February 9th, 2025 - 13 years over due post

 Wow. Where to begin. I guess I will start off by explaining that I thought this blog of mine disappeared years ago. However, I decided to recently do a double check on Google for it. Why now? Well, I recently stumbled upon a TV series “Scamanda”. While watching the first episode of this series I had a complete breakdown. The main character “Amanda” is scamming people by claiming to need money to undergo treatment for advanced Hodgkin’s Lymphoma. Yup. The same disease that nearly took my life almost 15 years ago and which I still live with some side effects from (both physically and mentality). I always will. This woman. Amanda did this by using an elaborate blog and tugging on the heart-strings of loving people in her community. Watching this show made me physically ill and I wanted to punch my TV. 

But once I pulled myself together something dawned on me. I never got a chance to finish my story, MY REAL story. I thought it was gone from the world. But it was here all along! So just a quick update. I am one of the luckiest people on earth. I have been cancer-free for almost 15 years! I am overall healthy. I have lived to see my son grow up, graduate college with his bachelor’s in aeronautical engineering, he’s now married and I will be a grandmother in July! I am truly blessed. So to all those that prayed for me and sent me all the positive vibes and kind words, I cannot thank you enough! And my family can’t thank you enough! ❤️

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.