Tuesday, June 27, 2006
Also really happy that I won't have to be driving as much- gas is killer, and I was thinking of either trading in the luxury sedan for a full tank or selling my kidneys on the black market. Luckily the Boob picked up the last fill-up (what a Sugar Daddy!) and I think I'm good until this weekend when I can work the pole. Hey, some guys are really in to (or, as the case may be, into)cripples.
I did take 2 chemo treatments off this last week to get over the infection in my foot/leg. It seemed to clear up really quickly, after only a few doses of Clendo. That means I was able to cut back a bit and get rid of the hives. I don't know if I could give you a definate on this, but just from my general itchiness today I think I've determined that the hives I've experienced over the last year have been one of the worst side effects. When I say they suck, I mean they seriously suck donkeys and they don't mess around about it.
The Clendo kicked in C-Div, which means I've been eating yogurt like a mad woman and trying to get some bacteria back in my stomach to fight that off. Hopefully that'll help, because nobody likes to give a stool sample, and I know you know what I mean.
So, yeah. I think one thing I CAN give you a definate about is that I overdid it again this morning on my foot. Geez, I'm so bad at this. Will I ever learn? I've got to get better at this taking-it-easy thing, as it does NOT come naturally to me. I know the facts, and that I'll hear from all of you on this, that I need to start paying more attention to what my body is trying tos say to me.
As far as the Interferon goes, a few people have written to ask how work has been while taking it. I'd first like to say that I think taking the year off while doing it was one of the best ideas ever. All 3 of my docs recommended it, and I'm glad I took the advice. I honestly don't think I could've made it a whole year working and doing the chemo. The level of fatigue you feel on it is pretty much indescribable. I've never experienced fatigue like this. Even now, 12 hours a day is not enough sleep, and by noon, I can't even walk across the parking lot without chest pains, heavy breathing, light-headedness, muscle cramps, joint pain, pretty severe pain in my leg, and sometimes nausea. When I try to go all day without my wheelchair, I almost always have to lay down for an hour or two in the afternoon to rest, and then I'm in bed by 8 or so. I'm up to almost 2 Vicodin a day for pain, and even with that, today I was still hurting most of the day. It doesn't help side effects either that chemo causes anemia, bringing on more fatigue and muscle aches. Also, because it tanks out the old immune system, I think it's pretty dangerous in general to be around lots of people while on Interferon. I thought that over time, the chemo side effects would lessen, but it really just changes week to week and you never know when side effects will be better or worse. I still have brain fog, the rash, gastric issues, nausea, headaches, pain, weakness, dizziness, pain, memory loss, occasional vomitting, and diarrhea (did I mention pain?) even after 11 or so months of being on this. Is it better than in the beginning? It depends what week it is, and how many treatments I've had that week. This will only go away after treatments end, as I understand it, but at some point you do start having a regular level of fatigue that feels, as wierd as it sounds, pretty normal I guess. Or maybe you just get used to it.
Anyway, enough of my rant. This week I've got a couple of check-ups and I'm going to start applying for jobs. Exciting stuff, kids! I'll keep you posted.
Sunday, June 25, 2006
Until I read the reviews on a book called "Dancing in Limbo: Making Sense of Life After Cancer," I wondered why I reacted so similarly in my own life.
It breaks my heart to see people going through this phase, thinking they're crazy or that they are falling apart at an inappropriate time. The truth is, there is no inappropriate time. They think, like I did, that we have no right to feel the way we feel, to feel overwhelmed, to hurt no matter what the current diagnosis, no matter if we're NED.
We all deal with this differently, and I just want people to know that- it's okay to feel this way. It's okay to break down. And it's SO NORMAL. When I read the reviews to this book, I understood for the first time that it was okay to feel the way I did, that it was typical step in the process of fighting cancer, and that people really understood. I want to share some of that info here, so others know, too.
All the best, and keep up the good fight.
Different readers posted these reviews on Amazon.com. I hope they help.
