Chemocranky's Corner

Still Kickin' after all this time :-)

2012-01-23T15:31:00.002-06:00

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!!!!!

2008-02-13T18:01:00.003-06:00

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...

2008-02-05T09:05:00.000-06:00

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.

2008-01-30T19:27:00.000-06:00

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

2008-01-28T19:39:00.000-06:00

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?

2008-01-26T16:56:00.000-06:00

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...

2008-01-25T21:37:00.000-06:00

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!!!!!!!

2008-01-16T07:22:00.001-06:00

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!!

2008-01-09T17:54:00.000-06:00

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

2008-01-05T15:00:00.000-06:00

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.

2008-01-02T21:12:00.000-06:00

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.

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

2007-12-29T17:30:00.000-06:00

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.

Heartbreaking news

2007-10-29T09:16:00.001-05:00

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.

Cleaning up post-SCT "wreckage"

2007-10-24T17:49:00.000-05:00

I titled this with "wreckage" because I spent some time this week trying to get myself taken care of, physically. On Monday, I got an hour long massage (LONG overdue), along with my very first pedicure! I then paid a visit to my chiropractor, who readjusted pretty much every vertebrae in my back. Yikes!! However, Monday night was the first time since I can remember being able to fall asleep without a pounding headache. Gotta get massage and readjustment on a more regular basis!! However, I promptly ended up with a cold which wasted no time settling in my chest. No worries~~I already talked with my transplant coordinator and I have instructions to take it easy and head to a doctor if I have any significant changes or simply don't feel any better by Friday. Luckily, my mom is still living with us and is more than willing to take over the majority of parental duties. I feel like such a slug!

I saw my onc last Friday and had my bloodwork checked. My white blood cell count was 3.7--slightly low, but not too bad. The rest of my bloodwork actually looked pretty good! Seems that I will be heading back down to Omaha around November 13th to meet with the radiation oncologist that they refer all their lymphoma patients to. The idea is to meet with him, ask questions, and generally get the gameplan for radiation treatment. Not exactly sure yet how it's all going to work out, but I will be getting radiation in Norfolk, which is only about 1/2 hour from where I live. Much more doable! I'll definitely keep you all posted when radiation starts.

And, finally, I want to annnounce to my relatives back east that I am (hopefully) planning to make a trip out there in late June-until early July of next year! I am part of an online support group for people dealing with Hodgkins Lymphoma, and a bunch of us are planning on meeting each other in person in Boston next year. I thought I could make a real vacation out of it and visit with as many relatives as I can squeeze in! Mark your calendars for the end of June/beginning of July, and make space on your couches!!!!! I'll let you know when any real plans have materialized.

Well, that's about all the energy I have for today! Hopefully I'll be feeling better soon and be able to post here more often! Take care!

Kind of lost track of days...

2007-10-16T14:12:00.000-05:00

Sorry everyone! I know the majority of you depend on this blog to keep you updated on my progress, since I haven't been answering private emails and my track record at returning phone calls isn't much better. Although I've been home since Friday night, I haven't felt much like writing--but I do check in for new comments at least once per day, so keep them coming!! Yes, I've become kind of an attention-whore (sorry for any offense, but it's the truth!). Coupled with my lack of energy with little desire to broadcast the dreary details of my daily life, and you have...no updates. Again, sorry!

Okay, I was officially sprung from out-patient care last Friday. I've been home--or more specifically--I've been on my couch, since that time. With the exception of when I am in my bed. I am not napping at all during the day, which my oncologist feels is good. Luckily, I AM sleeping somewhat better at night. Eating is not so great, but I did make myself take a compazine today and actually didn't feel like vomiting my lunch WHILE I was eating it--yay me!! Cognitively, I'm pretty cloudy, meaning I don't always think clearly and I have a hard time finishing sentences without assistance. I feel like my mind is on semi-permanent vacation. Unfortunately, it's been raining like crazy here, so my mind is not even enjoying sunshine while gone...emotionally I feel like I have actually stabilized a bit! Being back with my family is at least helping in that area!! Lots of other lovely side effects too, like the feeling my gut is being ripped from my body, diahrea (however that is spelled), numbing/throbbing in my hands and feet, and little motivation to do much of anything seem to top the list--but at least I've got my health, right?! I sure hope so!! Which reminds me, anyone who plans to spend significant time around me this winter may want to seriously consider a flu shot since my own immune system is too young and fragile to be able to accept the immunity from a shot. Guess we'll see who wants to hang with me this year!!!

