoms of radiation. I think i now have some dry mouth but so far so good.

This afternoon, i went back for my second radiation and amaphostine. Same thing felt fine, though a bit borderline by the time dinner came around.

I decided that locking in a 2:30pm radiation daily appointment would be best. That way at least i can get a couple of hours work done in the morning and then i have the rest of the day and evening to just rest up. My neck feels a little hot and my throat dry but those are the only symptoms so far.

By the way when i picked up the Zofran i saw the bill for 30 pills and thought it was a typo.

$1,130.00! Thank God my insurance covered it. My out of pocket, zero.

By the way in will try to write about my Health insurance plan which has been awesome. I have my own HSA health savings account that i can contribute $3000.00/yr to and it’s tax deductible like an IRA. The health insurance is a high deductible insurance premium, where i am responsible for the first $5600.00 then i am covered 100%. I’ve reached my deductible and now i have zero out of pocket. My premium is about $150/mo. Last year since i didn’t have cancer i never came close to meeting my deductible but i did save tons of money by not spending $500/mo on the regular health insurance.

Tomorrow it’s back for radiation #3. 27 sessions to go!

April 17, 2008

Chapter 4

Views: 239

What a busy couple of weeks!

Following a very sore throat from the new left tonsil surgery on March 28th, i finally got my 3rd opinion before starting treatment.

On Friday April 4th, i drove into NYC and got my long anticipated appointment at Sloan Kettering with a neck cancer specialist.

The treatment offered there was basically the same as at Stony Brook Hospital except that they recommended also chemo.

I consulted with my oncologist at Stony Brook regarding the variances in approaches, and even had Stony Brook Doc have a consult with the doc at sloan to make sure all were on the same page.

After agonizing over a few days on where to go, i decided on Stony Brook. Stony Brook’s technology is just as good, it’s only 30 miles from where i live as opposed to 85 miles to the city, and the atmosphere at the hospital is actually a lot more friendly and less institutional feeling. And considering the cancer i am facing, I am not convinced that in my case, Sloan would give me better treatment.

Just as my throat started to feel better, i had my 2 upper wisdom teeth pulled on Monday April 7th. Didn’t hurt nearly as bad as i thought, though i did bleed for 3 days, changing the gauze in my mouth several times a day. And leaving some Godfather movie like blood stains on my pillow during the night!

Friday April 11th, was a sad day, marking the one year anniversary of my father’s passing.
However I called Stony Brook and confirmed that i was ready when they were. So they called me in, rechecked that my mask fit ok, and now i am scheduled for radiation simulation tomorrow, with the actual radiation starting on Monday April 21st. Although radiation is the treatment, the chemo option is still on the table.

I feel mentally ready and prepared for what is ahead. Although i still dread the unknown radiation pain and damage that i will undoubtedly suffer, i did find inspiration in a special person i met over the weekend at a “Support the Troops” event. Lance Cpl. Ian Lennon was there. He had fought in Iraq and had been severely injured in 2003. The extent of his injuries were so far reaching, that i won’t describe them to you. All i will say, that this hero who paid a high price for defending our country inspired me greatly. No matter how painful my therapy will be, it will pale in comparison to what this man went through, still does to this day and will probably for the rest of his life.

It was an honor to meet this man, and I thanked him for his service. I prayed for him, and I will think of him everyday, especially in my darkest hours.

Starting Monday, i will take a picture a day and post it, to document the progressive changes to my neck, of the 6 weeks of radiation.

Carpe Diem!

March 31, 2008

Chapter 3

Views: 374

Friday morning I showed up at 9am at Peconic Bay Medical Center Hospital and checked in. By 10:30 i was being rolled in to surgery. Started talking to the surgeons, joking about TV’s SCRUBS, next thing i remember was waking up with a sore throat. My wife drove me home by 1:30pm. Slept the rest of the day. My throat is sore but the Hydrocodone syrup works well. Back to a diet of warm cream of wheat and ‘Cuties’ those chocolate vanilla ice cream sandwiches.

