Thursday, December 23, 2010

December 24th - Full Circle (damn you cancer)

Well it's only midnight (stupid insomnia). But the 24th of December last year was when the tumors were initially found. So while I'm really trying to keep the "Holiday Spirit" it is hard, especially knowing not only the past, but all that lays before me.

At my appointment at MSKCC (Memorial Sloan Kettering Cancer Center) this week I felt very overwhelmed. I knew what to expect next, it just made it so much more real on paper.

Okay so here's the synopsis of it. I saw both they radiation oncologist and my stem cell doc. they both agreed that my most recent PET scan looked pretty good from what they could tell. The final results were not to be available until later this week.

What they pressed upon me during my office visit, was not to get hung up on whether the PET scan was completely clean or not. The important thing is that they feel I am good enough to go into transplant. So honestly I've decided that I do not want to know the official results, I have to make it thought the transplant regardless and I might as well have as much hope as possible right?

I will go for a radiation simulation (set up) on Jan. 4th. Then I will begin one week of 2x a day outpatient radiation on Jan 10th. At the end of that week, on the 16th I will be admitted to the hospital for my transplant.

Once I am admitted, I will undergo another week of total body radiation and then 4 days of chemo before my transplant

So here I am, full circle. I really thought I would be cured at this point. But now I am just hoping to survive to see another Christmas.

Thursday, December 16, 2010

December 16th - Not feeling so well emotionally or physically

As I come up on my year anniversary of being diagnosed with cancer, I'm feeling very overwhelmed at all that lays before me. I have spent the last couple months not thinking too much about the transplant and now I feel like it's slapping me in the face again. I've been taking the time to review my 4 inch "What to expect during your transplant" binder again and it's all quite scary.

I have tried to ignore the statistics of survival and success rates, because I know that at this point they are not great. I am trying to stay as positive and optimistic as possible, but it's hard to keep that frame of mind all the time. Especially while having to review all your estate plans.

I'm also not feeling well. On top of the fatigued from being anemic, I've had a sharp pain in my neck for about a week now. My doctor said she believes it's just a virus of some kind and will run it's course, but it doesn't seem to be getting any better and I don't have any cold symptoms. I'm nervous because it's on the same side of my neck as one of my tumors. I guess we will find out for sure on Monday after my PET scan comes back.

I have a feeling that beginning Monday, things are going to start moving very fast. I will be scheduled for radiation right after New Years and will be admitted to the hospital for my transplant immediately after.

It just seems that up till now, every time things got bad or scary, I was able to dig down deep inside and find just enough courage and strength to get through the current situation. But it's not a bottomless well. I don't know where I'm going to get the strength from this time.

Saturday, December 11, 2010

December 11th - Finished GND chemo

Had my last chemo on Monday. It's been a difficult week. I think these doctors have it down to a science. They give you exactly the amount of chemo that your body can withstand, no more no less. Let's hope that it was too much for the tumors though and they are GONE.

Sloan-Kettering made another mistake (shocking, right?) and forgot to schedule me with a radiation-oncologist and didn't realize it until I called them to question it on Thursday. So they had to squeeze me in and because I need to see him before my transplant doctor, all my dates had to be moved around. So now instead of going the 22nd and 23rd, I now go for the scan on the 19th (a Sunday!) and appointments on the 20th. It's a pain in the ass cause it's Christmas time and I have to change reservations at the hotel and my husband works in retail and has to change his days off at the busiest time of the year. What makes me the most upset is that I know if I hadn't called them, they wouldn't have realized the problem until I was down there and then my transplant would have been really delayed.

For right now, I'm trying to take it easy and rest as much as possible. Thank God for online shopping. I'm feeling very fatigued and I would guess I'm anemic and might need another blood transfusion. I have CBCs again on Monday so we'll see.

Wednesday, December 1, 2010

December 1st - Dreaded December

If you had asked me four years ago, my favorite month was December. I always loved the holidays. Putting up the tree, decorating the house and finding the perfect gift for my loved ones. Seeing your child's excitement this time of the year, is the biggest and best gift for any parent.

From the beginning of December, I would listen to the Christmas carols I grew up to. The old fashion crooners, none of this Jessica Simpson BS. I would even listen to it at work. I remember listening to this same music as a child, rejoicing in the time of year filled with great food, friends and family.

Fast forward four years, and I just am not into it anymore, and I don't think I will ever be again. December now just brings sorrow and pain.

Today was my father's birthday. Three years ago today was the last time I was able to converse with him. We took him out to dinner to his favorite restaurant. A couple weeks later, on December 14, he went into a coma. It wasn't until December 24th that he came out of it and we realized he was severely brain damaged, unable to speak or move. Another very sad day. He passed away several months later. But the sorrow associated with that time, stays with me every December since.

Last year I had just started to get back into the holidays, I was trying to let go of the sadness and reclaim the happiness of the season. And then as you probably know, I found out I had tumor in my chest on Christmas Eve.

But, shortly thereafter they told me that I had the "most treatable cancer" there is and I was going to be cured in a short 6 months. So as sad as I was, taking down the tree, I kept telling myself, "Just think, next year when you take out this ornament and set up the tree you will be cured and this will all be behind you." Yeah freakin right.

So, as I stare at those same ornaments now, it brings me to tears knowing what lies ahead for me. I'm sorry I'm such a Grinch this year. I will try to be better next year.

Monday, November 29, 2010

November 29th - My letter to cancer

I wrote a poem. It's not very good, I'm sure my 12 year old could do better, but I thought I would share it anyway.

My letter to Cancer

Attacking a young mother and wife without warning.
Trying to take my life slowly, put my family in morning.

Your tumors growing silently, killing my cells.
But no one who looks at me, would think I'm unwell.

