Sept 29th - Don't judge a book buy it's cover

So I hate to say it but this "Cancer Center For Excellence" was starting to remind me of your typical small town ER. The evening of the 28th did not go as planned as I had previously stated, they made me fast all day and then didn't do my catheter insertion because of a "miscommunication". But my night only got better from there. I had a bad reaction to the E chemo and had a really bad asthma attack. I called the nurse in and by the time she got there I was wheezing so hard I thought I would pass out. She doesn't normally do chemo so the first thing she does is run out of the room to try to track down my chemo nurse (who apparently is away on break). So this nurse who didn't know what to do and saw that was barely breathing left me alone for over 5 mins when she could have just pushed the call bell on my bed and asked for back up.

Later on the same nurse hung the wrong IV bad for me. It was still a drug I take but not the one I needed at the time.

When the doctors did there rounds (none of mine where there, just the rest of the Lymphoma team) they first commented how lucky I am to be in this suite! I politely reminded them that I did not come here for luxury, I would much rather be slumming it down on the 14th floor with all the other Lymphoma patients and get better care.

The team of doctors promised to get me on the surgical schedule immediately and so I was fasting again. Turns out after repeated phone calls to my patient rep I was never but on the schedule at all for the second day in a row and just on a waiting list.

But they did make good one one promise. They changed my night nurse to a much more competent one and even arranged for my suite to be changed and moved me to the one closest to the nurses station.

I ended up going down around 5pm (after repeated calls and pressure from my Aunt and I) to surgery and had my catheter placed. At that point I had been fastin for 36 hrs with only one tiny meal in between. It was a little bit of a surprise when I woke up from surgery. The thing is huge, with long tubes sticking out of my chest. I really don't know what kind of clothing I am going to be able to wear!

But after coming back from surgery my night was pretty good for the most part. I am really sore from the surgical site, but being right next to the nurses station has been great and I like my new night nurse. So maybe this is the changing of the tides for this place.

Sept 28th - My time in NYC so far

Sorry I haven't posted much lately. I have been talking about and thinking about cancer so much lately, the last thing I want to do is write about it.

I have been very tired the last few weeks and this MICE chemo regimen is definately harder then the AVBD was on me.

I came down to NYC to Memorial Sloan-Kettering yesterday for an appointment with the stem cell transplant doctor. Our meeting went well and he pretty much laid out the process for me. Nothing he said was too much of a surprise to me.

I do have to have a cathater placed in my vien by my clavicle. Which was supposed to be done in the OR today before my chemo started. However there was a "miscommunication" and after fasting all day and just sitting in the hospital they canceled it for today. It is now 7:30 pm and all I've had to eat all day was half a pancake at 8 am. So I am tired, starving and they haven't even started any chemo yet.

The good news however, is that there was a shortage of space on the Lymphoma floor here so they had to put me up in a private suite. I have never seen such a beautiful hospital room/floor in my life. It looks like a 5 star hotel. If it wasn't for the hospital bed you would never know the difference. I have a flat screen with a DVD player and 2 BOSE stereos in the room. Marble floors and counter tops. There's a big window by my bed that looks over the river. I also have a fully stocked mini bar (free of course). There are 3 security doors to get to my room and a private elevator. The staff here told me this is where the celebrities stay in the hospital! So if you have to suffer through chemo, it might as well be in a nice place.

The nurse just came in to start my chemo and hopefully everything else will go without a problem.

Sept 12th - Home for now

Right now it is 4 in the morning on the 13th. I was let go from the hospital yesterday morning. But I hardly can remember leaving even now. I am so weak, exhausted and extremely sick to my stomach. But I made it through the first of my two 4 day chemos. : )

Sept 11th - Day 3 and a shitty one at that

Figures a day like Sept. 11th would be a bad one. We all can't forget the misery we experienced together as a country that day nine years ago. But I had a pretty bad one this year too.

After my last post last night I started to feel better and not worse, which was surprising cause I was doing the 24 "power chemo" (I like to call it that). My dr even came into see me and said there was no reason I couldn't get discharged today (a day early) cause everything was going smoothly. Well if it seems to good to be true, it probably is.

