45 and ALIVE!
Long time no blog….sorry!
Apparently there actually ARE people who read my blog J. Whenever they are able to find a posting that is! A lot has happened since I last wrote here, the biggest event being my 45th birthday. As I’ve mentioned before, it was a goal I made when I was diagnosed with metastatic breast cancer at the age of 35.
I did it. I really did it. Thank you God, thank you Sweet Baby Jesus, thank you, thank you, thank you. Although it was an important day for me I didn’t plan anything special, as my husband and I would be on the sunny beaches of St. Lucia enjoying paradise. I told him this was ALL I needed for a birthday present. Just to be somewhere warm and beautiful, and at a Sandals resort no less, was more than I could have ever hoped for. Our first ever warm winter vacation was one I thought was my first AND my last. It was thought that I wouldn’t survive very long, so I honestly believed it would be my one and only warm winter vaction. We went to a Sandals resort in Jamaica back in the fall of 2001 right after 9/11 happened. Nothing could have kept me off that plane, and even though I only had a couple inches of hair and didn’t look very feminine I had a blast. We met some wonderful people and even keep in touch with some today…ten years later. This trip was just as fun. We met TONS of new friends that I’m sure we’ll stay in touch with for many years to come. TNT were our favourite duo, followed by A & D and D & J….all Canadians! In fact we got along with TNT so well we asked them to be with us on a very special day.
When we planned this trip, I asked my husband if we could renew our wedding vows there. He agreed, and it was such a perfect ceremony. We had a great officiant, a caring wedding planner, excellent photographer, superb photographer #2 (TNT!), and renewed our wedding vows barefoot on the sand with the rowdy St. Lucian waves crashing behind us. We’d been at the resort for five days and had fallen in love with the sound of the pounding waves, despite the fact that most days were a “red flag day”, meaning it’s not safe to swim. We did have some fun in the ocean, but the waves at the resort were just too dangerous, so we went to another Sandals resort to swim and snorkel in the ocean. I didn’t mind at all because there’s something so romantic about the sound of ocean waves. It’s also very relaxing and exciting at the same time. To see the sheer size of some of them is truly astounding.
My birthday was at the end of our holiday and it was one of the best birthdays, simply because I was still alive and in a beautiful place. Two or three weeks before we left, some friends threw a surprise party for me. Six of us had gone out for supper and they surprised me when we went back to the W residence and all the walls were covered with Happy Birthday balloons. I stood there for quite awhile, digging in the recesses of my pitiful menopausal mind trying to remember whose birthday I’d forgotten. I then decided to admit that I’d forgotten and asked “Whose birthday am I forgetting?”. Turns out it was a party for ME a few weeks early! The kids ran over with a princess wand, tiara, and gift bags wishing me a happy birthday. I proudly wore my tiara and waved my magic wand around like I was a real princess and then got another excellent, delicious surprise when I saw THE BOX. I recognized the box from last year’s birthday cake surprise (go back one year in this blog for details and pictures!!) and my mouth started watering in anticipation. When the lid was opened, the smooth smell of chocolate and fresh strawberries wafted over me. Oh…it was heaven! It was another work of art by Jena at Sugartree Custom Cakes that tasted just as good as it looked. Even though we were stuffed from supper, we were just like the kids and couldn’t wait to dig in!
My 2nd, and just as yummy, Sugartree Custom Cake!
The 45th birthday celebrations started early. The first party was on January 16th and the second surprise party was on February 20th so I didn’t have a clue. Turns out my two friends who’d organized the first party thought I deserved to have something bigger and they should “share me with some other people”, so they organized a surprise party at The Keg. Once again I thought it was just us and two other couples going out for supper but when I rounded the corner to the room there was a long table filled with familiar faces, some who had driven hours to be there. My husband’s birthday was coming up and I had a secret up MY sleeve for him, with a cake from Sugartree Custom Cakes. After my first surprise party he said “All I want for MY birthday is one of those cakes!”, so I arranged it for the day were were going to The Keg so the two of us wouldn’t just cut it in half and eat it all ourselves :). When I saw all the people sitting in the room I assumed it was for my husband’s birthday! Wrong. I celebrated it as if it was a joint birthday celebration but of course I was the only one getting cards and gifts because no one knew about my husband’s birthday until later when I brought out the special birthday cake to sit beside the Safeway cupcake-cake they’d got for the big group! I’d ordered a decadent chocolate cake from Jena at Sugartree and we cut it up first to serve, and ended up sending cupcakes home with almost everyone. Another surprise that evening was that everyone was coming back to OUR house after for a party. I thought it was just us and our 4 friends so I did minimal cleaning. I hope no one noticed all the dust in this place!!
