I can remember it like it was yesterday. The early spring Saturday morning was gloomy from days of drizzle and I had slept in as I had most of the week. I was thinking about a shopping trip with my mother as I showered and prepared for the day. Before I could really get started, the phone rang and showed the Yale Health plan on the display. I remember thinking that they can sometimes be really good as I only had my blood drawn the afternoon before. I had waited a week to have my lab work done because my symptoms were fading, it was probably a little anemia and my body fighting the abscess I had discovered in a fresh piercing the week before.. I wasn’t worried. Sure I had been tired moreso than usual, but I like to sleep. I figured my gums bleeding was from something like scurvy, yes, I really did entertain that idea.. figured I’d pick up some vitamin C pills and be good to go.

I answered the phone and the nurse on the other end explained that my blood work was off and they wanted me to come in and run a few more tests. I didn’t really understand what she was saying. There were numbers being rattled off and I asked “what exactly does that mean?” but she wouldn’t give me a straight answer. I explained that I lived sixty miles away and asked if I could come in on Monday when I’d be in New Haven for work. She told me that not only did they want me in today, but as soon as possible. Ug. I hung up from her and called my mother. We made plans to go down to New Haven, take care of business and maybe swing by the Clinton Outlets on the way home.

The drizzly gloom held tight for the long ride down. We speculated a little on the way down what could be the big deal but we mostly sat in quiet as Dad navigated the way. We walked into the busy urgent care center and let the receptionist know I was there. My butt didn’t get to warm the waiting room seat before I was called in (this can’t be good I thought). I’ll never forget that little yellow room. I sat in there as the dr on duty poked and prodded and thoroughly examined my body. I asked what he suspected but he was vague and skirted with “let me finish my exam and we’ll discuss”.. er.. “whatever “ I think as he’s checking out the baby bruises I have below my waist. He finishes and explains that my blood counts were way off and that maybe there was a mistake in the lab, maybe some blood got mixed up but “we’re going to send you to the hospital to redo the test and rule out leukemia”. Um, what? I’m sure I didn’t hear you right. He explained that it could very well be something else but he didn’t know so he wanted us to go to the hospital. He then asked if I wanted my parents to come in, naturally I said yes.

I was in shock but it didn’t really hit home until my folks came in. Naturally they expected me to tell them what was going on. I didn’t really understand myself, how was I supposed to relay this info to my parents? I tried to speak but nothing wanted to come out, I had no idea what words to string together. Somehow, after a few moments of struggle, I managed to relay what the doctor told me. I can remember reading the shock of comprehension in their eyes. We sad quietly in that little yellow room for what felt like hours but was only minutes. The doctor came in and spent some time using different words that didn’t really help the situation. We heard “prognosis” and “ask about survival…” not really sure what came after that as my brain stopped working at survival. What do I need to survive? Lots of people live through leukemia, right? (I didn’t get to ask this question that day and didn’t like the answer when I did get the chance). This is no big deal, right? He asked us if I wanted to take an ambulance over  to the hospital. Why?? Uh… naw, we’ll drive the couple of blocks.

None of us were looking forward to an afternoon in a busy New Haven ER, ug. We walk in, let the people know we were there and I was immediately taken care of. Oh crap, this really can’t be good we thought. They started getting some of the regular ER info from me and walked me back when they learned enough. My parents remained with the reception woman doing the rest of the paperwork. Weird! Inside the ER was full, there were people in the halls, all the rooms were full and drapes were drawn everywhere. My escort deposited me on a free cot in the hallway and told me to wait. I’m sitting there on the cot, with crazy going on around me and some crazy Einstein looking dr approached me and asked if he could help me, as I might be lost just sitting there in my street clothes on a cot in the middle of the ER. “Crap, he’s going to make me say the word again, isn’t he?” I thought. With as much strength I could muster I manage out in a shaky voice “I’m here to rule out leukemia?”. His whole demeanor changed. His eyes went soft and he took a step into my personal space. Turns out he was the head dr on charge that day and he tried to have friendly distracting conversation with me about cameras and Apple computers. He moved on but his visit lingered for a while. It didn’t take long for a room to be cleared and to be nestled in with my parents for the journey. But I did note the people who left the room were now sitting on a cot in the hallway. What the frik is the big deal here???

