Together We Endure

Its been a long year in our household dealing with the passing of a sister and aunt. But that being said we begin a new battle,With Lisa’s passing began a new family dynamic. As most who new Lisa or had any dealings with her you to could testify that she was quite in control of everything around and in her life “I don’t live with cancer ,cancer live’s with ME” .The Rendall family and Lisa’s husband have been slowly learning how to accomplish different tasks such as who’s having thanksgiving supper this year,We were often told by Lisa were to be and at what time. In Lisa’s absence we endure.
Also this year Lisa’s mother was diagnosed with breast cancer but through speedy treatment and daily trips to Saskatoon for a month for radiation mom has a clean bill of health.

Myself and Will have taken control of the Lisa Rendall Memorial golf tournement which will be held at the Willows on the 19 of June 2012 . This has proven to be a task in itself Lisa had major control of this process so Will and have been on a slow learning curve but as the month ends we plan to have an event planner in place to take over Lisa’s position and help with the process . The tournement will be contolled by a board of directers with the soal purpose of raising more money for cancer research in saskatchewan.

I will try in the upcoming months to update the blog with some personal notes and also there will be updates soon to the golf tournement info.

Richard

In sickness and In health

The family and I have decided to keep Lisa’s website open for the next year or so. I thought that we could continue the blog with our own ramblings about Lisa and our time with her and what she meant to us. It may include memories of Lisa, the things we miss and our thoughts.

I would like to thank everyone for all their kind words, their gifts of food and flowers and their thoughts and prayers.  Lisa has touched all of us in many ways, whether we just met her or knew her all her life.

For richer, for poorer, in sickness and in health, to love and to cherish, until death do us part!

I miss Lisa daily. If I was her ‘rock’, she was my world.  It’s tough to think about all our memories and then to realize that we will make no more, rips me up.  Lisa had the ability to make the worst day better, the shitty task bearable and the irritating people, welcomed.  There will be no other like Lisa.

TREAT EACH DAY AS AN ADVENTURE!

The day we said ‘I do’ was the happiest day of our lives.  We were both young adults with so many hopes and dreams.  We were going to face each challenge together, hand in hand, propping each other up.  Some days she relied on me for strength and other days I relied on her, but together we face it.

I first met Lisa in my hometown bar.  Upon introduction, I got up and kissed the back of this fair maiden’s hand.  Yeah, who does that these days, let alone back in the 80’s.  There were two attempts at a date, but Lisa had better things to do, like ‘drink beer with some hunky firefighters’!  I’m not usually this persistent, but I decided to give her one more chance.  Will this be her third strike?  June 18, 1988, we did supper and a movie, and then cruised up and down Albert St talking.  At that point Lisa thought to herself, ‘I could marry this guy!’   Hell, I just wanted to know if I could get into her pants!! Our second date was all fireworks, literally, watching them from the banks of Wascana Lake on July 1^st.  A year later we were married on July 1^st 1989.  For us, those vows gave us great strength, as did our parent’s marriages.  What great role models they are.

A CALM SEA DOES NOT MAKE A SAILOR!

Every young couple starting out dreams of being rich, rather than poor and never expects there to be sickness, but rather, plenty of health.  In July of 2000, these vows were tested.    Lisa was diagnosed with stage 4 metastatic breast cancer.  Lisa faced the challenge of her life head on.  She fought with all her might and only asked once, ‘Why me?’  She bulled threw numerous treatments and surgeries and after 10 ½ years of courageous battle, Lisa lost her life to breast cancer.  FYC!!

Lisa wanted to help and not sure how, she decided to raise money for breast cancer research.  She started the Lisa Rendall Golf Classic.  Money raised from the golf tournament went to the C95 Radio Marathon for Breast Cancer Research, which is then turned over to the Saskatchewan Cancer Agency.  Not only did she raise money for breast cancer research, she also put a name and a face to breast cancer in Saskatchewan. There is becoming a greater awareness about breast cancer and self exams.  More people are talking about it, women are telling their stories over the air.  Money is being raised.  I believe Lisa had a very big hand in all of this.

The Lisa Rendall Memorial Golf Classic and C95 Radio Marathon for Breast Cancer Research will continue on in Lisa’s absence.

There were many things in Lisa’s life that she truly enjoyed, like gardening, photography, camping and boating.  She loved the time she spent with her dad putting in the garden.  She was so excited with the ribbons she won with her entries in the horticultural shows.

Everybody was familiar with Lisa’s photography, how many times did we have to hold that pose or hold up your plate so she could take pictures of the food.

Lisa loved camping and boating.  She was always chomping at the bit to go camping May long weekend and fought to keep the trailer out till Thanksgiving long weekend.  She said she felt normal when we were camping.  The cancer wasn’t there, we left it at home.  Boating brought us freedom also.  That feeling of being out on the boat on a calm evening is hard to describe and will be hard to match without Lisa.

NO MAN IS A FAILURE, WHEN HE HAS FRIENDS!!

Lisa loved being around family, whether it was with her family or with mine or even the outlaws!  Lisa cherished her nieces…Shelby, Karissa and Tori!  You meant the world to her!  She was always excited with your accomplishments and gave a reassuring hug when things weren’t so great.  Lisa had so many friends.  How could you not be a friend of Lisa’s?  Once you met her, you were her friend.  Her personality was electrifying; she could energize a room with her presence.  Lisa had great close friends, willing to help when she needed help and not ashamed to ask for help. Friendships are like that, give and take.

There will be a lot of things I’ll miss, such as her laugh, our talks, her lists, her strength and her love.  Take comfort in knowing Lisa will always be with us in our hearts, her shell is gone, but never her spirit.

……UNTIL DEATH DO US PART.

I will always love you Lisa.

