Elizabteh

Notice the spelling mistake in the title of this blog? Yeah, that is how my name is spelled on my driver's licence. Great eh. Hahaha. And the funniest part is they won't change it for me, I have to do all the leg work and paper to get it spelled properly and it was their fault! I now understand how people can get so frustrated with government processes.

Anywho, life has been going decently lately. Sometimes I almost fear enjoying myself. It is weird. I am afraid that if I enjoy myself all of a sudden I will get some bad news...something will happen to try to rob me of my happiness. Call me crazy but it does cross my mind. Nevertheless, I have been enjoying my time off from treatment (back to the chemical cocktail next week!!). My fissures have decreased in number, I only have one left which is WAY better than three. So, I am continuing treatment on that area and hopefully within 3-4 weeks that one will be gone too. I am not sure if I will be able to use the cream during chemo though because it effects your blood vessels, or something like that....eek, I will cross that bridge when I get there. But I am going to kindly let my gyn/onc know that when I first started having this problem and I called his office one of his nurses told me to take a Tylenol before I go to the bathroom to ease the pain and that there was nothing else that could be done (the oncologist here in town who saw me for my neutropenic fever told me to call my gyn/onc for follow up from the fever and the fissure, which he discovered..in both aspects I was told by the nurse at my gyn/onc office that they did not need to do any follow up...like it was no problem of theirs...YIKES! That thinking scares me!! And those who know my story know why).

After this and being told if the cancer grows back I am up the creek without a paddle (he did not use this analogy but that is the one that comes to mind with what I was told), I am definitely going to ask if "they" are in this to win it with me because I am not feeling the love. And please don't let me chicken out about this. Hold me to it! Sometimes, even after all I have gone through, I don't always speak up or I think about something after the fact. It can be so overwhelming and I feel like I am rushed along and that the people at the cancer centre don't particularly care...which is fine by me, but pretend you do when I am there and you are working with me. Eek, it is not horrible. Please don't get that impression...take into consideration my past history with medical facilities and doctors. There are very extremely kind and compassionate people who work there whom I have gotten to work with and know. I do not want to give anyone a bad rep. Just sometimes, I get this feeling... Maybe all cancer patients feel this too. Maybe I think too much. Maybe I am insecure about...something... Who knows?

And, on the flip side, sometimes I want to remind people that I am also dealing with the loss of Jason. I think sometimes people forget that. I am a mess but slowly I am making my way through all of the crap and putting things upright and finding my path again. Slowly.

Cheers,
Liz

How Do I...?

When treatment is done in June, how do I go back to my life? How do I proceed with living my life considering it has been greatly changed. This boggles my mind. Jason is gone and I have battled this beast called cancer. Jason...I have to deal with this and, in time, it will get easier (so I am told). There is nothing I can do there. No amount of worry, prayer, tears, or anger will bring him back. I must resign myself to this fact and learn to live my life without Jason here. If I figure out the secret to doing this, I will let you know.

Then, there is that beast called cancer. How the heck do I go on living knowing that at any moment it could be invading another part of my body? It could be latching on to my lungs or my liver or some other place. With every little ache and pain will I always be thinking with trepidation, "It's back?!"

Treatment will be done and people will say, "You look good." But we all know looks are not everything. Did you see any wedding pictures of me in my dress all dolled up? Did you think I looked good? I had cancer then. I looked perfectly fine all those years I had cancer. What the hell is "looking good" a measure of? Nothing, or, more honestly, it is probably a phrase representing the hope other people have for me, that I am truly healthy again and that the beast will not rear its ugly head into my body again. How do I tell people it is not that simple?

So, do I just keep going with my life? I guess the answer is "yes," I am just not sure how to do this. I know this is a big issue for us young folks at the end of treatment. Do I resume my job search? Do I chance to live a little without fearing the beast? If, for a moment, I forget I have battled the beast, will it return just to spite me? If I start enjoying life to the fullest again, will it return just then? Should I be miserable... then maybe it won't return?

How do I balance the fact that if the cancer returns I will be, again, at death's door...with my code punched into the number pad. How do you go from dying to living? Of course I hope and pray it does not return but, I cannot bury my head in the sand ignoring that it could return...even saying "could it return" is a lie...if it does "return" it means it was never defeated. Do I go on living and say "I am healed. I beat it." I would think not because I feel that would be somewhat of a lie. I am not sure it is gone, there is no medical measure that can guarantee me all the cancer cells were killed in treatment....only years lived after cancer can tell me whether or not the cancer is gone. And it is not as simple as the 5-year mark either, although most tend to believe this, even the medical world has fooled itself here. If someone reaches the 5-year mark after cancer, there is a decreased chance of getting it again...but there is a tiny chance that one could still see the cancer rear its ugly head again after 5 years...and we all know from previous blogs how even the smallest percentage can catch you off guard. People may say, "Yes, you are in remission!" How do I tell them it is not as simple as that? Do they even care to know that it is not that simple?