To say that I "hate" you is not a strong enough word.
Thinking you will take this body is absolutely absurd.

But as your disease continues to put me to the test,
I've become closer to strangers then anyone would guess.

I am now good friends with people that I never knew.
Other survivors, fighters and supporters to see me through.

These cancer warriors are filled with love, caring and strength.
They will help me win the battle, no matter the length.

Because I certainly won't go down without a fight.
To die at such a young age, is simply not right.

I won't allow you to take my son's mother away.
So I will keep pushing harder, day after day.

Tuesday, November 23, 2010

November 23rd - 3rd GND and other random things

First off, I have to say the fundraiser was a success! It was perfect, so many of my friends and family came out to show their support. It was very touching, for me, my husband and son. I will never forget that evening and looking back on it will help me to keep going in the difficult months that lay ahead. It was so sweet of my coworkers to organize it and donate baskets to be auctioned. Even with all this shitty stuff happening to me, I still am truly blessed to be surrounded by such caring people. I don't know how much was raised yet, but with the turnout we had, I'm sure it will take a big dent out of my travel and lodging expenses in NYC.

Now for the not so great update. My appointment yesterday was concerning. I saw the my local dr before chemo and she explained that she had received a new email from my doctor at SK and that his directives were different then how she interpreted them the first time. Basically that instead of getting GND every other week, I am supposed to get it every week! Eight treatments instead of four! Needless to say, I was very upset and confused! This is my life at stake! If it has not been given as often as it should be, then how is it going to be effective against this super aggressive cancer!? I couldn't have been more clearer with my SK dr about this regimen, and my husband was there at that appointment and agreed with me that the dr said, more than once, that it was to be every other week, 4 treatments total. My local dr apologized and said she agreed with me and that she had interpreted his directives the first time the same way I did, but going forward it would have to be every week and I would have to try to get more in before the stem cell then initially planned! I was so disappointed! I had this all planned out with me going back to NYC to begin right at the first of the year and this would push me weeks back. I was in tears in her office so she emailed my SK dr again to express my concerns.

Then, she gets an email from him again saying the opposite from the previous email. That we had been right all along and it was supposed to be once every other week four times! WTF, people! Are they trying to kill me!! This isn't like screwing up an order at a restaurant! I could have died from being over treated and I would have if I had gone alone with it!

Of course I called the SK dr this morning, and he did not want to talk to me but I persisted. When he finally did get on the phone he did exactly what I thought he was going to do and put the blame on my local dr for misinterpreting the email and suggested that this is what happens when you do the chemo elsewhere (although it was he that told us that it didn't matter where we did the chemo initially).

In the end technically, no damage was done. But I don't trust any of my doctors anymore. They seriously could have killed me if I hadn't been so vocal about it. But I'm just a patient name and ID number for billing purposes right? So sorry for the run on posting, but I needed to vent.

Thursday, November 11, 2010

November 11th - 2nd GND and flu in the house?

Had my second round of this chemo combo on Monday. No severe reaction to it like last time. Little bit of nausea but no vomiting, Yay! Just achy and tired, which I've grown accustom to now anyway.

Little bit of a scare on Tuesday. I woke up to find a new swollen lymph node in my neck. It was right above where the last cancerous one was taken out, I had an appointment at the doctor's office anyway for my neulasta injection, so I called and they said the doctor would see me if I just headed in a little earlier.

My doctor said that she believes it to be swollen in reaction to some sort of infection, not a new cancerous lymph node. Her plan was to wait a week and if it is still there to do an ultrasound and check it out. I of course, was freaking out and not willing to just take that as an answer. If the cancer is growing and popping up in new spots, then obviously the GND isn't working and we need to do something else right away! But I called my doctor at Sloan Kettering and he was in agreement with her. And when I spoke to the nurse there she asked me if anyone else around me was sick, because that might explain the swollen lymph node, but I told her no one was.

Tuesday afternoon, my 12 year old son came home from school complaining of a sore throat and a low grade fever. My husband took him to the doctors that evening and they tested him for strep throat which was negative. Since then he has gotten sicker and now his fever is hovering around 103. It's looking like he has the flu. I'm trying to stay away, but it's hard. No matter how much I'm concerned about my health, at the end of the day he's still my "baby" and I worry more about him then I do about myself.

The only good news is, this might explain the new swollen lymph node in my neck. I guess I just have to wait and see.

Sunday, November 7, 2010

November 7th - Chemo again tomorrow already

I really don't feel prepared for more chemo again tomorrow, mentally or physically.

My body is tired. It is not bouncing back anymore between chemo treatments. My first GND chemo treatment two weeks ago, did not go so well. I was very anemic already going into it and my doctor said my bone marrow is "tired". I was told that this type of chemo was NOT nauseating so I wasn't given the normal premeds that I have taken in the past. We started the chemo and I had a very bad reaction to one of the drugs in the regimen. My face and ears turned hot and bright red, I was dizzy and short of breath. They stopped and restarted the chemo 3 times to give me more steroids to force it into me.

The following night after treatment (Tuesday) I got a severe headache, similar to the headaches I was getting after the ICE chemo. Early the next morning, I had to go back into the hospital because I couldn't stop vomiting. They gave me dose after dose of anti-nausea medicine, but it wasn't until several hours later that I finally stopped getting sick. Then I spiked another fever, had to get iv antibiotics again and yet another blood transfusion. I was released from the hospital on Friday.

I saw my doctor again this week, and we discussed the situation. I will be taking all of the premeds this time for nausea so hopefully I won't get so sick this time around. They will also give me a large dose of steroids and benedryl before starting the chemo to hopefully avoid the adverse reaction I had last time.

