Treatment Plan

Yesterdays appointment, Finally, gave us a plan of action! It has been decided that at this time it is not worth while for me to receive radiation. The team of doctors are Very suspicious that the spots in the liver are cancer and do not want me to under-go radiation unnecessarily, so Chemotherapy it is.

Day 1 of chemo will be on Thursday May 7th @ 8:45am. This first day is estimated to last 5-6 hours and will be the concoction of Cisplatin and VP-16.
8:45am-Blood Work
9:30am-Dr. Huberman
10:00am- Chemo begins
Day 2 of chemo will be on Friday, May 8th @ 4pm, and is estimated at 1.5 to 2 hrs of VP-16 only.
Day 3 of chemo will be on Saturday, May 9th @ 9am and again will be about 1.5-2hrs of VP-16.

-wash, rinse and repeat-

Approximately two weeks after the treatment I will be brought in for blood work, to make sure everything looks normal. ie: white blood cells and kidney functions

Following the blood work I will do another round of chemo beginning on 5/28 (as of now that is the date) that will consist of the same treatment above (assuming I handled that concoction well the first time)

For all of you googlers out there:

The cocktail (nothing like a margarita unfortunately)
I will be receiving an IV cocktail of Cisplatin (aka: Platinol) and Etoposide (VP-16).
Although the odds of the cancer having spread are very high, we chose the more aggressive of the chemo drugs nonetheless. I don't want some pansy drug that's going to lightly touch on any cancer in my body, I want a drug that will kick the crap out of it even if that means I'll be throwing up a bit more and some additional side effects (we'll chat later about this). I do have various prescriptions for anti-nausea, steroids, and anti-anxiety to counter act the craziness that the steroids will cause.

The Scripts:
- Ondansetron (zofran) - anti-nausea that works on a neurological level, but will only work for 3 consecutive days before the brain catches on to its trickiness. This is to be taken only if the pre-vomitting meds don't work.

- Prochlorperazine Edisylate (compazine) - anti-nausea to take at first onset of queasiness, 4-6 hrs as needed

- Aprepitant (Emend) - Anti-nausea to be taken the night of chemo treatment, a larger dose the first day, and smaller doses days 2 and 3

-Dexamethasone - Steroids, to be taken twice a day for 4 days along with the Emend (see above)

-Lorazepam (ativan) - a calming agent, mostly to counteract the steroids, not a sleeping aid, but will help me relax and might make me drowsy.

-Hair Prosthesis (wig) - should I go blond?!? (probably not, but you can bet I'll try on every color just for the fun of it)

Side Effects from chemo-cocktail:
-Hair loss (again!), will begin 14-21 days after first day of treatment. Hair will begin to grow back a few months after treatment has stopped. (this will not go as well for me, before my face was way thinner, i could pull off the short hair thing!)
-Nausea
-Fatigue
-Low white blood count (will be tested), causes low immunity. If I get a fever over 100 degrees, cough, chills, bleeding, bruising. I need to go in for antibiotics
-Mouth Sores, treatment of home made rinse. Call doc if they become severe.
-Redness in and around mouth (boy this should be pretty), yeah no treatment for this
-Possible damage to nerves (numbness, tingling, weakness, pain, hearing loss)
- Possible Kidney damage (will check levels via blood count)
-Possible allergic reaction to the chemo (then we will have to change the components of the cocktail)
-*other side effects may occur, call your doctor, blah blah blah...*

Do you all feel totally in tune with my life and my body now? haha.
Above is a whole lot of technical information. Probably more than anyone needs to know, but in case you did there it is; meaning that I don't have to go through it all verbally (hooray for the Internet!).

Assuming (hoping) nothing pops up before then, I won't be posting for a few weeks; seeing this is for cancer updates only, if you want to know about the rest of my (not so) adventurous life, you're just going to have to actually talk to or email me. :o)

I tried to figure out how to trigger an email to my "followers" (kinda creepy title) every time I post, but I don't think it's an option - sorry.

Biopsy Results

INCONCLUSIVE. Unbelievable, stab me, suck out my liver cells 7 times and don't get an answer. You would think I'd be upset - nope! Not being able to say that I definately have cancer in my liver is okay with me... I am clean by reasonable doubt, hey if it's good enough for criminals, it's good enough for me.
Okay, so the plan. A lot of various groups of doctors will be sitting around talking about me for the next week, as they have been for the past month. They will each give their recommendations to my oncologist who will propose and advise me on my options; some of which we went over today.

Next Appointment, when the treatment decision should be made: Thursday 4/23 @ 4:30p.