Now i’m just waiting for the results of the tonsil biopsy and planning for my wisdom teeth to be pulled. At least it’s a little reprieve from the start of the radiation. Yeah it’s more pain for my mouth but hey, i figure it’s a sort of boot camp prep for the upcoming hell i am bracing myself for.

From adversity comes strength!
Carpe Diem!

March 25, 2008

Chapter 2

Views: 384

Since my operation nearly 7 weeks ago, so much has happened. I have talked to friends, family and relatives, a priest, God, searched my soul several times a day and had doctor appointments almost daily.

Following surgery, my ENT doc surgeon who removed my lymph nodes had referred me to the local radiation oncology practice in my town. When i was told by my surgeon i needed to have follow up with ‘radiation’ treatment i naively thought to myself that it would be a couple of sessions perhaps and that they would target the area of the cancerous lymph nodes.

After an hour and half meeting with the radiation oncologist, i learned that it was 6 weeks of treatments, 5 days a week for a total of about 6000 Rads. I would lose my salivary glands, possibly my vocal chords, have sore throats for months, lose 30 pounds, need a feeding tube, and not have a guarantee of a cure. If i did nothing she could not tell me the difference in probability of the outcome. My whole neck, throat, nasal and esophagus would be targeted. I was horrified and to me this was a carpet bombing approach to attack a cancer that still might or might not be there. I swore to my self that i would take my chances then and wait to see if the cancer returned rather than bombard myself preemptively.

I consulted with my cousin and some friends who pushed me to get another opinion. A friend of mine whose wife had radiation for her breast cancer spoke highly of the head of oncology at Stony Brook University Hospital. I agreed to the consultation, though i had already made up my mind that unless anything drastically different was proposed and someone could demonstrate to me the clear benefits and probabilities of a cure that i would take my chances with doing nothing and just wait and get checked every few months.

Stony Brook University Hospital, is a highly regarded research and medical facility. As i walked through the medical campus, I Immediately realized that this place was in a different league. This was no longer the resources of a few private practitioners with some radiation equipment. This was a big time state of the art facility, several buildings, space age equipment with staff, doctors etc…

The doctor successfully burst my i’ll-wait-and-do-nothing-attitude, and convinced me beyond a shadow of a doubt that radiation was imperative and without it, the cancer was likely to return within 2 years and possibly in an area that would not be treatable. Also he assured me that though the radiation would be aggressive there were ways to reduce collateral damage, such as Amaphostine injections to protect my salivary glands, and generous use of pain medication as needed. My heart sunk, i realized that there was no escaping radiation, my nice and cosy plan to do nothing was no longer realistic. This cancer thing is real, and i will have to face it. On the positive side, i knew that if radiation was to be the treatment, this was definitely the place, where they were on the cutting edge.

In the past several weeks, i have had my radiation mask fitted, had tests done, a new mri, the big simulation test, and lastly a higher precision pet scan all in preparation for the eventual start of radiation. I was supposed to start the radiation this past monday, however i needed a couple more weeks to finish some projects i was working on in my business. When i spoke to the oncologist he told me it is customary to start around 6 weeks after surgery but in my case a couple of extra weeks would be acceptable. Especially since, the latest pet scan revealed some possible activity in my remaining left tonsil, that showed a possible ‘hot spot’. I was sent back to my ENT who then agreed that before any rad treatment, the tonsil had to come out. So now i have my reprieve. Surgery to remove my left tonsil is scheduled for Friday morning. It could be, though unlikely, the primary source of my cancer. If it was, i guess it would be good news of sorts, and the radiation therapy would be modified somewhat to address it.
So a massive sore throat is awaiting me Friday and the story continues to unfold.

By the way as i read the stories of what so many of you on this blog have gone through, i feel totally humbled by your courage and ordeals. The purpose for documenting what is happening to me, is mostly to give a play by play of the emotions and new realities that come in to play as i learn to accept my cancer.

To be continued….

March 23, 2008

Chapter 1

Views: 444

On this Easter morning 2008, I have decided to begin a diary of my life’s entry into the world of cancer.

I will start by summing up what has happened so far, as my journey into this unchartered territory is still only beginning. I plan to post regular updates as i begin radiation in the next week or so.