"Here's a book that finally tells the truth about living in limbo. For those who are surviving cancer, it provides validation, support, and guidance in coping with the threat of recurrence ... a process that stretches into the years following a cancer diagnosis. For families, friends, and health professionals, it eloquently and powerfully portrays the emotional experience of life after cancer—helping us to better understand, admire, and learn from those who have had to confront their mortality and are forever changed by this experience."
"I immediately wanted to recommAnd this book to my patients. [It] will serve as a roadmap to help cancer patients to anticipate feelings and stages of the coping process. It will help demystify the complex and often baffling set of experiences on the uncertain path of cancer survivorship."
"Dancing in Limbo leads readers through the dark morass of grief over so many losses to the new, positive identity of a survivor. The authors, Glenna and Lisa, quickly become companion travelers, offering wise counselor and helpful insights that guide the reader through what otherwise would remain an agonizing worry and darkness."
When you visit the health section of your local bookstore, you'll find a plethora of information about getting through a cancer diagnosis, and very little about how to adjust to life after cancer. As the founder of a cancer support group, I believe that survivors are leaving our hospitals in droves - unprepared.
When a cancer patient "graduates" from treatments, she might exit the hospital floor amidst claps, cheers, and balloons. Her loved ones can finally breathe a huge sigh of relief, for she is out of the worst danger. Everyone wants to celebrate and get on with LIFE!
But the feelings inside the patient leaving the crisis behind may be those that she never expected: anxiety, fear, uncertainty, confusion. She leaves the constant medical care that has saved her life. She leaves attachments that grew when she was under incredible stress. She enters a world where everything is okay, but she doesn't feel okay. What does she do next? What meaning can she add to her life after all of this? How does she make sense of everything that she has learned because of cancer? How does she relate now to her healthy friends when she feels tired, hurting, different, or disabled? These are the issues cancer survivors dance with for the rest of their lives.
This book addresses, in a personal and realistic way, the effects of cancer on our lives - after treatment is finished. The authors interviewed dozens of cancer survivors and received the candid responses that you'd expect from those who have been through it all and want to help others.
One of the most interesting parts of the book for me was the discussion of how people handle trauma psychologically. It helped me understand the different approaches we each take to cope and make sense of a cancer crisis. I am now more accepting of others who view their cancer experience in a different light than I view mine.
I also came to a deeper awareness of how my cancer affected my loved ones, how the process of dealing with diagnosis and treatment is so different for them than for the patient. This showed me why my loved-ones may not fully understand, or want to think about, what life *after* cancer is like for me. ..
If you love someone who is finishing treatment, or if you have finished treatment within the last few years, I urge you to buy this book. It may be more expensive than the other books out there, but it is SO worth it. This is the perfect cancer graduation gift! Just giving someone this book shows them that you understand their battle for a full life doesn't end with treatment. I wish I could give it to every survivor I know." ---
"I can't remember who suggested this book to me while I was recovering from surgery and radiation for liposarcoma in my leg. It must've been someone from my online support group.
At the time I was physically recovering but mentally I had stalled and I couldn't understand why. Everything had gone as well as possible but still I was just moving in slow-motion, numb and kind of confused.
This book has a few basic elements that will apply to everyone who has been affected by cancer, the most important being that you will never find the old "normal" again, and that's why so many survivors feel lost during their recovery. Your old goal is gone but this book will help shed some light on the process, how it works, how it affects people and how you are not alone in your feelings."
"This book made all the difference to me when I finished my first rounds of chemotherapy back in 1998. Glenna and Lisa help make sense of the conflict we feel when our "active" role in fighting cancer is over, when we feel abandoned by our doctors and support networks.
I've recommended this book many times to others currently in treatment, and they are astounded that they could ever "miss" going for their weekly chemo. Incredibly, the feeling is very common! I like to go back to the book on occasion myself; although I've been in active treatment for 3 years now, there are still times I find myself reaching for the wisdom and clarity that Glenna and Lisa bring to what is a bizarre, scary, demoralizing time.Highest recommendation!"