So, the plan for the future...my oncologist (onc) wants to see me "perk up" before he starts radiation. He will send me to a radiation onc in 4-5 weeks, who will be more specific with me regarding the kind of treatment I will get. We are guessing around 4-5 weeks of daily radiation to my neck and possibly my chest. My onc is trying hard to convince me to get radiation in Omaha, which I can tell you now will NOT be happening since that would practically mean I'd have to live in Omaha for the duration of treatment. No thanks. Especially since each treatment lasts only about 15-30 minutes. I've been a very cooperative patient so far, but I draw the line when it comes to being away from my family--again. With any luck, I will then be done with treatment and "just" be under the very watchful eye of my onc, most likely for a very long time. I have been approved for disability, but unfortunately won't see a dime until the 25th of February. That will obviously make Christmas a little tight at our house, since the electric company doesn't really care about cancer!!! But, we will be together, and hopefully cancer-free, which is way better than tons of presents! Hope this finds you all doing well!!!

Day +14

2007-10-10T15:22:00.000-05:00

Well, I am still considered "out-patient" right now, which basically means I am being held "captive" in Omaha still, although I am out of the hospital. My boys and mom all came down to help me get out of the hospital on Monday (day +12), and they were able to spend the night down here before heading back home. We took the kids to a place called the "Pizza Machine", which is kind of like Chucky Cheese on steroids!!! It was such a blast, and even though it was probably risky health-wise for me to be in a crowded place, seeing my kids run and laugh and thoroughly enjoy themselves was the best therapy I could have asked for!! Saying goodbye to them was so hard, but I am hoping to be fully discharged on Friday, with any amount of luck! In other news, I decided to have my Hickman line removed today, since I don't need it anymore and I needed to do something to "pass the time" while still here! Why not inflict more pain on myself!!!!! The actual procedure took about 10 minutes, with absolutely no form of numbing or painkiller involved. A little freaky and a little painful, but it's over now. I am currently enjoying the effects of my Vicoden, and will self-medicate as necessary since I have nothing better to do over the next couple days!!!!

Hope you are all doing well!!! By the way Ladonna, just wanted to clear up a little misunderstanding!! That "Connie" isn't my mother-in-law!!!! She is a friend of my family! The "Connie" you are thinking of usually signs her name as "Mom Anderson". Didn't want to start any nasty rumors!!!!!!

Love, health, and best wishes to all!!!
Skye

Day +11

2007-10-07T16:57:00.000-05:00

Alright, I know I haven't been very good about updating all of you, but at least I know my wonderful husband has helped pick up the slack for me. Thank you sweetie!!! Yesterday (October 6th) was our six year anniversary. Pretty sucky that I spent it in the hospital, but I kept my spirits up by sending him an arrangement of flowers (with snack sized snicker bars in it too) knowing that he'd probably get a little bit of hassling from his co-workers. Oh, did I mention that I had the flowers delivered to his work!!!!! That was naughty of me!! He also sent fake flowers to me at the hospital. Apparently they allow silk flowers as long as there's no mossy stuff mixed in.

Okay, in other news, I am getting RELEASED from the hospital tomorrow!!!!! That is Day +12, baby!!!!! I'm pretty impressed with myself, since it's even earlier than I expected (my guess was around day +16). I'll be staying at Scott's cousin's house for my "out-patient" portion of the SCT, but I expect it to be only another 4-7 days, assuming I have no complicating issues. I thank all of you for all the good thoughts, prayers, and positive energy sent my way. I know they all made a huge difference in my being released so quickly and having a relatively easy time with the SCT. Thank you all!

Day plus 4, the fun begins

2007-09-30T13:09:00.000-05:00

Just an update on by beautiful wife.. She woke up this morning finding out that her hemoglobin was below what the doctors would like, so they are giving her 2 bags of blood to try and help her out. She is also getting an I V drip for some fluids, and a morphine pump for the pain she is having in her throat and stomach. It seems to be working, but making her a little tired. But for some reason she refuses to sleep, she thinks she needs to watch her Packers play understadably. The morphine seems to be helping, she is able to drink a little without being in a whole lot of pain. She goes from being free and able to walk around to being stuck in bed and hooked up to a machine with about 50 tubes and wires hooked up to her. Looks like she is resting comfortably, probly because it is about half-time of the game. That's about all for now. GO PACKERS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Day plus 3

2007-09-29T09:33:00.000-05:00

Hey everyone this is Sky's hubby, just letting you know what has been going on in the fabulous world of hospital stay. Today Skie's immune system is now down to zero and the fun begins. She is starting to get a little more run down, her throat is getting a little more sore, and a little more tired. They say it will take about five to eight days before her system will start reproducing cells again. She will start getting her shots on the day five. We are hoping between day eight and day eleven she can be released as an out patient, if there are no complications. She is a little down because she wasn't able to get to see her boys on Thursday. Riley our oldest was told that he has walking nemonia, hope I spelled that right. As of Saturday he was feeling better and playing again. Both of the boys got to go up to the farm on Friday and help start the 2007 season of harvest, they were both so excited to get to help Grandma and Grandpa. I have to send my best helpers up to harvest beings I'm down helping Skie recover. The Grandparents are in good hands, or should I say thay they have there hands full. Well I should quit writing and get to work on getting Skie up and moving. I would also like to say Thank You to everyone who has wrote, called, e-mailed, and just kept her in your prayers. It has been a big help and and gives skie a big boost to know that she has all the support in the world from everyone. Thanks Again.