Will I be able to enjoy a beautiful day for what it is and not think about the beast or dying?

I need to look myself in the mirror and keep repeating, "Take it one day at a time. Take it one day at a time..."

Yours,
Liz

"Seven Steps to Health"

Did anyone else get a pamphlet with these words on them? It is from the Canadian Cancer society (CCS), an organization that does many good things. They raise money, provide many forms of support, they offer rides to treatments, and the list could go on. I volunteered in the office for a summer in my youth and I thoroughly enjoyed my time there. There is just one teeny, tiny problem I have with the CCS.

While enjoying my 12 hours of sleep today I missed the canvasser for the CCS so they left this lovely pamphlet in my door entitled, "Seven Steps to Health." I always laugh when I see articles like this in magazines, etc, because, as it is in my case, the "Seven Steps to Health" did not benefit me at all. I followed each one of those guidelines regularily and was also eating more organic foods, among other things. Now, I did enjoy a treat here and there but for the most part I was quite healthy. My issue around articles like these is: why don't they tell us what chemicals, etc, are used in our everyday products --> from house-cleaning products to personal hygiene products to lawn products to the food we put into our mouths.

I believe that we are not told the harmful effects of using some of the products we find under our own kitchen sinks! I am sure there are things that are in them that we should not be in contact with on a regular basis at the least. But no-no, as the "Seven Steps to Health" makes it seem, it is my fault for my cancer because all the "Seven Steps to Health" point out is things that I should be doing...and if I still get cancer even though I followed these "Seven Steps to Health," it is somehow my fault. It does not highlight anything that is in our environment (besides the obvious: smoking), that we are sold (from advertisements to empty promises) about products that are in our everyday life. What about that magic eraser cleaning product? What about that glass cleaner? What about the scented soaps and perfumes? What is really put into our food products before we get them? I am not trying to scare anyone, many products are so embedded into our culture that we have ceased to question them (if we ever did question them)...we don't second guess what harm they may be doing to each of us and our health. So, well, maybe indrectly it is my own fault.

Why do we not ask questions about what is in the many many many many products that are available to us that are to make our lives "easier." Really, in my experience, when things come easy, there is always a catch that we don't notice right away...could this be a place where we need to really evaluate our products not for the environment's sake, but for our very own?

Why does no one tackle this...wait, there probably are people who are tackling this issue but they aren't the rich "gate-keepers" of the information that is filtered down to us. I have searched this topic because I have been concerned about this topic for a few years (mainly, since I first started feeling ill and was getting the brush-off from doctors). But, answers are hard to find. Why is that?

This is what I want to know.

Cheers,
Liz

ps- I am not trying to simplify cancer...it also involves genetics, among a list of other factors...

Please Don't...

Having had a total abdominal hysterectomy...

This is a picture of my nice incision. Not bad, eh. My gyn/onc/surgeon and his crew did a nice job and stitched me from the inside, hence, the incision gets bigger as it goes down. Now, the whole incision is not visible. As you can see I used towels in strategic spots, otherwise it would have been an R-rated picture. Hahaha!

...I have been placed into a group known as people who will experience "surgical menopause." What does this mean? Since I have no ovaries (or uterus, cervix, and tubes) I will be having hot flashes instead of babies. Right at the moment, being in treatment, it is not distinguishable what are menopause symptoms from the surgery versus the after-surgery treatment. For those who are not aware, the chemo cocktail I enjoy gives women menopause symptoms...all of its own.

It strikes some people as funny that this is going to happen to me. And some like to point out when I take off my sweater or toque that I am having a hot flash (like people who aren't in menopause never get hot and take off their sweater). Nothing bothers me more than this. Yes, I know I am in surgical menopause, however, I choose not to think about it and all the ways my life will change from that or how I am disgruntled that I am already in this stage of my reproductive life. I cannot relate to young women my age in this department and I DO NOT like only being able to relate to old(er) women. Now, I know there are a minority of surgical menopause people like myself but, unfortunately, I do not deal with them each day...it is mainly the people who fit the "normal" categories of society (like there is any real "normal," but you know what I mean). Of course, seeings my cancer is what it was, I am not able (nor would I even) take hormone replacement therapy. So, I would like to conclude this paragraph by saying that I don't point out your health and medical conditions so don't point out mine. I hate it. I am in my 20s!!!! I should not be in surgical menopause....as I typed earlier, I should be having babies!