I am a non-smoking, very occasional light drinking, 48 year old white male. 5’8” and currently weighing 178lbs.

THE FIRST SIGNS:
Last summer one day i noticed my right lymph node under my neck was hard and swollen. Having been bitten by deer ticks a few weeks earlier, i thought that it might be the beginning of lymes disease.l b I went to the doctor, had numerous blood tests and all showed negative for lymes or any related tick born disease.

Then i was referred to a Ear Nose Throat guy, and he proceeded to check it out and give me 2 consecutive Fine needle aspiration biopsies. They came back as ‘inconclusive’ the tissue was ‘lymphoid’. Recommendation come back in a few months for a checkup or surgery. With no pain i went back to the ENT doc in November. The lymph node was still swollen but had not changed in size or hardness. A full body PET scan was ordered, which first had to be cleared by insurance. The PET Scan was done in January. It showed that my lymph node was a ‘hot spot’ on the pictures, which i was told represents ‘unusual metabolic activity’ in that area and could be cancer. But also it might not be. My ENT doc called me to his office and layed out the The Plan: remove the swollen lymph node, do a on the spot biopsy.

Scenario #1 If it’s not cancer, just close up the incision, i’d go home from the hospital that night.

Scenario#2 If it is cancer and it’s lymphoma, close up the incision. i’d go home that night and then deal with doctors.

Scenario#3 If it is squamous cell cancer, open up my neck from my ear to nearly under my chin and inspect further. Remove all compromised tissue, neck muscles, nerves, jugular. Perform an laryngoscopy with biopsies to locate a primary source of cancer.

How could this doctor be talking cancer and possibly removing half my neck?! It’s just a swollen node that had not changed in size in over half a year. I drove home from the consultation in shock and numb. I told Jan my girlfriend of 13 years what transpired. We both cried, but rationalized that doctors always scare you with the worst scenarios. The surgery was a week away and i tried not to be over dramatic about it.

I will begin my experience with a reprint of an email i sent to a few family members, 6 days after my surgery and my being officially labeled with cancer.

Feb 14th 2008,
My Dear Friends,

My surgery was last friday Feb 8th 2008 to remove a swollen lymph node. During surgery they discovered it was squamous cell cancer.

So now here is the first update on my cancer

I had my first meeting with the doctor/surgeon who discussed my case.

Here are the facts.

The surgery to remove my lymph node revealed during surgery that i had squamous cell cancer. The cancer was contained in the lymph node. The surgeon removed a total of 5 lymph nodes in the chain. 4 nodes were cancerous as well. No adjoining tissues such as neck muscles or other tissues seemed to be compromised so he did not remove them.
The surgeon noticed that my right tonsil was swollen and removed it thinking it could be the ‘primary source’. Also several other biopsies in my mouth throat and nose were done.

None of these additional biopsies detected cancer, which actually is not good news.

Squamous cell cancer in the lymph nodes cannot be the primary source of the cancer. The squamous cell cancer migrated to the lymph nodes. But the primary cancer source could have been as small as a few cells (5 or 10) i was told, so it is possible that the biopsies would have missed that if that had been the case.

The next step now is a meeting with a radiation specialist. The plan will be basically to blast my neck area and try and kill the primary source and any left over cancer cells without fully knowing where they are. I believe this will happen in a few weeks once my scar has healed some.

This treatment may be all that is needed and semi-annual checkups will be follow to see if it re-appears.

The prognosis is difficult to ascertain as we don’t know if the cancer is gone or where it might show up next.

I am in great spirits and very calm about the new reality of my life. For now i feel very much at peace with my self and hope that in some way this has been a true blessing from God bringing me closer to have a better ability to savor the moment and not worry about the trivial.

To be continued…

Since that letter much has happened personally and medically. which i will get into after i enjoy an Easter dinner with family. I will go in to the details of this, in the next couple of days. Also i would like to do a daily diary of the next few months with pictures, as i go through radiation and begin the journey to rebuild myself.
Jesus dying on the Cross and rising again has never had so much meaning to me as it does today.