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.

August 26th - New biopsy

I went in Thursday morning for my second biopsy. The surgeon went for the same spot as he did last time, the base of my neck. Hopefully he got a good enough sample for the pathology to be done. Unfortunately the effected node he had to remove this time was a little deeper in my neck then the last one, but since it was in the same area, he was able to make the incision at the same place. So I won't have another scar. Recovery hasn't been as easy as the last time. I developed a fever along with swelling and redness on my chest Friday morning and spent most of last night in the ER getting it checked out. They are guessing that I have a very slight infection and put me on some antibiotics. Im much better already, the fever is gone as well as most of the redness and swelling.

My next appointment is Sept 3rd with my local oncologist. Assuming the pathology come back as expected on the biopsy we will set up a treatment schedule. I imagine my first round of the new chemo will begin Sept 8 or 9.

August 11th - Consultation at Memorial Sloan Kettering

Yesterday was my big day at the big hospital. My stepfather drove me, my mom and husband down to NYC for my appointment.

I have to say that for having a reputation of being a big prestigious hospital, it didn't feel that way one bit to me. And I mean that is a good way. It was very compartmentalized. Once I got off the elevator and onto my doctor's floor, it actually seemed like an average doctor's office. I guess I was picturing herds of people waiting and taking numbers like at a deli counter. But the waiting room was small and everything moved smoothly. I hardly waited at all for the doctor which I wasn't expecting and all of the staff seemed very nice.

Once the doctor came in, everything went smoothly with very little surprises. I had a lot of time to do research and nothing that the doctor said was unexpected. The doctor herself was very young, which can be a good thing or a bad thing depending on how you look at it. She was very easy to talk to and willing to explain things thoroughly, never making you feel rushed.

So here is the plan as of right now. I have to have another biopsy done. The reason for this is they want to be certain that the cancer there now is still Hodgkin's and hasn't become a different type of lymphoma. This will be done locally, hopefully by the same surgeon that did my first biopsy.

Assuming it still is Hodgkin's (and the doctor is pretty sure it is) the next step will be more chemo. ICE is my new chemo acronym. This chemo regimen is really intense and it should only take about a month and a half to complete. The chemo will be done locally as well.

Immediately following the ICE chemo, I will have a stem cell transplant. This may be done locally or at MSKCC (hopefully at MSKCC, if I get my way). The whole point of a stem cell transplant is that it allows the doctor's to give extremely strong chemo that your body would normally not be able to withstand. Basically they will first collect my stem cells and store them. Then I will be hospitalized in a sterilized environment and they will give me a large amount of chemo which will destroy my immune system. After the chemo treatment, they will give me back my stored stem cells and my body will slowly get it's immune system back. It takes about three weeks for the stem cell transplant.

I've got a long difficult road ahead. But I have faith in God and very supportive family and friends to get me through. Thank you all for being there for me, all of the little things you do mean so much to me. Your prayers and encourgement help me keep a positive attitude and help me keep my faith as well.

August 2nd - The Nightmare Continues

I had my post chemo PET scan last Wednesday. Today was the big day at my oncologist's office, were I expected to haggle over whether or not to do radiation. Well, that never took place. You know it's going to go bad when the doctor starts off by saying, "I was thinking all weekend how to tell you this..."

Yeah, it went that well.

My worst nightmare for today came true. My cancer is "Refractory". In other words, it is now chemo resistant. Not only is the original mass in my chest growing since chemo ended, but the one in my neck has come back to life. AND the icing on the cake, now there is a third area, in the other side of my chest, that has a cancerous tumor growing.

This is how my doc explained what happened. Basically my chemo was going along quite well from what we could tell. The PET scan I had in May (2/3 through chemo) showed a significant shrink in the tumor in my chest and nothing at all left in my neck. Which would lead to the conclusion that the chemo was working well. However, at some point, a rouge cell got smart. It mutated to become resistant to the chemo that I was receiving. This happens to 1 in 10 people in my shoes, yeah I'm that lucky.

To make matters worse, the doctor said that it's possible that the third (new area) isn't Hodgkin's at all and could be some other kind of Lymphoma.

So the next step you ask? Well my doctor, as nicely as she could, divorced me. I need a larger hospital with a doctor specializing in Refractory Lymphoma to decide what should be done. The good news is, I already had a second opinion set up with a doctor at Memorial Sloan Kettering for the radiation decision. However, when they got my final PET scan, they decided to transfer my case to another of their doctors. So I still don't have an appointment yet, but I was promised it would be in the next two weeks.

Meanwhile, I am a wreck. The cancer is just growing and all I can do is sit here and twiddle my thumbs! I HATE CANCER!!!