So, I have come to the conclusion that if some people want to remark about me having a "hot flash" then I will feel free to remark how their butt has grown or that they have hair growing out of a mole or that their head is too big for their body type or that their foot is stuck in their mouth. Hahaha!

Just giving you a heads up.

Cheers,
Liz

Answering Question...

Well, this is a first...someone asked me a question! I love answering questions, especially when I know the answer! I have added a contact e-mail under my profile in case anyone else has a question...just click my profile ("About Me"). Anywho, the question was:

Is the cancer you have detectable in a pap smear?

The answer is no, it is not.

Most women who get this cancer are post menopausal and the first symptom when you are in this stage of life is some bleeding. However, there are women pre-menopausal who have this cancer too. It is rare under 40 years of age.

So rare for someone my age (0.05%), which is why I went misdiagnosed for years.

Cheers,
Liz

Comments on What to Say

So, I was looking over the comments on my blog lately (and I LOVE getting them) and I thought I would comment on some. I took suggestions from the comments on P-WACs because I thought it would be fun to give my thoughts on some of the responses. The comments I have taken from the P-WACs blog are highlighted in red and my comments are in black. Please don't take offense, I just thought I would add my 2-cents seeings I am going through this right now.

#1 -- I recommend saying, “It’s likely to be nothing serious,” or “I hope it’s nothing,” or "You’ll probably be fine” -- I would not recommend saying this at all. It seems to trivialize the patient's worries and anxieties. I know I hated people saying this to me. What I liked the most was when I received an e-mail or card or phone message or note or letter, etc, saying they were thinking about me.

#2 -- It’s perfectly OK to say, “I don’t know what to say,” or “I’m sorry to hear that,” or a hug may be just the right response. -- Totally agree with these. Sometimes these are the best responses. It is as if someone is acknowledging that there is no simple solution or words to make the patient feel better and they do not take away the patient's experience. Sometimes it just sucks and you have to be OK with that, words cannot make one feel better or comforted all the time.

#3 -- Instead of "How are you?"....how about “How are you, really?” A variation could be “How are you today?” -- I never like this question, no matter how it is put. Firstly, many people ask this question in one day, so what are the odds the patient is going to feel like really answering this question 35 times in one day. Very slim. Secondly, it is a trivial question. If the patient feels like opening up and talking about how they are doing, they will through out the conversation. A patient needs to open up and talk about how they are doing in their own time, not someone else's.

#4 -- Don't just say that you're there for them. Offer to do something tangible like cook a meal or baby-sit the kids. -- Totally! Be specific. Say what day or when you can be there and how; don't just throw it out there to be heard because I know for me, I don't know what a good time is for you or what you would like to do, so let me know. Also, being offered help is nice, but some (if not most) people (esp. us young people) do not know how to ask for help or we feel like we are being a pain in the butt or we are too stubborn (we are young, why should we be asking for help?!). So please, be specific with a patient about when/what/how you want to help. (Gwen, you are great here)

#5 -- I don't really need advice. It's hard to keep track of every new drug or treatment or diet or whatever. It all becomes a little overwhelming -- Love this; really true. People are well intentioned but there are so many who share their little secret cure or remedy, etc, that it is overwhelming. I totally know people are trying to be helpful. If you do want to offer advice, time it well or have more info about it, maybe send it in an e-mail so the patient can look at it in their own time. I find that when I get a lot of advice I start feeling anxious that I should be eating this or that...or I should be doing this or that...etc, and it just becomes more of a negative help than a positive help.

#6 -- There are no magic words that I need to hear. -- True. It is not possible to give me any magic words, even if I am desperately looking for them.

#7 -- And I don't think that people are insensitive, I think it's hard to know what to say. -- Yes, so true. Especially when the patient is dealing with more than one awful reality.

#8 -- Listen without always feeling that you have to respond. -- Good one. Sometimes the patient just needs to let some air out and talk about what is in their head. Also, when the patient hears themselves talk, they better understand and they feel better that someone listened to them, as well. The patient does not always need a positive spin put on what they say, etc; sometimes they just want to be heard for what they think, what scares them, what they are fearing, etc.