Wish I had better news to report. Hopefully tomorrow will go more smoothly,

Thursday, October 21, 2010

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. :)

Tuesday, October 19, 2010

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.

Saturday, October 16, 2010

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.

Friday, October 8, 2010

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!

Monday, October 4, 2010

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.

Friday, October 1, 2010

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.

Thursday, September 30, 2010

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.

Tuesday, September 28, 2010

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.

Monday, September 13, 2010

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. : )

Saturday, September 11, 2010

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.

Friday, September 10, 2010

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.

Thursday, September 9, 2010

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.

Friday, September 3, 2010

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.

Saturday, August 28, 2010

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.

Thursday, August 12, 2010

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.

Monday, August 2, 2010

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!!!

Friday, July 9, 2010

July 8th - Post-chemo follow up

Okay this didn't go as I had anticipated. I am troubled by my appointment today, which is why I am writing this at 1 am! I need a little advice from my friends. My doctor doesn't want to do radiation on me as a preventative measure, assuming my next PET scan is clean. I have been told by many others that radiation is the standard after chemo in Hodgkin's treatment regardless of what the PET scan might show. I had a significant tumor in my chest going into this and it needs to be GONE. I haven't felt the need to question any of my doc's recommendations up to this point. But now I feel that I may need to get a second opinion. When I raised my concerns about foregoing the radiation, I felt like she dismissed them with a "Because I said so" approach, which was very surprising coming from her. She has had excellent bed-side manner up to this point and is usually very patient and willing to explain her convictions. The fact that I am even questioning her expertise troubles me. I feel like my oncologist has been my personal guardian angel through this. My faith and trust in my doctor has been unwavering, and tonight, I feel just as confused and scared as I did 6 months ago. When will the day come when I can put these "life or death" type decisions behind me?

Sunday, July 4, 2010

June 28th - 12th and Final Chemo

Sorry for my delay in blogging. I had my final chemo on Monday and I wanted to wait a bit to post. I didn't want my post about my last chemo to sound whiny, so I wanted to wait a few days for my overall whininess to dissipate. Also, the neuropathy in my fingers makes typing not so fun.

The last one was very difficult. On Tuesday and Wednesday, I couldn't get out of bed or walk for that matter. I refused to let my husband leave my side because I really thought I was dying. That's how bad it was. I was also having difficulty swallowing, so on Wednesday, I went back to the doctor's for more IV fluids. I wasn't happy because my doctor was on vacation and I was sure when my doctor's colleague saw me, he was going to admit me to the hospital cause I was in such rough shape. But all he said was, "Just be thankful this was your last one, your body wouldn't take anymore of this." He also explained that the difficulty swallowing, moving my neck and walking was all attributed to really bad neuropathy, and would pass. By Wednesday night, things had improved and I was able to get out of bed on my own, and walk, although my husband said I was "leaning to the left". I just kept thinking of a car with a bad alignment when he said that : )

And now this weekend I am doing much better. Neuropathy is still in my hands and feet, but much better than it was. Also still a little fatigued and a bit nauseous, but each day is an improvement over the last and I know now that it is only a matter of time until I am back to my "old self".

So here I am. I made it. And it really sucked. I wouldn't wish this experience on my worst enemy.

Wednesday, June 16, 2010

June 15th - Chemo #11 (one more to go!)

Wow, this one really kicked my ass this time! Even though mentally I am persevering, my body is screaming that it has had enough. I came home yesterday after chemo and I was so fatigued I literally couldn't get out of bed for hours. I barely had the strength to roll over. When I finally did get up, I felt like my arms and legs were weights. Then on top of all that, I later got complete neuropathy in both hands and arms (which basically feels like numbness, but with a dull achy feeling.) It was horrible, I think I slept a total of 3 hours last night. I'm doing better today thankfully. Just the usual stomach problems and flu like symptoms.

During my appointment, I tried to discuss with my doctor about the elephant in the room (radiation), but she won't discuss it with me until after my final PET scan. She did say I am a "boarder-line" case and because of this I have a feeling she will ultimately let me decide.

My doc is on vacation in 2 weeks, so it looks like I will be going for my final chemo on Monday June 28th. Apparently I am doing so well they are going to do my final chemo without a doctor exam first!

June 28th will be like Christmas morning! Because after every miserable moment that passes that day, I know it will only get better for good this time. : )

Wednesday, June 9, 2010

June 9th - Having cancer is such a pain in the @ss (or back?)

Nausea is gone until next time, YAY! But the back pain and fatigue are killing me. I am wearing out my heating pads big time. I have one on the couch downstairs and one in the bedroom. I recently had to replace the couch one, because my "Cujo" rat terrier decided to eat it. At least it's cooler this week. I don't have central air and it sucked to lay on a heating pad all day in 90 degree heat! But the worse thing is driving. Must have something to do with the way the seats are made in my car. When I'm the passenger it's fine. I can squirm around or curl up in a ball and take the pressure off it, but when you're driving that's not advisable.

The fatigue is bad too. Long gone are the days I could spend hours shopping at the mall. I barely have the energy to run to Stewart's for milk. Seriously, as much as I used to hate grocery shopping, I truly despise it now. I am becoming a hermit. I try to leave the house as little as possible. I would say that my wallet is appreciating the break from shopping, but it really isn't experiencing any relief, due to my addiction to Amazon and Ebay. And I only have to leave my heating pad for a second to open the door for UPS. Not to mention the added medical bills. I really don't know what people do without insurance.

So my back hurts and I am totally exhausted and I have to drive to the doctor's office for blood work. : ( It is such a pain the @ss. Drive 30 minutes and fight the biggest construction zone in the capital district, to be stuck with a needle and told my red blood cell count is low, which obviously, I am well aware of given the level of fatigue I am feeling. Arrrgggg!

