I am not a number

What a crazy crazy week! It's been tough, that's for sure! Chronic illness is never fun but add another passing illness to that and oh boy! I can turn into a crybaby right fast! This time it has been a throat infection which tested negative for strep BUT won't go away without antibiotics. This was given to me by my wonderful 14 year old son. Fever, sore throat, overall just plain awful feeling. Yet life must go on no matter how rotten I feel! It didn't take me long though, after dipping into crybaby poor me mode, to realize that although I might feel poorly, at least I was HERE to feel poorly. Eight years ago things could have gone quite differently for me. My cancer was advanced. My body was weak, anemic. My prognosis.......well I don't know what my prognosis was. I refused to hear this, refused to allow the doctor to tell me this and in fact when my husband asked the surgeon about this I quickly jumped into the conversation and asked him not to answer that question. This information is based on statistics. Statistics are numbers. I am NOT a number. I am a living, breathing, child of God and He alone knows the number of my days. What good would knowing my prognosis do me? I was going to fight with every bit of my might anyhow. I wasn't about to put up less of a fight just because my chances might not be as great as I had hoped. I jumped into this fight with both feet on June 13, 2003 and nothing was going to change that. I look at every day as a gift. I have been given a gift of eight years now. Eight years I might not have had. Eight years for which I am very, very grateful.

Another year later.....

Wow! It has been more than a year since I last posted. Apparently I stink at this. BUT it is a new year now and I have new goals and this blog is one of them. I started it originally thinking it might help some families going through this drastic disease, FAP. It affects the whole family and is a lot to deal with. We have had our share of trouble. Almost two years ago my husband and I had to separate for a while. Things just got too tense. I didn't feel well, he couldn't understand this. We agreed to seek counseling. Wonderful things happened then. We began to communicate, to see things from the other's perspective. We went from snarling like wolves every time we saw each other to being able to sit and talk. Anyhow, what does this have to do with my blog?? I still see the counselor, am learning much and one of the things that has been suggested for me is to write. Every day. Every single day. I haven't been doing this. I am going to now. Writing is very cathartic and a wonderful outlet, especially for someone as shy as I.

Health wise, I have had my struggles. Last March I had a GI hemorrhage that landed me in the hospital for 11 days. I lost a lot of blood and had to be transfused with two units of blood. The blood from another person, a person so kind and thoughtful as to donate their own blood, a person to whom I am so eternally grateful and remember in my prayers nightly is flowing through my veins. This unknown person saved my life. God bless them This fall I suffered two abdominal blockages about a month apart. Both resulted in a week in the hospital. The staff knows me by name there now! I have changed my diet to a low fibre diet. So far I have avoided any more blockages but I have put on weight. Okay, so I needed a few pounds. But I don't need as many as I gained so for the first time in a long while I am focused on LOSING weight! This is a GOOD sign! A sign of health that I can gain weight and keep it on. Praise be to God. But now I will need new clothes..........

I am completely and totally blessed. Yes, there have been hard times and harder times but by the grace of God I am alive today. I have two wonderful boys who certainly can make life challenging yet interesting at the same time. I have a husband who is able, on his own, to provide for our family since I have lost my employment. I have wonderful family, close and extended, who have truly been a Godsend to me these last seven years. I have the absolute best friends in the world who can easily and quickly change my mood and make me laugh. Always. The cancer road is tough, I'll admit that, but the lessons I have learned so far have been precious and turned me into who I am today. God willing I'll have many more years to learn many more lessons and to set a positive example for my boys. These last four years have for some reason been tougher emotionally and physically than the first three. But that's okay. I'm still learning, and honestly wouldn't trade the last seven years for anything.

Summer Time Blues

I have found the summer time quite difficult these last few years, especially the weekends. I feel unmotivated and lazy and useless so this ache in my gut presents the perfect excuse for lying around and watching TV all day. I am the epitome of a procrastinator putting off all possible chores and errands until 'tomorrow'. I hate this in me. Something has happened in my life recently that I haven't mentioned and I believe this is hugely contributing to my depression this summer. I have lost my job. Found out the first of May. I am still trying to come to terms with this. The job I so loved and was so proud of (for to hold a job for over four years with a cancer and chronic disease diagnosis I think is pretty outstanding) will not be waiting for me this fall as in previous years. I loved my job as a pre school teacher assistant. It was perfect. Part time, home by lunch and off when the kids are out of school. I couldn't ask for better. The money wasn't much, but this accomplishment to me wasn't about money. It was about doing something I loved with people I loved. But my all too often absences finally put the school into a postion where they felt they couldn't keep me on. I have been asked to substitute which I am considering, but the day to day being a 'part' of a classroom is gone. It hurts, is a heartbreaker really and is just one other area of my life in which cancer has taken over. Oh I won't give up, won't give up the fight, but I do feel the wind has been knocked out of my sail for a bit.