My birthday celebration lasted for about a month and I’ve definitely eaten my share of cake as evidenced by the weight on the scale these days. I’m just itching for spring to arrive so I can get back to doing some gardening and get some of these extra pounds off.
Next task is to get through re-staging tests. Bone Scan and CT scan on the horizon with results to follow that will hopefully show nothing is happening with that new liver tumour we discovered last time. I try not to dwell on it and just enjoy the fact that I’m alive but “test time” is definitely a stressful time for me and my family. Luckily I have other stuff that I need to blog about because I’m so far behind, so hopefully you’ll see something here again very soon. Perhaps I’ll share some fun from the girls scrapbook weekend I just took part in. I swear I won’t share anything personal I heard that weekend, to protect the innocent gaggle who took part J
45 years down, hopefully a lot more to go.
Me with my tiara!
SAD (seasonal and dejected)
Right about now I should be happy and excited. I’ll soon celebrate my landmark birthday and also go on a warm winter holiday. For some reason all I seem to be able to do is wallow in sadness. All it takes is a memory, a realization, and I’m in a funk. It could be a nasty case of Seasonal Affective Disorder (SAD). Maybe I’m just seasonal and dejected. It seems like years since I’ve felt the sun on my face. Spending the entire winter indoors doesn’t help, but I admit that winter is my worst time of year. I’m a big lazy-ass who can’t get my butt out of bed, much less get my butt out of the house. Once I get out I feel so much better. That’s the hardest part – getting my ass out of bed/off the couch and out the door.
I forced myself to leave the house last week and went to the mall two days in a row. Mostly to do some walking where I knew I wouldn’t have to worry about slipping on ice, but also to do some “preliminary shopping”. I cruise the mall checking out the stores and the window displays thinking about where I might want to spend my money. Well, technically it’s not money. It’s gift cards from Christmas and I can’t just dive in and use them right away. I have to make the enjoyment last and think seriously about what I might want to use the gift card for. It felt good to get out of the house, grab a big Booster Juice and then hit the mall to walk some laps and window gawk. Of course I couldn’t go into any stores until I finished my massive Pomegranate Punch (one of the high protein Booster Juices on the menu) because food and drinks aren’t allowed inside clothing stores. It was a good thing too because I wouldn’t have done as much walking as I should have if it wasn’t for the Booster Juice in my mitt.
Getting out of the house helped my mood immensely but now I’m back at spending time indoors after a weekend blizzard blanketed us with over 8 inches of heavy snow. I did venture out of the house for a bit today (Monday Jan 25th) but only because the fridge was almost completely bare and we needed food. The best part of the day was having some fun with my 4 x 4 in the snow. Now that is something that is guaranteed to put a smile on my face!
I guess I’ll just spit out what has been dragging me down. Firstly, I found out yesterday that one of my new breast cancer friends is going through hell right now. I’ve written about Tasha and Ryan before, but if you haven’t read about them before here’s a little bit of info. Ryan was a pilot and he’s been fighting brain cancer for the last 12 and a half years. Tasha has battled breast cancer (more than once) at a very young age. They are married, have a gorgeous little boy and Ryan’s health took a drastic turn around Christmas/New Year’s. There is nothing more they can do for him and it appears as though the cancer may be winning. I went to Ryan’s blog yesterday and as soon as I saw the title my heart sank. He’s moving to a hospice. At this point he’s still doing very well, but things could change quickly and he needs to be in a place that is safe for him. I’m so moved by Ryan’s writing and how he is feeling, mostly because he is so strong and positive. He admits to being “pissed off” but he has accepted what is most likely going to happen and his wisdom amazes me. I can’t even begin to think about how his wife must be feeling. Reading her blog gives me a sense of it and I think the part that went straight to my heart is thinking that after today she won’t have her husband beside her in bed when she wakes up in the morning. She has to also deal with all these emotions and changes while being a mom and helping her son through this difficult time too. I’m in awe of her strength and my heart goes out to her.
