Tuesday, September 30, 2008

A bit more focused

I woke up this morning with focus; I had a few things to book and take care of.

I started by calling the Pathology department at WRH to see when they could have my slides ready for me to pick up to take to Karmanos in Detroit (for the second opinion). I called and hit the extension of Dr. Allevato (the actual pathologist) - this caught me completely off guard. He was soft spoken, very nice and knew exactly who I was. He remembered speaking to Dr. Hamm the day before about my case and provided me the same information she had. (Dr. Hamm had called me last night to tell me that she spoke with Dr. Allevato and told me what he recommended). His recommendation, which I completely agreed with, was that I should try to send the slides to a location that I could also be seen at easily. This meant that I should send them to Karmanos. He asked me to call back and ask for the pathology secretaries. I called back and spoke to Erin (Dr. Allevato had already gone to speak with her between calls) who said that she would likely have them done by first thing tomorrow morning, or later today...This was great. I could go ahead and call Karmanos and get it taken care of relatively quickly.

So - I called Karmanos and spoke with Lena who is a customer service rep in the International department at DMC...I told her that I wanted a second opinion of the pathology report and a follow up appointment with Dr. Schiffer (whom is a leader in lymphoma and the head of the department at Karmanos) and I wanted it ASAP. I embellished my situation a little and turned on my charm! Mind you, I am a paying customer and should be able to demand what I want...(btw - 2nd opinion of path report is $200 and consultation is $400 - in my opinion, not a bad price for peace of mind. I cannot make a decision this important based on what 2 people I barely know tell me...so I'll pay for it and make the decision based on what 4 people I barely know tell me...ahahhah...). One last caveat for me was that I did not want to give them my pathology report - only my slides and medical history. She didn't understand this at first and I ended up getting a call from her colleague who attempted to explain to me that I had to send the slides...uhhh...yaaaaa.....we figured it out and all was good.

Erin (from Pathology) called me back at 11am and the slides are ready!!! woooo whooooo

Now to begin task 2! Sperm Banking. I have to pay someone to masturbate. Great. First, Diletta's OBGYN referred me to a Dr. Martin in London, who then referred me to a clinic at University Hospital told me that I had to have blood work done prior to even attempting to ... drop off a 'sample'. So they are a NO (I have to get this done quicker). So then I called a private clinic in Hamilton. They could do it fairly quickly, but I would have to get some blood work done ASAP (today) testing for Hep B/C, VDRL, HIV 1&2 and HTLV 1&2 and it would cost $430 +GST for first year (including all tests and 1 year banking) and $255/yr for banking. So I called a clinic in Birmingham Michigan...of course...no problem...but you'll have to pay for it! (btw - OHIP does not cover this - even though I have cancer and the treatment is almost guaranteed to make me infertile). The cost for this, $200/sample (they recommend 5 samples spread at least 3 days apart) and the first sample costs $200 to 'test' and each sample costs $85/yr for storage...BUT, there was a 'deal' - the first year of storage for the first sample is free! yippe. So the first appointment will cost $400 and each subsequent will be $285 (I may or may not be able to give more samples depending on what is done to me). Theoretically, I could get a bill each year for $425/yr. Anyways...I have an appointment for 1:30 tomorrow.

This all happened while I was driving to and from the hospital and going over to the states...but in the meantime, I also got a great phone call.

A friend of Diletta's, Patrick, was 34 when he was diagnosed with a similar type of NHL while living in Chicago. His was a stage 4 and he had a large lump on his collar bone. He had drastic surgery that removed his collar bone and the large mass. He is now 4 years post his ordeal and is fantastic. He is in great health, shape and spirit. I distinctly remember the first bit of time that I was able to spend with him. Diletta and I talked about him on the drive home and were both envious of his attitude towards life, his wife, kids, fun, working out, work, new people...he is a great guy and I am happy to know him. Also, he went through the exact same treatment I am about to go through. the CHOP-R. The R (Rituximab) was an experimental drug at that time that he decided to try...and it all worked out for him! He confirmed some of the symptoms and side effects...hair loss and fatigue. However, he had no nausea or vomiting (but others did). One thing I am concerned about is my activity level...I don't have a cruise control or moderate speed button doing things...how can i be active and not compete. Ug. Patrick walked...a lot and far. Anyways, he and I are going to be staying in close contact...I am excited for this.

