PTLD

If you are reading this you are someone who knows that I have Hodgkin's Disease. My hope is that this blog will allow my family and friends (and anyone else who finds it) to follow my progress. I don't know what will happen as I begin treatment as to how frequently I can post.

30 May 2007

News

It's been over a year since I've last updated this blog. For most of you who follow it and are my friends and family you've been updated via phone, family members, and friends; for those of you who just know me through this forum I apologize.

Last Friday, 24 May 2007, I underwent my 6 month out PET/CT. It came back with two small spots below my diaphragm. This is what I know so far. First the two spots are 1.3 and 1.0 centimeters in size. Second, neither are located in previously cancerous spots.

What we don't know is what makes cancer so hard.

30 March 2006

Long over due update

Hi Everyone whose following my poor attempts to chronicle what is going on so far. Here's a timeline to get everyone up to speed. There will be longer

Late January
- admitted into St. Luke's Hospital to under go a submandibular excision to remove a swollen lymph node. The removed lymph node underwent a pathological exam to determine that I did in fact have Hodgkin's Disease.

7 February 2006
- Pet Scan to properly stage my Hodgkin's Disease. I was diagnosed as having Hodgkin's Disease in stage 2A.

17 February 2006
- Meeting with Dr. Risch to discuss the effects and proper radiation treatment.

16 March 2006
- Bone marrow biopsy at Dr. Shah's office.

29 March 2006
- Second PET scan and CAT Scan for restaging

30 March 2006
- PET scan, CAT scan, and bone marrow results

As time permits I'll add blogs for each of these events. Promise.

Link

07 March 2006

Paperwork

If there was anymore paperwork required, I’d be working for the government.

It’s November 23rd. My appointment is at 10 AM that is good. I work at noon. Work is a solid thirty-minute drive from Dr. Koch’s office.

Mom believes that Dr. Koch performed my adenoidectomy in fourth grade at Sacred Heart Hospital. There isn’t much that I remember other than I was allowed to eat ice cream for several days afterwards and I was on the fourth floor (the pediatric unit).

Anyway, since I’ve never been to Dr. Koch’s office before; I left early allowing me to become disoriented. His office was not difficult to find after I drove by the building eight times. The location was part of a giant corporate complex with investment firms, banks, and the Lehigh Valley headquarters of GEICO (the largest building of all). All of which were in nondescript buildings with numbers and the occupying business (in fine print) displayed in low visibility areas. Pond road, were Allen Ear Nose and Throat is located, is only about one-half mile long.

It’s nine-forty five. I finally locate 1575 Pond Road. It turns out to be the one building that looks different than all the rest. Go figure that one out!

When I made the appointment the receptionist suggest that I arrive thirty minutes early to complete the necessary forms.

“Hello, This is Teresa (all names have been changed to protect the innocent or because I simply can’t remember) calling from Dr. Koch’s office confirming your 10 AM appointment for November 29th.

“That’s correct.”

“We suggest that you arrive thirty minutes prior to your appointment allowing for sufficient time to complete all the necessary forms.

“Okay,” I replied while thinking “What information about me could they possibly require that necessitates thirty minutes worth of forms?”

Dr. Koch’s office decorum is standard in appearance. The walls are soothing color, a pastel to make us all feel comfortable I guess. The magazines were current if the year was 2004 with the Newseek, a couple of women’s magazines, and Highlights being scattered around on chairs and tables. There was children’s play station with a table like this and crayons next to the television turned to either MSNBC or Fox News. I had A Team of Rivals to read, but it was doubtful I would because I had fifteen minutes for thirty minutes of paperwork.

There are five doctors working at Allen Ear, Nose, and Throat, none of whom are named Allen. Why the practice is titled as such is a question I never remember to ask when I’m there. Three of the doctors are ENTs and the remaining two are allergists.

The receptionist was a large black woman, who under other circumstances may be a very cheerful woman, but for whatever reason she decided that I was problematic. I’m not really sure if I did anything to justify this.

“How may I help you?

“I’m here for 10 o’clock appointment with Dr. Koch

“Please complete this paperwork and return it to me using the supplied pen. May I have your insurance card to copy?

“My insurance won’t be effective until December 1st. So there is no card for you copy.”

It is at this point that her demeanor changed. It doesn’t make sense to me why my insurance problems would cause her grief unless she deals with patients and billing. Who knows?