Day 0!!!!! Happy ReBirthday to me!!!!

2007-09-26T18:10:00.000-05:00

Okay, so I've been slacking again on my updating duties. There really hasn't been too much to report on--mostly more of the same. I did get a good night of sleep last night, with the help of Tylenol PM and Ativan--with another Ativan kicker at 4am! The new pillow has helped somewhat, but the bed is still greatly uncomfortable (no egg-crate foam yet)

Anyway, I am happy to say I have been "reborn"! My two little bags of stem cells were reinfused into me around 10am this morning, effectively giving me a new immune system to build. Lots and lots of sleeping today, and not much desire to eat, but I am gently coaxing myself into eating. No mouth sores yet (and hopefully I'm doing a good job keeping them away), I haven't vomitted (although I'm not sure if that could still be a possibility!), and no fevers. However, I think it is pretty common to have fevers and need blood products as your stem cells fight to engraft themselves into your body. That's my understanding of it, anyway.

Alright, time to try making myself eat something! You'll know more when I know more!!!

Day -3--side effects but Packers WIN!!!!

2007-09-23T18:17:00.001-05:00

Okay, so today I've been a little slower moving than in previous days. Of course, I probably spent all my energy cheering on my Packers--it's so nice of Brett Favre to have a good season (so far) just so I can get through my SCT easier!! Thanks Brett!!

I'm having a little more nausea today, but getting a combo of Zofran and Compazine seems to be helping that out--as long as I remember to get the meds before I start feeling too queazy. Since they can't give me anything that could mask a fever, I get Hydrocodone for the headaches (caused by backaches) that this lovely bed is giving me. So right now, I feel pretty good! The only other real side effects I'm having is an almost complete lack of appetite and constipation. The doctor is trying to "gently" work on the latter of these problems, since he seems convinced that I'll be wishing for constipation within the next couple of days. I am sure you're all sitting on the edge of your seats waiting to hear about my next bowel movement! However, my lack of appetite could definitely interfere with the "poo" situation--if I don't give my guts something to work on, they will go to sleep, further enhancing the lack of poo. Anyway, probably too much information!! Sorry, but I am also using this blog as a way of helping me remember the high and low points of this whole process--in addition to keeping my friends and family updated.

On a MUCH better note~~my wonderful husband if making his way down here tomorrow to visit me!!!!! Poor guy will be just getting off of his third night shift in a row, but he promises me he will get some sleep before the 2 1/2 hour trek down my way. He'll only be able to stay overnight, and then head back Tuesday (working days on Wed. and Thurs.), but he will be back for the weekend!!! This is good news, because, accoring to what I keep hearing and being told, this coming weekend with begin the roughest part of this whole ordeal. I will likely be having the majority of symptoms as my counts bottom out and attempt to climb back up again. I feel so thankful to be able to have Scott here for what I can only imagine will be a not-so-fun time. Oh yeah, forgot to mention my husband is bringing me a REAL pillow!!!! Maybe I'll get some better sleep, although actually being in my own bed is probably the only thing that will help me get the kind of rest I really need.

Well, I'd love to keep writing, but I really need to work on convincing myself to eat something. Hopefully something from the menu pops out at me as something I can make myself enjoy--or at least be able to tolerate! Love to all~~and hopefully sweet dreams to us ALL!!!

Day -4

2007-09-22T20:52:00.000-05:00

Well, today has me feeling a little more tired and queasy, and if I could sleep decently on this rock-hard bed and plastic pillows, I'd be feeling a lot better. But, luckily, my emotional state seems a bit more stable today. Yesterday I was feeling pretty blue--being away from my family is just so hard. But, I am doing better today--got a few phone calls and even a visitor!! Yay~!

Not much else to report. I ventured out and around the hospital today--decided I better enjoy the healing garden they have here before it's too cold or I feel too crappy to wander around. It was beautiful--nice breeze and mid-80's out in the sun. I sat in the shade and read the names of all the people who have struggled with their health who's loved one dedicated a brick to honor them. It was nice, and not as morbid as I would have thought--it sure seemed like many of the bricks were there as contributions to the hospital for helping their loved ones get back to good health. It was touching, although I still don't think I'd want to see my name on a brick anytime soon!!

Well, about another 1/2 hour of chemo, some sleep meds, and hopefully I will get a good night of sleep tonight. At the very least, I have the Packer's game to look forward to tomorrow!!! Sweet dreams everyone! Oh, and Nik, I didn't forget your birthday! I sent you an email, then realized afterward that I sent it to your work address! Sorry!!!! Love ya--now you're back to being almost as old as me!!!!

