Wednesday, January 18, 2012

January 18th - The compromise

Dragged myself down for my every three week visit to NYC last Tuesday and explained to my doctors that I am very concerned about the night sweats. Well docs wouldn't agree to do a PET scan, but after lots of begging and pleading (just short of a temper tantrum), and threatening to quit the study, I got them to agree to another CT scan at least.

Left the doctor's office and went 3 blocks away to the breast cancer building to have the scan, then back over to the doctor's office for the results. They had the results as soon as I walked in the door. Everything looked good. No changes from the last one. It's a good thing but, this doesn't satisfy me completely as I really believe a PET scan would be more appropriate. Argued with the doctors a bit more (I'm a really aggressive patient nowadays). Didn't get any where with them so it was off to the chemo suite.

I love how they call it that, the chemo "suite". Makes it sound like a luxurious, relaxing place. When in reality, you're stuck in a hot little cubicle, with anticipatory nausea, the nurse poking you like a pin cushion for your pre-chemo labs. Then they stick the IV in and give you a whole bag of poison. After the poison's all in, you get to listen to the loud BEEP BEEP from the pump for 5 minutes until the nurse comes back. Time to leave (YAY), but you are so nauesous and weak from the whole thing you can barely walk yourself out. How "suite" is that!

Sorry about the rant, I feel better now. At least mentally, excuse me while I go puke.

Thursday, January 5, 2012

January 5th - Happy New Year!

Wow, it's been so long I honestly forgot the URL to get here. Sorry...

Haven't had much to update until now. Still going every three weeks for trial preventative chemo. Because the neuropathy got so bad, they have reduced my dose by 25%. I know that I have about 4 or 5 left so, IF I keep going, I should be done by April of this year. I say "If" because I threaten to quit all the time and one of these days I may actually do it.

Also, this chemo I am on, was approved by the FDA for very limited use in August. Not approved for use in the way it's being used on me, so I still need to stay in the trial. The chemo is now known as Aceridis. Since it's approval, I have received more info about the drug. Last month, I actually got PAID to do a market research survey for the company that produces the chemo. It proved to be worth more then just a check. I was given so much more information about the drug then my doctor ever shared with me. This survey also gave me some piece of mind, because I learned going through it that, my side effects aren't "rare" or "unusual", as my doctor told me. Almost all of my side effects were listed on slides shown to me as part of the survey. In the past, my doctor has acted like my fever made me an enigma and the other side effects were either just in my head, or the result of something else.

Finally, I do have one concern at the moment. I've started to have night sweats again. The night sweats were the biggest (and one of the only) symptom of my Hodgkins. I am really afraid that it is back. My last scan was in early November and was clean, but it was only a CT scan, which doesn't show everything. My next PET scan isn't until March, but I am trying desperately to convince my Dr to move it up. He is reluctant to do so, and doesn't really give me an answer as to why. I have a suspicion that he is more concerned with the clinical trial, then what might be in my best interest.

Wednesday, August 24, 2011

August 24th - Chemo yesterday, and I think it's my last

Yesterday, after being thoroughly tested for neuropathy, the doctor's allowed me to go through with the chemo. I have to say, a part of me was reluctant to get more of this trial drug that gives me nausea, headaches and painful neuropathy. During the extra couple of weeks of delayed treatment, I felt pretty good, had a glimpse of what a regular life without chemo might be like. Which made it all the harder walk into the building

But at the end of the day, this crazy poison is the only thing that gives me hope. The "closest thing to an insurance policy" my doctor could offer (those were his words).

They did reduce the amount of the drug by 25%. My symptoms were "baseline" going in, except I had a lot of "anticipatory nausea", so they gave me IV Ativan before the chemo, which has left me still feeling like a zombie today.

What has scared the shit out of me was not waking up so fatigued, but getting up and not being able to feel my left hand! Standing up, walking down the stairs, my feet are on fire and pins and needles! What the hell, neuropathy shouldn't already be setting in less then 24 hours after the chemo!! What is going to happen in the coming days? The neuropathy from chemo grows and plateaus about a week after treatment. What condition am I going to be in then? Will I be able to walk, will I be able to use my hands. They ache now just typing this. I am really scared.

Furthermore, this means the end of my trial for sure. The end of my insurance policy. My odds were not good to start with. I had so much hope for SGN-35.

