October 21st - The violet bracelet epidemic

When I found out that I would have to postpone my stem cell transplant and stay here locally for a couple of months of "less aggressive" chemo, one of my first thoughts (well my first thought without expletives) was, "I need to spend the next few months reclaiming MY LIFE!" I don't want to just sit around and think about cancer. I asked the doc if I could go back to work or not. He gave me the green light and today was my first day back at the office since the end of summer.

A big part of my life before cancer was my job. And I miss it. Not so much the actual work, although I do like my work (most of the time). But what I have really come to miss the most is my coworkers and feeling like I have a purpose outside of the home. I really have to say that I have the most amazing and supportive coworkers in the world (and I'm not just saying this cause they read this). They are all really like a second family. And just like in a family, I am closer to some then to others, and sometimes we have our disagreements, but at the end of the day, we are all there for each other when it matters most.


All this being said, I guess I shouldn't have been surprised when a group of my coworkers decided to put together a fundraiser for me. Anyone who knows me in real life knows that I hate to have attention on me, so I was a really anxious when I first heard about it. Don't get me wrong, I am extremely appreciative of the support, I just don't like the spotlight. I also never wanted to be a "charity case". But I think I am starting to see things a different way after today.

As part of the fundraiser, a close friend/coworker, started selling violet color wrist bands in support of me and Hodgkin's awareness. She ordered a bunch online and started selling them at work as part of the fundraiser. All of this was going on while I was out of the office for my last round of chemo. She wore hers one day when she visited me and told me she had been selling "some" around the office. I was flattered that anyone would buy it and actually wear it. I guess they sold way better than she thought and she had to order more at one point to keep up.

When I went to work today, there were violet wrist bands everywhere! Not only were the people in my office buying them, but people in other offices in the building were also buying them! People I don't even know who I just see in the elevator lobby are wearing wrist bands! Everyone had them on, male, female, younger or older. Nobody seemed embarrassed to be wearing them. There were 60 year old male attorneys in suits were wearing them proudly!

So I get it now. It's not so much about raising funds, it's about showing support, friendship and selflessness. I have never seen such camaraderie. It's amazing how something so simple can make someone feel so loved and appreciated. :)

October 18th - More bad news (as if that's even possible)

Went back down to NYC on Monday to meet with my transplant doctor. The plan was to set up my radiation schedule and get a tentative date for my transplant. Cause after all, there was no possible way I could still have cancerous tumors after putting my body through such rigorous chemo it almost killed me, right?

Wrong. My PET scan came back and it wasn't good news. The tumors had shrunk, but they are still there. I was devastated by the news. This really tough chemo regimen was supposed to do the trick! We were all so sure of it, even the doctor. All of my plans for next weeks radiation and stem cell transplant came to a screeching halt. There are no words to express the disappointment I was feeling at that moment.

You would think that by now I would be used to getting terrible news and I am to a certain degree. I'm kind of becoming a professional patient. When the doctor is giving me the bad news I force myself into a kind of out of body experience. I listen, but I am mentally removing myself from my body and I talk to the doctor like we are discussing a different person. Its easier than talking about my own mortaility! After I leave the room, I then have the tears flowing as I walk out to the waiting area.

The following is from Wikipedias page on the 5 stages of grief, specifically when diagnosed with a terminal illness or catastrophic loss. I thought I would share some of it with you because every time I get a shitty cancer report I go through the stages all over again. And this really explains it best:

Denial - "This can't be happening, not to me." Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of positions and individuals that will be left behind after death.
Anger – "Why me? It's not fair!"; "How can this happen to me?"; Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is overly emotional due to misplaced feelings of rage and envy. Any individual that symbolizes life or energy is subject to projected resentment and jealousy.
Bargaining – "Just let me live to see my children graduate."; "I'll do anything for a few more years."; "I will give my life savings if..."
The third stage involves the hope that the individual can somehow postpone or delay death..
Depression – "I'm so sad, why bother with anything?"; "I'm going to die... What's the point?"
The individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the sick person to disconnect oneself from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed.
Acceptance – "It's going to be okay."; "I can't change it, I may as well prepare for it."

I try to spend most of my time in the "Acceptance" phase, but I have to admit the "Denial" stage is sometimes easy to linger in.

So what's next?

I begin 2 more months of chemo on Monday. This is my last shot at chemo, the only other cocktail available to treat Hodgkin's. It's called GND and I am putting all my eggs in one basket.

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.