October 16th - Home finally, after some very difficult days

Sorry for not updating my blog sooner. I find it very difficult to post when things are going poorly. If my medical situation gets too scary, writing about it makes it all feel more real and sometimes it's just easier to think about my illness as little as possible. It's like my brain goes into a protective mode to prevent a meltdown.

So here it goes. I went in Sunday morning for my stem cell harvesting. Although my counts were still too low, the doc thought my numbers were close enough, so I was hooked up to the harvesting machine for 4 hours. I don't know the actual name for the harvesting machine, but everyone, even the nurses agree that it looks like something out of Frankenstein's Laboratory. Afterward I felt very weak and tired and went back to the apartment to rest.

That night, things really started to go downhill. I spiked a fever, had a severe headache and had to go to the ER at Sloan Kettering. When I got there they started me on iv antibiotics and tested me for various infections. They also discovered that once again my red blood cell count was very low as well as my platelets. I received platelets right there in the ER and was admitted late that evening and when I went to my room I had another blood transfusion. I was also told that my harvesting earlier in the day had been a waste. I had collected 0 of the six million cells I needed!

I have to admit that the next 4 days after that are pretty much a blur for me. I was on a lot of pain medication (I have never in my life experienced such debilitating headaches), was severely anemic and barely slept. I had 3 more blood transfusions and at least 5 more bags of platelets. The doctors tested my counts every 6 hours and could not explain why they kept dropping despite being given all of blood and platelets. The scariest thing in the world is when the top doctors in the country look at you with no medical explanation for your condition! They did a CT scan and MRI of my brain, they were concerned that I had a hemorrhage around my brain caused by the lack of platelets in my blood. Luckily, tests came back normal. Then they had a theory that possibly I had some unidentified infection that was causing my blood cells to do strange things! But the good news was, I was starting to respond well to the antibiotics and my fever disappeared. By Thursday I was feeling better and my red blood cells started to behave, (my platelets not so much) but things were looking up. I never did received an explanation of what caused the infection or the kooky blood cell problem. The theory I'm going with is that my body was reacting poorly to the Neupogen injections that I had been doing for 2 weeks at that point!

Of course, while all of this was going on, I had to continue the damn injections. And I had to be wheeled down to the harvesting machine every morning for stem cell harvesting! I was what the nurses down there lovingly referred to as a "Slow Bloomer". The harvesting proved to be much more difficult than I was told, mostly due to my infection and difficulty maintaining blood cells. Monday was a complete loss, too sick to even attempt collection. Tues I got a measly 1.2 million and Weds 1.9 million. But on Thursday I collected 2.8 million! So I had 5.9 million out of 6!

Despite my begging and pleading, I was told that my doctor wanted me back again on Friday for a pathetic 100,000 cells and I would have to inject myself again with "Jessica Poison" aka Neupogen. So I did as I was told and as I'm lying there harvesting Friday morning at 10 am my cell phone rings. It's my stem cell doctor's secretary returning my call from yesterday (which one, I called a hundred times), advising me that I did NOT need to do the injections any more and that I did NOT need to harvest anymore!!! I was so angry!

But I did get on a train yesterday afternoon and I was able to come home to my husband and son and that is all that matters now.

I'll deal with it all again on Moday at my next appointment with my stem cell doctor in NYC. But I'm taking the weekend off from cancer.

Oct 8th - Couple of really discouraging days

Wednesday night and Thursday morning I was feeling very weak and tired. But I know that the effects from my last chemo are still very much with me so I wasn't surprised when I was feeling winded just from having to shower and get dressed Thursday morning.

I went in to Sloan Kettering ready for the first day of stem cell collection. I had been giving myself the nuepogen injections every morning since my chemo was complete. The doctor said that most people collect the necessary amount of stem cells in 2-3 days, some only need one day. So I had very high hopes that I might be done by this weekend. But, I was only setting myself up for disappointment.

My white blood cell count was too low to even attempt collection. Your count needs to be 6 minimum and mine was .6! And to make matters worse, my red blood cell count was so low that I needed a blood transfusion immediately. I was scared, but more than that I was devastated. When the hell am I going to catch a break? They whisked me away to the 4th floor and gave me a unit of blood. Then I spent the rest of the day at the hospital for various tests and appointments that they had me scheduled for. Finally, at the end of the day, I went to a two hour Stem Cell Transplant Orientation.

I have to say that by the time I was going to the orientation, I felt better already from the blood transfusion. I was actually able to walk 3 blocks between appointments. What a difference some red blood cells can make. (So a big thank you to my anonymous donor, and too all the blood donors out there!)

Today was also disappointing. Showed up again at the hospital to collect and was turned away because my white blood cell count was still to low. But since I had received the transfusion yesterday my red blood cell count was almost normal.

The lab is closed on Saturdays but open Sundays (I know, go figure), so I now have to wait until Sunday to attempt collection. But I'm trying to remain cautiously optimistic that Sunday will be my day!

Oct 4th - Pretty good day today

Today was considerably better then yesterday.

Yesterday morning started off on the wrong foot when I tried to do my neupogen injections in my thighs. The first one burned like crazy (not sure why) and the second one I totally messed up and couldn't seem to get right. I know it sounds like it should be easy, but I think I make myself nervous and then I freeze up.

I called my doctor's office and explained the problem and felt like even more of an ass for not being able to give myself a couple of shots to the leg.

I spent most of the day feeling very nauseous and didn't get out of bed much. Plus as an added bonus, those lovely shots are starting to make my back feel like it was run over by a steam roller. So I must be getting some of the meds in me :|

But this morning, I got up and did my shots with condfidence, they went perfectly and didn't even sting as much. I was relieved and now I feel like it's "mind over matter" and I just have to tell myself that I can do it (no matter how cliche that sounds) and it won't be a problem for me anymore.

Also, I felt much less nausous today that yesterday so I was able to eat really well. And I think when you get good food in you, it automatically makes you feel better all around. It seemed like my head wasn't in such a fog today.

The only bad news was that my visiting nurse that was supposed to come to the apartment today to show me how to care for my catheter never showed up. It was really important that she came today cause the flushing needed to be done today. But I'm proud of myself. Instead of freaking out, I read the little booklet a million times and I went ahead and did it all by myself. (Well my aunt was here to talk my through it, I mean without "professional help")

I am going to try to keep up my confidence cause I really think that attitude is extremely important when you are going through anything tough in life. So all things considered, today was a good day.

It's wierd how my definition of "good day" has changed so much.

Oct 1st - Done with augmented MICE

I was released from the hospital yesterday afternoon after a whole lotta chemo. I'm feeling very tired and am sore from where they put the catheter in my neck. I am also considerably more nauseous this time. My cell phone is still broken so I am feeling really bummed about that. Right now I am staying in an apartment with my aunt.

Before they let me leave they gave me a calendar with all of my upcoming appointments on it. Many tests and appointments before I can go home to Albany. Hoping to be home around the 11th or 12th.

This morning I began giving myself the daily injections I need to boost my cell growth. My first collection day will be on Thursday. They will hook me up to a machine that will filter stem cells from my blood to preserve them for later transplantation.

I have a visiting nurse coming in Monday morning to show me and my aunt how to properly clean and change the dressing on the cathether for my vein. I also have to lean how to flush it, which freaks me out. Sorry if I'm grossing you out with all of this.

I can't believe how much I have already put my body through and how my heart continues beat amazes me.

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. : )