To end on a happier note, as some of you know, I recently became a Sales Rep for Miche Bags! They are handbags with changeable covers! Works like a typical home party business, like Silpada, Pamperd Chef etc. It's a perfect distraction for me, great to have something other then cancer to focus on. My first party is at my house next Weds and I am so excited! If my neuorpathy is giving me a hard time, my mom will help out. If you are interested, but can't come (either you live too far or just can't make it) you can order from my website. If you order something, during the checkout it allows you to apply the order to my party, giving me the credit for your order. Thanks!

Sunday, August 7, 2011

Warning, very over-due posting, a bit long...

I apologize profusely for my lack of updating. In fact, I almost forgot the web address to get here. I guess I haven't written in almost 4 months because I've had nothing to update until now. Also, I haven't written cause I am just trying to live my life day by day and forget about the big "C" word looming over me. When I come here to write, I have to deal with it head on.

I've been keeping myself busy intentionally, working full time again, going to NYC for chemo every 3 weeks, managing a household, being a mom and a wife. I have even taken up a side job selling handbags. Believe me, I am very tired, I'm sure my body is not up to all that I do. But I'd rather be exhausted, then focus on the fact that more then likely, my cancer will come back. That the odds are against me.

I got beautiful, flattering card from a beloved family member. I have it sitting on my desk this sums it up, and I cry every time I read it:

"Life is hard sometimes - crazy, mixed-up, messed up.
And there you are, in the middle of it all, just doing your thing...
Being strong and brave and beautiful
like it's no big deal. But let me tell you girl, it is.
Not everyone can do what you can do
Not everyone can handle things the way you can.
While you wonder sometimes if you are doing ok...
the rest of us are just watching in wonder."

I think this particular writer at Hallmark knows me personally!

Anyway enough of the emotional, tear-jerker stuff. Here's my update.

Up until this point I have been just doing chemo every three weeks with really nothing new to report. I've been having some side effects, weight loss, lots of nausea, headaches and mild neuropathy. But I am on plenty of meds to control it all, so it's livable.

In June, I had a scan done that was clean, which was good, but they don't really consider you in remission until you are 18 months post-transplant. The scary news was, they found some fluid on my heart. Which can happen from radiation to the chest. They did 2 echocardiograms, 2 weeks apart to see what the fluid was doing, was it increasing, decreasing, or staying the same. The second of the 2 showed a decrease so my doc was less concerned we just have to "keep an eye on it". I will have another PET scan in Sept.

Since then, everything was going pretty smoothly until recently. Last week, out of nowhere, my neuropathy went from mild to extreme. I was at work and around the middle of the day, my fingers started to really ache. By the time I left for the day, I couldn't hold my car keys with my fingers without dropping them. By evening time, my left foot started in on it and the pain and numbness went up my calf. That night I woke up 5 or 6 times in severe pain. I wanted to chop my fingers off! It's very hard to explain what it feels like to someone who has never experienced neuropathy. I liken the pain when severe, to a bad cut in the sense that it is a very deep, dull, almost throbbing pain. When it is mild, it feels like when your foot falls asleep, numb with pins and needles.

Anyway, this change in symptoms is very worrisome for a few reasons. One of course being that it is very painful and horrible to experience. The other issue is that neuropathy is one of the most common (and potentially severe and permanent) side effects to the chemo I am on. The doctor's are very concerned about it, and it is evaluated at every visit. I knew experiencing neuropathy to this degree would prevent and possibly stop my treatment when reported. But because it is a serious side effect, I have to be honest. I called the doctor and told them the situation.

My next chemo was supposed to be this coming Tuesday, but I am not going to make the trip down to be told what I already know. There is a lot more to this "story", they have been pushing me to go off the drug completely for sometime now. Their reasoning is my side effects and continued weight loss. The docs have been saying it is effecting my "quality of life". I said, I don't care if the side effects are so bad I am constrained to a hospital bed, I am NOT going off this chemo! I don't think they are only concerned with my well-being. I honestly think they want me out because they want to report how few symptoms occur on this trial drug. And I know my intense neuropathy is the icing on the cake for them.

When I made the call, they were pushing me hard to quit as I expected. I pushed back. My doc said he would meet with the Head of the study and get back to me. The verdict was they are delaying me for at least 2 weeks. They will "re-evaluate" me on the 23rd. They have no intention of letting me pass their evaluation. They didn't even put me on the schedule for chemo that day. IF they do actually let me get the chemo it will be a smaller dose, by at least 25%.

My family is not taking the news that I may have to quit the trial very well. I am actually handling it better then they are. I think they put all their "eggs in that basket".

In the mean time, I am trying not to think to far into the future, and what may or may not happen if I stay on the drug or go off the drug. I can't control what happens next.

