Wednesday, November 30, 2011

First Chemotherapy Appointment At MSKCC

Earlier this morning I arrived at Memorial Sloan Ketttering Cancer Center and had a CT Scan. In just a few minutes, I'll have my blood drawn and then an appointment with my oncologist Dr. Kemeny. She'll review the blood work and a variety of liver enzyme counts, and then prescribe the chemo to be injected into my liver chemo pump. It will slowly "drip" chemo into my liver for two weeks. I've been told that 90% of the chemo will be filtered out before it ever leaves my liver and enters my blood stream, so the side effects will be negligible.

Two weeks from now in Ithaca at Cayuga Medical Center is where I'll receive Folfox, a systemic chemotherapy. This is the treatment I'm curious to return to. My body did not respond well to it in 2008-09. And perhaps things will be different this time. Dr. Kemeny says if I'm so sick that I'm laid out on my back for six-months, like I was last time, that the dose is too high and she'll lower it. Funny thing to think about. Do I want a lower dose? If I'm going to do chemo, I might as well dig in and do all I can. And, I will ask Dr. Kemeny about that during our appointment today.

Tuesday, November 29, 2011

The Truth About What's So

I guess I've been a little slow to post lately. I haven't felt particularly inspired to write what's been going on with me. I've been kinda blue as of late. And there has been a lot of emotion directed my way from those dear to me about how I should be doing things. I interpret it as a gauge for how people in my life are responding to what I'm going through and how concerned they are.

This all leads me to wonder, if I was more self-expressed about what was going on with me, might people have an easier time being with the whole thing themselves? I don't know. It's a pretty tough situation, but since it's a possibility, and certainly no secret, my situation is a frightening one. I either get better or I get a whole lot worse. I know that's in the mind of a lot of people because it's in my mind when I hear about others with a Stage IV diagnosis. And it's my mind about myself right now.

As I'm typing this, I'm looking across the room at a photo of my little boy. Last week I was ready to make a deal with anybody who would listen: just give me until my boy is 20 and then you can take me with no argument. "No argument." That's funny. Like arguing would make any difference.

And then there has been other issues this week. My source of disability insurance claims I currently owe them money, which is absolutely absurd. So in the mean time, as I wait for them to figure out the source of their mistake, I'll be going to the Department of Social Services to see if I'm eligible for Emergency Financial Assistance. I used to sign those documents so my residents could receive it. I never thought I would be a potential recipient.

So the last couple days have been really difficult. And fortunately, a dear friend made a few calls to some other friends and paid a few of my bills for me. People have been incredibly generous. I'm incredibly humbled and equally grateful.

I feel like I've shared too much. Maybe it's just been while since I've been willing to be this honest.

Thursday, November 17, 2011

Another Series of Appointments Complete

On Saturday November 12th, I was in NY with my sister Vivienne because I had appointments all day Monday (November 14th) at Sloan Kettering. I'm very grateful for Vivienne's presence, because it was non-stop from 9am to 7pm, not to mention it was great to spend my time with her.

I checked in about 9am for a second flow scan for my Hepatic Arterial Infusion Pump (Liver pump). The scan revealed that all is working properly and the liver pump chemo can begin on November 30th as planned. However, the staff started the scan later than scheduled and at 12:08pm, Vivienne & I exited the hospital and headed to the clinic, now late for a 12pm EKG appointment. Just to clarify, all of my out-patient doctors appointments are on 53rd Street at the Rockefeller Outpatient Pavilion (what I call the clinic), while the scans and surgical procedures have been done at the Memorial Sloan Kettering Cancer Center, commonly referred to as Memorial Hospital. So, we left the hospital at 12:08 and immediately went to 53rd street for a EKG scheduled for noon as well as my appointments with both my surgeon and my oncologist. Following those appointments, we returned to Memorial Hospital for a quick out-patient surgery, during which I had a port installed. At 7 pm, we were on our way back to the hotel room. Man, it felt good to get out of there and be back onto the streets, with no more appointments to think about for the next two weeks. With so many appointments in the day, Vivienne and I spent the entire time concerned about whether we were going to be on time for the appointments, or more specifically, if we were even going to make the appointments. For us it was hurry up and wait all day.