Ooops, I gotta go, UPS is at the door. And I'm done ranting now, thanks for listening, or reading. Only two more chemos to go! And then I promise, I will never complain about anything, ever again. (Please don't hold me to that, but seriously, I will do my best.)

Friday, June 4, 2010

June 1st - Chemo #10

Sorry for the delay in posting about my latest chemo. I have been really really sick this time around, so I haven't felt like talking/writing about it. Had the chemo Tuesday morning and by Tuesday night I was already feeling nauseous. Went back in to the doctor's office on Wednesday for Neulasta and more stomach meds (didn't do a lot of good). So I am just trying to ride it out, constantly reminding myself that I only have to go through this two more times.

In fact, I am so close to the end of my "Chemo days" that I am now on to worrying about the next step, radiation. The doc still hasn't said one way or another on it. But I have worries about having it and worries about not having it.

So here's the plan as I understand it. I have my two more ABVD chemo treatments, the last one being on June 29th. Then I have to wait a month before having my PET Scan, which will hopefully be clean and basically mean I am in remission. And it is at that point that a decision needs to be made about radiation.

In the mean time, I think I will read up on radiation a bit. I need to understand the risks vs benefits, so when the time comes to have that discussion with my doctor, I will know what I am talking about.

Monday, May 31, 2010

May 31st, Happy Memorial Day

Hope everyone had a great holiday weekend. I did. Riley and I visited our friends at their camp over the weekend and we had a blast! Great weather, food, canoeing and great company. Doesn't get any better than that! But, It is almost sad to have these few "normal" days in between because it reminds me of what I am missing.

Now, have I mentioned how much I hate f*%king chemo??? I can't sleep tonight knowing what I am headed into tomorrow! I hate the night before almost as much as the day of. I really feel like I am walking a plank and tomorrow I will be the scared little puppy being dragged to the vet/oncology office in the morning. I am now experiencing what they call "anticipatory nausea", which means I get sick just going into to the office. After I am home from chemo, I have flu symptoms for days, coupled with severe nausea and the only recourse is to go back into the office for more meds, which makes me even sicker (remember anticipatory nausea), so around and around it goes.

Only thing keeping me going is that I only have three left!!! But even three at this point seems like a mountain to climb. Each treatment gets harder and I hope my body can withstand the last 3.

I better end this post I am getting nauseous just typing about it.

Monday, May 17, 2010

May 17th - Chemo #9 and PET scan results

First off, I should let everyone know that I had a great weekend. My symptoms were almost nonexistent and I was able to go out and walk my dogs and even do some yard work. It's nice to have these few good days in between, it makes me remember that I won't be dealing with this forever.

PET scan results from last week were good. The tumor in my chest is down to 1.5 cm with a small amount of uptake (for those of you not familiar with these tests, little uptake means not alot of cancer there). Also the cancer in my neck is listed as "resolved" Woo-hoo!

I was secretly hoping for it to show no uptake and for it all to be "resolved" but you know me, I always set the bar a little higher...but I still have 3 more chemos, and I am positive that it will show zero uptake when I am done with my 12th.

With the cancer still present, my doctor still can't say whether or not I will need radiation. That decision won't be made until all of my chemo treatments are complete and I have another PET Scan. I should be glowing like a Christmas tree after all this radiation : )

We are also going to treat my nausea a little more aggressively this time, since it was so bad the last time around. I will go back tomorrow and get my half shot of neulasta and different anti-nausea meds and IV fluids.

Of course with the good news comes some slightly not so good news. The doctor and I believe that my lungs may be receiving some damage from the chemo, albeit very slight. One of the chemo drugs I am on, can cause irreversible lung damage so it is common to test the lungs though out the treatments. I am going for my PFT's (Pulmonary Function Test) on Wednesday.

May 17th, yes the results are in, but I have something to say first!

The results were good, but I have something else I've been wanting to say. The amazing thing about such a shitty diagnosis is, I feel it truly brings out the best in already wonderful people. I need to thank all of you for being so supportive of me. I already knew I had great friends and family, but your compassion and love has been phenomenal.

To my work friends -You are, like I've always said, my second family. Thank you for all of your prayers, cards and well wishes. I feel very loved and appreciated. Also, I know it must be tough not having me there and I never once have felt pressure from any of you to "get back to work". Thank you for that. I love you all dearly and I think we will all be so much closer having gone through this. I can't wait to get back into my routine in the office. Believe it or not, I am actually missing the work too! I love been busy and challenged so I can't wait to resume my daily life.

To my cancer survivor friends - Wow, just wow! You people are astounding. I also feel like we are family, even though we have not known each other long, because of the connection we share. You have all provided me with so much inspiration and hope! I don't know that I would be able to make it through this without you. The connection that cancer survivors share is a bond like no other.

To my close friends and family - I always knew I had the best family, both immediate and extended, but now I truly appreciate each and everyone of you more then I can express in words. It's the little things you do for me that matter more than you know. My mom and husband have been extremely helpful with Riley, and because of this, he has not had to miss out on anything even with his mom being sick. My stepfather is very supportive and always tells me to keep my chin up, and when he tells me I am going to be fine, he means it and I believe it! My stepsister is an oncology nurse (need I say more?)! She is always there to answer a question for me and in the beginning, she hooked me up with all the best doctors so I didn't have to do a thing. Also, my family in other parts of the country have always been there for me to chat with and run things by. They even don't mind just listening to me cry if I need to. I feel so blessed to have prayers being said for me from all over the place!

I think that the emotional support you get as a cancer patient is JUST as important as the medical support from your doctor. And that's why once I beat this thing, it is a victory I will attribute to you and the doctors both.

