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.

Radiation almost done!!

From the lack of messages I've received since my last update, I'm worried I've offended people (either that or no one really is reading it anymore)! I want to just say that I never intended to offend anyone, and I certainly was not directing the "guide" toward anyone in particular. This guide is meant as much of a guide to myself as it is for anyone else. Unless you are gifted with perfect communication skills, it's not uncommon to not have the "right words" or say something that might not be the best "just to say something". I know I have trouble knowing what to say or do for someone going through a tragedy. Please know I wasn't thinking of anyone in particular when I posted the article.

Okay, onto my current status:

As of today (Wednesday), I have three radiation treatments left. So, Monday will definitely be my last day!!! My white blood cell (WBC) counts are holding steady, despite a nasty cold I had last week. I am still coughing up a bunch of gunk and I'm on antibiotics, but I feel SO much better! Radiation is making me look like a freshly cooked lobster. I apply a cream at least three times per day, but my sensitive skin is just ready for this whole experience to be over! When I was sick last week, my energy level was completely in the toilet. This week, however, I am not feeling too bad. I'm still really tired by the end of the night, but it's not unbearable.

So....I have my first set of scans scheduled. That's right, boys and girls--I still have no idea if the transplant even worked! My last set of scans was in July last year, when my relapse was confirmed. I will be in Omaha on February 12th to do bloodwork, PET scan, CT scan, and doctor appointments. It will definitely be a full day! I'm sure, with my newly developed anxiety, I will definitely be using Xanax to get through the day. Yummy--I can almost taste my barium sludge (prep for the CT) already!

Hope all are doing well, and I start to get some responses from anyone out there who still reads!

What ~not~ to say to a cancer survivor

I wish I had seen this wonderfully written "guide" when I was initially diagnosed. I don't take credit for writing it, but acknowledge feeling angry at people who have said these things to me. For every person's benefit, when faced with any tragic news/situation, these are great suggestions to follow:

Whether you are a newly diagnosed survivor or someone who loves him or her, cancer rocks your world. We survivors have our own issues to face, but those of you who care for us can help by learning what not to say. We know you mean well, but please avoid the following platitudes:

"God won't give you more than you can handle." This implies that God gave me cancer. I don't buy it. The God I know is about goodness and light and love and healing. He doesn't throw down lightning bolts of cancer (or other catastrophes for that matter); that kind of thinking went out with ancient mythology. My cancer was caused by some cellular misfire, some rotten biological/chemical event, a chink in my body's immune system armor. Instead of telling me that God doesn't give us more than we can handle, remind me that God helps us handle what we are given.

"I could get hit by a bus tomorrow. You'll probably outlive me." Keep that up, and I can guarantee it. Look, if you're walking blindfolded down the middle of a major interstate highway during rush hour when you say this (because that's how I feel right now), it might make sense and I might agree with you. Otherwise, it's a meaningless remark that does nothing to make me feel better. In fact, now I'm worried about you. Thanks a lot.

"You have to have a positive attitude to beat this, so come on! Be positive!" You've just added to the terror I'm already experiencing. You have implied (whether you meant to or not) that I'm hurting my chances of getting well because I'm very sad and very scared right now. If you really want to help me, acknowledge and validate my feelings. Feelings are not facts, so you can't argue with them; please don't try. Instead, help me express what's in my heart and on my mind. You don't need to respond to everything I say. Just listen without trying to "fix" things. I will find my way to a more "positive attitude" as I gain understanding of my disease and treatment plan and as I begin to regain control of my life. Be patient with me. I'll get there in my own time.

"Don't cry. It will all be okay." These words are almost always said because the person who is witnessing the crying is uncomfortable. If you're uncomfortable seeing me cry, then please don't come around for a while. I need to cry sometimes, and I don't need anyone telling me not to. Crying is healthy. It helps me get the bad stuff out, and that helps make room for the really good stuff like wholeness and healing.And you don't know if it will "all be okay" anymore than I do, so don't say that. In fact, don't say anything just to be saying something. If you can just sit with me and be with me and acknowledge through your silent companionship that we are mere mortals but we are in this together, that will be more comforting to me than anything you could say.