We were told much of what the urgent care doctor told us. It could be from the abscess I had the week prior or something completely benign. They took more blood and we waited.,, and waited.. and waited. At one point, Dr. Einstein comes into my room as I’m using the restroom and tells my mother “this will either be an event or a non-event”. We made fun of that statement for a while, it helped pass the time. Five hours later (the comforting typical behavior we expect from a visit to the ER) they tell us I’m getting a room upstairs so they can run more tests to rule out leukemia. I guess we’re not going to hit the outlets today.
This was the day my world changed. I went from a young 30 year old single mother of two to a cancer survivor. I didn’t really know how much my life would change, but it was clear that it was about to change. The shock wouldn’t settle for days and the ruling never did eliminate leukemia from the short list. I didn’t leave the hospital for almost a month and even then it wasn’t for long. Treatment sucked and rocked all at the same time. No, I didn’t enjoy all the sick that goes with cancer treatment but I did enjoy the time to get acquainted with my new life. Everything changed. I’ve always prided myself on “living for the day” or having a good outlook on life and now I’m dealing with the reality of those life traits.

Today I celebrate day one of my five year cancerversary. In five years I’ve learned powerful lessons but never had an epiphany. I’ve evolved into someone who truly does take life seriously. I still cannot comprehend how much of a big deal leukemia is. Oh it hits home every now and then when a friend dies of the same disease and I’m very afraid of the fact that it’s most of my AML friends who relapse. For a while I was convinced my fate was going to be the same eventually. But I’ve learned to live with the fear and keep it under control. Leukemia IS a big deal. The fact that I beat 25% survival odds IS a big deal. I do know this (but it’s still very hard to comprehend) and it is for this reason that I will be celebrating the whole month of May. There is varying ideas of where to count your date of remission from. Some say the date of diagnosis, some don’t go right into remisson so they count the first clean test date or even the last treatment. April 29, 2005 I didn’t have my diagnosis yet and wouldn’t for about a week but It was the day it all started. The following day I was fitted with a hickman and the day following that my first chemo treatment. I spent the month fighting and evil I couldn’t comprehend and I won my battle. It’s for this that I will be celebrating not just today, but the month. I am a survivor in every sense of the word. I celebrate not only my own life, but the lives I’ve seen taken and the lives I know still fight. Cancer isn’t always a death sentence, even the scary ones. I love my life.

This year, I am grateful for how my family has come together. I’ve met (er, re-met) the man of my dreams (quite literally) last September and have begun to build a life together. If you asked me before I met Scott, if I would ever marry again, your answer would be an enthusiastic “hell no!” (quickly followed by my “never say never” mantra, but still.. NO). It seems like this resistance has been chipped through and I can’t wait to marry Scott. I can’t wait to give him that commitment. Granted, I (we) still have some baggage from our past so promising forever is a little difficult but.. today, I love him forever! Being with Scott is like being home. There is no place more comfy for me. When we are not close to each other, we feel it. We have an energy that is powerful and really fun to play with (heh). It’s magic, no doubt in my mind, pure magic. I’m grateful that I have found this magic.

We had the opportunity to have Scott’s girls stay with us this summer. I don’t see myself as a step mother kind of person and it takes some getting used to for sure. I’m grateful for that time I’ve gotten to spend with the girls for I’ve been able to fall in love with them as well. My family has doubled and it’s amazing. Course, we need a car now that can handle the 6 of us but we manage (two cars everywhere), groceries never hang around long and there is never any “me” time in our tiny little house but we manage. It’s exciting.