And today, January 25th marks one year since the passing of my friend Angie Sather. She lost her battle with breast cancer exactly one year ago at the age of only 32. I still can’t believe she’s gone and what I miss the most is being able to pick up the phone and call her when I’m going through a tough time. And boy do I miss that smile. Angie had the most beautiful smile. I miss her so much and words just can’t adequately explain it. She was there for me in a way that no one ever has been before, and I hope I was able to do the same for her. Even though we didn’t know each other for long, or very well for that matter, we were able to be there for each other during the hardest times. We had each other to call when we needed someone to talk to (which, translated, actually means listen to) about the roughest parts emotionally and physically. Metastatic breast cancer takes such a toll on your physical and mental being and to have someone who really gets what you’re going through is invaluable. I don’t know if she noticed a pattern in when I called her, but I noticed that she often called me on Sunday nights. We’d be on our way back to the city from a weekend of camping and my cell phone would ring. Angie would be on the line and we’d talk, or I would just listen, for as long as she needed me. To have someone who will do that for you means more than almost anything. It didn’t matter when I called her…she was always there for me too. It went both ways with us and we were able to help each other through some pretty tough times. I’ll never stop missing her, and I’m glad she was in my life. Even though it hurts to lose a friend like her I wouldn’t change a thing because I had the gift of knowing her even for just a little while and she helped me so much through some extremely difficult parts of my cancer battle. I’m thankful for the time she was in my life.
Now that I’ve got what’s been eating me up spilled out on the page I can move on to something much better.
On February 7th, 2010 I will make it to an age I never thought possible when I was diagnosed with advanced breast cancer almost ten years ago. I learned early in my diagnosis that the median survival rate for someone like me with widespread breast cancer is 2.5 years. Initially I thought I’d be happy to make it through 2 and a half years but very quickly I made a personal goal. My goal was to live to be 45 years old. I’ll reach that goal very soon and it’s going to be the best birthday ever. I told my husband I didn’t want a gift this year because making it to 45 was really the only gift I need, along with him being by my side to celebrate it. Normally I’d want him to ignore my request and get me a present, but this time all I really want is to spend that day with him and soak up every single moment of it. That has become even clearer to me knowing what Ryan and Tasha are going through.
It’s a goal no one thought was possible but somehow I’ve been lucky enough to receive. It’s no longer a goal – it’s a gift. A gift of ten more years with my husband, my family, and my friends. What more could anyone ever want?
Fears & Tears….and somehow there’s still hope
Have you ever had one of those days where you just wanted…needed…to cry? I’ve had so many over the last 9+ years of my cancer battle but they occur less and less as time wears on and I become accustomed to the new (and unwanted) life I was thrown into. I admit that today I sat on my living room couch and I cried. Not the kind of cry with silent tears and a lump in your throat, but the full-on sobbing, gasping-for-air-crying that requires gobs of Kleenex and leaves you with swollen red eyes that seem to remain that way for the next several hours. As I started to sob, my cat went from his contented curled up purring ball status to a sprint across the room where he stared at me with a questioning look. I hoped he would come back and try to comfort me but that didn’t happen (he’s a cat – not a dog!). Sometimes he senses I’m unhappy and will come and sit with me but this was not one of those times.
Even though I got relatively good news recently, I’m still internally dealing with my recent scare and the fact that I’m still walking the tight rope of life with cancer and I could be thrown back into treatment or crisis at any moment. The fact that I’ve lost the function of one of my kidneys and that I have a new tumor in the lining around my liver is frequently in the back of my mind.
My day started out with blood work at the cancer centre and a very young girl was in the chair across from me. Now that I’m over 40 I can’t gauge even close to the correct age for those younger than me. I’m going to say she was in her late teens or early 20’s. She was young. Too young. So beautiful. She was comfortable being there and I think that really un-nerved me. I’ve met people who literally have panic attacks if they get close to the cancer centre. This girl was so calm and laid back that I’m guessing she’s a cancer “pro” like I am. That was strike one against my emotional stability. Seeing a beautiful young girl who is also in the “cancer world” when she should be doing things others her age are.