Days -6 and -5

2007-09-21T12:13:00.000-05:00

Hi everyone! Just wanted to let you all know that I was admitted to the hospital right on schedule yesterday, and received my first dose of chemo last night. Pretty uneventful--no side effects yet. I don't anticipate too much for side effects until sometime after the stem cell infusion. I've been told the reason for that is just because they hit you with so much chemo in such a short period of time, it's almost like my body does not react to it much until it's all over! Weird, but the side effects show up mostly once my immune system dies off, which should be approximately on day +3.

For the next four days (including this morning right at 4am), I will get two doses of chemo, at 4am and 4pm. My last day of chemo (hopefully FOREVER!!!!) will be on Tuesday, with my "re-birth day" happening next Wednesday. Then it's all downhill~and uphill~ from there!

Just wanted to give an update to my mailing address here at the hospital. I would like to believe things should get to me even with the other address, but here's a specific one:

Skie Peltier-Anderson
Patient Mail
Room Number 7453
P.O. Box 6159
Omaha, NE 68106-0159

Best guess is that I will be at this address for about 3 weeks--they estimate in-patient hospitalization for 10-14 days after the reinfusion (next Wednesday!)--barring any complications such as infections.

Love to you all, and I hope you are all doing well! For those of you who are having a hard time posting messages here, I'm going to try changing some of my settings which will hopefully make posting easier. Please don't give up trying~~~being here by myself for a major portion of my time in the hospital, you have no idea how much even quick messages mean to me!!!!

I am "COLLECTION QUEEN"!!!!!

2007-09-19T13:17:00.000-05:00

My oncologist has nicknamed me the collection queen, because I was able to collect 9 million stem cells in one day!!! He said I'm setting new records around there--which I'm not sure is true--but makes me feel pretty good anyway! So, what does this mean? Well, first, I don't have to go back for any more collection days. It usually takes an average of 3-4 days to collect, so right now I'm doing better than average!!! YIPPEE to me!!! Second--and most important--I will be admitted to the hospital tomorrow (Thursday) and begin at day -6 because I'll be getting my first day of chemo. This type of chemo is called BEAM, and I just recently received the educational sheets on it, so I'm not able to speak knowledgeably about this regimen yet. However, I can say this is 6 days of high dose chemo, and basically any side effect you can think of (and many you've never dreamed of) will be possible during it. It is intended to completely wipe out my immune system/stem cells, so they can be reinfused on day 0. The transplant team estimates I'll be in the hospital for another 10-14 days after transplant, as my immune system rebuilds itself. So, I will eat a good meal tonight, get a great night of sleep, and head to the hospital tomorrow around noon. Wish me luck, and I'll keep you updated as often as I can. Thanks to those of you who are sending me emails and cards. Your support is so appreciated--you have no idea how much it all means to me! Love to all!!!!

Skye

Thought I would make this its own blog entry...

2007-09-16T09:32:00.000-05:00

My dear friend, Kelly, from the Hodgkin's message board I am a part of, wrote some really important things to keep in mind regarding my restrictions as I go into the stem cell transplant, so I thought I would copy it into its own post so anyone considering sending anything knows what I can't have....Thanks Kelly!!

Dear Friends and Family of Skye,

I wanted to share some restrictions that you might not know about for Skye since she's now moving towards her stem cell transplant...

First of all, she really likes presents...BUT... DON'T send her flowers because unfortunately she's not allowed to be around them.

Another thing is raw foods, so if you're going to drop off food for her (which would be a terrific idea) make sure it can be fully cooked because miss Skye's immune system is shot and she can't fight the bacteria that may live on them.

Also things I know that might be helpful "gifts" for her...

Maybe you could offer to babysit her boys, or come clean her bathroom, or do dishes, or do laundry, or do grocery shopping for her. Little helpful things like that would really make life a little easier for her.

Thanks for reading!!

Kelly, Skye's hodge fighting pal :)

Regarding my progress--I head to Omaha tonight with a friend/coworker so I can be at the hospital bright and early tomorrow morning to get my Hickman catheter placed. Beginning on Tuesday, I start collecting stem cells--and this is all considered out-patient, so I am not officially "in" the hospital yet. I won't be admitted until the day after I have collected the minimum amount of stem cells required to do the SCT (stem cell transplant) successfully. I will definitely post on here when I get admitted to the hospital. All my restaging tests came back good, although my onc (oncologist) wouldn't actually say I was in remission. At least the ICE did its job well enough for me to move forward. Wish me luck that I don't spend more than about 3-4 days collecting!!! I want to get this show on the road, so I can get back home to my family!!! Sending my best out to you all!!! Love always!!!

Ready, Set, COLLECT!!!!

2007-09-12T18:09:00.000-05:00

Hi everyone! A quick update to let you know that my scans came back pretty good. The doctor wouldn't actually say the word "remission", but says the ICE did its job well enough to proceed right away with the transplant. So, I'll be getting growth factor (neupogen) shots twice a day from Friday to Monday, get the Hickman line in on Monday, and start collection on Tuesday. Hopefully it'll just take a few days to collect, and then I will be admitted to the hospital to start high dose chemo. So, the next stage is in full swing, and I even scored a prescription of Vicoden to help with the pain from the neupogen shots! YAY!!!! (Because I know getting only one shot--once a week--had me in some pretty fair amounts of pain for a few days each time). Besides, vicoden is fun!!! Just ask anyone I've made phone calls to after taking it!!!! I tend to have little to no memory of what I do while under the influence of the stuff! See, cancer can be fun!!!!!