Will

Yet ANOTHER complication & hospital stay

So…once again here I am finally blogging after what seems like WEEKS since I last wrote anything.  I’m not even going to apologize. I always apologize for taking so long between blogs but not this time. I was feeling so shitty I barely spent any time on my computer checking email. It seems I didn’t really get a chance to fully recover from the last hospital stay. I recall the week of February 14^th being really rough. I either had nausea, the dry heaves or was puking.  I had no other symptoms, no fever, no diarrhea, and thought perhaps it was a touch of the flu as it sounded similar to what my sister in law had just been through. I wasn’t able to eat, but managed to keep enough fluids in me – for awhile – and then I didn’t even feel like I had room to drink anything.

By the time the Family Day long weekend came around I hadn’t eaten any solid food and my husband was doing his best to get me to drink Gatorade and fluids as we knew I was likely getting dehydrated. I just couldn’t seem to stomach anything and I had pain in my abdomen that was not going away. I’d had pain (from tolerable to severe) in the left kidney area since having the tube inserted into my back so I wasn’t too concerned about it as it would come and go. I thought my stomach was so sore from all the dry heaving…..I was wrong.  

 I spent the Sunday and Monday of the Family Day long weekend in bed hoping I would feel better than when I was out on the couch.  Didn’t work.  Holiday Monday I was drifting in and out of sleep in between suppository insertion and Gravol pill swallowing, and trying
to force Gatorade down every half hour. Husband was checking on me every 15
mins. I wasn’t putting much out the kidney tube and it was becoming obvious
something was really wrong and that I was getting dehydrated simply by the “junk” that WAS coming out of the tube.

I woke up from a nap around 8pm and my back was wet. I initially thought I’d had a hot flash and then discovered it was piss coming out the hole in my back - not through the tube. We called
Home Care and a nurse was here within 45mins and changed the dressing…said
the tube was still in position. My husband showed her out, and by the time he got
back to the bedroom piss was running out of my back again. We wrapped a bath towel around me and left the house around 10 to hit emergency.

I spent the night in emergency on the pediatric side getting re-hydrated and REALLY pissing fluid out
my back as fast as they put it in me it seemed.  My husband was kept busy constantly putting
pads under me to try and absorb it but also keeping the site clean. It eventually was bloody urine and a nurse came over and bandaged me up with some really absorbent pads that also keep the skin dry, so those were left on until I got the tube replaced Tuesday afternoon by the same Radiologist that put it in.  To say my back was WET with piss when they removed the bandaging in the Radiology Suite would be an understatement. They cleaned me up really good and started to replace the tube. It should NOT have hurt, but it did. I have NEVER, EVER experienced horrific pain like I did for several minutes during the tube replacement. It literally felt like a red hot fireplace poker was being shoved right through my back and out the front/side of my belly. I was screaming bloody murder. My husband said he’s never heard anything like it (primal) and doesn’t want to hear it from me again. We think the problem may
be that a membrane that’s between the intestines and the abdominal wall is
stuck to the abdominal wall…therefore, when they move the kidney just a bit it
nails me with pain because this really sensitive membrane is being
moved/touched. Needless to say, I am NOT looking forward to three months
from now when I’ll have to get that tube replaced. A new tube has to be put
in every 3 months for some reason. I’ll be insisting on a hefty dose of Versed before that procedure!

So….then we deal with the abdominal pain once I’m up on the oncology ward.
I started out with a bed in the hall and was HAPPY about it because last
time I was in the observation ward with 3 others and it was HORRIBLE. They
barely got me into the bed and a guy was let loose…so I just had to wait
for the room to be completely sanitized and made up and I got a lovely
private room. It was like HEAVEN compared to observation! I felt like I was
in a hotel!!

So, over the course of the week I go through shit loads of tests. First they
think the small intestine has slid inside the large intestine. This would
require surgery to fix which was extremely dangerous at the time because I’d
just had my last chemo on the 18th and went into hospital on the 21st, so my
white cells etc were tanking hard. My blood was too thin so they thickened
that up overnight, gave me a transfusion because my hemoglobin was too low,
and also gave me a needle with stuff called GCSF to stimulate the growth of
white cells so I would hopefully be able to make it through surgery if I had
to go. The GCSF caused me horrible bone pain in my pelvis/hips that kept me
awake til well after 6:30am and after that the oncologist on call said “no
more”…we’ll wait for them to come up. Even I.V. morphine wasn’t touching
the pain.

Next were tests to see how things were or weren’t moving in my
bowels/intestines. First was what I believe they called a Hydrostatic
Reduction which was essentially an enema with contrast dye. They watch the
dye to see how far it goes and if there are any blockages. I was very
stressed out about it, but it ended up being the easiest test I’ve ever had.
We were able to look at the “action” as it was happening and the scans after,
and could see a definite narrowing in the intestine at one point.

Next was a CT scan…but because of my kidney issue they couldn’t use
contrast dye so they really couldn’t see dick-all. Then…another bowel test. This time I swallowed a couple glasses of water with a water soluble contrast dye (safe for me to have) and they started
scanning me as soon as the last gulp went down. Then every 15 mins, every
half hour, every hour…til it went through the system. I started at 8:30
and wasn’t done til after 4. Then that night there was a LOT more than the
620mls of fluid I’d drank come OUT til 3:30 in the morning. Luckily there
was no cramping or discomfort….just a whole lot of liquid pouring out for extremely long
periods of time. I marvelled at how long it lasted each time. I just sat
there reading my new People magazine and let ‘er roll! I was afraid I would
shart my pants in the night but I didn’t. I did, however, shart my pants the
next morning when I let off a couple of “test farts”. I knew I’d sharted
myself when my pants suddenly got cold! For some odd reason they were never
warm….hmmm. Sneaky shart!