It didn’t even take three strikes to hit me with wracking sobs of sorrow. I was down for the count at strike two. I was watching Oprah today and she had Nate Berkus as a guest and they replayed some of the footage and talked about the loss of his partner Fernando in the Boxing Day Tsunami. Then they showed a little boy and his family who were dealing with the death of a child. Eric and Aaron were twins and they were very close, holding hands in the womb and in the world as newborns. This segment really got across how close these two little boys were to one another. Eric had a brain tumor that was benign, treated with radiation, and it went away. Then it came back cancerous and took his life. A sweet young boy lost his fight with cancer and his twin brother and family were still trying to deal with their grief. I’m not usually affected this strongly by the story of someone with cancer no matter what their age. But there was something about this story that really got to me. I could feel his pain even though it wasn’t showing on his face. I found myself crying while the adults around him were giving advice about how to deal with his grief, how they dealt with losses of their own, and how the pain would lessen over time.
Then I thought about how it has been one year since my friend Angie lost her battle with breast cancer at the age of 32. Where did the year go? How did we make it through without her? I feel lost without having her to call when I need to talk about “deep cancer issues” and I can’t even begin to imagine how her close friends and family are feeling. Her death left a huge, gaping wound in the hearts of so many people. One year without that smile. One year without that laugh. One year of not being able to pick up the phone and call her.
I also received sad news via email about someone I’ve never met, but I know his wife. I met Tasha in Toronto at Rethink Breast Cancer’s Breast Fest Film Festival. We were each featured in the film “About Her”. Not only had she battled breast cancer - her husband has been fighting brain cancer for many years. Just in the last few days they found out his brain cancer has worsened. He is losing vision, walking with a cane and there are no further treatments they can give him. AND HE’S HAPPY. He is positive and upbeat (I’m sure he’s not that way all the time), but mostly he’s just grateful to be in this moment. He’s happy to be alive and with his wife and 4 year old son whom he loves so very much. He wants to tell his story and help others, even though he may be dying. He is still creating memories for his son, so he’ll remember his dad. They had beautiful family photos taken and I know they will be treasured by their son, and by Tasha even more. The man she loves with all her heart, and the man who is the father of her child is most likely losing his battle with cancer. The stress of all this must be just piercing a hole in her heart. He’s on a waiting list to get into a hospice and will stay at home as long as he can. Ryan has been battling brain cancer off and on for 12 and a half years and used to be a pilot. The only airplanes he’s able to control now are the toy airplanes he and his son play with. I think he’s doing the right thing, mostly because right now he is making memories for his son. His son will see the photos and the TV news stories when he’s older and he will realize how very much his daddy loved him. He’ll be able to hear his voice, and he’ll be able to see footage of him and his dad playing together. Making memories is so important in the life of a child and today’s technology can bring him to life in mere moments anytime he needs to see his dad.
I can’t even begin to imagine the stress that Ryan’s wife Tasha must be under. She has battled breast cancer, and been by her husband’s side as he’s fought brain cancer. They’ve each been through more than anyone should ever have to endure. I have a heavy feeling pulling me down again tonight, but I am also in awe of the strength they are each showing, and the fact that they are sharing their story once again so they can help others. Tasha and Ryan are two incredible human beings. They’re showing the world how love endures and what really matters in life, even as it may be coming to an end.
And I thought I was having a bad day? Not even close.
Ryan and Tasha each have a blog and have been writing through their cancer battle. The strength Ryan has is shining through. Here’s an excerpt from his most recent blog posting of January 12, 2010:
“The question now is where do we go from here. I had about 5 minutes of sadness, tears, anger and giving up before I hopped back into the left side of the plane to start the flight through the storm. I thought that I had it on cruise control.
I can sit here and explain the anger and sadness of this morning, yet that is a complete waste of energy for both you and I. Being this way would solely allow the cancer to actually believe in itself more confidently. I don’t state this to say that I will beat this ongoing challenge. I may very well be gone in a few months. I’ve spent a lot of time over the last 15 months to think and review the true purpose of my existence (and what may apply to everyone).