Nik--your husband called and left a message saying he would have probably slept better if he hadn't had to snuggle up with a Packer's blanket!!!! Poor guy!!! Crystal--got your package and the card had me crying because I was laughing so hard!!!! Thanks for the super soft jammies!!!

You will be able to find me at...

2007-09-09T16:32:00.000-05:00

I should have Internet access while in the hospital, but it was recommended to me that I provide people with a mailing address--just in case you want to send me a card while I'm "incarcerated"!!!! Of course, gifts (purely to keep my spirits up!!) will be accepted as well!!!! Hee! Hee! Hey, if you can't ask for presents when you have cancer, when CAN you ask!!!! So, here's the address, if you are feeling inclined to make my day a little brighter. I'll let you know all know when I'll actually be in the hospital to begin receiving!!!!

Skie Peltier-Anderson
University Tower, OHSCU (7th floor)
P.O. Box 6159
Omaha, NE 68106-0159

Here's the low-down for the next couple of weeks

2007-09-08T16:28:00.001-05:00

On Monday (10th), Scott and I go down to Omaha for a fun-filled day of bloodwork, PET scan, CT scan, and a bone marrow biopsy (BMB). We will have a doctor appointment on the 11th, (yes, that's 9/11--a little eery), to determine if the two rounds of ICE have put me into remission. If not, I will likely start my third round of ICE--but I'm being optimistic!!

Assuming I am in remission, here is the remainder of the plan that I know of right now...I will start neupogen shots on Friday (14th)--through Monday (17th). This is done to "pump up" my white blood cell count and help me produce enough stem cells for my transplant.

On Monday (17th) I will return to Omaha with my friend/co-worker, Angie, to have my Hickman line placed. This is a central line, which will be used for stem cell collection. Beginning on Tuesday (18th) I will begin collecting stem cells. To my knowledge, I get hooked up to a machine that basically sucks the blood out of my body, separates out the stem cells, and puts the remainder of the blood back into my body. Once I have collected the magic number (somewhere in the neighborhood of 5 million)--and this could take anywhere from one to seven or more days--I will then be admitted to the hospital to begin 6 days of high dose chemo called BEAM (given twice a day). In case you haven't figured it out, that's intended to completely wipe out my immune system--then I will get my stem cells back and wait for my immune system (WITHOUT cancer!!) to return to a level that is survivable outside of a sterile environment. A mere 3-5 weeks from the beginning of the collection process, I should be sleeping back in my own bed again!

So, there's the tentative timeline. My admission to the hospital will be completely determined by how long it takes me to collect enough cells, but I will try to update as frequently as possible!

Where the heck have I been?!

2007-08-29T14:11:00.000-05:00

Okay, so maybe I'm not so great at this whole blogging thing!!! I am so sorry I haven't updated all of you for such a long time. If nothing else, this certainly should validate to everyone that it isn't just YOU that I've always been terrible about returning emails/phone calls!!! Just ask my mom how many nights she's spent in her life waiting for me to call her when I get home, just to let her know I made it safe! SORRY!!!!!!

Okay, let me give you the run-down. It suddenly dawns on me that I should read my last entry before starting the new one to try avoid repeating and/or forgetting info...well, welcome to my world because chemobrain is all about forgetting stuff and acting like your grandfather repeating the same story 50 times!!!

I have now done two rounds of ICE chemotherapy. I finished the second one last week, with minimal "down time". I was really out of commission until about Sunday, when I kind of felt like I began driving myself out of the dense pea-soup fog that is my brain. I feel good enough, in fact, that I decided to return to work today, and hopefully I plan to finish out the week and work all of next week. Yay me!! Of course, I had my lovely 2 hour meeting with the Social Security Department on Monday. I was able to shave one hour off that meeting due to already having gone over--in painfully minute and elaborate details--of EVERY JOB I HAVE EVER HELD IN MY LIFETIME!!!!!!!!! So, I was thankful for that! Naturally, they can't tell me anything at the end of my meeting regarding my "chances" for being approved, but I will say I will be completely dumbfounded if I am not. I guess I'll find out in a mere four months!