Oh, and I had a Gastro Nasal Tube inserted too. Yes, for several days I had
a frickin’ tube up through my nose, and down my throat into my stomach
sucking everything out, plus sucking stuff out of the first part of the
intestines/bowels. It was NOT pleasant getting that thing down there,
especially since the surgeon didn’t bring any freezing spray and
gargle…and there wasn’t any on the ward. He said he’d find some if they
didn’t get it down the first time. I’m glad I somehow managed to swallow it
while he and my husband held my shoulders and told me to take exaggerated swallows
from a glass of water to help me swallow the tube.  That was hell, and it was gross. Didn’t take long to get used to it thankfully and I could drink as much as I wanted…it was just coming right back up through
my nose! I got the nurses worried after eating cherry jello…they thought
it was blood

The worst part of the NG tube (besides getting it inserted) was trying to swallow my pills with
that tube in there. It just doesn’t work. Had to use jello or pudding (which
I wasn’t supposed to have, but there was no jello in the fridge). The pudding and yogurt my nurse managed to find worked so much better than Jello but I was only lucky enough to use them
twice. They put the tube in Friday and removed it Monday so it wasn’t that
long. I told them to leave it IN until they were positive they didn’t need
it anymore because there was no way they’d catch me to put another tube down
my throat!

It was now a waiting game for the bowels/intestines to try and
calm down and reduce swelling. My belly looked like I was 9 months pregnant.
Very uncomfortable having my belly button totally flattened out. They put me
on a low dose of steroids for inflammation and to keep things moving slow, I
was on only clear fluids for awhile, then onto full fluids (you can have
pudding and yogurt), and then onto a special low fibre diet that I’m still
following. No fruits and vegetables allowed until next week!!! I can have
canned mandarins and peaches, plus a few other low fibre fruits but have to
be very careful.  The only vegetable I’m doing is potatoes…and no peel. I’m surviving
on turkey sandwiches on white bread, soup, Ensure, apple juice, water, milk,
cereal etc and so far so good.

In total I was in the hospital from Feb 21 to March 7th. The timing worked out perfect because the weather was absolutely freezing the entire time!  I didn’t feel ready to go home on Saturday, but I did feel I could handle it by Sunday (once I’d had a decent bowel movement and was farting, plus keeping
food down they were ok to let me go). It turns out farts are VERY IMPORTANT to our health. Don’t hold ‘em in girls!! I was also off the i.v. for a couple days to make sure I could sustain my fluids.

So, to end the saga….I have 2 areas of my bowel/intestines (not sure which
it is exactly!) where there is a partial obstruction. The surgeon thinks
I’ve had one of them for a long time…it’s where the small intestine meets
the large and that area contracts/restricts anyway to move the “stuff”
through. The other obstruction appears to be a tumor that is pressing on
either side of the intestine, causing it to narrow.  We aren’t totally sure because we aren’t
able to use contrast dye yet. I WILL have a CT scan in early April that WILL
use contrast dye and we’ll then hopefully find out why urine isn’t getting
from my left kidney to my bladder (and if the nephrostomy can be reversed);
what is causing the blockage and is it a tumor that was already there, but
restricted things because the intestines became so inflamed and swollen? Or,
is it a new tumor and the chemo did not work? We’ll also be able to get a
clear picture of how the liver tumors have responded to the chemo. I sure
felt like shit through it all….I hope that means it was knocking the crap
out of those tumors. My liver function numbers are WAY DOWN and in the
normal range….they were steadily decreasing while I was in hospital so
that’s a good sign. I hope.

So, I’m home, but I’m weak. I haven’t used stairs in likely 4 weeks so my
legs feel like lead. I lost muscle mass and strength very quickly and I’ve lost a lot of weight, which was likely all fluid and “poop”.  I’m just taking it easy at home…saving my energy for the big “do” on
Friday. CTV is holding a special luncheon for the Citizen of the Year award and that is something I really need to rest up for. I think we may have to use the wheelchair for the first time, but I need
anything that will conserve my energy. There will be a couple of people
giving “tributes”, another friend giving a toast, my sister-in-law will say
grace, and I got to choose the menu and invite some people so it should be
good. I’ll have to be there for a couple of hours and I’m assuming I will be feeling uncomfortable in my belly after sitting for that long – but it will be worth it.  I am also going to do a dry
run and try on some clothes hoping my dress pants will cover my bloated belly. It’s not nearly as bad as it was….but it’s not normal yet! It’s actually bulging out on the left upper side, crossing down to the right hip. Very wacky.  But that’s the way it always seems to be with me. Nothing is ever easy or routine.

I’m now done my 6 rounds of chemo (WOOOO!) and am trying to remain positive that the chemo did something to knock those tumors back and give me some more time to live with stable disease. Big dreams and wishes but I think maybe I’ve been put through enough for one year. No…I don’t THINK it, I KNOW IT.

ADDITIONAL COMMENT: Thank you so much to all the RN’s and SCA’s who work in our oncology ward here in Saskatoon at Royal University Hospital. You truly are the most competent, caring and incredible group of people I’ve met in a long time. You made my two week stay bearable and even enjoyable. I can’t thank you all enough for your compassionate care. YOU ROCK! And, to all of the doctors and residents who worked on my case - thank you for taking a conservative approach in your diagnosis and treatment and for genuinely CARING. We are lucky to have you here and I am so thankful to have you on my side.

Citizen of the Year - with complications

Here it is, one month after my last posting and I still feel embarrassed about the fact that I won the CTV Saskatoon 2010 Citizen of the Year Award.  I don’t think it’s something you can easily get used to and I certainly haven’t. First of all, I don’t feel like I’ve done anything in the past year to even deserve this honour but it’s based on everything I’ve done so I guess I can accept that. I find it funny that when some people congratulate me they say “So…what do you get?”. What do you get? WHAT DO I GET??!! Isn’t the recognition enough?! Hilarious. It’s as if they think I get a big fat cheque or something. Those who devote their time to causes don’t do it for personal financial gain. On the other hand, we don’t do it for any kind of recognition.  We do it because it makes us feel good and we want to make a difference.