We are here to enjoy life in as many ways as possible. We are here to learn (and this does not apply to school). We are here to spread love to others to ensure that they feel it. We are here to accept the reality that is around us, as it is something that we will never control. Most importantly…we are here to know ourselves. After all, that is all that we can take with us when the time comes to go.
Tasha and I were back on the news again today so that we can do what we can to help other people take advantage of the fact that we even exist. To ensure that the small stuff means nothing and what is truly important is LOVE, PEACE and HAPPINESS. This life we live is full of chaos so please do yourself a favour and take the time to slow things down. Otherwise, you won’t even see it until the time comes to go.
I will be continuing with my blog as time goes on to fill you in on any changes. Although I do feel very confident that I will be here for quite a while, I have also accepted that I might not be.
Peace, Love, Happiness”
Read Ryan’s Blog, “Ryan’s Path”: http://ryanwesterman.blogspot.com
Read Tasha’s blog, “The Journey (Part 2)”: http://tashaengel.blogspot.com
The latest news about breast cancer
One of the organizations I have very high regard for is “Living Beyond Breast Cancer”, based out of the United States. They have information for breast cancer patients from every aspect of diagnosis and demographic. Young women, African American women, women who partner with women, metastatic, Hispanic…and the list goes on. You can spend a LOT of time on their website and every minute will be worth it. On January 6th I took part in a teleconference that featured Dr. Eric Winer from Dana Farber Cancer Institute in the U.S. I first saw Dr. Winer speak at the Young Women’s Conference in Dallas in 2009 and was immediately impressed by his knowledge, caring and candor. Dr. Winer attended the San Antonio Breast Cancer Conference which was held in December in San Antonio, Texas. He talked about all the news that came out of the conference during the teleconference last week. It’s well worth taking an hour and 15 minutes out of your day to listen to the podcast. This link will take you directly to the page that features all of LBBC’s podcasts. You never know what you might find that will pertain to your situation and give you knowledge you can take to your next oncologist appointment. Check out the podcast here:
http://www.lbbc.org/transcript-category.asp?transcriptcategory=medical
…and the results are in
FINALLY!!! I have news and the wait is over. The waiting is the worst part in all of this cancer fighting shit. Waiting for test results, waiting to find out what kind of treatment you have to get, waiting to see a doctor. Waiting, waiting, and more damn waiting. The news I have been waiting for arrived tonight in the form of a phone call from my incredible urological surgeon. He’s just a phenomenal doctor and a great communicator. Willing to answer all questions we throw at him, and returning a call I made when I had a question I’d forgotten to ask. He genuinely cares, and I find that is one of the most important qualities to look for in your medical team.
Thank you to those of you who have added me to prayer lists at your church, who have been praying for me on your own, who have been sending me positive vibes, and especially for those who have been kind enough to lend an ear when I needed it. You know who you are…and that also includes all my breast cancer email and personal friends!! YOU ROCK, and most of all you give me strength. I wish I could make a really big smiley face because that’s the way I’m feeling right now. What a difference a day or two - and a phone call - can make in the life of someone with cancer. For now I’ll keep fighting and hope the next test brings good news. Still waiting…
I’m still waiting for results from the urine sample taken during my cystoscopy December 16th. Did it show cancer cells or was it inconclusive? Either way there are going to be some major decisions I’ll have to make. Surgery? Chemo? What to do about the kidney not draining…and the questions go on & on. I managed to hold myself back from doing any internet research until after New Year’s Eve because that’s my “Scroogiest” time of the year. I was TRYING so hard to be in a good mood, but I know I was snippy. We had friends over for supper and just hung out visiting and watching the Canada/USA game from the World Junior Hockey Championships here in Saskatoon. (YAY Canada! What a game!!) I found myself snapping at my husband a few times. If you ask him it was likely more than a few. I feel so bad for the way I react and how it makes him feel. I wish I could just keep my big yap SHUT and try to be calm, serene and happy-go-lucky. Well, that’s not really “me” when I’m anxious and tense. I get wound up and who knows what’s gonna come flying out of my mouth. My husband deserves a medal for putting up with me for the last 9 years of cancer. I’m sure the other 11 weren’t always a cake-walk either Living with a woman isn’t an easy thing. But hey…living with a man isn’t easy either!
