Monday, September 29, 2008

Let's go meet the Oncologist...

To start, thank you all for your support. I really enjoy reading your comments and emails. I read all of them more than once and have gone back to read them day after day. I bet most people don't know what to say to me...and no worries, I know you're there. Remember that I am working at keeping the best possible positive attitude I can right now. I am nowhere near what I need to be because I am in shock and scared silly right now. BUT, I am working on it and will make that transition to having the bestest positive attitude possible and I'll need you there with me.

With that said...What a ______ day.

Started this morning with an appointment for Isabella at MET hospital. All is great. Isabella is at perfect weight, hearing test was perfect, breathing was great, breast feeding was great...couldn't have asked for a better appointment. Everything has been soooo perfect with Diletta and Isabella that there is really nothing to report on ...

Diletta, my Aunt Kathy the nurse, went to my 12:30 appointment with Dr. Hamm at the Cancer Center just behind MET hospital. It was a bit overwhelming...and I forgot my damn health card...the only thing I had to remember. hahahah...the lady at the front gave me a small lecture and I had to take it with a smile...

We were told to wait in the large waiting area by the front desk. The first person to come see me was a social worker named Glenda Fisher. She called us into her office and spoke ttttoooo uuuuussss rrreeeeaaaallllllyyyyy ssssslooooooowwwwlllllyyyyy. Enough said. However, as I said to her...I'd like to think that I won't need any 'support' that a social worker could provide, but I likely will. And so too will some of my friends and family. {I especially realized this at the end of the appointment...} She gave us a bunch of resources (internal = nutritionist, social workers and pain/treatment management) and guided me to some websites. She told us that the best place to find support is through Hospice (http://www.hospicewindsoressex.com/). She recommended a Life Style Change Program to be run at Hospice. A 4 weeker...I guess I'll find out...

She then took us up to the second floor where we were to meet with Dr. Hamm's nurse (first) and then Dr. Hamm. It was ok walking around the place. I didn't know what to expect...I expected to see a bunch of people to be walking around with bald heads (you do), people looking sickly (you do) and sad people (you do) ... but it wasn't that bad. The center is fairly new, updated and there are a ton of volunteers around. Glenda introduced us to Marilyn. She is a 60ish year old volunteer that had rave reviews for Dr. Hamm, who apparently helped Marilyn cure her cancer.

We then met with the nurse. This was 'ok'. I was very anxious and trying not to be impatient. She was trying to help...but I was getting annoyed that she was giving me info about everything before I was even able to talk to the doctor. However, some things that I did find out were ... that I should be taking 1000mg of Vitamin D daily, chemo is going to tire me out, i have to reduce my stress, think positive, listen to my body, sperm bank, what? sperm bank? ....ug.

Then I met Dr. Hamm. I am very impressed with her. She is smart, confident, knowledgable, confident, kind, understanding, open minded and confident.

She had this printout and walked me through Diffuse large B-Cell lymphoma. Essentially, this is the same as my dx (follicular non-hodgkins lymphoma) but the cells are slightly different. What I understood the important point to be is that if you treat DLBCL like FNHL it will act like it.

Grade III is a great Grade to have because it is CURABLE. This is because the cells are aggressive and fast growing and the chemo will work better on them, especially at my AGE. Grade I and II are slow growing and are generally too far advanced when they are discovered.

At this point I brought up 'second opinion' - she raved about the Windsor pathologist saying that she would be willing to put him against anyone and be confident that the result would be the same. She trusts him 100%. She also noted that the pathology department in Windsor had been cleaned up and that if someone else had analyzed my samples, she wouldn't be as confident. I mentioned university hospital in London and Princess margret in Toronto and Medcan who is associated with John Hopkins in Baltimore. She said that Dr. Armitage in Nebraska is likely the best lymphoma guy and that a Randy Gaskoin in BC is also very good. Gaskoin gets to see ALL lymphoma cases in BC, which is unlike most systems that typically deal locally. She is going to call the windsor pathologist and see what he recommends (seems odd to me...we'll see).