Sorry for the mushy-gushy post, hopefully you don't get cavities. But I meant every word of it.

I Love you all.

Wednesday, May 5, 2010

May 6th - Feeling a little overwhelmed today

I am taking this round of chemo particularly bad. I think that my body is starting to get worn down and it has really had enough of these chemicals being pumped through me every other week. The nausea is horrible, I have to medicate myself constantly to keep from vomiting. Also, all the little annoying side effects seem to be magnified this time around. And the back pain hasn't even started up yet! Chemotherapy is like being on a roller coaster. You have the treatment and you go really far down and then you come back up again just in time for the next treatment which pulls you right back down again. The scary part is, as you go on, the peaks are not as high and the valleys keep getting lower and darker with each drop down. I feel like the chemo is killing me, and it truly is. I have chosen to poison myself over allowing the cancer to poison me.

I am extremely anxious about my PET scan next week on the 11th. Please keep your prayers coming. I need to hear that my PET scan shows little to no cancer left. With that positive news, I know I will be able to make it through to the end of treatment. Thanks guys.

Monday, May 3, 2010

May 3rd - Chemo #8, after a great weekend I really didn't want to go in

So first off, the good news. My back pain subsided on Friday and by Saturday I was up for all the the events at the Stowe Weekend of Hope, in Stowe VT. It is a cancer conference that attracks hundreds of people from all over the Northeast. There were back to back discussions on different aspects of cancer care. So Heath and I had a very busy day on Saturday. We met some amazing survivors of all different types of cancer and from all different backgrounds. It is unbelievable how much we all have in common. You couldn't find a more kind and inviting group. All of the volunteers and staff members were extremely caring and helpful. I sat in on some very useful discussions.

There was a Young Cancer Survior's discussion that was particularly helpful for me. Many of the survivors speaking, had to deal with similar issues that surround fighting cancer while trying to raise a family and keeping your career in check.

In the afternoon, I was invited to go for a 4 mile run/walk with the LLS Team in Training members there, I am proud to say, I made it the whole way! (Last, of course)

There was a dance benefit that evening that Heath and I went to, and I was able to spend some time with the other young survivors and get to know them a little better. I actually got some great tips on meds that I am trying with my doc this time around.

I was sad to come home Sunday, especially knowing that I was going to get chemo again and feel crappy all over once again.

Riley cheerfully reminded me this morning that I am now 2/3's of the way through. He is so funny sometimes. He rarely talks about it and just when you think he isn't paying attention to stuff like that he really surprises you.

The chemo it's self was ok today. They are having to give me more and more stomach meds each time because I get nauseous even while its being administered. Unfortunately, most of the time, the side effects of chemo are cumulative. So they build in your body and get worse with each treatment. But they do have some great anti-nausea meds out there, but they make you extremely tired. Hey, I'll take walking around like a zombie over throwing up anyday! But, even with the good meds, the first 3 days or so are miserable and I haven't been able to keep anything down today.

I will go back to the dr's office tomorrow for IV fluids and more stomach meds.

Thursday, April 29, 2010

April 28th-ish? It's after midnight so I guess its the 29th

Crazy exhausted, but I just can't sleep. I would love to be able to blame it on the chemo, but I have had many nights like this long before my cancer diagnosis. Although, the steroids I am on can't be helping.

The days just seem to mush together. I rarely leave the house anymore, because the fatigue that comes after just doing the most mundane tasks isn't worth it. And if it isn't the fatigue it's the back pain that seems to never relent. It seriously takes such a tremendous effort just to get up and get out of the house most days. Grocery shopping has become my arch-nemesis. It's a good thing my kid loves hamburger helper and spaghetti! The good news is my complexion is at it's very best, as I only put make up on once a week, if that.

I look back at my life just a few months ago and wonder, "How did I do all that at once?" Raising a family, working, spending time with friends, working out, shopping and I still had time for fun every now and then.

I hope soon to get back to that, back to my life. I really miss it.

Wednesday, April 21, 2010

April 19th - 7th chemo and a very sad week

I had my 7th chemo on Monday, went fine, no surprises. My white blood count was fine thanks to the Neulasta. Lots of stomach problems since then, but no surprise there.

Unfortunately, I had some very sad news this past weekend. On Saturday, my beloved grandfather passed away at the age of 84 at his home in Florida. He was my last surviving grandparent. His health took a very quick turn, and there was not much time to say "goodbye". I miss him dearly, and wish I could have been at the service yesterday. He was truly an amazing man and a hard worker. He spent his whole life serving his community in so many different ways. He was a veteran, a police officer, a firefighter and head of security in the gated community he lived in. He never stopped helping people, and he always did it with a smile on his face. My grandfather always appreciated family and loved us all dearly, especially my grandmother who passed about 2 years before him.

He was very concerned about my health in the past few months and I really wish he could have seen me beat this!




I love you Grandpa Pat! XOXO

Wednesday, April 7, 2010

April 7th - All right Neulasta, work your magic!

I went back today for my Neulasta injection, and I must say, those shots are not enjoyable. They sting quite a bit. Similar to a tetanus shot. But now I just have to bide my time till it kicks in. Given the nice weather, I decided to quarantine myself to my back yard instead of my bedroom. So my plans were, after I got my Neulasta I was going to come home and sit in the back yard with a book and relax. Not feeling too bad today, just my typical day after chemo weakness and fatigue.

