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!
www.my.michebag.com/jessica_ward

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.

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.

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!

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.

Feburary 15th - OMG I've been here a month!

As I think I've mentioned before, I have a very hard time writing about my experiences while I am going through them, especially if they are traumatic. It's much easier to write when I feel as though I have gotten through the worse of it. But in all honestly, the biggest reason for my delay in posting this time is that I have been heavily medicated though the past weeks. Once I had finished my four day chemo ordeal (which of course, turned unto 5), my swallowing issues and sores in my mouth and throat just got worse. The pain was so severe, I spent most of the time sleeping from being so heavily medicated. When I was awake I could barely form coherent sentences and text messages, so I really didn't want to embaress myself by trying to put together a post that made no sense. Now that my counts have finally started to come in, and my sores in my throat and mouth have impproved here's a quick recap of past couple weeks.

I felt extremely sick as promised and the pain in my throat was unrelenting, I lost the ability to swallow, even water, by the beginning of February. Which is a very weird feeling. You still have an appetite, so you want to eat but that first bite of pudding goes down like shards of glass you quickly remember why you gave up entire eating. I received bags upon bags of blood from all of my donor heroes out there. I even spent a brief stay in the ICU because they I had an infection and they couldn't regulate my blood pressure. Pretty scary stuff.

Couple good things I can say about the last few weeks is that time has gone by fast. Also it's been great having mom and Heath down here with me. Of course, I am not recovering as fast as I would have liked too, I was actually supposed to be dicharged this past monday, but I continue to hit a few speed bumps along the way. And if my wish for prayers and well wishes haven't worn out, I have one to ask.

They found a spot on my lung durning my last CT scan and they are going to do a biopsy of it Wednesday to determine what it is. They think it may be some kind fungal or bacterial infection but they want to know what it is they are dealing with so they know how best to treat it best.

Thanks for all of your love and support.

January 23rd - Second Day of Transplant Chemo

I started my 4 days straight days worth of chemo yesterday morning. But I am also still suffering greatly from the two weeks of radiation. Things are getting harder. I'm not going too lie, but tell it as it is, no sugar-coating here. It has been challenging. But the nurses have been good about keeping my pain and nausea under control. I have severe radiation burns all over my upper chest and neck. When they finally put the new catheter in on Tuesday they used a large amount medical tape and dressing so when the tape had to come off yesterday, so did a lot of my skin. That of part my shoulder and neck are very painful and raw. The docs are a little concerned that I have so many burns and open skin wounds on my body but there is not much to do more then keep it as covered and protected as much as possible.

Swallowing has gotten down right impossible. They have me pretty heavily medicated to get me to swallow. Even water feels like needles going down my throat. I also have a lot of swelling and burning in my chest. I now have a PCA pump (I think it stands for "Patient controlled analgesia"). It works great cause it gives me a low dose of pain meds around the clock so I never wake up in horrific pain. Then there is a button that I can push whenever needed which gives a slightly higher dose to take the edge off, especially to swallow pills and meals.

Of course, this means I am feeling a lot more than fuzzy in the head lately (also there is chemo-brain too) and if you have emailed me, texted me or sent me a facebook message and I haven't been quick to respond to you because I'm eitherly heavily sedated or just plain sleeping through the pain.






BTW, this is either an alien transformer trying to abduct me from my hospital bed or just a harmless IV pole... you decide :)

January 16th & 17th Typical hospital BS

Sorry for the late post. The morphine is making my brain fuzzy and I don't want to make myself look too stupid.

I made it through my first week of radiation last week. It seems like I spent the whole week either waiting to see a doctor or in the treatment room.

Radiation was not what I was expecting. Each treatment was boost radiation and only about 20 minutes. I had radiation to my upper chest and the front and back of my neck. Most of that time was just positioning me correctly. The radiation beams don't hurt, you can't even feel them during treatment. But you certainly do later!

By Wednesday I was really starting to hurt. Started out just feeling achy, like I over did it at the gym (wait, how would I even know what that feels like!?) By Thursday afternoon, breathing and swallowing became painful. Friday I was a mess, even walking became difficult and the only thing I could was water and even that was difficult. This was upsetting because I was told the swallowing problems wouldn't begin until later on in my treatment. Even the radiation docs didn't understand why I was having such severe symptoms so early.