We asked about the fact that Dr. Ling thought that he got it all out...apparently, it doesn't work like that. He was only able to get all the cells that looked abnormal, cancerous cells can look normal. Kind of like a few of my psycho ex-girlfriends....the 'looked' normal.

She talked about risk factors...but nothing really pertained to me.

She talked about symptoms - the only one that I have was a small/medium mass (holy crap - i would hate to see large). NO to the SVCS, TC, Nerve damage or bone issues...and NO to all the B-Symptoms (no fever, no unexpected weight loss, no night sweats). This is all GREAT.

Staging - to determine what stage the testing has to be done. However, I am a minimum stage II because the cancer was in both tonsils. (I wonder or not that if I would have had my tonsils out whether or not I would have got this...I would guess that I would have got it somewhere else and it would not have been found for many more years and I'd be dead by 40 because it would so far progressed - so thanks mom for not getting my tonsils out).

Diagnosis and Future tests...Ug.
  1. Blood work for LDH levels (thursday)
  2. Bone marrow biopsy from the hip (thursday)
  3. Spinal tap
  4. CT scan (abdomen, Pelvis, Chest and neck)
  5. Gallium Scan
  6. MUGA scan to test Heart Function (left ventrical)
  7. X-rays
  8. PET scan - this is done post chemo to see if all the cancer is gone (I anticipate this being a big day)

Treatment...

Essentially, she is recommending the CHOP-R (5 drugs) for 8 cycles and no radiation. The chemo is designed to attack all growing cells. These include Hair, Mouth, Lymphoma, white blood cells. So - I will lose all my hair (I got all the jokes with Isabellas picture...) and likely have mouth problems. She went into detail about these drugs. Essentially, I go for 1 treatment every 3 weeks. The first one will be about 8hours long, the 2nd/3rd about 3-5 hours and the last 5 may get down to 90min. I will have to take another drug to control my white blood cell count. This will be a needle either once a week or once every other day. I will also have to have blood work done once a week...oh ya, and maybe more drugs for vomiting, or diarrhea, or temperature control, or UG.

This part was very confusing for me. She went over each drug and briefly explained what they do. Some key parts are that the Rituximab (R) is the new wonder drug. Upon the creation of this drug cure rates go up 20% across the board and generally speaking all epidemiological research that has been performed is from more than 10 years ago (before the drug was introduced). So anyways, the main drugs are Rituximab (Rituxan); O = Oncovin (Vincristine); C = Cyclophosphamide I.V. (cytoxan, Procytox); H=Adriamycin (Doxorubicin); P = Prednisone (steroid).

One thing I had no idea of is that I will likely have to get a "PORT" .. a what? what is that....it is only a day surgery ... they insert a place for me to get all my needles under my skin. WTF? It's essentially a catheter that will be inserted in my chest and the tube will come up by my collar bone that I'll have for 6 months. Didn't see that coming. I wonder if I can pour my beer in there?

Side Effects - you name it! One scary potential is that I will become infertile. The only guarenteed one is that I will lose my hair after about 3 weeks. I am ok with this...not 100% sure why - likely cuz it is going anyways....I did ask if it would restart the entire process so that I get what I had when i was born....like a system reboot. Apparently not.

The keys for me to watch for (hit the panic button) are high temperature and little red spots on skin. I am sure that there are more but I haven't re-read the material yet.

Prognosis (I should have put this at the top because it is very important)....Based on the FLIPI score, of the 5 possible points, I am not >60yr old; I have great performance status; and likely NO extranodal sites (based on results of CT Scan - but I am having more CT scans done on my abdomen to see if there are extranodal sites). So the only 2 other things to find out are my LDH levels and the stage.

This tells us that I am a Low to Intermediate Risk ( IPI Score of 2). So, based on the table at the bottom of this page - my chance of being alive at 5-yr is 70-93% and a full remission rate of 87-100%. This is AMAZING and something I have to remember. As per Dr. Hamm, I have added 20% because of Rituximab to do the fact that these stats are from a study published in 1993.

We didn't discuss clinical trials at all.

She then gave me a once over to feel for all my gland sites and none were swollen (this is GREAT).