Fortunately, we ended the day with a very nice dinner followed by 45 minutes of live music, both with our German exchange brother, Hinnerk, who is back in town for a joint birthday celebration we're having for our folks this weekend. Amazingly, my appointments in NY coincided with his arrival in NY. It certainly made for a really wonderful time.

On Wednesday November 30th, I return to the Sloan Kettering for my first liver infused chemotherapy treatment. Two weeks later, I'll go to the Cancer Center at Cayuga Medical Center in Ithaca and receive Folfox chemotherapy, systemically, via my port. Also the liver pump will be filled with a saline & heprain solution because at the two week mark, the pump will have run dry. If it stayed empty, there is risk of blood clots, which would obviously be very dangerous. Two weeks after that, I'll return to Cayuga Medical Center again and the liver pump will be refilled with saline and heparin and I will have another round of systemic chemotherapy.  One week following that, I return to Sloan Kettering to have the pump chemo again. I will do six rounds of this five week cycle for a total of seven months.

Amazingly, the pump is activated by my body heat and the rate at which it flows is based on and therefore adjusted to the atmospheric pressure of where ever the patient lives, in my case the Eastern seaboard. Thus the pump flows at a very specific rate. Should the patient travel to higher or lower elevations, adjustments to the pump are made. Also, I'm not allowed to travel in non-pressurized planes, which doesn't exactly pose a problem for me. Hopefully, the little man and I will still be able to do a twenty minute ride in a prop plane with the East Hill Flying Club on Father's Day.

Tuesday, November 8, 2011

Returned Home

I returned to Ithaca on Monday afternoon. It's good to be home and even better to be back with my little man. I missed him a ton while I was gone.

I'm feeling as well as to be expected. So, I took only a half a pain pill this afternoon in hopes of starting to reduce my intake, but not a chance. The pain level slowly started rising and I quickly took the other half. I guess not so soon.

I take regular walks as the doctor ordered and I still need a ton of rest every day.  But supposedly I will be pretty close to recovered at the four-week mark, considering my oncologist has me scheduled for chemotherapy to be gin at that point.

Speaking of being tired, I can barely keep my eyes open. I'll expand more later...

Saturday, November 5, 2011


This afternoon I was discharged. I will stay in New Jersey for three days. If I have no difficulties and thus no reason to return to the hospital, I will return to Ithaca to continue my recovery.

My first return appointment to Sloan Kettering is on November 14th. Yeah, ten days. Seems kinda crazy to go back so soon. Apparently, I need to do a second liver scan test before chemo begins, to be 100% certain no blood vessels from my liver go anywhere other than my liver. I'll have the staples removed from my abdomen and a few other things that currently aren't coming to mind at the moment.

Then two weeks later on November 28th, I return to Sloan Kettering for my first round of the liver chemo (the chemo administered directly into my liver). I will only do only the liver chemo in at Sloan Kettering and I will do the systemic chemo (the chemo administered into my veins) in Ithaca.

Enough talk about chemo. At the moment, I don't want to think about it.

Thursday, November 3, 2011

Waiting it Out

It seems that each day here in the hospital has provided me a different hurdle. Once the epidural was removed and I was put on oral pain medication, I went in for a pump test which included liver scan to make sure the pump was working and that all blood vessels led into the liver and only the liver. Well, during the scan it was found I had a rogue blood vessel which ran from my liver to my stomach. If left in tact, the chemotherapy pumped into my liver, would find its way into my stomach and that would not be good.

So on Wednesday evening, I had a catheter injected into my groin artery [good times!] and the doctor found his way to the said blood vessel and blocked it. As a result, I can now undergo the liver pump chemo which is what I came here for. The procedure has a 70% chance success rate, and without a successful procedure, liver pump chemotherapy would not be n option. So, his success was great news.

This morning, my surgeon, Dr. Di'Angelica and his crew took a look at me and decided to keep me a little longer. After my large intestine finally got moving on the Tuesday after surgery, it got sluggish again, due to the no food & drink order for Tuesday after midnight in preparation for Wednesday's procedure. So, I've taken two walks and a variety of things to get the ole bowel moving.

I do look forward to getting out of here, and at the same time, I'm very happy to be under the hospital's care until "things are back in order." So, I'm waiting in out.

Made a Friend

Had a visitor Monday. Otis. Very sweet fella who makes weekly rounds seeing patients.