However, nurse Ratched had different plans for me. She said I look dehydrated and that it was in my chart to give me iv fluids and anti nausea meds (including more steroids) today! For those of you not experienced in these types of things, that would mean me trapped in the chemo room, hooked up to an iv for at least a couple of hours! No thank you! I am only slightly nauseous and I have pills I can take if it gets too bad. And there is nooo way I am dehydrated, I drink so much water, I might as well have an office set up in my bathroom. Plus, more iv steroids means not sleeping, hot flashes and other fun side effects for the next couple days.

I walked right on out of there. What can I say, I'm a rebel.

Tuesday, April 6, 2010

April 6th - My exciting 6th chemo!

Extremely eventful morning! First and foremost, today was my 6th treatment! That's right folks, SIXTH out of TWELEVE! Halfway point! Yay! That alone makes it a special day, but that was only the beginning...

So my chemo was scheduled for a Tuesday this week instead of my normal Monday routine, because my doctor is on vacation all week and her partner doesn't work Mondays. (Yes, I know, very small office, but I actually like it that way). Anyway, after my last chemo I was not given the Nuelasta, because my doctor wanted to see if that was causing the kidney (back) pain. So I knew going in, that because I didn't get the Nuelasta the last time, that this blood count was going to be low. But I had discussed this possibility with my doc last week and we decided that we would go ahead and do the chemo as planned and do the Nuelasta the next day.

So I go in this morning with a sore throat and stuffy nose and sure enough it was pretty damn low, a lot lower than I expected. My doctor's partner came into see me and he was 50/50 on how to proceed, he explained my options and pretty much left the decision up to me. Doing the chemo today was taking a risk, but delaying it is also taking a risk.

If I decide to delay it, this would be my second delay. The doctor explained that delaying it again would lower my cure rate, albeit, very slightly. It is important to keep your chemo on schedule as much as possible, especially with Hodgkin's. Hodgkin's cancer cells are very rapidly dividing cells, quicker then many other cancers. Therefore, you run the risk of the cancer spreading in between chemo treatments if they are given to far apart. Going through with treatment is risky because the Nuelasta (which will be given to me tomorrow) takes 5 days to work and the chemo given today is only going to make my white blood count drop further during that time. With little to no white blood cells, you run the risk of getting an infection and winding up in the hospital. I really wish MY doctor was there to talk to, but the nurse informed me that my doc had received my blood test results at home and was on board with whatever I decided. Being the daredevil that I am, I said go for it. I am praying that I made the right decision. I am quarantining myself to my bedroom!

But that was only the start of the fun. While I was getting my chemo, a bank right up the road from the office was robbed at gunpoint! The suspect got away with $40,000 dollars and was on the run, so the doctor's office was put on lock down! No patients in no patients out. A helicoptor was circling and the air raid sirens were blaring outside the windows! Finally the lock down was lifted and I got to leave. Believe me, the last place you want to be trapped is your oncology office. As much as I like the staff there, I associate the place with very bad things.

Anyway, wish me luck, from a distance. And if you do happen to see me, please don't sneeze or cough in my direction. : )

Monday, March 22, 2010

March 22nd - Chemo #5 and CT results

Really quick post, just to update you as promised. I got my CT scan results, the mass in my chest is about 50 percent its original size and my neck seems to be clear of cancer completely! All good news and just what the doctor was hoping for. The mass in my chest may never disappear totally. In many people with Lymphoma, the larger mass just shrinks and the cancer cells die. Basically, it is just benign scar tissue left behind. When I am done with all my treatment and in remission, they will do PET scans periodically to be sure that there is no activity.

But all this cancer fighting comes does not come easily and my stomach is already starting to act up, so I am going to take some meds and try to nap!

Sunday, March 21, 2010

March 21st - Chemo tomorrow (again already?)

Hi guys, sorry I haven't posted anything in a while. I haven't really felt motivated to write. As I had mentioned in my last post, my past chemo treatment was hell and I have been kinda feeling down. I finally got over the extreme nausea early last week. But I had really bad kidney pain after that. I haven't really had much a break from it all. I started to finally feel better Thursday and I have been trying to do as much as possible this weekend, as it is all down hill again tomorrow. : (

I don't think I have mentioned the kidney pain I have been experiencing on the blog yet so for those of you who don't know, let me fill you in. Pretty much since my first chemo, I have been experiencing pain midway down my back on both the right and left hand sides. Because of the location, it is assumed that it is my kidneys. The pain started off being very mild, but with each chemo treatment it seems to get worse. The doctor isn't sure what is going on. My kidney function is fine according to my blood work and none of the drugs I am on are supposed to cause such a side effect. Apparently this is not a common problem. So the doctors and nurses have offered all different theories, kidney infection, kidney stones, kidney spasms? (that's a new one, didn't know the kidneys could spasm.) They haven't seemed too concerned about it. But they're not the ones dealing with the constant pain!

I had a CT scan on Tuesday. They took pictures of my neck, chest and abdomen (kidneys). This was just a progress check to see what the cancer is up to, but the doc decided to check the kidneys out at the same time. I am super anxious to find out tomorrow the results of the scan.

I'll be sure to share the results, I promise.

Wednesday, March 10, 2010

March 10th - My 29th Birthday

Not a lot to celebrate today.

I hate to report that the new anti-nausea regimen the doc tried on me is not working, in fact I am sicker now then ever. They gave me a new drug during chemo called kytril which is supposed to be great and last 24 hours. Well it only lasted about 10 for me and then I was up all night Monday night into Tuesday extremely sick to my stomach. And of course I couldn't sleep because of all the steroids they give me during chemo.

So I went back to the doctor's yesterday as planned and they gave me Aloxi, another "great" anti-nausea drug and more steroids. I did get immediate relief from it and I was told the Aloxi would last 3 days! Liar, liar, pants on fire! Well it did manage to control my nausea until about 5 am this morning. Now I am extremely nauseous, despite taking my 3 anti-nausea pills, Emend, Zopran, and Ativan. And on top of feeling extremely sick to my stomach, I'm having horrible hot flashes and my face is as red as a lobster, thanks to all of the iv steroids.