We had a lovely champagne toast at midnight, a great visit, and lots of laughs with our friends but when they were counting down to midnight with the folks on TV I was not counting along. I was sitting on the couch with my eyes glazed over. Or perhaps they were burning a look of evil and hatred toward the television. I can’t recall for sure, but I know I wasn’t happy. I dragged my ass off the couch, pasted on a smile and toasted with them, as it would be exceptionally rude not to…and I wanted my champagne! I don’t drink anymore because alcohol is extremely hard on the liver and my liver has had cancer in it so I want to keep it as healthy as possible, BUT I did have some lovely Brut champagne that wasn’t too bubbly or too dry, and tasted mighty fine with some really dark chocolate We had some different cheeses I’d picked up at the Bulk Cheese Warehouse, nibbled on cookies and chocolates all night and just relaxed. After the stress I’ve been going through I felt I deserved a bit of bubbly. Mind you, the non-alcoholic President’s Choice mocktail Mojito’s were very tasty earlier in the evening!
Earlier in the day my husband asked how I felt about asking some of our neighbor friends over later on in the evening. He was SO wonderful about how he phrased it, and didn’t show any disappointment when I told him I just wanted to keep it to the four of us. I didn’t want to have to “entertain” and the couple we’d invited over know my current situation and that New Year’s isn’t my best time. I’m comfortable in telling them how I feel and they completely understand when I’m a bear with all that’s going on right now. (perhaps they have bear spray on hand in case I get out of control?!)
Tonight I couldn’t hold back any longer. I spent most of the night on-line researching kidney “stuff” and of course found myself crying a bit and getting bent out of shape and pissed off. This is just what I did NOT want to do! My plan has been to try and remain calm until we know for SURE what is going on. However, I read some things that upset me and now I have to find my way back to serenity. Might be time for another valium….
My husband came upstairs and I told him what I’d discovered and why I was so upset. God, please bless this man I married. He’s the cat’s pyjama’s (ie: awesome). He stayed calm and reminded me there was no reason to get bent out of shape until we know for SURE what’s going on. After talking it out, and now writing it out, I feel better. There’s still a twinge of anxiety there - gnawing away at my heart - but I’m going to grab my new Marian Keyes novel and transport myself into someone else’s life, and then hopefully drift off into a night of deep sleep. I will meditate beforehand that “I will NOT have any cancer dreams tonight” and hope it works. And I’ll also hope that maybe tomorrow I’ll be in a better frame of mind and actually get my lard-ass off the couch and do something, anything other than feeling sorry for myself and being afraid of things that are still unknown.
The Plot Thickens
The other day I wrote about my new tumor. Only ONE new tumor that is 2 centimetres in size. Now I’m wondering if I’ve got another one. It’s nothing I can feel physically, but my body seems to be causing me more problems. Just like it did last year at this time. One year ago I was having my ovaries removed because of a tumor. Now here I am with a new tumor (see previous post) and possibly a second to keep it company.
Another thing that was discovered over this past year of scans was something suspicious on the tube that goes from my right kidney to my bladder. It’s known as the ureter (there’s your anatomy lesson for the day), and the ureter on the right side of my body has a blockage. Whatever this thing is, it’s gotten larger and is stopping urine from draining properly from the right kidney to the bladder. The last test that discovered the new tumor on my liver also saw that this “thing” was larger. My bone scan also showed that the radioactive isotopes were still in my right kidney when I was scanned. They should have been in the bladder or already eliminated (peed out). The shape of the kidney has changed and it’s obviously not functioning as it should. I can NOT feel anything and don’t notice a difference in anything.
I saw a urological surgeon last week about the blockage in the ureter and he painted a few different scenarios of what could be going on. He also stressed that we needed to do something soon, and the first step was to put a stent into the ureter to help the kidney drain. An opening came up this week and I went in on Wednesday (Dec 16, 2009) to have the procedure done. Everyone else was going in and out of there fairly quickly. Until I came along. Why is it that nothing goes right with this body of mine?! It can never be simple for me.
This was supposed to be a simple, quick procedure but it wasn’t. The surgeon first needs to put a wire up through the bladder, into the correct ureter opening (left or right) and then the stent can be guided in place into the kidney. As the patient you are awake, not even sedated because it’s not really necessary (at least not as a woman…might be different for men!). I’ve had procedures done in the past where I was awake and unsedated but I don’t recall anything like this. I wasn’t worried or tense beforehand, as I knew what to expect. Or so I thought.