I do plan to keep up with this blog. I do not feel it has fallen into the pattern I want it to yet, but feel I will eventually get it there. Thank you so for taking time, which is very precious, to read my postings.

No one ever told me this disease would be easy to live with and it's a darn good thing too because life has been far from easy with this horrid diagnosis. But that doesn't mean it hasn't been fulfilling. Getting used to the ostomy again again has been a real challange. I realize now that I have had Oscar (my cute little nickname for the pouch) for a year and a half now, 6 months longer than I had the first pouch back in 2003-2004. And the appliance is every bit as difficult to deal with as it was back then. I'm going to guess that it never really gets easy. Oh many people with the same have told me 'you need to get used to it, accept it as part of your body and things will be fine'. Oh yeah? Well I am sure these people are quite well meaning but the fact is I accepted the appliance years ago, realizing that it and the wisdom of my wonderful medical team were probably the only reasons I've been around for the last seven years to complain about it! The getting used to it? Perhaps that is still to come. I can't sleep well, am always uncomfortable. And really it is a petty and selfish complaint with all things considered. I am here to enjoy my children and to try to set example for them which is what I aim to do. Both boys have a 50% chance of inheriting my faulty gene, which of course is dominant, so if they do get my gene, they get my disease as well. The good thing about knowing this is that we can have them monitored beginning at puberty. The bad thing is that we may find out they have the disease. I dread this knowledge. Dread knowing that the surgery and chemo that are now behind me might well be in their future. I take comfort in knowing that medicine and procedures and techniques are always changing and growing and maybe, just maybe by the time my boys are old enough for the surgery things might be a bit easier for them. I've always heard a parent's goal is to make things just a bit easier for their children than it was themselves. I agree with this, just wasn't thinking along the lines of cancer when I first heard it.

I am going to Charleston tomorrow, to the medical university just for a check up and possibly a change in medication for one med in particular that's giving me a hard time. By now, I can make this drive (3 hrs.) in my sleep, but I don't dare! The boys are going with me and we hope to spend time with my sister and her family for a little vacation. We need it.

March Madness

I've been in this fight for nearly six years now, actually I was diagnosed with FAP six years ago this week. It was during the March Madness basketball tournament and I remember because I spent six days in the hospital undergoing testing to see just what organs this awful disease had decided to affect and figuring out what steps to take next concerning treatment and prevention of cancer (we didn't know then that it was too late to prevent cancer, I already had developed stage 3 colon cancer). ANYHOW, I watched every bit of the last week of the tournament from my hospital bed. I had been admitted from the emergency room after spend hours and hours there because I knew something was terribly wrong and I would need to be admitted. Thought I'd be smart and skip the step about going to the doc and just go straight to the hospital. BIG MISTAKE but that's another story. It's also why I am not treated at the local hospital anymore, I'd rather travel 3 hours to the medical university. After arriving in the ER at nine o'clock in the morning I was finally admitted to the hospital at midnight, maybe even later, and of course this hours after an ER doc told me if my potassium level dropped another point I would be leaving the hospital with a toe tag. This also an example of why I travel to the medical university.

It was a very weird week. I shared a room with an elderly diabetic African American woman and I so enjoyed it. We watched the Golden Girls on TV. We laughed a lot. This makes a big difference. Her friends laughed too. I'm a big fan of laughter. There were so many tests and x rays for me that week, but after the first test, which was the colonoscopy, we had a name for my disease. Familial Adenomatous Polyposis, FAP. Very rare. Very dramatic. But it explained a lot. The constant anemia, the extreme fatigue. The pain in my gut that I'd had for over a week with no relief. But it also left a hell of a lot of questions. Where'd it come from with no history of it in my family? How would this affect my life? What about my siblings and children? How will we treat this? I'm still working on answers to these questions. Some have been answered. Some answers have changed and some questions have changed. But there is a constant in all the madness. Laughter. Laughter relieves so much of the emotional and physical pain. Laughter keeps me in the present moment, or brings me back to the present moment if needed. Laughter heals my soul. And the best thing is.....laughter is free!!

CT scan results

I had my first post operative CT scan on Monday and am so happy to report the scan shows No Evidence of Disease, a state we call NED in the cancer world. So I am very happy to be 'dancing with Ned' still after five long years! The doctors all agree things are going quite well. My blood work looks great and I am not anemic at this time, a condition I struggle with quite often. The trips to MUSC in Charleston are long and exhausting so I have started staying down there an extra day to make the drive back home less difficult - it's about a 3 hr drive. I attend all of my doctor appointments alone, this is my choice, unless there is sedation involved. I may complain about these visits sometimes but in all honesty, I couldn't ask for a better facility to treat my illness and I totally trust them to take care of my boys too. My surgeon is one of the most 'good natured' and people friendly physicians I've ever met, and believe me I've met a LOT of them. His primary concern upon every visit is my comfort level and that means a lot to me. He knows me very well and doesn't even need to look at my chart when I am in office with him. He remembers it all over the last five years.