Kinda big

Soon, there's going to be some disagreement between my oncologist and I.  Soon, as in tomorrow...

I tend to lean towards being conservative regarding terms like "remission" and "cured".  In fact, if you wanna know how I REALLY feel, I believe the Hodge, or any other cancer, can rear its ugly head in my life ANY time it wants, without regard for how long I have remained Cancer-free.

All that being said, this Friday, the 26th, I see my oncologist.  Assuming there are no surprises, I expect to hear that my remission continues.  I might even hear the BIG word--cured!  Afterall, it has been 5 years since my transplant.  I won't consider myself having 5 years of remission until Feb 12th, though.  THAT is when I heard "remission" for the 1st time following a clean scan.  THAT will be my "cured" date.

I have mixed emotions about the word "cured".  Every cancer survivor longs to hear it.  But my excitement about the possibility of being told I'm cured is tempered by my "reality-based" belief that this monster can come back ANY time wants.  Cancer cells don't understand words like "cured".  I have some relief, having this much "clean time" under my belt.  It helps me feel more secure in believing I will remain cancer-free longer.  But the thought of it returning, or some other form of cancer showing up to turn my life upside down, is still in a terrified corner of my mind.  I don't let myself live in fear, but I also don't let myself feel overly excited about the news I expect to hear tomorrow.

Shouldn't there be fireworks, a parade, a street named in my honor?!  Afterall, I stared death in the face twice, and boldly (ok, maybe not boldly!) told it to go to hell!  But I know better.  My world moved on from the world of cancer long ago.  Heck, even I don't think about my experiences as often as I used to.  It's usually when a lingering side affect flares up, or I have one of these bi-yearly oncology appointments, that I REALLY get deep into thought about my battle.  I don't expect most people in my world to even realize the significance of tomorrow  Is it selfish to think they should?  Maybe.  Actually, it just occurred to ME just a couple weeks ago that this is it...the appointment I've been waiting for ever since that fateful day in April, 2006, when the word "cancer" entered my life for the first time.  I'm hoping, longing, expecting, to hear tomorrow that I am finally "CURED"!!!!!  Maybe I'll have my own fireworks or parade for myself.  And maybe, just maybe, tomorrow will mark the point at which I can work harder to finally move on, and not let myself worry so much about the if or when I will fight yet another battle.

Still Kickin' after all this time :-)

I get weekly stats on how many people still come to my blog, even after I haven't written a word in almost 4 years. It amazes me to know that, whether intentionally, or unintentionally, people still stumble across my experience with my stem cell transplant. Hopefully, those who come here find something of value while they browse the different posts. Whether "that thing" they are trying to find is a little bit of humor, information, brutal honesty about what it's like to fight for your life, or some other "thing", I'm hoping they (you) find it when you get here.

Like I said before, it's been almost 4 years...which means I'm almost at the point where I can say I have four years of remission! February 12th, baby! I'm thrilled to be able to say that! It hasn't been the smoothest of rides, but I definitely have been fortunate. The long term side effects I deal with are frustrating at times, but I know life could be a whole lot worse than it is for me. So, no complaints about it! Maybe I'll spend some time on here discussing some of the issues my "survivorship" has produced for me, in case someone out there is looking for information or just someone who can "relate".

I've been tossing around the idea of starting to write again, even if it's mostly for my own benefit. I haven't decided. While I love talking about my cancer experiences with anyone who wants to know more about it, I have mixed feelings about sharing how well I'm actually doing. There have just been so many of my fellow warriors who aren't as lucky as me, and sharing publicly how I've been able to stay cancer-free feels almost arrogant. I know what my profession calls it--"survivor's guilt". It's hard to feel completely free of this disease when so many other people I know end up relapsing or never getting to say they have reached a remission. So, I will ponder a while longer before I decide whether or not to become active on here again. I just wanted to check in and acknowledge my gratitude to all those who have followed me in the past and who still come looking around here wondering if I will show my face again!

For now, know that I am doing well, my family is doing well, and that's about all anyone can ever ask for in this life, right?!

Love to all

SUCCESS!!!!!

I am SO happy to report that my scans (PET and CT) show that I am in REMISSION!!!!!!!!!! This is one of those moments that I don't think the extent of my emotions can be felt through written word. But--trust me--I am freakin' ECSTATIC!!!!! I really believed the transplant had not done the trick, so I didn't even believe my onc when he told me that my scans were "squeaky clean".

The plan is for me to return to the doctor in three months (middle of May) for follow-up, but no scans until my one year SCT anniversary in September. My onc likes to keep radiation exposure to a minimum, so he does not plan on doing any scans beyond that point unless I request it. I think I would feel more comfortable with a set of scans every 6 months to a year.