#9 -- Don't feel you must put up with serious displays of temper or mood swings. You shouldn't accept disruptive behavior just because someone is ill. -- I agree with this, however, do not be surprised if a patient does act one of these out. It probably will happen, especially with those who are closest to the patient (just ask Neil or my Mom). Remember, also, that some are dealing with a double whammy (like me). Don't take it personally if a patient does act out one of these...they may need some space or air by themselves (a punching bag works for me). Sometimes the patient does not realize the anger they have inside or the fears they were trying to ignore all of a sudden hit them...it can happen anywhere and anytime. Cancer is a big mental game, too, which can make it all the more exhausting and frustrating at times. Ask yourself if you can stay mentally tough 24/7 all of the time when you are not sick...the answer is probably no...so imagine if you are seriously ill, how hard it would be. Be assured, the patient will feel bad if they act out one of these and they will seek reconciliation, eventually, so don't make it hard for them to do this...maybe even take the first step.

#10 -- Don't be afraid to talk about the illness or always feel you have to talk about cancer. -- Too true. If you have a question go ahead and ask it. For me, I would like to talk about it and answer any questions. But also know that cancer does not have to be the only topic...the patient likes to hear what is going on with you or other news, etc. Talking about cancer 24/7 would be hard.

#11 -- Don't tell the patient, "I can imagine how you must feel," because you really can't. -- Agreed, especially if you have never been seriously ill with the disease. There are many factors involved that are subjective and the patient feels their experience is unique, in a way, so they need to feel that. Now, those who have had cancer can talk more freely like this with other cancer patients...there is a common bond shared between those who have/had cancer. These people can share experiences because they have been there...they do know. There are many times when the patient is looking for someone who has been there and done that.

#12 -- Here is a list of one liners:

I will drive you to your chemo treatment. -- OK, just be more specific...exactly when?

Here is some dinner I made for you and your husband. -- Loving it!

I would love to go wig shopping with you. -- Good response if the patient asked you. But think twice about being the first to ask, maybe they don't want to get a wig and saying this may be pressure-some for them..."So, it is that bad that you think I need a wig, eh?"

Call me any time and I'll be here to talk. -- Hmm, toss up. I personally don't like this because it lacks anything specific. I am not sure about it. When a patient is having a hard time and they need to talk and they happen to call you at a bad time (when you have offered the "any time"), it would make them feel worse, so make sure you can truly back up the words spoken if you say this. Mean what you say and say what you mean.

You still look beautiful to me bald. -- Hahaha! This line always makes me laugh in my head. I personally don't buy it. But, then again, I am a product of my generation...hahaha!

Can I give you a foot rub? -- I would LOVE it if someone offered to do this for me...well, maybe a back rub instead. My feet are sensitive from chemo (neuropathy).

Hang in there. -- Hmm, unless you want me to swat you on the head, don't say this because, really, the patient has no other option but to "hang in there."

I love you. -- Yes, this is always nice for the patient to hear. And for the patient to offer to those who are helping (assuming all involved mean it).

Well, I hope my commentary was helpful and entertaining.

Cheers,
Liz

Pictures of My Last Day At Radiation

Yea! Last day! I will miss the people I saw regularly there but the daily drive I won't. However, it did become quite routine for me and now my routine is changing again. As I get closer to the end of treatment my cancerhead (what us cancer people like to call it when the worries, etc, are trying to take over -- a.k.a. cancerbrain too) is butting in a bit...ahh! Anywho, enjoy the pics...

This is me checking in at the radiation desk...

Here I am in the patient only waiting room (sneaked Carrie down for the pics!)

Here I am weighing myself...I do this everyday...part of the routine...

Here I am on the table just after my radiation (no one can be in the room..I am in lock down when in treatment here). The arm goes all the way around me. Once I am set up I CANNOT move. That little white towel pillowcase on my midsection...I AM NAKED UNDERNEATH IT! LOL

Another angle... (funny story, at one of my treatments the machine broke down with me lying like that. I was asked not to move and then there were some handymen coming in to fix it while I was lying there! LOL, it was OK, I gave them permission to enter.)

Another angle...

YEA! All done with radiation.