So after getting the slides from WRH I went over to Karmanos to drop them off...this was seamless. The one problem...I ended up having to give them the Allevato pathology report...they need to know how the slides were prepared. Oh well...I just hope they don't copy and paste.

I then talked to Meghan from Medcan who is going to proceed with a second opinion, regarding my treatment path, from John Hopkins in Baltimore. As i had mentioned previously... the one thing that kind of bothers me is that I have been diagnosed with one thing and am being treated for another...no matter how similar... I question it.

Finally, I got a call from Dr. Hamm's office...they booked me for my Port surgery on October 14th. Apparently this is a day surgery that will take all day. I have to be there for 11:30 and won't get out until about 5pm. They won't put me out, only local anesthetic.

All in all - not a bad day. I generally leave out all the personal stuff that happens. But please know that we are ooooing and awwwwing over Isabella constantly. She is amazing to watch...We think we discovered her 'poo' face...a nice calm look on her face but her lips are puckered like a fish - it is hilarious. I figure that as the days go by and not as much happens I'll start to write about the side effects and good/bad stuff that happens.

I hope you're enjoying!

6 comments:

Federica said...

Jeff, Diletta and Isabella,

It was so great to see tonight and I could not agree with you more as I was ooohhhing and awwwing Isabella all night. She is absolutely precious! I am certain this angel is in your life to bring you happiness, hope, strength and determination to face this next step. Thank you for sharing your experiences with us; we all care so much about you and want to be there for you, Dil and Isabella. Your blogs answer our fear and anxiety of the unknown and lets us help by supporting you...know that we walk with you side by side.

With love Federica

Austin Gravelle said...

Hi Jeff:
CONGRATULATIONS on the birth of your beautiful daughter, Isabella. We are happy that Diletta and Baby are doing so well.

Our thoughts and prayers are with you as you deal with your recent health concerns. We are glad that you are getting such timely medical attention. Your positive attitude and ability to advocate for yourself are key.

We are willing and able to help in any way we can be of service to you and your family.
If you need someone to take you to your treatments, I'm your man.
We are also very experienced at "Grandparenting" and would love to help out if you need someone to care for Isabella. I think we could get references if you require them!!
In short, please do not hesitate to call upon us at any time.

We are sending a "Group Hug" from the Gravelle Clan to you, Diletta and Isabella.

God Bless you all today and every day.

Austin and Margaret Gravelle

Anonymous said...

Jeff, Diletta, and Isabella,

Congratulations on the safe arrival of Isabella (a beautiful name to match your beautiful daughter), she looks adorable. Kristy and I are very pleased to see both Diletta and Isabella are doing so well.
Our thoughts and prayers are with you and your family during this time. If ever we can lend a helping hand, ear to talk to, or shoulder to cry on, please know we will always be here for you and your family.
Thank you for your strength and ability to share this with us all. Not only are you poetic with your words but you inspire great confidence and show the power of positive thinking. It has always served you well and always will.

Anonymous said...

Jeff, Diletta and Isabella...

WOW!!!I am at a loss for words.
First and foremost congrats and God bless your little angel Isabella who will be a strength in your darkest times. She is so precious and beautiful.
Secondly, our thoughts and prayers are with you. I want you to know that whenever, wherever, Abe and I are there for you and Diletta whenever you need us at anytime of day. You have our support ALWAYS. We love you guys. I also want to thank you for this blog. Just reading this helped me understand what is goin on. I also want to commend you on your awesome positive attitude. Keep it up! Some of your comments had me cracking up... thats what we love about you Jeff!!!
Anyways just remember we love you and are there for you Diletta, and Isabella...

hugs and kisses,
Mona & Abe T.

Mark and Lori Parent said...

Jeff

Thanks so much for sharing. You are an inspiration for hope, strength and love.

Lori & Mark

The Rolt Family said...

Hi Jeff, just discovered your blog today and catching up.
On a side note about everything else happening, Violet has the exact same "poo face" as Isabella; puckered lips and staring off into space. It really is hilarious.
Stay strong and positive,
Andrew