At 12:30 AM my step-sister who is an oncology nurse on my floor, came into my room to visit with me. She was not my nurse for the evening, she was not allowed to be my nurse cause of being family.

She looked at my chemo pump which at this point said it had less then 12 hours to go but immediately new that something was wrong. The other nurse that had hooked it up over 12 hours prior had never released the clamp on the line and no chemo had been flowing to me for that whole time.

She released the clamp without me knowing and let me go to sleep. Which was the smartest thing to do cause she knows I'm neurotic and wouldn't be able to fall asleep after finding out this info.

But I woke up about half an hour later extremely nauseous and the nurses all told me what had happened. I felt so deflated. Here I thought I was well over half way done with the "scary" chemo and it hadn't even started!

Since then I have talked to the doctor on call here and my doctor at Sloan and they both believe that the delay is not significant enough to be detrimental to my treatment.

I'm over being mad that it's caused me loss of early discharge and the waste of time. Just scares me that such things can happen even to diligent patients like myself. This may be my last chance at a cure and I don't want stupid little errors like that to potentially hold me back.

Sept 10th - MICE day 2

Today was the day I was dreading the most. Three chemos all at once, the one lasting 24 hours. I still have 18:30 left on that one and I am already sick :(

Good part is, I have tolerated (of course I use that term loosely) all of the drugs with no serious side effects which means I should be able to handle the treatment plan. As horrible as it is, I will make it through.

I'm really nausous and I can't even look at food. They have given me all the antinausea drugs they can so I just have to wait it out.

The other unfortunate side effect is I can't sleep from all the steriods they are giving me. I'm exhausted, but can't fall asleep. I slept three hours Weds night and literally an hour and a half last night. I was so jacked up on the steriods I was rearraging the furniture in my hospital room at 3 am. I am going to try negotiate with the dr to lessen the steriods when I see her during rounds tonight.

Sept 9th - MICE day one and update on treatment plan

Well I survived the first day. The chemo itself went pretty easy. Only side effect I had while it was being administered was a strange tingly sensation on my skin but it only lasted about 15 minutes. Having really bad heartburn and lower back pain now though. But oddly enough, I am not sick to my stomach!

Tomorrow might prove to be more of a challenge however. Today I only got the "E" in the group of drugs. Tomorrow I get all of them and one is administered over 24 hours! Kinda nervous about that one! Hopefully everything goes smoothly. I have a private room here and the nurses are great (that may or may not have something to do with my step-sister working on the floor). It helps to know people sometimes. : )

Big update though to share with you. We have a change in plans. I will now be getting my second course of chemo, all my radiation as well my transplant. They really feel that it should all be done there. Logistically, it may provide some obstacles, but everything will work out in the end. It always does some how. My next cycle of chemo will begin 9/28 at Sloan-Kettering and immediately after I will be there outpatient "harvesting" stem cells, that takes about a week. Then I will begin radiation there 2x a day for about two weeks. After that I will immediately start the transplant.

Sept. 3rd - Two MICE, radiation and stem cell

That's it in a nut shell.

Met with my local oncologist this afternoon. Got a lot of answers but still have questions. No matter what, I think I will never quite get it. But I am going to attempt to explain the plan as I best understand it.

First step is more chemo, my acronym this time is MICE, the M is actually not a chemo itself but is given simultaneously with a chemo to prevent really bad side effects. I will be going to the local hospital on Thursday and they will administer the MICE over a 4 day period, so I will be going home on Sunday. I will then wait 14-17 days and have the MICE done again, this time it will be "Augmented" which just means a higher dose of the chemo will be given.

After my second cycle of chemo, I will have yet another PET scan. I hate these damn scans!! Its like hurry up and wait! Everything is riding on the results and the scan itself is excruciatingly slow!

Then I will have radiation done, not only pin point radiation, but there is a new type out there called lymphatic radiation (sounds scary). So I will get both.

If all of this goes off without a hitch then as soon as the radiation is done I go to Sloan-Kettering for my stem cell transplant.

At some point soon I have to meet with the stem cell transplant team at Sloan-Kettering, additionally I have to see the radiation team here locally, to devise a plan. These things should happen quickly, preferably before my first chemo on Thursday. So I may be a very busy girl next week.