Cheers,
Liz

ps- thanks to Carrie for her photographer skills

Funny Story

OK, so when I have my weekly appointments with my radiation doc, I am given my medical binder after my radiation session and I walk down the halls to the patient review area to see the doc. Of course I look through the binder each time to see what has been written, it is my file so why not. Anywho, as I was browsing some pages I found that I have been classified as a stage 4 endometrial cancer. Now I was not bawling or anything, I am like, "Whatever." The treatments would be the same whether I was a stage 3 or a stage 4. However, if you recall, the doctor (gyn/onc) said, "I would classify you stage 3b, although I don't like to use the staging system." (that is not verbatim but something along the lines of what he said). Notice how he did stress that "he" would stage me a 3b...not necessarily that the medical world would. My thinking on this topic is that objectively I am a stage 4, however, subjectively teh doctor (gyn/onc) (knowing all the pathology results, etc, and more subjective info) would put me at a stage 3b. Who knows...was it out of compassion (the most positive outlook)? I do not believe that he would lie to me, so somewhere in the details someone thinks I am stage 3b instead of stage 4. But, like I said, it does not really matter, I am in treatment and doing all I can to beat cancer's ass. The stage is just in the details...

Anywho, t minus one day until radiation is done.

Cheers,
Liz

P-WACs

I can somewhat imagine what people think when they see me out...I imagine some think, "Crap! There's Liz. What do I say? Maybe she won't notice me." Others probably just completely avoid me. OK. No hard feelings. I understand. Cause sometimes the things people say make me think, "P-WAC!" (thanks Kelly!)

I am taking a fun approach to this because, in the end, what is there left to do but laugh. So, I have been reading what my friends with cancer say about stupid things people say to them and I thought I would share what people say to us that, for the most part, leave us shaking our heads. Keep a light heart reading this...remember, saying this stuff to us cancer people gives us a common bond together, mainly sharing our stories of stupid things people say...so, in a way, it is good. This is taken from the experience of myself and my friends (edited)...

1. "You look like Sinead O'Connor."

2. So I invested in bandannas and I was asked- "Is it a religion thing, I mean, are you a skinhead?"

3. "Oh, I think my aunt/uncle/cousin died of that!"

4. "The important thing is to keep positive."

5. "So-and-so cured himself without chemo by drinking only carrot juice and chewing on whatsum plant and eating organic food and doing yoga daily."

6. "You know, so-and-so had cancer last year, but she wore a wig and you couldn't even tell that she was sick. Maybe you should wear a wig."

7. "You look good."

8. Overhead, "Yeah, I hear so-and-so has lost like 25 pounds. Maybe I should try getting cancer."

9. "You have cancer? Is it a type that can spread?"

10. "That's an easy cancer to have."

11. "Things could be a lot worse"

12. "You’re worrying too much. You’re going to be fine."

13. "But you don’t look sick!"

14. "Oh my god I just had a dream the other night and in it your cancer came back and you died from it. Isn't that weird?"

15. "Isn't that the good kind of cancer to get?"

16. "You've got a nice shaped head, bald suits you."

17. "After they find out I had to have a hysterectomy, people say, "You know you can always adopt. There are kids out there waiting for you" Duh! Like I don't know about that option, let alone letting me get through cancer first and grieving my inability to have my own children.

18. "How are you doing?" Guess what? You are about the 150th person to ask that question today. And the answer is not short and sweet.

19. "So-and-so had cancer too, they beat it, you will too, don't worry" Here is what I say when people say this (a) Good mood response: nod and smile (b) Bad mood response: Pull out a small notebook and make a stroke on the page, look 'em square in the eye and say, "That's just great, another one to cut down my 10% survival odds."

20. "You know that causes cancer?"

21. When the hair starts growing back after chemo, "Awe, look at your hair, it is growing back. You look so cute with short hair."

22. " I'm really sorry to hear about your illness. I know how difficult it must be. I've known lots of people who’ve died from cancer."

And as a friend said, "Don't you just wanna get a hockey stick and run around belting them all in the head... but no... must give wise sensible solutions."

Cheers,
Liz

Good Quote

Saw a good quote today. Thought I would share it...I liked it because, you know, says so much in just one little sentence. (please refer back to my blog Uglier Things to understand what I mean here...).

"The smallest good deed is better than the grandest good intention.”

Cheers,
Liz

Sleep...Where Are You?

So many things have been going through my mind. I can't stay on one thought for too long. Although I am lying around a lot right now (radiation and sore are wearing me out) I do not sleep at night. Most nights I am up until 5am. It is not that I can't sleep, I just don't want to. Something in me does not want to close my eyes. I want to be distracted. I don't want my mind to slow down. Why? I am not sure exactly sure. Probably for so many reasons...