I am another year cancer free. Almost to my 5 year mark, that is a biggie. I am grateful that this year my cancer fears have gotten less and short of a blip of fear here and there, I’m living a “normal” life. I consider myself healthy (er.. kinda, unfit = unhealthy but who’s counting). I still go to support group but more to offer support these days than receive. I do still ball like a baby whenever I hear stories of cancer (NO, I refuse to watch things like Sisters Keeper), it affects me and I don’t believe that is a bad thing.

My sister finally left her no good cheating … husband and moved home from North Carolina. This is a biggie that I am grateful for. Not much worse than to talk on the phone with your miserable sister and want nothing more than to go scoop her up and pop a cap in her husband.. and not be able to. I try to not hate or even dislike anyone but some people make it so hard. I don’t hate him, but I certainly don’t have any respect for the bastard… oops getting side tracked, that happens on that subject. I am grateful Dawn is home and starting her life. She has all that she needs here and is learning to count on herself. It’s a beautiful thing.

For next year, I hope to marry my Ookie Bookie and cruise the Mediterranean on our honeymoon. I hope to travel more, work less (ah we can dream), make new friends and keep the old (kum ba yah anyone?). I hope to make it to Vail for the First Descents Ball again this year and revisit Montana for my FD camp. I hope Scott’s girls move home soon and we find the perfect house (and sell ours of course, want to buy a house?) to house all of us. Most of all, I will work on living my life with love and without judgment.

Ug! The Monday before Thanksgiving there are few spots on my torso that look like bug bites. That’s weird, I thought, this spider musta taken a bite, step, bite, step all the way around my side. About 8 or 9 bites in all. Then I recalled a spot here and there over the previous week or two and thought, I need to vacuum or something, effin bugs. These spots though seemed a little more irritated. By midday I was thinking they might not be bug bites. I had taken the week off of work so going to New Haven to see a Dr wasn’t high on my list of things to do.. until I suspected shingles. From what I saw online, the rash certainly looked like shingles, appeared where shingles normally would appear and they were quite irritated. I went to bed Monday thinking “we’ll see what it looks like tomorrow, maybe it is bug bites after all”. Tuesday, not better. Ug. With the holiday at the end of the week, I suspected the rash wasn’t going to go away on its own and waiting till the next week to see the Dr didn’t seem like a brilliant idea so off to New Haven I went. One look and the doc said, yep, that’s shingles. Gave me some meds, freaked me out a little with an association to cancer and sent me on my way. WHOA!! Shingles can be related to cancer???? WTF? He gave me a CBC to be sure and assured me that in the “old days” they’d be worried but not so much anymore. “What the frik does that mean??” I thought all the way home. I went home and did some research. Ok, Shingles can be caused by a weakened immune system and is related to cancer because cancer lowers your immune system. Shingles can also be brought on by stress (I’m not stressed, I like to think). CBC came back normal, phew..

Shingles are contagious. Depending on who you ask it seems the most say it’s only contagious to those who have not had or been immunized against the chicken pox or those who have a compromised immune system. Doh, it’s Thanksgiving in like two days! I also had plans to go see some of my dear FD family that weekend.. cancer survivors, prolly have compromised immune systems. I ended up calling all the people I was planning to see and everyone was cool with my cooties. Yay. I would take precautions but I was happy my cooties didn’t screw up my holiday.

I think I was lucky. Most people gasp at the thought of shingles because they either had them horribly or heard of someone who have had them horribly. Yes they hurt. I was surprised at how they hurt but by no means did they cripple me. I think I caught it early enough and the rash seemed to stop in its tracks. Besides a small pesky patch on my boob (lost another piercing, grrr), the other spots ran their course and dried up. I did stay out of work for two weeks just to be sure I wouldn’t infect anyone there. As of now, about 4 weeks later, my spots are all healing up. I still get sharp pains and the spots get sore every now and then but I’m good. Just another blip.

I read this paragraph today and while it's a bit confusing, it's also a very promising piece of text.