Biopsy Result Date

Thursday April 16th:
2:00 Dr. Michaud (added on 4/14, this can't be good)
2:30 Dr. Huberman

Liver Biopsy Day

Waking up bright and early to get to BI by 9am, fun. It was a Long Day (I say this a lot huh??), maybe all of this will redefine the word long for me... We get there at 8:45ish, and I must give John credit for knowing which building, I almost took us in the wrong one. I say my hello's to all of the staff I know so well, IV in the first shot!! I didn't even mind the extra sensitivity of the hand; only being stabbed once is a blessing. So I'm all prepped to go by 9:10ish, but am told that I have to wait until 10:30a, so at 11am someone comes to get me. I make it up to radiology and am greeted by one of the tech's she says "are you comfortable in the stretcher" my facial expression was I'm sure more entertaining than my answer of, as comfortable as I can be.. however; to throw me off even more she says, good because we have an emergency coming in and we have to bump you. UGH! So Sarina (the best) goes to find John and bring him up. and we wait. finally 2pm I go in, they set me up, the doc comes in congratulates me on our wedding (I know him from before, I know most people from "before") and then we begin.

They scan my body using cat/scan and ultra sound, to find the lesions on my liver, this takes a while.. when they're pretty sure they slice my skin (that they've already colored on making their marks), and put in a needle cathater, and scan again.. too bad they didn't position this right the first time, so they move the cathater and do that procedure twice more. Okay time to get the "stuff". A Very long needle is placed in the needle cathater and sucks up some cells when clicked. Then the staff hides in the other room, checks it out, scans me again and repeats this several times (7?).

Meanwhile Dotty (super nice nurse providing me with "the good stuff" to keep me pain free but responsive) and I chat away about the Red Sox, Hawaii and other medical stuff. Done!

Down to recovery I go, feeling very nauseous and strange, I try to nap.. Finally 7pm-ish rolls around and we get to go home.

While in recovery I called to schedule the follow up. Unfortunately (our luck of course) we go in to find out the results one week from today, April 16th, hubby's Birthday. :O(

Finally

Liver Biopsy

Liver Biopsy is scheduled for tomorrow, Thursday.
Follow up will be in about a week (still tba), which is when we will get the results.

The Two Day BI Trip

After work yesterday (Mon 4/6/09 (happy bday scott & dickie)) we headed to the Park Plaza in Boston, the best part of our 2 days. After checking in we headed to our room on the 12th floor (did you know the hotel skips the number 13 when counting their floors?) After getting settled and starving we headed to BI. An empty waiting room - what a good sign! It would have been even better if they could find a vein; but nope, we had to wait for an IV nurse to show up (after two missed stabbings). Well 15/20 minutes of hot packs on my arms must do wonders, I might have looked like I had a sunburn but she got the vein. Okay now it's into the small cylinder for 40 minutes. Ear Plugs in (check), Breathing Strap On (check), Lead Weights (check), Emergency Bulb in case I need help (check). 40 minutes later, done - time to eat!

We headed back to the Park Plaza where we went to M.J. O'Connors, an Irish Pub, good food, (they also own The Harp and Ned Divines). Better than dinner was Finale, a dessert place we had seen on Phantom Gourmet - AMAZINGLY DELICIOUS!!! (highly recommended). Following dessert = sleep!

Good Morning! A nice stroll around Boston, Au Bon Pain coffee and croissant for breakfast (ooo la la), then back to the hospitals. Breathing tests (they make me drool, but quick and painless), lunch (sbarro, great calzone!), then the important stuff, the answers - or so we thought...

So last nights liver MRI showed "suspicious spots on my liver" (didn't we already know this?). The point being that they need to be checked out. I will be going in for a liver biopsy (within the week, tba); however I won't receive results from that until a week following the biopsy (also tba). There was no need to meet with the radiology specialist seeing that the determination of the biopsy might change my treatment in that they will not use radiation.

I have gone back and forth as how much information to post. I came to the conclusion that the reason the doctors went through everything with me is so that I'm not blind-sided come the results of the biopsy, so you all should be given the same respect.

They have reason to believe that the spots on my liver are cancer spots, however they could just be inflamation (please keep this in mind), which is why the biopsy is so neccessary. Unfortunately if I have thymic carcinoma cancer also in my liver then it is not curable and is considered to be on the same line as stage 4 lung cancer. If it is cancer, my treatment will be chemo that will give me the best quality of life with the benefit of extending my life as long as possible. They estimate that I would have about a year left to live. If they can't prove cancer, then they will go ahead and do the previous plan and treat only the thymic carcinomas (two) on my thymus.

I'm sorry to all you who have to find out this information in such an impersonal way; but to reiterate this information to everyone is very difficult for John and I. Our plan, please take our lead is not to jump to conclusions... we do not know anything until we receive the results of the biopsy.. and as always, I will let you know when I know.

Unexpected call Post PET/Scan

I received a call from my doctor's office today requesting that I go in for a liver MRI. They want it done before my Tuesday appointments with the doctors which is when I will receive the results of the testing. The reasoning I was given for this was that "the PET/Scan showed an intense area on my liver where my gallbladder used to be". Intense huh? interesting choice of words... So of all days (nights acutally) we have to go on Monday night, the Red Sox home opener, I'm sure that traffic will be terrific!