This is a blog intended to keep family and friends posted about my progress as I undergo a stem cell transplant to fight my relapse of Hodgkin's Lymphoma.

Friday, January 25, 2008

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

Wednesday, January 16, 2008

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.

Wednesday, January 9, 2008

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!

Saturday, January 5, 2008

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.

Wednesday, January 2, 2008

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.

Saturday, December 29, 2007

For the record, I'm still alive...

Well, I've been "encouraged" numerous times over the past couple months to update my blog. And I've been meaning to, I really have. I guess I haven't for a lot of reasons--trying to develop something resembling "normal", spending time with my kids and husband (and mom!), recovering from the transplant and getting ready for radiation, dealing with newly developed panic attacks and general anxiety problems--but mostly, I've just wanted to distance myself from cancer in about any way I can. Writing this blog is a glaring reminder of the beast I in battle with. Being on the forum of other hodgkin's warriors is also a reminder, and I've been laying low on that web-site as well. It's especially hard when other people dealing with the same "easy" cancer that I am are continuing to suffer, continuing to battle, and some are losing ground in their battles. Just look at Shannon and Jesse's blog to see this is a woman who has fought long and hard--more valient than anyone should HAVE to fight for their life--and she has recently entered hospice care. I don't know Shannon, but her husband writes on the Hodgkin's forum and I couldn't care about them any more than if they were my "real life" friends. Or Sarah's blog--not sure if she has updated recently, but this woman has been to hell and back--numerous times--only to learn each of her treatments lasts for a short period of time then she's back to square one. She's entering a clinical trial at the beginning of the year, but it's not for a cure. She undergoing pallatiative care to buy as much quality time as possible. This damn disease really pisses me off....

I haven't written on this blog lately because I am really struggling with depression, anxiety, survivor's guilt (coupled with a nagging fear the transplant didn't work for me), and just being sick and tired of being sick and tired. The selfish part of me wants to say, screw it, I'm tired of fighting cancer. I just want to live my life. I don't want to do radiation....I have completed 10 of my 20 radiation treatments. It's 15 minutes out of my day, and yet my entire life revolves around having these treatments every day. January 14th--barring any complications--should be my last treatment--forever. And yet, it feels so far away. I know I'm ranting. I know I'm rambling and probably don't make much sense. I just feel like this has been bottled up inside of me since July when I was re-diagnosed (with the exception of Scott recieving the brunt of my emotions) and today, for whatever reason, is just a breaking point for me. This blog is hopefully a starting point for me to get through the rest of this treatment. Right now I feel like I can't even face going to radiation on Monday morning, and yet I know I have no choice because I have to fight for my kids and my husband. And, maybe by Monday morning, I'll feel like fighting this for myself.

And, oh yeah, in the past two months my dad was diagnosed with prostate cancer (had surgery on December 19th and they believe they got all the cancer), my grandfather is undergoing treatment (radiation) for prostate cancer, and I had to put my beloved cat, Barri, to sleep because his kidneys stopped functioning. He was my baby for the past 13 years, since he was a month old. I was blessed to have my mom stay with us until December 9th, when she returned home to get my dad through his cancer journey. I am also blessed to have a husband who loves me and is devoted to me, regardless of my health. I love you honey! Finally, I was lucky (and had lots of help from mom) enough to host Thanksgiving/Christmas dinner at my home for my side of the family. Despite bad weather and slightly undercooked turkey, we had a great time, ate until we were stuffed, and everyone made it home safely. So, it's not like life has just been crap for the past two months--I have been busy with some "normal life" activities also.

Monday, October 29, 2007

Heartbreaking news

As I've mentioned before, I have a network of online friends who are all dealing with Hodgkin's Lymphoma. Everyone on the message board (or the "online support group") is fighting the hodge, has been through treatment in the past, or is the support person/caregiver to someone with Hodgkin's. One of the women I have grown closest to~~Anne-Marie Dunn~~has been fighting this disease for several years. It has come to our attention on the message board that she is in hospice care and currently (most likely) in her final hours of life. I have posted a link to her blog down below under "friends I've met along the way", in case you are interested in learning more about this remarkable woman. Please take some time to read a bit of her blog.

I am dedicating this update today to my friend, Anne-Marie, who has taught me that, even if you have been given the dreaded "terminal illness" diagnosis, you can still walk through this life with grace, determination, and an incredible sense of humor. I wanted all of you who read my blog to know about Anne-Marie. This may be the "easy cancer" and I should feel "lucky" to have such a "curable" cancer. This is still cancer--and it still kills people. I just hope to not be one person it kills.

My cold is easing up a bit, although I am on huge horsepill Amoxicillin (875 mg each) pills for 10 days. I still have a nasty cough, but hopefully the meds will keep me from developing pneumonia. I hope you are all doing well and not getting sick from the weather changes.