So after all this great information from Dr. Hamm, the nurse came back in and started reviewing all the drugs and their side effects. This really got to me. I got really annoyed and wanted to leave. Like I said earlier, there are a ton of side effects and for some reason she wanted to talk to me about all of them...I nearly lost is. We had been there for about 3 hours at that point and had just focused my ass off listening to the doctor ... I was done. Ok, so then we went for a tour of the chemo room - this sucked and it was hard to walk through there...I was avoiding all eye contact cuz I knew I would lose it. I was very very drained.

Where from here...Ug.

I am working on getting a second opinion through John Hopkins in Baltimore and Karmanos in Detroit. I hope to get them soon. Even though Dr. Hamm holds the Windsor Pathologist is such high regard, we are making decisions based on his opinion - so it logically should be checked.

I have my blood work and bone marrow test on Thursday. I have to find a place to bank some sperm (either Hamilton or Birmingham in Michigan).

I just wrote in an hour what happened in 4...so it isn't all here....but most is.

I like comments.

8 comments:

Marg said...

of all the things you have going for you, the "Right Attitude" might just be one of the most important. If anyone can hold on to that, I know with the support of your marvelous family, you can.

Phil Duym said...

Jeff,

Thank you for sharing your big heart with all of us...We are blessed to have you as a friend.

Nancy, Tatum and I SUPPORT you and your family with LOVE and PRAYER.

You are a GREAT man Jeff and I believe you will either find a way or MAKE ONE!

Godspeed

The Duyms

Joanne said...

Jeff,

Thank you for sharing this with us. All of my thoughts and prayers are with you right now.

Syed said...

Dear Jeff:
I am so shocked by this news that I have no words. I do however believe that you are a healthy, fit young man who will come out fine after this episode. Please let me know if I can be of any assistance. I mean it from the bottom of my heart. I am sincerely praying for you.

Please take care,

Yours friendly,
Syed

stephp said...

Hey Jeff, you are right about the support .....you have a large group of family and friends who love you and are here for you anytime you or Diletta need anything ....this is an extremely overwhelming time for the two of you .....I cannot imagine what you are both thinking and feeling at this time - however there is one thing I do know is that miracles are possible - the birth of your beautiful baby Isabella is a miracle - curing this cancer is and will be a miracle - I am praying everyday for both you and Diletta - I know the Lord is going to give the both of you the strength you need to get through all of this.
I love you guys and can't wait to see you ......I'm going to give you a bit more time before a visit .......please let me know when you've depleted all your food in your fridge ....I want to come and bring you guys dinner!! I know this helped tremendously after Lea was born ........I had 3 generous families from our church prepare us meals and they were delicious!!!
see you soon

Michelle Tew said...

Hi Jeff

I was so sorry to hear your news - - - was happy to read that things are excellent with your wife and daughter - it will be great to focus on your beautiful Isabella! The staff at the CaCentre are fabulous and it sounds like they have given you lots of information so you know what is going on (sorry about the lecture about forgetting your card - bureaucacy).

Re hair loss. I have had several friends who have lost hair via chemo - their hair has come in different: a red head turned dark brown, one with straight hair got curly hair, one with thin hair got thick hair .... but they all got their hair back!

Keeping you safe in my thoughts .... Michelle

Natalie said...

Jeff,

As Maggie (she asked that I let you know she is thinking of you) said to me recently, she knows that one thing she made sure of during her chemo was to rest and take care of herself. Her sister is going through chemo in England and she thinks she needs to slow down and let her body heal. So remember to face the treatment but allow some healing time. By the way, Maggie's hair came back thicker and healthier she says and... 8+ years cancer free!

Life is great but there is a bump in the road. Not sure why it is in your path my friend but we will all help to carry you through.

Nat (Ron, Sophie, Callum and Roman)

Don Patten said...

Hey dude. I hope you are hanging in there as you wrap your head around this and I know you will filter out all the overwhelming information and focus on each task at hand. I know you will use Diletta and Isabella as your strength, your motivation to heal and get through these tough times. Use them as motivation and your friends will be here to help as well. Take it easy buddy rest try to relax.

Thinking of you.