Backing up to (almost) two weeks ago--the weekend immediately before my second round of ICE--Scott and I went on our canoeing/camping trip. What to say about that....hhmm, I had a really good time, but I will likely never go again! We had a good time with our friends who were so kind as to invite us. However, Scott and I had never been canoeing, and we were all led to believe we would have a much more relaxing time than it turned out to be!! I believe the distance was 31 miles, and we were fighting winds (which caused significant white caps on the river) for a good majority of it! Some tears were shed, some tempers were lost, but I am proud to say I did succeed in rowing a majority of the way. Scott and I needed help from time to time, and I simply ran out of energy with probably 1 1/2 miles to go, but I definitely found out how to tap into my inner strength! Even though it was not the ideal "getaway" I was hoping for, this trip was very significant to me. It taught me a great deal about myself and my relationships with others, discover strength I never knew I possessed, allowed us to reconnect with some good friends, and gave Scott and I a chance to think about something other than cancer! I wouldn't have traded it for anything, so thank you so much Tawyna and Adam! (Just don't call about doing that again or Scott may file for divorce!!)

Okay, enough for my introspective moment: here's the skinny on upcoming events! I go back to Omaha on September 10th to do bloodwork, PET scan and CT (of only my head and neck--no barium sludge to drink--YIPPEE!!!!!!!!). On the 11th, I meet with my oncologist (10:40am, CST if anyone wants to send good thoughts then!) to find out if I am in remission. If I am not, I will go into my third round of ICE, then determine if remission has been achieved. If I am in remission, I will then proceed to the transplant portion of this double-feature (triple feature, if you count radiation!). I will update in more detail on that when I know more, but basically it follows like this: several days of Neupogen shots to "pump up" my white blood cell counts; one to several days of being hooked up to an apheresis machine to "harvest" my bone marrow (I believe I need a minimum of 5 million to be "successful", which can take several days but I'm shooting for ONE--any bets?!). All of that is done on an out-patient basis, but the next part is when I start my long hospital stay.

Shortly after harvesting my stem cells, I go into the hospital for 6 days of high dose chemo called BEAM, given twice a day. We start counting with -6 and count forward--Day 0 is the day I get my stem cells back and we count the first 100 days as the most crucial. I will stay in the hospital for 3-5 weeks, all depending on how well my immune system bounces back so I don't die when a child sneezes on me! (I'm only half joking about that!!) The good news is that I learned during my last round of chemo that, assuming my children are healthy, they will allow them to visit me occasionally if I feel up to it!!!! YAY! That was good for my soul to hear, although I have purchased two web-cams to try being technologically advances with my pre-schoolers! Scott does not have much vacation time, so when I know when I will officially be in the hospital, I will be welcoming visitors. I know I would appreciate it, and Scott would be more "at ease" being at work if he knows I am not completely lonely.

Okay, I really feel like I've rambled on forever here. Guess that's what I get for waiting three weeks to update everyone! Scott and kids are doing pretty well. Both boys are officially in pre-school now and seem to love it! My mom has become my live-in nanny and tends to scrub bathrooms too, so you can't beat that!!! Having mom around has made things SO much easier, so thank you so much!!!!! (Her name is Terri, so you know who she is when she posts comments here!)

Okay, really gotta run now!!!!! Love to all!!!!!!

Back at work!--and other news

2007-08-15T05:14:00.000-05:00

Hi everyone!!!! I know it's been awhile since I've updated all of you, and I am really sorry about that. I am happy to say my lack of updates is due to feeling pretty good and trying to get a lot done!!! For starters, my tomatoes are trying to take over my back yard!!! I planted 10 plants this spring, thinking I was going to be needing a "project" since I didn't have cancer to fight this year! Well--that was a thought-out plan, wasn't it!! So far, I have canned 42 jars of the little buggers, but I think I am done now. I still have tons of tomatoes, but have just run out of time to do anything with them. I went back to work this week, and I go in for my second round of chemo next week. (Secretly, my hope is that my tomatoes will be all gone by the time I feel well enough again to do more canning! But don't tell anyone!!)

Yes, ladies and gentlemen, I did say I went back to work--on Monday, to be specific! It feels good to be like a "normal" person again, although I admit I'm not really doing a hell of a lot of work! I've met with a couple clients, mostly to process with them what is going on with me and to refer them to another therapist. That is sad, but I feel confident I am leaving my clients in good hands! I plan to work the remainder of this week and next Monday, then I'm off to Omaha for 3 days of chemo. Yippee!!

I didn't mention the weekend canoeing trip Scott and I are planning to go on this weekend! Before all the "fun" of next week, we were invited by Adam and Tawnya (Scott and I met at their wedding and they were in our wedding) to go on a 30 mile trip down the river and camp overnight! I am so excited about doing this, but am keeping a watchful eye on my health to make sure I am safe to go. For those of you who have been skeptical about how wise it is for me to go on this trip (and I know you're out there!), I really do appreciate that you haven't been too vocal regarding not wanting me to go. Afterall, you all know how stubborn I can be--and this is something I really want to do!