Sunday morning I was admitted to the hospital, and the miscommunication began immediately. My stem cell doctor had told me more than once that my new catheter in my chest would be placed that day, but when I got here, the nurses had no idea what I was talking about. They basically accused me of lying or "hearing him incorrectly". But I promised me it would be done on Monday, right after my radiation.

Sunday night they started me on a continuous iv drip of a drug that has given me migraines, but insisted that I had to have it cause it was the only one they use. By Monday morning I had a severe headache and could hardly open my eyes. The doctors made their "rounds" and I asked again if it could be change, no again.

Right before going down for my second radiation, a nurse came in a suggested a different drug they could use, but it wasn't going to be approved until after I got back from radiation. At this point I felt really horrible, if you have ever had a migraine you know what I mean when I say it effects more then just the head, I was feeling really sick too.

They brought me down for radiation and it took extra long because they need more films apparently, so I was on the metal table with my chin taped up for more than an hour. When they sat me up and put me in the wheelchair I started vomiting. They gave me anti nausea drugs and got it under control and sent me to the OR area to have my catheter placed. When I got there, I laid in the pre-op room with the excruciating headache for an hour until the surgeon came in and told me she refused to do the surgery because I had vomited and she was afraid that it could happen again during the procedure and be dangerous.

Went back up to my room and the same doctor that told me there were no other options earlier in the day, had approved the new drug the nurse had suggested and they started it immediately. Within an hour or so the headache went away.

Then something happened I would have never expected, my stem cell doctor, the one that screws everything up actually came into my room! He has never come to see me when I was inpatient in the hospital! He sits down and apologizes, first for the scheduling of the catheter placement. Then he explains that he believes the reason I am having so much throat pain so early is because he gave me an injection last week prematurely. He went on to say that he had hoped by giving it to me so early it would work better, but he has since heard arguments from his colleagues to the contrary and now believes that I am in so much pain and having swallowing problems because of that decision he had made. I told him how disappointed I am in all of this and he seemed very remorseful at least.

Sorry for such a long post, but a lot has happened, I will try to post more frequently if I can manage to stay awake and migraine free! Hopefully today will be a better day.

One more important thing...

Despite my sadness, I need everyone to know how much I love all of you. I don't just mean my close friends and family. I love and appreciate everyone who has been reading my blog, sending me positive thoughts, love and prayers. When you are facing something like this you appreciate people so much more then you ever did before. I really wouldn't have made it this far without all of your kind and supportive words. My friends and family have made themselves available to me around the clock to help out in anyway they can and have sacrificed a lot for me. Also, it continues to amaze me how kind total strangers can be. Thank you to all, and I truly love you with all my heart. Even if things don't work out for me in the end, I believe in karma and you all have great things coming your way. <3

January 8th - How to begin?

So I got a little gray envelope from UPS yesterday. It was from Sloan Kettering and I knew what was in it without even opening it, I've seen them many times now. Inside this envelope is a CD of my most recent scan as well as a full written report by the Nuclear Medicine Tech detailing the scan results. Knowing the contents, I decided to not open it right away and put it aside. As I mentioned in my earlier posts, regardless of what the scan shows, the next step would be the same. The likelihood of success would lessen though if there was any cancer showing up on the scan. So part of me just doesn't want to know the results. But I am obsessive-compulsive by nature, and I can't stand not having every bit of info.

So my curiosity got the best of me and I opened the envelope this morning. Those of you who know me realize it's amazing I made it as long as I did without looking.

And of course, once again, major disappointment. The report said, "Blah, blah, blah... still disease present... blah, blah, blah. (Fill in the "Blahs" with medical jargon)

So here I am. Just when I think I couldn't possibly handle anymore bad news, more comes my way.

As it was, I already have been having much anxiety about leaving tomorrow to go down to NYC for who knows how long. I can't even think about voluntarily walking into the transplant unit on the 16th without getting physically ill. I refuse to pack, because packing would be accepting that I am leaving, and I can't do that.

So why am I doing this? Why am I going to allow them to make me suffer so much, when the chance of a cure is so small? Why allow my family and friends watch me go through this? I mean, is it worth putting yourself through so much hell when you don't have much of a chance of succeeding? Is it wise to spend your last dollar on a lottery ticket? No, you take that last dollar and do as much as you can with it, instead of just throwing it away. Maybe that's what I should do with my life.

I think the name of this blog is all wrong. Someone is certainly getting their ass kicked, but it isn't lymphoma's ass apparently.