CTV is hosting a luncheon for the Citizen of the Year Award in March and that is more than enough recognition for me. I just hope I’m feeling ok by then. I’ve been feeling so weak lately and I have no desire to leave the house. But then, who does in a Saskatchewan winter? J Every time I hear about someone going or coming back from a warm winter vacation my lips practically gnarl up with jealousy. Just seeing a slight tan on someone is enough for me to feel sorry for myself. I don’t normally wallow in self pity but there seems to be a lot of it going on this last week. Feeling like crap and spending time in the hospital will do that to you.

I was just released from the hospital a week ago after spending five days cooped up in the cancer ward observation room with three other patients who made my blood pressure and anxiety levels hit the ceiling. It all started quite quickly from what I recall. I’d had 4 treatments of chemo and my nails and feet were really starting to bother me. My toes feel freezing cold all the time, but they are perfectly normal in temperature. They also feel like they are falling asleep and swollen. It’s part of the neuropathy that some chemo drugs cause. As far as my fingers and fingernails, they are tingling and extra sensitive. The nails are feeling loose. At this point there are about 3 or 4 that feel like they may fall off and are bandaged up 24/7. I think I’ll have to buy a box of surgical gloves soon. Ten years ago when I went through chemo the first time (on this same drug I’m on now) all of my finger nails were bandaged for well over 6 months after chemo and every nail looked like it had been hit with a hammer. I went through boxes and boxes of surgical gloves. When you want to eat something, wash something, or clean something and you have band-aids on your fingers it can be a challenge. Especially when you live with a cat! I even wore surgical gloves to shower, because the fingernails were so weak. I can feel them loosening lately and have had to change my routine of having my gel nails done. My nail tech is extremely knowledgeable and at my last appointment she took a bit of the gel off and did a gel manicure. We agreed to keep the nails in a position that they could be saved and returned to a full fill, or if necessary – we let them fall off in the safest manner possible. I wonder if my nails would have lasted this long if it weren’t for the gel nails. I got them done in the first place because of what the chemo did to them. Once they “recovered” ten years ago they kept peeling and breaking off. There was no strength to them whatsoever. After doing research about gel nails vs acrylic I got gel done and have been loving them ever since. It could take awhile to get things back to normal again after this round of chemo.

Ok, back to how I got into the hospital. I was on a “drug holiday” from the chemo, hoping I’d start to feel better, but I noticed a continued fluid build-up throughout my body. There always seems to be some fluid retention when you’re going through chemotherapy. The steroids make you pee, but also make you puffy and maybe it’s just because of all the fluid they pump into you that you start to feel like you’re ballooning. I definitely noticed some fluid retention which soon became extreme. I could actually SEE fluid in my eyes that wouldn’t come out. There were bulges of fluid in the outside corners of my eyes. I saw it in the mirror, thought it was my usual runny eyes from the chemo and touched a Kleenex to the fluid thinking that it would go into the Kleenex. No such luck. It stayed right where it was and that freaked me out. Within a day I noticed that I hadn’t been peeing much – in fact after waking one morning I bet I didn’t pee more than 3 tablespoons of urine. That’s when I KNEW something was very wrong. If I’m remembering correctly, we had an appointment with my oncologist that day and I talked to him about what was going on. I’d already had blood work before the appointment and when the results came in during our meeting the shit hit the fan.  That’s when I found out my creatinine level (measures kidney function) was way too high. A week or so before it had been at 204 and was too high for the CT technician to safely use contrast dye to measure my tumors. It was now up to 912. I was going into kidney failure. (I only have one functioning kidney, so this was extra critical news)

My oncologist got me admitted to the hospital where we thought I’d have the kidney problem dealt with first. I had another problem to deal with though….my haemoglobin was low and I needed another blood transfusion even though I’d been on a holiday from the chemo. Because I’m on blood thinners the radiologist refused to do the procedure to relieve the kidney issue so I had the transfusion that evening and sucked back numerous shots of Vitamin K to thicken my blood. I slept great that night in my private room but was rudely awakened way too early the next morning. The blood they’d taken earlier that morning showed my creatinine was now well over 1,000 and my potassium was very high as well. Too much potassium can cause heart failure, so before I even had a chance to get this all explained to me I was rushed downstairs to the Radiology suite.

I was conscious the entire time, didn’t feel a thing, and the procedure was done within 15 minutes. A tube was inserted into my left kidney through my back so the urine can drain. So, I now have a Nephrostomy Tube which in “Lisa terminology” is a piss bag. No more trips to the bathroom to pee…it all goes into a bag that’s strapped to my leg, or a larger bag that’s hung from the bed (just like the hospital when you have a catheter in) at night.

It’s definitely not a position I thought I’d be in, but there are a lot worse options! The really unfortunate thing in all of this is that it means more work for my husband and more specialized care for me. There is a lot of daily care that comes with this, and there is weekly care with Home Care. We already had them coming in but now they’ll be here more often because Nephrostomy care has been added to the list of things my nurse will have to do for me. She’ll now have to change the dressing on my back where the tube comes out every week. It’s rather scary because the tube is NOT sutured or fixed into my kidney in any way. They simply make a puncture and insert the tube through your back into the kidney. The tube is held in place with medical tape and dressing. That’s it. It’s common for them to come out and have to be reinserted, and the tube has to be changed every three months so it looks like I’ll be making another trip to the Radiology Suite in the future. Thank God they are a wonderful, caring, and extremely competent group of professionals there.