I still think about the night of Jason's accident and how he was during it. I know I should not do this but it is still hard to grasp that he is gone. It has almost been 5 months. I just don't want to forget the sound of his voice, you know. Here is a pic from my highschool grad of the two of us...

Today Neil and I went to see the Harlem Globetrotters. There were some good times had by all. Here is a pic of Neil and I there...

(p.s - don't let the carefree looking smile fool you....)

As we were leaving the arena I started to tear up and for the most absurd reason, I think...because I really miss playing hockey. The league I was in played there and all I could imagine and think about was me playing hockey. I would give up playing all other sports to play hockey. No joke.

Life seems so blah right now. I am almost done radiation. I have a couple days this week and then I will be done. 6.5 weeks will have gone by. Time sure does fly. I cannot believe I am almost done. At one of my appointments earlier in the month I was letting a little of the anxious-Liz come out as I was asking the doc why I have so many internal and external radiation sessions....why not more? I always think that right now...more is better...give me as much as I can handle, until I am unable to stand. Blast me! Kill the cells! Give me the poison..pump it into me, radiate it into me! But, alas, the doc says many years of research have led him to decide on the number of sessions I need. But in my head I am like, "I am younger than 99.9% of women with this cancer, I can handle more of the treatment than most...what is the research based on?...older women?" One shot...one chance is all I have...go extreme, give it to me!

Cheers,
Liz

Life is...

Life is in the tough stuff. The lessons, the glory, the fullfilment, the satisfaction, and the "stuff" that is worthwhile is there, in the guts.

Gotta get dirty, be open to hurt, able to deal with frustration, willing to experience joy, be able to laugh when the going gets tough, and most of all you need to be able to be vulnerable.

Cheers,
Liz

Butt Ends

Wow, I want to thank everyone for their thoughts and suggestions about my little issue I have right now. I am very touched that so many people have taken time to reply back or send me an e-mail. I have read the messages and read the web addresses and the info contained there.

From the info sent to me I have learned that my 2% prescription for the nitroglycerin ointment (angina cream) should only be 0.2% so that may be why the side effects are so severe for me, so much so that I have only used it once and I don't plan to use it again until I see the doc.

I have since started my stool softener again and I have eaten, some cheese and crackers to be exact; be it a good idea or a bad idea but, I worry I am not getting enough calcium (remember I am in surgical menopause because of my radical hysterectomy). I tend to drink lots of water, which is beneficial in this case, too. However, I read that it is also recommended to eat lots of bulking agents like fruits and vegetables, and whole grains, which I am all for, it's just that with radiation I was told to avoid this stuff because radiation will give me diarrhea and these foods will only make it worse. So, there is where I have been stuck. I know that for fissures I need to eat this stuff but, I have also been fighting diarrhea (acidity makes fissures worse)...so, will eating "fissure friendly" foods be more of a hindrance or a help? I am too the point where I have nothing to lose eating those foods. There is always pain so why not try it, right?

I hope that was not TMI for any of you. I think I will lay this issue to rest but, I will update you all when it is better.

You know, I find it comforting, somehow, to know that when I am typing here, people are actually reading it and responding to it. I really appreciate it. I have been having a really bummy weekend dealing with this issue and the absence of Jason from this holiday and my life but, after posting here and receiving the replies and knowing people read this, it has made my day. You have all made me smile today.

Happy Easter to You All.

Thanks,
Liz

Madness, Pure Madness

OK, I hate to go back to my PAINFUL sore(s) but it is wrecking havoc on me. I saw the rad.onc doc yesterday. So funny. First it was this other doc whom I recognize as my doc's "helper" and I was so fed up with the pain and this doc was giving me a clueless look that I was like, "Is my regular doctor here?" And the guy basically jumped up, looking relieved, and said, "Just a sec." Anywho, I guess my doc had called the G.I. doc and this G.I. doc recommended....wait for it.....ANOTHER cream!!!!!! Can you believe it? Cream #5!!!!!!!! I was not feeling well and I was by myself so I did not say much. Just like, "OK." What am I supposed to do??? I am so clueless now...and my brain does not function at a good rate at the moment. I figured I was FINALLY going to get help....how come all docs seem to give me a brush off????? WHY?