"Thank you so much for this wonderful book! I have been a caregiver for my husband for the past 9 months. Once he got a "clean" bill of health I didn't know what to do with myself. I thought I was going crazy! You take charge and be the rock for so long and then all of the sudden you don't have to do all this stuff anymore. I went and saw a counselor at the cancer center and explained what I was feeling. She said I was right on schedule and I wasn't crazy. She suggested this book and I tell you what it was a life saver!!!!! Everytime I would be going through a moment I would read the book and I was right on schedule!!!! Scary!!!! I would recomend it to anyone who is dealing with life after cancer. Thank you so very much!!!!!!"
- Peggy Coffey
Tuesday, June 20, 2006
Cancer has done a lot for me in the reality department: some days, when I think, I'm just going to push my way through this and pretend it doesn't hurt and I'm sure it will be fine- it actually isn't. I run myself into the ground doing too much, and I don't bounce back like I used to. This is twice as difficult because I feel so young, and I think about 30 being just a kitten in the big scheme of thing. So I put myself through more pain than I need to because I assume everything will be fine if I just keep moving.
This weekend, I had a feeling something was a little wrong: I was way too tired, but thought if I rested, everything would be fine. By Monday afternoon, I'd spent too much time on my feet, the lymphadema was really bothering me, and I was starting to have a shooting pain up my leg. Tuesday morning, it was oozing pus, and now the infection on the scar on my foot, which I evidently had all along, is up to my ankle.
Is everything going to be fine? I'm sure it will be, yes. But it's obvious to me more and more and in many ways that I'm just a human, and maybe I need to take care of myself a little better instead of just always assuming it'll be fine; instead of just pushing to succeed. I've always been this way: hate to ask for help, know that I can do it by myself, don't even like it when people hold the door open for me when I'm in my wheelchair. I think it's why I love to run: it's as much a mental exercise as a physical one, and strengthens my ability to push myself as far as I can go. When I run, I think, "One more mile." And then, after that mile, "I can do one more mile." And after that one, "One more mile is nothing...." and so the story goes.
Infection, however, in a leg with no lymph nodes is a big deal- the healing process is slow and since my numbers are low, it's twice as bad. I'm allergic to penicillin, which I know the Doc is going to prescribe anyway, so I'll be an itchy witch for the next couple of weeks. Benadryl helps, but it'll be hard to work with Benadryl in my system.
Could all of this been prevented? Yeah. Probably so. My bad. Another lesson learned, I hope this time for good.
In light of this, though, I've realized, I think for the first time, that I really have accomplished something. A year ago, I had surgery, and it took away all of my independence. I couldn't drive, couldn't work, couldn't even walk. I spent more than a month in the hospital, then spent the next 9 months developing every possible side effect from Interferon. Essentially, that means I've had the flu for almost a year.
And now things are better. I'm back at work, even though a lot of the time I have to use a wheelchair, but working has made a world of difference in my self esteem and my outlook. I have a life again. Through all of this, I've thought, "I'm sure things'll be fine." Here I am, almost done with this journey, and I can honestly say for the first time, I think I'm proud of what I've done and how I've handled it.
That's a big thing for me. I'm looking for the first time at my experience through other's eyes, and it's a refreshing change. Is it a big deal? No, not really. People go through this all the time, thousands upon thousands of people survive cancer. And now I have, too. I look back and think, yeah, there were things I could've done differently, but I'm here now, and it's almost over. I don't beat myself up for not working, for the weight gain, for all the things I've taken hits for from other people or myself.
For those that have been supportive, for those that have been there the whole time and told me to rest when I was tired, who understood when I slept through dates, who checked my blog every day, who posted inspiration to me on MPIP, who always said "Keep it up" and never said, "You know, people on chemo do work" or "You'd feel better if you got out of the house," I dedicate this blog to you. You have been the reason this has worked, and I can not tell you how lucky I feel. So lucky and so unworthy of such amazing thoughts and prayers.
Okay, enough of the mush. But I do want to end with this: I love you all and I thank you again and again and again for all you've done.
Monday, June 19, 2006
It seems so wierd that just a month ago I was screaming and crying over finishing up this chemo. I was so mad that I felt so sick all the time and that I couldn't just, say, drop off at 10 months and call it even. Do I still wish I could've stopped? Heck yeah, but I didn't- I'm finishing up, and things are looking good. I'm taking a lot more pain meds than I'd like, but, let's face it: it's whats getting me through right now and I think that's the way its going to have to be for a while, at least until this is all over. And, as Bobby says, hey, I guess that's what they're for.