I don’t know at this point if the Nephrostomy tube will be a permanent part of my life, but I do have hope that it can be reversed if we can figure out what is causing the blockage that isn’t allowing the kidney to drain. Because we couldn’t use contrast dye for the CT, we don’t know right now what is causing the blockage of the ureter (drains the urine from the kidney to the bladder). It could be something hereditary, could be a tumor…who knows. Hopefully we can do another CT in the next couple of months and use contrast dye. Since having the tube inserted my creatinine levels have come way down so that’s EXCELLENT news.

Unfortunately I’m not feeling much better. I got out of the hospital on Monday and had my next chemo on Thursday. Not much of a holiday there doc!! So, now I’m feeling the effects of the chemo….shortness of breath and a high heart rate, and dealing with carrying around a piss bag.  I’m coming down off the steroid high and feeling like I’ve been run over by a truck, but I’m still here fighting. One minute at a time. That’s all I can do.

Merry Grinchmas

Celebrations like Christmas can be difficult to get through when you’re living with incurable cancer. You want to make the most of it, but you also have emotions jumping around inside you like kids in a bouncy castle. Christmas may be one of the most difficult holidays to get through.  Questions run through your mind non-stop and you’re afraid you’ll cry at every celebration you attend.  Will this be my last Christmas?  That’s the main question I think we all ask ourselves. Every year as I’m putting away the decorations I wonder if it will be the last time I see them. Many years ago I gave some old family decorations to my brother because I knew he would want them after I’m gone. I figured I might as well let him enjoy them now.

I’ve gone through a Chemo Christmas before. That was ten years ago when I was first diagnosed. I wore a ball cap or my wig most of the time, I didn’t lose my eyelashes or eyebrows and I never felt sick. Even though I did chemo once a week for 6 months I felt good (likely cuz I was on a non-stop steroid high).  We had fun and I don’t recall being emotional. This time around it felt a lot more stressful. I’m doing my second kind of chemo in less than a year and the tumor in my liver is really aggressive. I think about that tumor every day and hope it’s shrinking down to a decent size. That one tumor seriously impacts my quality -and the length- of my life. It’s in a spot where it blocks the liver from draining if it gets to be a big size like it was in October. The pain that the liver tumors caused me was so horrible and I never want to experience that again.  I just hope to God this chemo is working.

There has also been another thing to impact our emotions this Christmas. My mother has been diagnosed with breast cancer. I still find it hard to write that sentence even though I’ve known since Mid November. She went in for her regular mammogram and was called back for another one, along with an ultrasound and they were pretty sure it was cancer. She had a needle biopsy at the Breast Health Centre and it came back positive for cancer. Since then we’ve met with a surgeon about our options and will meet with another in the next few weeks. Luckily my mom has been extra vigilant since I was diagnosed and gets a mammogram regularly. The lump was very small and is a very early stage cancer that is not aggressive. At this point it looks like she won’t need chemo, only surgery. 

So, not only was my cancer hanging over our heads….now my mom has cancer. How in the hell are we supposed to have a Merry Christmas??? Someone answer me that question.  I’ve got my family coming to my house and it’s the host’s responsibility to set the tone and ensure everyone has a good time. I know it’s just my immediate family, but I didn’t want us all sitting around moping and I certainly wanted my mom and me to have a good time.  I thought I could likely get the tone set for the celebration well in advance, so I came up with a theme – “Merry Grinchmas”. Cancer was our Grinch but we weren’t going to let it ruin our Christmas.  I was shopping at Michaels one day and saw a bunch of Merry Grinchmas items and just knew it was perfect for our Christmas this year. I bought a banner and some stickers and went home to write an official invitation to the Merry Grinchmas celebration. I managed to find a good picture of The Grinch on-line and put it in the invitation and then emailed it out to my family. We NEVER officially invite each other for Christmas so I thought that would jump start things right away.  

I got the banner together (yes, after I bought it I discovered I had to make the damn thing) and got the stickers out. I didn’t know how I was going to use them, but shortly after everyone arrived it hit me. Everyone was using plastic beer glasses for their drinks so I let them choose their Grinch sticker for their glass to identify it. There was Cindy-Lou Who, Happy Who-lidays, and even the little dog with one horn. I stuck the rest on the calendar and the celebration was on!  It was like every other Christmas and I was very thankful for that. Mom and I managed to keep our emotions in check and we all had a good time. I don’t know what it was like for her or the other family members, but I’m sure it wasn’t easy for them. I had hoped to get a family portrait underneath the Merry Grinchmas banner but we never found the time. 

We managed to get through Christmas. That’s an accomplishment. Now I have to get through New Year’s. I don’t celebrate New Year’s Eve anymore because I’ve discovered that it’s the worst time of year for me emotionally. To keep my mental sanity I don’t attend New Year’s Eve parties. I don’t even like to say “Happy New Year” to someone. I’m Grinchy and bitchy. The last thing I want to celebrate is the thought of another year and what it might bring. A lot can happen in the span of a year.  I’ve seen friends lose their battle in less than a year and I wonder if I’ll be next.  So tonight we’re not even getting together with our usual friends to just hang out. We’re going to sit here like any other night. Watch some TV, watch a movie, read, go to bed. It’s just another day, there’s nothing special about it. I’ll hope my brain will stay in-active with its deep thoughts tonight and that I’ll be able to sleep. I don’t want to lay there and have cancer questions flying through my brain so I’ll take a sleeping pill and crash. I’ll wake up and tomorrow will be just another day.

I AM The Grinch. For tonight anyway J. Even hearing on the news tonight that I’ve been named CTV Saskatoon’s “Citizen of the Year” hasn’t really changed my Grinchiness.

It will all be better tomorrow.  Mostly because it won’t be New Year’s Eve anymore.

Just ONE of the side effects the chemo gives my fingers.

Christmas? Where did the last few months go?!