Anywho, guess what? The cream is horrible. It stings forever after it is put on and it gives me this HORRIBLE headache...for about 12 hours! And no good results. I was reading the medical info that the pharmacy put in the bag and it is for angina....all the sheets were about was angina. Nothing about what I am using it for. How helpful is that????!!! The pharmacist said that it can help in my case (will take 4 weeks, I WILL NOT make it the 4 weeks, I can tell you that now)....I can't handle the pain anymore. And the pharmacist was like, "This cream is usually only given in 0.2% or 1% (can't remember which) for people in your situation but for some reason you were prescribed 2%, so I gave the 2%." HELLO!! Why are you telling me this! First of all, I have no clue about it...call the doc then...don't run it by me!!!!!! I was like, again, my infamous, "Oh."

I thought I would be getting help now with pain, you know. I thought there would be some sort of pain maintenance program. My friends in the States talk about their pain management team!! I was like, "Lucky!" I can't get a break. Before I was diagnosed with cancer I experienced a lot of pain. After 2.5 years I thought that was what life was going to be for me. I remember after my second time hemorrhaging and the pain I was in, I started punching my stomach and uterus area. I let loose I was so angry and there was nothing nor no one who helped. All of the docs made me feel like a freak. I was crying and punching myself and yelling. Neil was stunned and did not know what to do. Poor guy. I was at the end. The doctors told me nothing was wrong and I was in constant pain and bleeding all the time. I was done. I feel myself reaching this point again, although I am not physically able to turn around and punch my bum. I like to think of myself as having a high level of pain tolerance (2.5 years of agony before I really started breaking down) but this is it. How much longer? It is just one thing after another. At first, with the hysterectomy, I could not imagine moving, nor going to the washroom, nor coughing, etc, without pain. I have never really had a no pain week in so long. I am too young to be in constant pain, right??

I hate to bitch but I am at the end, you know. I am not sure what to do and the docs give me no faith or hope in them. Poor Neil. I cried a lot today. Neil kept saying he loved me and I was like, "I know but that doesn't help." Again, poor guy. I almost look forward to chemo because then I know what to expect and I get perkisets. I have Tylenol 3 now. When I saw my doc yesterday he saw the agony on my face and prescribed it for me (I did not ask for it) but, I am too afraid to take it because it causes constipation (same with perkisets though too)...I cannot handle any kind of strain in that region right now. Good thing I have no hair or I would be pulling it out. The past couple of days I have been lying in bed. Don't know what else to do. I am definitely not in a mood to go anywhere.

Do I go to emergency?? The doc said if there was no change over the weekend to go but really, what are they going to do? Probably make me wait for hours in the waiting room where I will catch some kind of infection....hey, that may be a good idea, then maybe I will actually get some help....hmmmmmmmm. Food for thought.

Oh, and the nausea. Total nonstop now. It may be because I am not eating now. Over 24 hours without food....and no, I am not taking ENSURE although I do have some. It is partly so I hopefully won't have a BM (although I had 2 today anyway) and partly to protest. The docs are really concerned about my weight for some reason so I figured this will get their attention, as my saying I am in pain seems to mean nothing to anyone. I have already lost some weight but, I don't care. I will do what it takes to avoid the pain or get someone who will take it away for me. I have had this sore now for over 2 months (remember when I first wrote about it when I was in the hospital?) and it has just gotten worse and worse....and to think, when I first got it my onc.nurse said there is nothing they can do and to take some Tylenol when I feel a BM coming on. Do doctors actual care?

Anywho, that is my rant.

I am at the end. Ready to throw it all back.

Liz

The Good, The Bad, The Ugly

Easter is just around the corner and for many people that means a gathering of family and friends, an Easter egg hunt for the kids, and big dinners. I am not into any of these this year. With Jason gone, I don't want to have any big dinner. He would be there, we always sat beside each other and we always had a good time...followed by him always falling asleep on my parents' couch. There was always a big gathering with my husband's family too. Not this year for me. I am not ready for any celebration. I recognize the importance of the celebration but gathering with others is not on my list of ways to celebrate it this year. Don't expect me to either. People do. Let go, you will only be disappointed. Expect nothing from me right now. It is the best I can do at the moment.

So the doctor has discovered what my sore is...a fissure. My goodness they are painful. I had never heard of it before. I find out what the next step is in dealing with this thing tomorrow when I see the doc again. The worry is that I will get an infection. On Monday, when he actually looked at it (he assumed it was a hemorrhoid the week before) he was like, "Oh, it is a tear." Then they were all concerned about getting more blood from me to check for infection or something. I was like, "I just had blood taken a few days ago." That was good enough, thankfully. Anywho, fast forward to today...the stuff they prescribed has done nothing so the madness continues.