No definite plans for my grand return to work, but I am trying to figure it out. I still get extremely tired by afternoon, and my husband tells me he doesn't want me pushing myself too hard. So, I'll probably do part time for awhile, assuming my job allows me.

Okay, sorry to cut it so short for now--I realize it's pretty lame when I can go on and on when I'm ranting--but I've got supper to finish and some plans for a trip to Boston to make! Look out New England family, Scott and I will be looking for houses to to crash at at the end of June/beginning of July!!!

Hope everyone is doing extremely well! Thank you all for your support throughout the last two years, but I am surely hoping that I won't be needing any more prayers sent my way for a long time! I'll keep the blog going for as long as my life seems interesting enough to write about, and will let you all know when I plan on shutting it down.

Love to all!!!!!

The anxiety begins...

My scans are next week--the 12th--to be exact. I'm trying to not let it get to me, but it does. The fear and doubt that this transplant did its job, creeps into my head when I least expect it. Of course there is night time, when there is too much quiet and not enough to keep my brain busy. Luckily, a good dose of Lunesta, and sometimes a Xanax kicker, help me get through those times.

It's when I feel completely taken off guard with my pessimistic thoughts that really frustrate me. We have to re-do our kitchen due to a malfunction in our dishwasher that flooded the entire kitchen. I will spare you the drama of getting home owner's insurance to cover it and the panic attack I experience when Scott took out the circular saw to make getting our beautiful hardwood floor out easier. (The floor Scott and my dad put in while I was going through tx. the first time as a way of cheering me up and getting me through the last 2 1/2 rounds). Anyway, I digress from the story...I was picking out counter top color the other day, and a random thought popped into my head..."make sure you pick out something that will be easy for Scott to keep clean if you're not around much longer." Damn brain.

Or this trip I want to take out East. I really want to go--time away from every responsibility, get to meet quite a few of my hodge buddies I've grown so close to over the last couple of years, visit relatives (and I have a LOT of them out there!)--time away. Scott has put in his vacation time and has instructed me to find flights. But I just can't get myself to do it. I look them up, compare them, decide which would work best with our timeframe--but then when it comes to "select this flight"--I freeze. I can't buy the tickets. I find myself thinking, "I don't want to waste the money if we find out my scans aren't clean." I've told myself that, after I find out my scan results, I will buy the tickets. I guess we'll see next week.

All the bad news on the hodge forum has definitely taken its toll on me. Some of the closest friendships on this board are with those who have now died. Sarah's death was a complete shock to me and many others. We knew her time was limited, but I never had a clue she would go so soon. And then there's the relapses. Several members of the board who went through tx last year are relapsing this year. Whoever the idiot was that nicknamed this the "good cancer" needs a good kick in the head. I'm failing to see what is so good about all of this.

I know my fear of relapsing will never go away. But for now, I sure would like to hear the word "remission."

Sarah has passed.

We were just informed on the hodge forum that Sarah passed away today. Luckily, she was without pain. Throughout my cancer experience, I cannot ever recall asking, "Why me?" Right now, however, I am asking, "Why her?"

If you're sending prayers and good thoughts, keep it up

Well, my friend Sarah, is still alive. We (meaning, all my forum buddies and I) were informed that she is on complete life support at this point, and she has a living will stating she does not want to be kept on it. This is what I knew as of last night. I went to bed with an extremely heavy heart, believing my friend would leave the Earth while I was attempting to sleep.

What I found out this evening, however, is that she is still alive. The doctors convinced her partner, Lorraine, to keep Sarah alive while they "try a few more things". Realistically, the chances remain very slim that her body will begin functioning on its own or that she will be successful in fighting off her infection.

But, there is always hope~~and some of you out there believe in miracles. Sarah could use all the help she can get, and Lorraine could use some prayers as well.

I just can't even imagine Scott ever having to go through this with me. I pray that will never have to happen. It's just so unfair...

Can't the "good" cancer catch a break?

I am hoping to get some of those great positive vibes, prayers, WHATEVER, that you have been sending my way for the past two years--for one of my friends on the Hodge message board. Sarah (SarahSmile), whom I've referred to in the past, is one of our mightiest warriors. She has been able to achieve minimal remission from her many lines of treatment, but was hoping for great things from a new clinical trial she was just enrolled in (SGN-35). Sarah had one round of this chemo, but ended up with a fever that just wouldn't go away. I spoke with her on the phone just last week, right after she had gotten her infusion, which is what makes this so sad for me.

She has been placed in ICU due to the fever, and it was determined she developed cellulitis and the infection is spreading. She was placed on a breathing tube this afternoon and is currently unconscious. I've been playing in Cancerland park long enough to know the breathing tube is not a good sign. I need help from all of you--you who are less cynical than me at this point in life--for strength for Sarah. I'm selfish, I'm not ready to lose her.