A special message for doctors:

Since when did you guys stop giving out hope? I'm not saying we want you to lie to us, but geez! Be still and focused and very present with your patient in that moment when you must inform him of the diagnosis. Imagine yourself in his place, and know that you are preparing to deliver what will be one of the most devastating blows of his lifetime. Instead of saying, "You have cancer. It's very serious, and the prognosis is not good," why not say, "You have cancer. It's very serious, and I don't know what the outcome will be, but with your courage, spirit and cooperation and my knowledge, skill and experience, we are going to form a very powerful team to fight this thing." You haven't misled the newly diagnosed survivor in any way at all. You have simply told him that he is brave and you are smart and that you will be in there with him, fighting all the way. And isn't that what you would want to hear if you were the patient?

And if he presses you on his "chances" (as I admit most of us do), tell him the truth - that statistics cannot predict outcomes. You know better than anyone that patients amaze their physicians every day by beating the odds, that the woman you expected to live for perhaps another year is still here 12 years later, that the man who had a diagnosis considered "terminal" 8 years ago went camping with his family last weekend, that the child with the "inoperable" and "lethal" brain tumor is back in school and playing soccer because his last scan could find no trace of the tumor. Come on. You know these things. These are the stories we want to hear, not numbers and studies and statistics.

And to all medical professionals:

You may not realize this (or you may have just forgotten), but we hang on every word you say. We take everything literally. We watch the expression on your face and the way your eyes move when you talk to us. You can make or break our spirit with a word or a look. We know you're very busy and that you are overworked, exhausted and probably w-a-y undercompensated, but I'm fighting for my life here. Please choose your words carefully, let the compassion that led you into medicine show in your eyes, and give me a hug or squeeze my hand now and then.

And whatever you do, don't ever be guilty of saying that you don't want to give a patient "false hope." There's no such thing. A miracle could be just around the corner. It's happened before (think Gleevec), and it will happen again and again and again.

And it just might be tomorrow.

Doing better today.

I wanted to check in quick to let you know that I am doing better today than I was when I wrote my last update. I was having a "poor me" kind of day, and you all got a little taste of the mood swings my wonderful husband (and mom) have had to put up with since I was re-diagnosed. Life has been such a rollercoaster with this treatment and that treatment--since the end of July--and now things have slowed down enough that I'm just beginning to digest "everything I've been through". I've heard that phrase so many times in the past several months, and it was beginning to make me angry every time I heard it. I don't want to be reminded of what I've gone through--what my family and friends have had to endure.

I've gone through this whole relapse with the attitude I would handle everything that came along, 1 thing at a time. First is was the restaging tests, then salvage chemo, followed by giving myself Neupogen shots and enduring stem cell collection. When that was finished (luckily, in only one day), I was admitted into the hospital for high dose chemo--two times per day for six days--followed by the moment we all waited for--the stem cell transplant. The activity of having my stem cells reinfused was pretty boring actually, but the real "fun" started about three days after transplant, when the side effects started catching up to me. I came close to setting records at the hospital when I was discharged from in-patient care on day +12 after the transplant. Overall, my physical side effects and damage has been minimal. I've tolerated everything about as well as a person can while going through this experience. Even my radiation treatments are going pretty well, and I'm over halfway done with them. I even learned today that they are reducing the radiation field beginning tomorrow because the doc feels he does not need to continue radiating the whole area.

Emotionally, I think I have handled my relapse pretty well also. I've had my moments that I've been overwhelmed with emotion, but who wouldn't have that? Mostly, I've looked at everything I've had to do in the last six months as challenges that I would simple be too stubborn NOT to get through! What is so hard for me to cope with right now is the flood of anxiety I find myself facing. Ordinary activities I've done my whole life leave me feeling unsure, unconfident, afraid, and sometimes even terrified. I'm just too much of a control freak to have anxiety like this, I guess!! I am hoping that this will pass, as I get some healthy time under my belt, and I have less of a need to be afraid. Until then, it does help me to vent it on here, so be prepared!!!! You never know what I might say!!

I also want to mention, as I did in my last update, about my friends, Shannon and Jesse. Jesse is a "regular" on the Hodgkin's online support group I am a part of, and he just lost his wife today to this terrible disease. Shannon was diagnosed with Stage II Nodular Schlerosing Hodgkin's Lymphoma, just like me except she had symptoms typical of hodgkins. Unfortunately, despite all the treatment she went through, Shannon was never able to gain a remission, and fought hard until her suffering finally ended today. If you have an extra minute or two please check out their blog. There's a link to it about halfway down on my blog, and, if you feel you can, leave a message for Jesse and their five children. My heart hurts tonight, thinking that it could easily be me leaving behind my husband and children.