I really think they should come up with a way to put you in hibernation during your period of chemo so you don't have to experience these things. In the mean time, I am still fighting! I keep telling myself it will be worth it in the long run. In about 4 months from now, I should be in remission and able to declare myself a cancer survivor. I will do my celebrating then.

Monday, March 8, 2010

March 8th - Look at me go! Blogging two days in a row!

Well the forth chemo is over with. And I am happy to report, it was uneventful for the most part.

One thing I have to mention is that I am truly appreciative of my doctor. My oncologist is the best in my opinion. She is not only smart and experienced but, she listens to me. I never have really dealt with a doctor, especially a specialist, who was so receptive to my ideas and opinions. For instance, she didn't want to give me the Neulasta this time, because my counts were so good, but I insisted. I know my body and I know that they are going to crash again without it. I would rather suffer a few days of bone pain then have a really low white blood cell count and run the risk of infection or further chemo delays. So she agreed to continue it. Also, I told her that I was not happy with my anti-nausea drugs and she is trying new ones out on me to try to better control that symptom.

I will try to post again in another couple of days to let you know how I am doing. Thank you everyone for all of your support and prayers.

Sunday, March 7, 2010

March 7th - Night before treatment 4

First off, the good news is all the bone pain from the Neulasta paid off. My white blood cell count was double a healthy persons and 6 times what it was at my last check.

Sorry I haven't blogged in so long. Sometimes I forget that people really do read this as a way of checking up on me and sometimes it takes a friend pointing out my lack of blogging to get me motivated again to write.

Truth of the matter is I really haven't had much to new to say lately. I hate to sound like a whiny little bitch all of the time. I feel like that is what I am turning into sometimes. I have read other cancer surviors' blogs and during their fight they seemed to stay mostly positive. As time goes on it is becoming harder to stay postive.

I am only 3 treatments in and I feel emotionally exhausted. It was easy in the beginning to be full steam ahead, but with each treatment it gets harder. I feel like I am soooo far from the finish line, these have been the longest couple months of my life.

I went out to dinner last night with my husband to celebrate my birthday. My birthday is on Wednesday and I figured it would be safe to go out to eat this weekend because my last chemo was almost 2 weeks ago and I shouldn't still be sick at this point. But once the food arrived I could bearly eat my dinner, kept starring at the bathroom wondering how fast I could fight through the crowded resturant to get there. Would I make it in time? That was about all I could focus on. So I took my anti-nausea medicine (which makes me extreamly drowsy) and was on the couch sleeping before 8:30.

I just want my life back.

PS - I promise to make my next post a more positive one.

Friday, February 26, 2010

February 26th - Hellloooo Neulasta!

Okay...either I am having some side effects from Neulasta or I've developed severe arthritis in my legs and lower back overnight. Being that I have yet to hit 30, I am leaning towards this being a nasty effect from the Neulasta. If I sit on the couch and don't move it isn't too bad. But I am walking like an 80 year old. I read online that lots of people experience bone pain from it, but I didn't see anything on how long it stays. Hopefully this doesn't last too long.

The good news is, I am told that the pain means the drug is working. You get it the pain because your bones are in overdrive producing white blood cells which my body desperately needs at this point. So the pain isn't for nothing, at least my body is accomplishing something.

So it looks like another day on the couch for me. : ( I really am getting antsy to get back to work. I miss my job and my coworkers. I haven't been to work in a week, and I don't feel like myself without my job. It is a big part of who I am and I feel like I have already lost alot of my identity because of this cancer. That has been the hardest part for me, I really grieve the loss of my lifestyle sometimes.

Wednesday, February 24, 2010

February 24th - Wow am I ever tired!

After the little delay from my white blood cells not behaving, I had my chemo on Monday. Followed by the Neulasta shot yesterday. They both were very uneventful, but I feel exhausted. I probably slept 20 of the last 24 hours and I am still exhausted. I think the flu like symptoms I seem to get after every chemo have been made slightly worse from the Neulasta, but who knows, that could just be in my head.

I'm hoping to be able to get to work for at least partial days by the end of this week. Believe it or not, I miss my work, sitting at home staring at the walls with no energy to get up off the couch is not very much fun.

For those of you who aren't aware, a woman I know through Gilda's, is running in a marathon for LLS in June and has made me one of her honored patients! Her name is Angelique and she is a Lymphoma survivor as well. I can see where she gets her name from, she has been like an angel to me. She has been giving me advice and piece of mind since before I began chemo. She managed to stay positive though out her fight with cancer and she is truly an inspiration to me.

I know I have mentioned before how much I love the Gilda's Club as a whole, but I can't stress enough how wonderful of a program it is and how supportive the other members are. I know some people who have been reading my blog are not members yet and I really have to say you won't regret it if you decide to join. It's free, so what do you have to loose? I really don't know how I would make it through this without Gilda's.

Friday, February 19, 2010

February 19th - Disappointing end to a turbulent week

I has been a very difficult week for me. Lots of highs and lows. It all started last Thursday with my trip to the ER and then the next 4 days in the hospital. I went in with severe acid reflux and vomiting. I was also very dehydrated. An endoscopy revealed a swollen esophagus and stomach, another fun side effect from chemo we are guessing? While I was in the hospital, I also spiked a fever, with no explanation. My blood counts were all relatively good, and it went away as mysteriously as it came. Spent four days on IV fluids, stomach and pain meds.