The stack of forms consisted of contact information, insurance information, emergency contact information, and medical information. Now, my medical history is more complicated than most. But even taking my time to thoroughly complete the forms, they were completed in about ten minutes. It may be that patients don’t need thirty minutes, but a possible hypothesis for the thirty-minute early arrival is there patients may be chronically late for first appointment. So the receptionist gives new patients a buffer knowing they may be late (as I was) while still allowing sufficient time to complete the new patient paperwork. Just a guess.

Any other possible ideas?

18 February 2006

In the Beginning...

In the beginning was the Lump, and the Lump was with OTA, and the Lump was OTA.

Well not really.

Back in late September/early October I noticed a lump growing on my upper lip. It wasn't painful. It wasn't problematic. It didn't seem to be growing any larger after I first noticed it. So I left it alone.

A couple of weeks went bye. The lump just hung there. It wasn't bothering me. My mustache covered it. Mom and I were talking in the kitchen one day when she asked, "Did you hit your lip?"

I replied, "No, my lip has been swollen for a week or two."

That's the wrong thing to say when your mother is a physician. She proceeded to poke and prod asking questions like "Does it hurt when I do this?" or "Does is bother you when you do that?" She didn't seem overly worried about it but suggested I take some antibiotics.

It's quite convenient when your mother, whose professional name differs from mine, calls in a prescription in my brother's name for me, I was uninsured at the time, only to be picked up by me.

So, I take a course of Keflex.

The lip lump regresses so it is no longer visible.

Mom is pleased. So am I.

Around mid November, a new lump grows under my jowl. Again this lump is both painless and of small size. This time I do tell Mom.

Mom exteriorly palpates the lump. If she is concerned about anything she mentions nothing. Mom believed that it is either an infection or a hard deposit in my salivary gland. Either way another round of Keflex is in order. Mom mentions that if this second round of antibiotics doesn't clear it up, she would recommend I see an otolaryngologist.

Mom calls in the script.

The lump reduces but does not clear up. After a few weeks (my time table may be slightly off) the lump returns to its original size.

Mom arranges for me to see Dr. Koch (pronounced "cuck"). She explains to him that I my insurance is not yet effective.

17 February 2006

And the Oscar goes to...

The Cast




Me












The Doctors

Dr. Guzzo - Nephrologist He has known Mom for years and was my primary physician for several years before moving to Montana and now that I've returned to the Lehigh Valley.









Dr. Koch - Otolaryngologist A skilled surgeon with a jovial personality which placed me at ease. His attention to detail is comforting to me, being trained in math and physics the details are where the truth lies.










Dr. Shah - Oncologist He is soft spoken man who spoke plainly in our first meeting. He is very deliberate about ensuring his patients understand, albeit rudimentary, what is going on. It was recommended by my nephrologist that he is the oncologist to see.









Dr. Risch - Radiation Oncologist Dr. Shah sugggested I consult with him regarding the appropriate treatment. A man who buys designer glasses because mass of the frame is evenly distributed across his nose.










More to come.

What you really need to know

As people ask more questions, the page will be updated.

1) What is Hodgkin's Disease?
I could rephrase what an expert said elegantly or you could click here or here.

2) Will I become cured?
Being cured from cancer is typically defined as being cancer free for five years post diagnosis. Here are some key statistics related to Hodgkin's Disease treatment. The one-year, five-year, and ten-year survival rates are 93%, 85%, and 77% respectively. For more numbers click here. More numbers are here.

3) How can you help?
Donate time or money to any of the following groups.
www.curehodgkins.com
www.cancer.org

4) What does PTLD mean?
PTLD are the initials for what my physicians believe initiated my case of Hodgkin's Disease. They stand for Post-Transplant Lymphoproliferative Disease. A couple of good sites are this and this for technical explanations. PTLD is caused by persons who have been on strong immunosuppressant regimines after having recieved an organ(s) transplantation. My drug cocktail consisted cyclosporine (Neoral), mycophenolate (Cell Cept), and prednisone (I, like Barry Bonds, am on steriods).

16 February 2006

välkommen

If you are reading this it means either I told you or my family told you or a friend of mine told you or you randomly wandered in. However you learned of this blog I wish you welcome.

This blog is my attempt to chronicle the coming months,through the written word, my coming battle with Hodgkin's Disease. As this blog develops and evolves, it will serve (hopefully) as a venue for me to record my experiences, educate other's about Hodgkin's Disease, vent frustrations, share the triumphs, lament the difficulties, and who knows what else. By writing this blog, my family and friends will be able to continually follow my progress.

As sources of good information are found, either by me or someone else, links shall be provided for all to read. So please if you find something interesting let me know.