Monday, April 25, 2011

April 25th - I'm still here

Sorry for the apparent abandonment of my blog. I didn't mean to wait so long to post, I just haven't had much to say. Or maybe it's more, I didn't know how to say it.

I began the clinical trial chemo drug in March, shortly after my release from the transplant. My health has been up and down ever since. A couple of weeks after my first treatment I was hospitalized for vomiting and nausea. Just a couple of weeks ago, I was again hospitalized, this time with 105.6 degree fever. They put me on a bunch of antibiotics and in a couple of days the fever disappeared.

Since beginning the trial chemo at the beginning of March, my treatments have been delayed twice due to a low white blood cell count. Because of the decline in my count and some symptoms (headaches and nausea), it is believed I am getting the actual drug and not the placebo. So with the delays, I only have 2 treatments under my belt.

When we went for my my last treatment, my regular doctor was out so we saw the head doctor of the Lymphoma Unit. He is also the doctor in charge of the clinical trial that I am on. It was nice to finally meet him. He did deliver some sobering news.

My regular doctor is a huge optimist to say the least. He is always talking up the positives and we are used to that bedside manner. This doctor is more of a realist and he basically said though we should try to be optimistic, we shouldn't even think about a cure at this point. He also said that he wouldn't even consider me to be in remission until a clean scan at the 18 month post-transplant point.

Also, this doctor indicated that my CT scan done in March still showed some "stuff" in the areas of the tumors. This was news to me. My regular doctor never shared those results with me (as I said, always the optimist). I asked if it was possible that the stuff was only inflammation or scar tissue and he said it was possible. But I got the impression he didn't think that was likely. He made it sound like this is something I will fight my entire life (with no promise that it will be a long one). My husband and I left the office that day feeling very deflated.

I am scheduled to go back for my next chemo May 3rd (if my white blood cells cooperate).

On the positive side, I have gotten permission to return to work next week. I will start back part time at first and ease into it. I still am not myself and I am told that it really takes 6 months to a year to feel "normal" again. Plus the side effect from the trial chemo and all the antibiotics I am on takes its toll. But I'm excited to get back to work. And my pocketbook certainly looks forward to it too.

I guess right now I feel like I'm on an emotional roller coaster again. I try to remember to appreciate everyday. But at the same time it is hard to do that with the thought that those days could be so numbered. I also feel like all the dark days that I have been through have hardened me. I also fear all the dark days that are most likely to come.

Friday, March 4, 2011

March 3rd - Out after 43 days

They finally let me go on Tuesday. I would have gotten out sooner but I got some sort of infection and spiked a fever right before my planned discharge.

It feels nice to be out. I still have to stay in the city until next week. My doctor required that I remain close by, should anything go wrong, plus I had a follow up appointment on Thursday. The hotel I'm at is right across the street from Sloan Kettering so it is very convienent. My aunt is here keeping me company and running all of the errands (I'm not allowed out in public anywhere, not even a grocery store).

At my follow up yesterday, I made a pretty big decision. I decided to take part in a clinical trial. I had been made aware of this trial from the beginning and was tossing it back and forth whether or not to take part. It's a phase 3, double-blind, placebo controlled study, using a drug that they believe may help prevent relapse in those high at risk (unfortunatly that would be me). The drug has already been determined to be safe, it is chemotherapy drug called SGN-35. Even though it is a chemo, it's supposedly very mild with little if any side effects.

To take place in the study, I have to come back to Sloan Kettering for one day, every three weeks, for a year. They will give me either the drug, or the placebo over the course of a few hours. As I was trying to make my final decision whether or not to take part, the doctor said to me, "Look,this is the closest thing to an insurance policy I have to offer." I think that's what sold it to me. They will reimbuse me for my travel and I can quit the study anytime. But it is still a big commitment, and the possibility that I get the placebo instead of the drug itself frusterates me.

Desipite all of the problems I had in the hospital, I am doing quite well now. Much more tired then usual, but I feel pretty good. Doctor is very pleased with my counts and how well I'm doing. So I start the clinical trial on Monday. Let's hope I get the drug and not the placebo so I can up my chances of a cure!

Tuesday, February 22, 2011

February 25th - Still in the Hospital

I am getting stir crazy to say the least. You know you've been in the hospital too long when the janitors know you on a first name basis. Time for me to go.

The lung biopsy they did via needle a few weeks ago showed nothing. So they decided to do another biopsy on me yesterday, were they stuck a camera down my windpipe to get tissue samples. Of course, no result yet.

There has been some talk about discharging me this weekend, I really hope It happens. I've been felling better. A little stronger every day. Definitely ready to get out of here.