I can honestly say I’ve never been through a whirlwind like the last few months. I can NOT remember the majority of September and October because of the pain issues I was having, and the months of November and December seem like a never-ending whirlwind of chemo and sleep with a few chemo complications thrown in for good measure to test my sanity.  

I was in so much pain in September and October because the mets (tumors) in my liver were growing at a rapid pace, stretching the liver capsule. Apparently the liver itself has no pain sensation, but it’s surrounded by a capsule that when stretched causes major pain. I’ll testify to that! The tumors in the liver grew, the liver started to swell and the liver capsule tightened causing me sheer anguish. I saw the palliative pain doctor three weeks in a row and my pain was under control by week three.  On the other hand, by week three I had veins bulging on my sides and stomach and my eyes were jaundiced. I was so uncomfortable and weak that if we were out for a medical appointment my husband had to hold me up as I walked, or push me in a wheelchair.  I was short of breath all the time. Next thing I knew I was having issues with my blood pressure being either too high or too low, my resting heart rate was around 125 and I had an oxygen machine in my home. I still use oxygen every night while I sleep, and sometimes for a few days after chemo if my heart is going particularly fast or I’m short of breath to a point where I can’t handle it. I had a nurse coming in twice a week to check my blood pressure and other health issues which made me feel so much safer.  I slept with the phone during the week in case something happened to me and I needed to call for help. I was scared. My heart rate and shortness of breath were the scary parts. I would be just lounging on the couch watching TV and reach up to feel my pulse and it literally felt like it was an animal punching from inside my neck, trying to get out.  One day a nurse from the oxygen company came to check on me and the equipment. My shortness of breath was bothering me that day so I unlocked the door in advance and when she arrived I stood at the top of the stairs and hollered for her to “come on in!”  I had just finished having breakfast so I told her to come in, make herself at home and I took the 12 steps to the kitchen counter to drop off my cereal bowl. I then walked the 12 steps back to the couch and sat down. We chatted for a few minutes and she put the Pulse/Ox on my finger. This neat little clip just lightly clamps onto the end of your finger and tells the medical professional what your pulse is and your rate of oxygen in-take. I had no issue with the latter as my oxygen saturation was at 98%. My pulse however, was a different story. It was going strong at 146. Read back over what I did and you’ll see it was 24 steps at a slow walk – and my pulse was racing. We left the monitor on for almost the entire 90 minute visit and it took the majority of that time for my heart rate to come down to 105. Can you see why I sleep with the phone and am happy to have a nurse come check on me?

On a more recent subject, it sure seems like Christmas arrived way too quickly. Feeling crappy certainly doesn’t help when you have decorating, Christmas cards to send out, shopping to do, and cleaning of the house because we’re the hosts this year. We usually gather at my brother’s home simply because it’s the house with the most room for all of us, but this year because I’m on oxygen and not feeling well we decided it would be best if everyone came to our place. Ten years ago when I was first diagnosed we hosted Christmas and it was like a weird time warp doing it again ten years later. This time the oldest niece was 15 instead of 5 and the youngest was 10 instead of 6 months – and we didn’t take turns trying on my wig. That was something so spur-of-the-moment that we couldn’t possibly replicate the craziness of what we’d done ten years ago.  Unfortunately I didn’t remember or realize until 2 days before everyone’s arrival that it takes more work to clean and get ready to host the event than it does to show up at someone else’s house.  I honestly don’t know why I felt I had to do such a major cleaning and organizing blitz before my family came for Christmas. There are only 9 of us and they wouldn’t have cared. They would have understood because after all, the house would have looked the way it always does! Unfortunately the pool table and games table (oh, and the bar too) are covered with scrapbooking stuff. Equipment, layouts, paper, photographs, and stamps – you name it – it was covering a surface that was needed for entertaining. Picking it all up and putting it away wouldn’t be a problem…or so I thought. When I realized the craft table in the den was covered with about 100 pounds of JUNK I knew I was in for more work than anticipated. Luckily I was on a “medically induced high” (more on that later) and miraculously removed 3 boxes of recycling and a pile of other junk off the craft table and packed up all the scrapping stuff neatly to put where it belongs. I’ve been dreading cleaning that craft table for months and it felt so good to get it done.  

It truly is a miracle I was able to get the house cleaned and my shopping done, but that only happened thanks to my “medically induced high”.  Christmas Eve was on Friday. I saw my oncologist on Monday. Blood tests showed my hemoglobin was low and I needed a blood transfusion. Tuesday I got 2 units of blood – the first blood transfusion in my entire ten years of living with cancer. I was slightly freaked out and posted something to that effect on my Facebook status. Thankfully some of my ‘cancer friends’ posted that I’d feel like superwoman after so that took the edge off my anxiety. Two days later I had chemo which brought along the steroid high. I felt SO good. I felt NORMAL! It’s been months since I felt this good as a matter of fact. The blood transfusion was just unbelievable. I spent about 5 hours total in the hospital getting the gift of life and it made a MONSTROUS difference in my quality of life.  My heart rate went back to normal and my shortness of breath was totally gone. I’d have to say those 2 units of blood were the best gift I received this Christmas. I’ve always known donating blood is important, but until I needed blood during the holiday season I didn’t truly realize how important it is. The difference those 2 units made in my life are indescribable. It’s been one week since the transfusion and I’m still feeling good! The steroid high lasted the usual amount of time and I think because of the transfusion I didn’t crash as hard as I usually do after.

