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.

The flip side to making my life public...

You know, when I first decided to start writing about my cancer journey for the entire world to read, I did it mostly for the selfish reason of not wanting to write personal emails to people. I knew the SCT would be extremely exhausting, and I would need to focus all my energy on fighting the disease within me. Answering emails, although that level of contact was deeply personal in nature, was VERY exhausting. Most of the time, I could not remember whether I had replied to people or not. I'm sure I forgot MANY people, and for that I am very sorry. When I relapsed, I knew I would not have any chance of keeping in touch with people personally--and the blog was developed. And you were all invited to come here, read about my experiences, and write comments.

This may seem really dumb, but it had not occurred to me that OTHER people would be reading this blog as well. Stumbling across it by accident, being referred to it by someone I know from family, friends, work, my past. I really didn't think about it at all!! Why that never occurred to me, I may never know! (Gee, maybe I was a bit preoccupied with having CANCER!!!!)

Anyway, you know when I finally realized it~~~tonight!!! Yep, just tonight, when I read the latest comment on my blog. It wasn't signed by anyone, but obviously left by someone who is more than a passerby. Whoever wrote it is someone who knows or knew me at one time, and yet--for whatever reason--did not say who he/she was. I have my ideas of who you might be, but no "hard evidence." It's okay, but it's weird....I have never written anything here that I regret, am ashamed of, or anything like that. In fact, I sincerely hope my experiences are informative, personal, honest re: the trials of dealing with cancer, or simply provide comfort to others. If, by some aweful chance, I don't end up beating this disease, I hope my children read it and are proud of how their mom fought. If I DO beast this beast, I still want my children to know their mom's struggles. I've never liked being in the spotlight. I'm much more comfortable being in the background, keeping to myself. But here I am, for the whole world to read and write anything they want. You get to be anonymous, and in "chemocranky's corner", I am in the spotlight.

Wow, I know I'm rambling horribly now! This is what happens when I am overtired, and I'm waiting to go to bed because my children haven't fallen asleep yet! I made a promise to myself that I would never edit my posts. I would write whatever I needed to write, and post it, unchanged. That is my therapy....being as honest or scatterbrained or happy, sad, mad, or scared as I need to be while writing in this blog. Welcome to my therapy sessions!

P.S. See what happens when you don't sign your name to your comment!!

Love and health to all!
me

DONE, DONE, DONE!!!!!!!

I am officially done with treatment! It had definitely been a long haul, but I am finally done! Monday was my last day. My worst side effect is the dry, itchy skin and the lovely red glow from the lovely sunburn the radiation leaves behind. My throat is also pretty tight which makes it hard to swallow, but at least it's not painful. The radiation tech gave me the mask I was supposed to use, which has sufficiently creeped out anyone who has seen it! I had a major panic attack when they first tried using it, so we all decided I could be held in place by other means. A little bit of paper tape under my chin and taped to the table worked well enough, and didn't have the effect of making me feel like I couldn't breathe!

My dad is recovering still from his surgery, but has apparently been able to begin taking on small jobs as he feels up to it. His doctors are fairly confident he is cancer free now, so that is fantastic news! My grandfather is beginning his treatment (radiation) for his prostate cancer. I believe he has to undergo 40 treatments, which be an extremely long haul. GO grandpa!!!! You can do it! And get yourself healed up so we can visit in June/July.

Okay, gotta run for now so I can get Riley ready for school! I'll report more later.