Finally, the big "fallout" of hair is definitely beginning. I started noticing it on Monday and had my next door neighbor/cosmetologist cut it real short yesterday. If there's one thing I can't stand, it's chunks of hair falling out everywhere. So, I'm hoping it hangs on through the weekend (although I plan to wear a big floppy hat during my vacation), and then it gets shaved off--again. Emotionally, it feels a little harder for me this time around. I am confident, however, that when I'm "ready" to shave it, I will be fine. The hardest part for me is actually my oldest son, Riley, who is (and was the last time I was sick) very sensitive about it. He told me last night that he doesn't like it when mommy is sick and he doesn't want me to take the medicine that makes my hair fall out. Damn. There's just no easy way for any of us to understand this crap. Of course, five minutes later, he was happily eating ice cream! See, ice cream does fix everything!!!

Well kids, I think that's all for now! I will try to be more vigilant about updating here--ya know, since I continue to avoid replying to emails! I'm not trying to be rude, but I just know I would feel obligated to respond to everyone's emails and I just don't have that kind of energy. As always, I absolutely love to see when people leave me comments here!!!!! Take care and love to all!!!

2007-08-06T17:41:00.000-05:00

Hello everyone! What a nice surprise to log on and see all the comments left for me! You all have no idea how much strength that gives me, knowing people care enough to check out the blog, sometimes leave messages, and even "chew me out" when I don't post on here often enough!! So the big news of the day today is that I almost feel like getting back to work, but I can't until I get permission from my doctor...go figure!! I'm working on getting permission, and don't plan to overdo it, but I definitely need something to distract me from cancer all the time. So, hopefully I will get a chance to get back to work by the end of this week--that's the plan, anyway!

I also stood in line at the Social Security office today--just so I could make an appointment to come back in three weeks to spend a glorious 2-3 hours there, defending why I need to be placed on disability. The good news is, assuming I will qualify for disability (which I should since I'm going into a transplant), I can continue to work with the doc's permission and as long as I feel up to it. I just can't make over $900 in a month--which should allow me to work pretty much all the hours I want since I am a counselor!!!! (That's a joke, people!!) Seriously, though, having the ability to get out of the house and do "normal" stuff until I actually get to the transplant part (probably in early to mid-September) will go a long way in helping me get through all of this.

It just dawned on me that I have definitely made this blog all about me. This whole experience, cancer, has definitely NOT been all about me. I've had the easy part. I have an enemy to fight and weapons in my arsenol. My family and friends, who have to stand by, helpless, have the truly hard part. It can't be easy trying to figure out how to help someone who is sick....does she want to eat, sleep, be left alone, talk about the cancer, talk about ANYTHING else??!! I wish I knew how to answer that question for anyone asking it. The truth is--it changes from minute to minute. What feels like a ravenous appetite one minute is complete nausea the next. Feeling full of energy is absolute and complete exhaustion the next. What I can tell you all, is that I love every one you. Thank you for asking. Thank you for taking the risk of my rejection. Thank you. And please don't stop asking. Even if I turn your offer down, please know that your well-wishes get stored in my chemobrain, so I can rely on your caring when I feel I am too tired to do all of this. I WILL beat this, and the love, caring, well-wishes, thoughts, prayers, and offers for help, is what gives me the confidence I need to do it. Love to all!!

Things are looking up!!

2007-08-05T09:50:00.000-05:00

So, yesterday was pretty much a craptastic day. I'll spare you the details, but will say that I've managed to lose about 5-7 pounds since I first started chemo on Tuesday. The good news is that my stomach is actually rumbling, so I guess I better eat something soon! Too bad everything still has a lovely metallic filmy taste to it!!! Even my headache has died down to a dull roar, so everything is getting better.

I've had my first Neulasta shot (growth hormone to keep my white blood cell count from plummeting), which caused some aches and pains, but nothing like the Neupogen shots used to do to me. I have bloodwork every Monday morning to keep everything monitored closely, then the plan is for me to return to Omaha for round 2 of ICE on August 21st.

I know I've gotten emails from some of you telling me that you are having problems posting on the blog. Maybe try using the "anonymous" option. You can still email me (preferably at chemocranky@gmail.com) but I just don't have the energy to respond to everyone's emails individually. I am really sorry about that, but I'm just not sure how I'd be able to even remember who I've written to, so keeping it simple by only posting here is my best option. I hope that doesn't offend anyone, and I really do love getting email--I just don't want to take the chance of inadvertantly leaving anyone out.

Love to all, and know that I'm doing pretty well so far!

Please allow me a moment to vent!

2007-07-29T13:05:00.000-05:00

If you've tuned in today, you will hear me bitch just a bit! Turns out the "great plan" to get Long Term Disability insurance isn't really panning out too well after all. Here's why...my last chemo happened on October 3rd. I started working January 2nd, any my first day of coverage for LTD began on March 1st. All good, until you read the part that says any illness for which you've recieved treatment for within 6 months of the effective start date for the insurance is considered pre-existing. I'm no math whiz, but I come up with 5 months from my last tx. to effect start date of coverage. Long story short, I'm sh*t out of luck.