I’d like to ask you to seriously consider being a blood donor. It doesn’t take much of your time but it makes an incredible difference to a cancer patient. Imagine what it does for someone who has been in a horrific automobile accident and needs blood. There are so many of us who need YOU and it doesn’t cost you a thing except your time. What could be easier? You don’t have to worry about the financial cost and you will know that you have made a difference in someone’s life. I have a feeling I’ll need more transfusions and I know for a fact that many cancer patients each week need blood (not to mention emergency & surgery patients) – so PLEASE, if you can, donate blood. My heart rate thanks you J

Elizabeth Edwards loses her battle with MBC

I was shocked to hear that Elizabeth Edwards passed away today. It was only last night (Dec 6th) that news releases said doctors told her she had exhausted all treatment options and was losing her battle. Clearly her family was controlling the situation and the release of information. I’m impressed that news of her condition wasn’t leaked before the family was ready.  The news releases yesterdaysaid that she had left a message on her Facebook page so I went there to read it and virtually EVERYTHING had been removed from her Facebook page. There were many, many well wishes on her page and I gave up after going through many “old postings” to see if I could find her posting.

While watching the news on TV tonight I was sure I wasn’t hearing correctly that she’d passed away…but it was true. Another kick to the gut. Those of us who are fighting metastatic breast cancer, as Elizabeth Edwards was, feel like we’ve lost a piece of hope when someone like us loses the battle. We start to worry about ourselves and our friends. Every little ache and pain gets our mind spinning. In general, the paranoia and fear come creeping back into our life if they weren’t already there at the time.

I’ve somehow managed to live with stage 4 incurable breast cancer (known as metastatic breast cancer) for over ten years and I’ve had to deal with the loss of many friends and acquaintances over those ten years. Every time a little piece of me goes with them. I get kicked down for a bit and then I somehow manage to pick myself up again - because I know that’s what they would want.

One thing I’m quite disappointed in tonight is that I didn’t get the chance to hear Elizabeth Edwards speak. Last year Living Beyond Breast Cancer held their annual Conference for Women with Metastatic Breast Cancer in Philadelphia. I applied and got funding but it wasn’t enough money to cover costs and for me to justify the expenses I’d have to personally take on, so I regretfully had to decline the scholarship. I really wanted to attend her presentation but it just wasn’t financially possible. I was able to attend the same conference this year but the main speaker was nowhere near the calibre of Elizabeth Edwards and certainly didn’t have experience with metastatic breast cancer. It was a fabulous conference but I’ve always been saddened that I was unable to be there the year Ms. Edwards was.

Here’s an article I found tonight on how some of the media reports may give people the wrong impression about stopping cancer treatment. Just the mention that she stopped treatment makes people come to their own conclusions - and they’re usually so far off the mark. I’m glad this oncologist is trying to get the information out there before people can even start coming up with their own hair-brained ideas about stopping cancer treatment when there’s clearly no more that can be done. Read on….you’ll see what I mean!

Oncologist Worries About Misconceptions Over Cancer Treatment

Elizabeth Edwards‘ decision to stop cancer treatment before her death has some local cancer experts worried that people might think that her decision to stop treatment was a death sentence.

Edwards, 61, died on Tuesday December 7th after a long battle with cancer. She was the estranged wife of former North Carolina Senator and Democratic Presidential candidate John Edwards.

Dr. Sarah Taylor is an oncologist at the University of Kansas Cancer Center. She says that she is saddened by the news of Elizabeth Edwards’ death, but she urges people to find out the facts instead of making choices based on Edwards’ decisions.

“It’s also sad to me that this is perceived that she stopped treatment one day, and died the next,” said Dr. Taylor.

Edwards stopped receiving treatment this month when doctors told her it would be unproductive after the cancer spread to her liver. Dr. Taylor says that stopping cancer treatment isn’t a death sentence, and that there are many people who stop and survive and have a better quality of life.

“Because they’re not having the fatigue of the treatment, they may actually live longer by ceasing anti-cancer treatment,” said Dr. Taylor.

Edwards spent her final days in hospice care. It’s the very end stage of palliative care, which is designed to alleviate disease symptoms for an ailing person. It’s also designed to improved the person’s quality of life.

Dr. Taylor says that she also worries that Edwards’ death could give people the wrong idea about when it’s acceptable to have palliative care. She says that sometimes people continue treatments that aren’t helping them simply because they don’t want to feel like they’re giving up.

“Palliative care is the type of care that you can begin long before you decide that you’re at the end of life,” said Dr. Taylor. “Palliative care is a matter of trying to treat symptoms.”

RIDERS! and: Eribulin for Late-Stage Breast Cancer Approved by FDA

 How about that football game yesterday??!!! WOW. The last two Sundays have been so tense and exciting as our Saskatchewan Roughriders fought their way to the Grey Cup. Yesterday’s game vs the Calgary Stampeders wasn’t as tense as last week’s game against B.C. Thank goodness for that, because I don’t think my heart and blood pressure could handle any more games like that one against B.C.!  GO RIDERS!!

I was supposed to be going to the Grey Cup in Edmonton. We have an annual family trip that’s been going on for a few years now. Whoever can afford it/wants to go, meets up in the Grey Cup host city and stays in the same hotel. Sometimes they go to the game, sometimes they don’t. The main reason is to party at Riderville. Yes, I have family members who have flown cross-Canada to Montreal just so they can go to Riderville! With this year’s festivities being in Edmonton I decided to go along with Husband. I didn’t plan on going to Riderville or any of the other parties. My plan was to SHOP. (insert evil grin here) I also thought I’d visit with some friends who live there, or just spend all my time at Bath and Body Works. I didn’t want to go to any of the events with family because I don’t drink anymore and I knew I’d just get bored or sick and tired of being the sober one

When I had to go back into chemo we knew I might not be able to go, depending on where I am in my chemo cycle. Because I’ve had such a tough time with the first 2 cycles we decided (with much sadness & anger on my part) that I would NOT be going to the Grey Cup. Husband found a good friend who will go with him, and they’re both pretty happy that our room just happened to have 2 beds!! I’m secretly hoping there is a mix-up and they have to sleep together in a queen size bed. I laugh just thinking about it

So, I’ll be missing the fun in Edmonton but I’ll figure something out so I can still enjoy the weekend. Maybe a pedicure with a friend, Christmas shopping, or a scrapping frenzy weekend. I just have to decide if I’m going to watch the Grey Cup game by myself, invite someone over….or invite myself to someone’s house.