70% to 80% of acute myelogenous leukemia patients experience complete remission. In total, about 20% to 30% of patients survive and are free of AML 5 years after the diagnosis. AML patients who have not had a relapse during this time are considered completely cured, because most relapses happen within 2 years of the AML diagnosis.

Source: Leukemia Cancer Information

I feel like I've finally found the bit of info on the web (who cares how reliable or accurate it is, I know I don't) I've been looking for since my dx. Soooo all I have to do is make it to April and I'm CURED! Wow.

Anyone who knows me has probably heard me talk about my views on having an AML recurrence. Generally speaking, I’ve felt that it wasn’t a question of if it was going to happen, but when. Like most people, I seek information on my disease and unfortunately never got the ‘good’ news I was looking for. The survival rates just plain suck. It’s because of those rates that I had a ‘when I relapse’ attitude. I didn’t, nor do I dwell on it, I just take it for what it is, a damaged vehicle. I know my body isn’t going to make it for the LONG haul. It’s this mindset that keeps me active, it keeps me ‘young’ if you will. I plan on beating the crap out of this body and getting ALL that I possibly can out of it. I want to do all that I possibly can; I want to experience and feel everything. I choose not to crawl up into my fear bubble.. of course, that’s easier to say now that I’m 4 years out…

I attend my local leukemia and lymphoma society support group and have for a few years. Support groups are interesting. It is indeed valuable to be able to regularly talk to people about cancer and not only have them not be sick of hearing it, but can relate to it. I treasure the ‘support’ I get but it’s bittersweet. The price I pay is watching some people very close to me and my situation pass away. There are some in active treatment, some who’ve been in remission for a long time (such as myself), some who get sick again, newly diagnosed and sadly, some who are very close to the end. Through the years that I’ve attended, I’ve always been the youngest and aside from one other (who has since passed) the only AML (or leukemia for that matter) survivor. Many times I have commented on wishing to meet an AML survivor who is 10 or more years out. One who was not diagnosed as a child nor one who is geriatric as both these scenarios are different than my own. We had a nurse this week and I posed the question to her “Do you know of many (or any) leukemia survivors who are 10+ years out?” (I get mixed reactions when I mention this) Her thought is that there are long term survivors out there but they have made it past the trauma of their treatment and don’t wish to look back. . She wracked her brain but could only think of one or two that fit the bill. She also works more in treatment than after care so she wouldn’t have exposure.. ok, excuse granted..

I took all this with me this morning to my 6 month check up. Yesterday I had my blood drawn and while I feel good and was sure all was fine, I still couldn’t help be a little worried. I still was anxious to see my numbers when the Dr came in the room. I’m fine. In fact I was going to ask to move to 1yr visits but we agreed to meet again in 6 months and then move to the yearly schedule. I also took advantage of my time with the Dr and asked some pressing questions that have been on my mind. I asked him if he had many leukemia survivors who are 10 or more years out and he, without hesitation, said oh yes. This excited me and I dared press on.. I asked, “a lot?”, He hesitated and said well, there aren’t many cases such as yours to begin with but yes, and he paused to think, there about 10 in his mind that he cares for over the years. He then said that typically he only gets 1-3 cases like mine a year and while there are a bunch that don’t make it, there are also some who do. He stressed again that if I’ve made it this far, it’s likely that nothing is going to happen. He even dared to say the word “cure” but he looked uncomfortable doing so. He’s said this last part to me before and I still don’t hold much stock in it as he also admitted in the same conversation that we still have no idea what actually causes leukemia but, I still took comfort from today’s visit.

I’m fine

Some First Descents news: I’m signed up this year to kayak in Idaho in August. A couple of my FD friends also said they were doing the Idaho camp so I’m excited for that. I’m also very excited to meet some new FD friends. This is such a worthwhile cause; it makes so much difference in a life, in many lives. It’s amazing. Nuff said for now.. more to come..