There was a silver lining...while I was in the hospital the doctor ordered a chest xray. The xray revealed that the mass of lymphoma in my chest shrank so significantly that it was not even visible! We were expecting it to shrink quickly, but not disappear so fast! So all of the side effects from the chemo are not being experienced in vain. As much as I feel like the chemo is killing me, it is actually saving my life. I guess you could say chemo and I have a love/hate relationship at this point.

I was released from the hospital on Sunday and the last few days have been quiet, with minimal side effects. Still have the severe acid reflux from time to time, but it doesn't last long. I even went into work on Wednesday and Thursday. So I was gearing up for my 3rd chemo this morning. Went to the oncologist's office and more bad news...white blood cell count is too low, can't do chemo. Damn. As funny as this might sound, I am so disappointed! I want this behind me more then anything and prolonging it is more torturous then just dealing with the stupid side effects.

I will go back in on Monday, by then the doctor believes my body will have produced more white blood cells and we will be able to do the chemo. And I will be given an injection of Nulasta (a white blood cell producing drug) following my chemo to prevent this from happening again.

Saturday, February 6, 2010

February 5th - Chemo two I hardly knew you?

Chemo two so far has been very different then chemo one. I was told that your body would act simalarly to each chemo, given that the same drugs are used and what ever reaction you had to them would be the same. Appearently not true in my case. Either that or they made some mistake and gave me someone elses chemo.

It was different from the start. Fortunately I sailed right through the actual process with no side effects other then the general drowsiness caused by the benadryl that they give you. Then I came home and I was wide awake. I didn't sleep for hours and hours like the last chemo day.

That's where the good differences end and the bad ones began. In the afternoon, I started to develop severe lower back. The only way I can describe it is like the pain you have in your back from menstrual cramps only much worse (sorry guys, I know I lost you on that analogy). I was hunched over and could hardly walk. I had to take pain pills to get it to subside which finally put me to sleep, thank God.

I also am having insomnia. I never knew before chemo that it was possible to have fatigue and insomnia at the same time. Basically, you are exhausted and run down, but sleep never comes. That's why I am sitting here blogging at 2:30 am instead of getting some shut-eye. I took more benadryl so hopefully that will kick in and I will be headed to Zzzz land in no time.

I am also worried that I may be catching the bug that my 11 year old has had for the past week. He has had a sore throat, stuffy nose and fever for days now. I have a sore throat and runny nose. Thankfully no fever. We will see what tomorrow brings.

Sunday, January 31, 2010

January 31st - Hair today, gone tomorrow

Well I did it, I shaved my head. I probably could have waited a bit, the hair loss I was experiencing was minimal, but I am sick of having no control any more and this is mine to control! So I did it! Head's kinda cold now though, maybe I should move south, could I write it off as a medical expense? : ) I have a wig, it looks nice. I guess I am confusing some people at work who didn't know about the cancer, because I went from long hair to short and back to long again in the last month. Wait until I pull out the pink wig! I'm going all out "Lady GaGa"!
(Disclaimer: For the older generation reading this, Lady GaGa is a very eccentric pop star who is know for her crazy outfits and wigs. See below)

Anyway nothing else exciting to report on the medical side of things. I did go in for blood work on Thursday. My counts were all low, but they didn't seem too concerned. I guess they were still in the "Normal for chemo" range and I didn't ask for specific numbers, I really don't need another thing to google and obsess over at this point.

Good news is, side effects from the first round of chemo seem to be lessening. Even the nausea is getting better. Still much more tired then normal though. But looks like I may be getting a little bit of a "break" before my next chemo on Friday.




(Lady Gaga, where do I get that bow wig?!)

Monday, January 25, 2010

January 25th - Can't sleep

Ok, it is 5 am and I have been officially clock watching since 3. So I might as well blog.

These side effects are really starting to get to me. I think I was more tolerant of them at the beginning, but they have a cumulative effect on you. It's like, ok, little nausea, check. Little heartburn, check. Jaw pain, check. Little headache, check. Fatigue, check. Then...BOOM not the chest pain too!!!

And on top of all of this, all you want to do is sleep. In fact I feel like a moody 2 year old most of the time. The only time I really feel good and rested is when I am first waking up from a nap and then I feel like I desperately need another one 2-3 hours later.

Friday, January 22, 2010

January 22nd - 1 Chemo down, 11 to go!

Wow, what a week! Lots of stuff accomplished. On Tuesday, as expected I went in for my bone marrow test, and got the results of my PET Scan. The PET scan showed no surprises! Cancer was only where it was expected. Yay!!!

After that news I wasn't even that nervous about the bone marrow test. I was so elated, I figured I could take anything! Well that only lasted for the first 5 shots in the rear. By the time the doc started "drilling" through the bone for the marrow, I was feeling it! Extremely painful, but my step-sister (who happens to be an oncology nurse), was there with me to talk me through it.

Then on Wednesday I had my very first Chemo. I had a side effect to one of the meds which left me short of breath and a little scared, but the doctor and the nurses where right by my side and handle everything wonderfully. I really can't say enough about the wonderful staff at my NYOH office.

Afterwards I slept most of the day and night. Had horrible chills and flu like symptoms, but slept so much I didn't spend much time noticing them. Little to no nausea.

Thursday brought much of the same, except much less fatigue. I was able to go to work, I just took some advil and was able to make it through to 2pm at which point I drove home and went right to bed.

Today I made it through the whole day at work. Flu like symptoms are gone. But for some reason, I was slightly more nauseous then the previous days (thank God for good drugs, I used them all today!) I still seem to tire easily, but I expected this.

I also have more good news to report, my bone marrow test came back negative! So I am, in fact, 2B. I am ready to fight! I only wish I could do Chemo every week instead of every other! Let's get it out!