I spent this weekend just really resting and trying to get back to a good state. You know, line up my chakras and all that jazz. Friday after work I came home and thought I'd take a nap before dinner. Next thing I know its Saturday afternoon at 3 p.m. I guess I was more tired than I thought I was. The rest was really good, and I took another nap at 6 and didn't get up really until Sunday at 1. Life of a working girl! Who loves it?
The only thing that sucked about my weekend semi-coma was that The Boob made dinner for me on Friday: went to the store, brought it home and fried it up in a pan, set the table up with candles and made dessert and everything. He said that after an hour of trying to wake me, he finally gave up and just ate without me, gave the dog my tacos and had a beer by himself.
Poor Bobby. He does so many nice things for me. I can't wait to be normal again so we can have fun like we used to and I can treat him instead of him always having to treat me.
On another note, is gas a killer or what? Dude, barely getting by having to commute everyday with such little cash. Thinking of trading in the luxury sadan for a Vespa.
Anyway, besides that, I'm still awaiting my results on my certification test, I'm working on looking for jobs for 6 weeks from now. SO excited about being out there again. Pretty soon I 'll be back to running and bringing home that paper, and I'll be that girl out there that people will be able to say, "Did you know she is a cancer survivor?" Does that sound wierd- to want to be a model of normality in a f'ed up world?
Anyway, toss it around inside. Make that money but don't let the money make you....
Tuesday, June 13, 2006
Well, it's been interesting, I'll tell you that. Evidently the Elavil is working, because I accidentally uploaded the wrong picture 4 separate times. Now, where did I put that heroine needle?
Last week (Monday) I started student teaching/observing at a local elementary school in the morning, and going to an "institute" (not the kind I'm usually in) to learn teaching techniques in the afternoon. So my days are now filled from 7 a.m. to about 5 p.m. out of the house- a big, but very good, change from the days I was doing chemo and then locked up in the warehouse all day.
I'm tired- I'm really, really tired- but it feels good in a lot of ways. I sleep most days from around 5 p.m. to the next morning, with a small break when I'll get up, do some more chemo, have something to eat, say "hi" to the Boob, take some pain pills, do some homework, and then go back to bed. My leg's been really hurting, but I'm hoping I can adjust to all this and become the production member of society that David Hasselhoff would want me to be.
That's really all that's going on with me. Stupid Comcast isn't working at the casa, so I'm doing remote posts (which is why it's so short), but I'll be posting longer, and of course fascinating, blogs later to keep you all updated.
Peace and porkchop grease, people, and keep the candles burning for me.
Thursday, June 01, 2006
I got a great email the other day; I'd been feeling really bad, and feeling sorry for myself, so I posted on a forum what was going on with me. When I got this, it totally changed my outlook, and I thought some of you might enjoy it, too.
(I've edited some of this to shorten the length, but you'll get the picture...)
At one point I had hit a very low point in my battle with melanoma. I had 25 malignant lymph nodes removed under both arms with two axillary node dissections done 90 days apart as well as having suspected lesions in the lungs and liver. My original surgical oncologist who became a friend and also had melanoma, had recently lost his battle and died which was almost like losing a parent. What were my chances if they couldn't save my physician? I was told that my chances of survival were less then 5%.
At the time we were living on St Croix in the Virgin Islands and were then hit by Hurricane Hugo (a category 4 storm) that destroyed our home,cars and did serious damage to our business. I was beginning to think that maybe someone was trying to tell me something and that I was no longer welcome on Planet Earth. Then I came across a book called "You Can't Afford the Luxury of a Negative Thought." In a way the title of that book became my personal battle cry. I decided that I was going to make a maximum effort to combat this disease on all fronts and was determined to try everything from good nutrition, exercise, positive thinking as well as going to the very best doctors I could find. I was determined that if it was my time, so be it but I was not going to have any "I should have's" during the final moments of my life. I took one day at a time and tried to live each and every day to it's fullest.
Hope this helps you all as much as it did me. Love ya!