Looks like I'll be standing in line at the Social Security office, hoping I'll get approved for their disability program. It could take about 6 months for me to get approved through them, although "approval" really shouldn't be a problem since I won't be allowed to work--ya know, due to having NO IMMUNE SYSTEM!!! Just sucks that we will be living off of only Scott's income until I can at least get disability. Oh yeah, did I mention that Scott was recently diagnosed with carpal tunnel syndrome and is supposed to be having surgery for that?! That's right, the news just keeps getting better! Needless to say, he will not do it now--so please keep good thoughts that Scott will not become more seriously injured or require the surgery in order to continue working.

Okay, bitchfest over....

Without going back and looking at what I've posted previously, I can't exactly remember what I've said. So, let me just say that this week I will be completing my first cycle of ICE chemotherapy. I get three weeks "off", then my second round of ICE. Another three weeks off, then re-staging testing to determine how well the chemo did at kicking cancer's butt, then on to the stem cell transplant. I will discuss that in more detail later. I know the general info about it, but won't be fully informed until at least Tuesday, when I meet my transplant team. Geez, as hard as it's seemed getting the info, you'd think this was all classified information--and that I'm apparently not on a "need to know" basis!!!!

Okay, I'm really done crabbin' now!!!

Love to all!!!

Here's the plan so far...

2007-07-27T13:27:00.000-05:00

I was off getting work things squared away when Scott took a phone call from the hospital. Here's the plan--until I call them back and get more specifics this will have to do. On Monday, I arrive at 11:30 to get checked in and prepped for surgery, and my lovely port will be re-inserted at approximately 1:00pm. I'm free to go after I get done in recovery, but have to present myself again on Tuesday to speak with a social worker. I can't imagine my head would be at all screwed up by this whole mess!!!! After meeting with the social worker, I speak with my oncologist, then it's off to the first infusion. I guess that takes about an hour, then I'm free to go again...go where, I'm not sure, because I have to admit myself to the hospital on Wednesday at noon for the next infusion of chemo. I guess that takes several hours and is pretty harsh, because the earliest I will be discharge will be Friday. I am not sure if that constitutes "1 round" of ICE, and I don't know how much recovery time I get before getting slammed again.

So, I haven't been at the new job long enough for FMLA to kick in, which would only give me 12 weeks unpaid leave anyway. When I get back from Omaha on this first trip, I will begin looking into Social Security Disability, since I pretty much know I should be approved for that. Also, I wisely took out long term disability coverage when I started this job, so that should kick in after 90 days off the job, assuming I did not have to be employed for a certain period of time before being able to use it. Keep your fingers crossed...the rest of my day is filled with getting pre-certified to be hospitalized and making any other plans I think of!

Regarding my tattoo--I am trying hard to get my appointment pushed up to Monday evening--after getting the port, but before any chemo. Not having much luck with that. The guy at the front desk that I spoke to said she's completely full. I left a message for her to call me back herself, so we will see if the "cancer card" can buy me some preferential treatment. I have given a lot of thought to postponing treatment, and, although I'm not 100% comfortable with how fast things are going, I will likely never be feeling great about doing any of this! I would never forgive myself if my chance for remission (dare we say, "cure") is compromised because I selfishly decided to get a tattoo instead of chemo. Know what I mean? It sucks, but I will EVENTUALLY get that tattoo!!! You can all count on that!!

To quote my friend, Mary, "I don't recommend getting cancer. And I highly recommend not getting cancer a second time." At the very least, it's a MAJOR inconvenience!!! You'll know more when I know more. Love you guys, and love all the comments I've gotten from all of you! Now some of my Hodge friends will "meet" my family (mom and sister, Crystal, who have posted comments), friends, and my best friend of 25 years (Nik).

Big news--the Hodge has returned...

2007-07-26T22:19:00.000-05:00

I'm setting up this blog as a way of being able to keep everyone updated on my progress. As most of you who stumble across this blog know, I just found out today that I have relapsed with Hodgkin's Lymphoma.

I was originally diagnosed with Stage IIA Nodular Schlerosing Hodgkin's Lymphoma on April 18th, 2006. After participating in a clinical trial, consisting of six months of AVG chemotherapy, I enjoyed six months of remission bliss before starting to notice the swelling of the lymphnode on the right side of my neck. I freaked and went to my six month check-up a month early...nothing showed up on the CT scan, so I made the decision to go on with my life, knowing that relapse could happen, but I wasn't going to let the fear of it run my life.

I just celebrated my 35th birthday on Saturday, and had my 9 month check up and scan on the following Monday...needless to say, everything went downhill from there. Enlarged nodes showed up on my scan, so a biopsy was scheduled for the following day. I just got the call tonight that the Hodge is back, so now I am facing a stem cell transplant procedure. As of this moment, my oncologist wants me in Omaha on Monday morning to have my port re-inserted, with my new chemo regimine follow on Tuesday. My plan was to get a tattoo first...so I guess we will see who is more stubborn!! More news to follow as soon as I know anything.

Love,
Skye