Ok, on with the news. I just got this today from a Doctor friend of mine and thought it may interest those of you who are Stage 4.

FDA Approves Eribulin for Late-Stage Breast Cancer

Yael Waknine

Β 

November 16, 2010 β€” The US Food and Drug Administration (FDA) approved eribulin mesylate injection (Halaven; Eisai, Inc) yesterday for the treatment of metastatic breast cancer in patients who have received at least 2 prior chemotherapy regimens for late-stage disease.

Eribulin is a synthetic analog of halichondrin B, a novel microtubule dynamics inhibitor extracted from the marine spongeΒ Halichondria okadia.

FDA approval was based on data from a phase 3 study of 762 women with metastatic breast cancer who had been heavily pretreated with a median of 4 chemotherapy regimens that included an anthracycline and a taxane.

As previously reportedΒ byΒ Medscape Medical News, results showed that eribulin significantly improved overall survival compared with a treatment of physician’s choice (13.12 vs 10.65 months; Ξ”, 2.47 months; hazard ratio, 0.81;Β PΒ = .041). The 1-year survival rate was 53.9% for eribulin-treated patients and 43.7% for those given other drugs.

“There are limited treatment options for women with aggressive forms of late-stage breast cancer who have already received other therapies,” said Richard Pazdur, MD, director of the Office of Oncology Drug Products in the FDA’s Center for Drug Evaluation and Research, in an agency news release. “Halaven shows a clear survival benefit and is an important new option for women.”

Adverse events most commonly reported in eribulin-treated study patients included neutropenia, anemia, leukopenia, alopecia, fatigue, nausea, asthenia, peripheral neuropathy, and constipation.

Other FDA-approved therapeutic options for the treatment of refractory, metastatic breast cancer include capecitabine tablets (Xeloda; Hoffmann-LaRoche, Inc) for disease resistant to paclitaxel and anthracycline-based chemotherapy; ixabepilone infusion (Ixempra; Bristol-Myers Squibb Co) for late-stage disease resistant to an anthracycline, taxane, and capecitabine; and a combination of capecitabine and ixabepilone for disease resistant to anthracycline- and taxane-based chemotherapy.

Shortest post EVER (so far!)

I feel such guilt every day at not blogging, but today I’m forcing myself to just put out a message. Mostly just to thank everyone for checking my blog to see if I’ve written something (some people check every day, God bless you, but you will RARELY see something written here every day!). I’m starting to feel better but every day is different. I’ve now had 2 chemo treatments (the 2nd go-round this year) and spend most days sleeping late and then laying on the couch watching afternoon talk TV.  It’s a nice break from the last numerous weeks when I seemed to have medical appts every single day as we tried to solve my pain issues and other complications that have arisen before and during treatment.  My pain is now under control (YESSSS!!!) and I’m feeling great that way, but the rest of me isn’t so sure now My blood pressure is either too high or too low, and sometimes normal. My heart rate seems high and is really slowing me down, so I shuffle carefully around the house and have a stool to sit on in the kitchen if I lose steam. Sometimes I can’t stand long enough to make a bowl of cereal. That’s depressing.  On the other hand, by the time I’m ready for my next chemo infusion I’m feeling pretty “normal”. It’s the cycle you get put through as a cancer patient.

And now that I’ve written more than I thought I had the energy to write, this is what I intended to write as a thank you to those who check my little space to see how I’m doing….

“I get by with a little help from my friends.”

    -John Lennon, With a Little Help from my Friends

Thanks everyone for your prayers, thoughts, kindness, and most of all for caring. Send up an extra prayer or ten tonight for a BUNCH of us cancer fighters who need your help. Unfortunately there’s a lot of us out here…

A quick update

I wish I’d had the energy to write something - anything here in the last few weeks but honestly I’ve felt so horrible that I haven’t even spent any time checking emails or playing on the internet. You KNOW I’m not feeling good when that happens. I had my first chemo for this next time around on October 21st, the first day of our Radio Marathon and the last three weeks have been a blur. I’ve had problems with blood pressure being too high, then way too low; rapidly growing tumors in my liver causing pain and more; and of course throw some chemo in there and it’s all a blender of crap-ness. I literally have spent the last three weeks in one of three places: bed, the couch, or a doctor’s office. It was a struggle just to get me out of the house and into the truck to GET TO a doctors appointment. I started feeling better last Thursday and I have my next chemo this week so please wish me well and let’s hope that round number 2 is nowhere near as harsh as round number 1 was.

If you’re praying for me, please toss in “and all cancer patients fighting to survive” because right now there are so many of us who need your prayers. I’m praying for my cousin who is going through her second round of chemo in less than a year. I also pray for Kelly in the U.S. and Lori here in Saskatoon. There are so many we don’t know of and I think we should pray for us all. Unfortunately there are just so many of us right now who are going through cancer hell and need all the help we can get.

I will try and recount the last three weeks of insanity here in the next week, providing my next treatment doesn’t toss me back in the pits of sickness again. If I’m feeling ok I should be able to pick up the laptop and write. If I’m really sick, you won’t see a thing because I can’t/don’t write when I’m ill for some reason. Thanks everyone for your support and best wishes. I apologize for not responding if you’ve sent me an email, but I’ve been inundated since the radio marathon and the story in the paper and I just can not respond to that many emails! I DO read them and appreciate them all so much so thank you for taking the time to email.

And, one final bit of info: I’m now bald AGAIN….for the second time this year but thanks to Amanda’s Bandana’s by Janet Weser, my noggin is keeping warm.