I find that some people wrongly assume that radiation is easy. Maybe other people have had that experience, but mine has been a little more invoved. I will give a brief synopsis. You have already read (hopefully!) in a previous blog about the development of scar tissue and fear of atrophy of my muscles in the genitalia which lead me to dilate, my fissure (ew!), and the daily trips to London. On top of that there is a struggle with diarrhea (radiation + bowels = diarrhea --> remember I have that lovely fissure too...OW!), pain in my bladder and when urinating (radiation + bladder = pain), sensitive skin in the radiated area (but no sunburn yet!! Yea!), extreme tiredness (so I make almost everyday a clean sheet day...love clean sheet day!), nausea (radiation + stomach = lack of appetite...worse than chemo, go figure), weird pains on the inside (come and go), dehydration (I aim to drink 5 litres of water/day) and the incidental things like oodles of people seeing me naked from the waist down, walking around amongst male/female patients/staff in the lovely little hospital nightie (I refuse to sit down in the waiting room, can you imagine??? Gross!), a little feeling like I have lost some of my independence... That is a good enough list, just to give you an idea. I can't tell all...sometimes you gotta join the club to know all the secrets! Although I really hope no one else has to join this club.

One thing I like about going everyday is that I mainly see the same cancer patients each day. There is one cute older gentleman and his wife who seem to be there each time I am. The husband is the one fighting cancer. Today when I arrived he had already had his treatment so he and his wife were enjoying a lunch in the atrium...I was only able to talk briefly as I was running just on time for my appointment...they are always smiling. In my experience with the radiation waiting rooms (the patient only area), the people are generally grey-haired and it is the males who are open to talking with me. I have experienced a very limited number of female patients who were up for talking (just one). Weird eh.

Sometimes I wonder if writing here is a good idea or not. People reading it may think I am a poor sport or a wimp. Some people may get the impression that I am wallowing around in misery, perhaps even anger. Others may think I am depressed or that I need to look for the positives in everything. Who knows...maybe I do have a mix of all of this inside me but, then I think, who cares. It is an outlet for me and maybe by being raw like this it will, somehow, help someone else out there. I have read books about being the "ideal" cancer patient and things I "should" be doing...but, really, there is a relative aspect to this journey. I still live but there is a rawness to this journey that I don't want to ignore. And just for the record I do look at the positives and I can see the blessings I have received but, I am also able to look at the things that are not pleasant. The good, the bad, and the ugly. Gotta be able to look at it all. It is the way to get the most out of this journey. I would hate to have to repeat it again because I missed something the first time around...there may not be another chance to figure it out either. I get one shot with this disease!

Warriors...Ready!

Cheers,

Liz

PS -- I got BOP

Brown Bag Special

So, I have been joking about something called the "Brown Bag Special" (BBS) and for the chosen few who already know...here we go again.

My first HDR (a.k.a. brachytherapy, internal radiation) was something to experience. Let me just say there was a "rod" (as they call it) and 2 catheters involved...guess where each one went? Yea....enough said eh. Quite uncomfortable to say the least. However, I survived it. But the BBS came at the end, as I was trying to get up and figure out what had just happened. Here is a pic for those who are curious:

I am thinking, "I didn't know a lunch was provided..." But inside there was no sandwich or apple. Inside were some packets of jelly cream and a plastic "thing." The nurse went on to explain that since I am having HDR, scar tissue will develop and I will need to dilate with the enclosed utensils. But, she said before I use said utensils I will have to boil them. Ugh! But I followed her instructions:

Go ahead and laugh, I did too. I laughed and was cracking jokes...some really good ones too. The thought of this is just too funny. It has provided some good belly laughs.

But I have to admit, it is disheartening. This is something I HAVE to do because of this cancer. It is for no other reason. And I must do this for the rest of time. The nurse said I need to do it every day for 10 minutes or so. She stressed how important it is because if I close up, I cannot be examined and if the cancer returns, they cannot get inside to check. She also told me how some older women didn't do it, closed up, and had to suffer the consequences.

I find it to be an activity that feels like it takes away some of my dignity. Some people will say that I should go with it and have fun, but it is so much more than that. I may come across as a prude to some...but, so be it. I don't care. It is not a free for all with this "thing." I bet you did not know it is VERY painful...each and every time. At the hospital you expect to experience some pain (needles, etc) and knowing you are going to endure pain there is different than when you are at home having to cause yourself the pain daily...and it is easy to fore go it as well. I honestly drop a couple levels in my mood when it comes time to carry out this order.

Liz