It turned out it would NOT be a simple, quick procedure for me. I should have known I was in for another medical adventure when I started feeling burning pain. It’s not an understatement to say that I’ve been through a LOT in the last 9 years of my cancer battle. I can put up with a lot, but for some reason this really got to me. In the beginning I was chatting and joking with the resident, 2 nurses and the x-ray tech while the Urologist did his thing. Then it got to the point where all I could do was groan or swear when I started to feel this burning sensation. I tried deep breathing to deal with the burning, pressure and overall discomfort. It didn’t help matters that I was tense and the room was cool, as operating rooms usually are. I realized I was very tense so I made a point of relaxing my body…hoping it would help. It didn’t. I don’t know how long I was in there but there was a point where I wanted to say “STOP! I’ve had enough!”. That was some time after I really wanted to ask “How much longer?!” but was scared to know. The swearing got a little bit worse at this time. I wasn’t loud or screaming, just repeating the same word over and over again. I was feeling like I might faint, and was actually hoping I would so I wouldn’t have to feel anymore. The sensations became so bad that I went back to deep breathing but started breathing too fast and they asked me to slow down. I was likely close to hyperventilating, but I also needed to hold my breath or breathe slowly and deeply for the x-ray that was guiding the wire up the ureter.
And finally I did what I should have done all along. I reached out my hand, so someone would hold it. I wanted to ask someone to hold my hand but the words wouldn’t come. I couldn’t speak, so I just stretched out my hand and the staff knew what I needed. A very experienced and smart nurse gave me two fingers to squeeze. I know she’s smart and experienced because if she’d given me her entire hand I would have squeezed the bejesus out of it, rendering her hand useless and putting her on Workman’s Comp. I squeezed those two fingers with every ounce of strength I somehow miraculously had, was deep breathing and still swearing occasionally (when I could actually utter a word). It seemed like this was taking forever, but in reality it likely wasn’t that long. I have to say the doctor didn’t just ignore me through all of this….he kept asking if I was ok and I told him what I was feeling at the time.
I think what really sticks in my mind is doing deep breathing and staring into the chocolate brown eyes of the x-ray technician. I’d been visiting with him earlier and when I was in pain I was staring up at him with what must have been a look that begged “Please make it stop”. I swear I could see empathy in his eyes. He genuinely cared, but of course there was nothing he could do to make it better. Just thinking he cared made it better.
Then it was all over. And when I knew it was over, I needed to get rid of the tension and uttered a long string of profanities that made the x-ray tech (with the chocolate brown eyes) say “We don’t usually hear language like that in here!”. I thought he was joking, but he wasn’t I had been so tense that now I really started to feel cold, was shaking and feeling light headed. Out came the warm blankets and I slowly sat up on the table. Those two nurses were so patient with me and wouldn’t let me get off the table until they were sure I was ok. I definitely needed the wheelchair ride out of that room.
I was supposed to have a stent put in that would go from my kidney, down through the ureter and into the bladder so urine can drain from the kidney. Turns out that whatever is blocking the ureter is bigger than we first thought. It’s blocking a fairly large stretch of the ureter and there’s no way a stent would fit. I’m guessing that the burning I was feeling was from the wire trying to go up through this area of the ureter. I think maybe it was such a narrow opening, and that’s why it hurt and caused such discomfort because I didn’t feel a thing in the early stage of the wire going up the ureter. I don’t want to even think about what it would have felt like to try and get a stent through! For some reason (I should have asked why), the urologist said he thinks it’s breast cancer that is causing the blockage. I guess it could be a tumor or lymph nodes that are near the ureter and putting pressure on it. There’s no way to know right now. I don’t know where we’re going from here, but the urologist was able to get the wire into my kidney and get a sample of the urine so it can be tested for cancer cells. It will be awhile before results come in. I can’t help but wonder if I’m one step closer to going back into chemo with this new development.
Let’s Talk About It - I’m in another book!
The Cover of "Let's Talk About It!"
Thought I’d post the great news that a new book specifically designed for young adults with cancer will soon be available. Earlier this year I was asked to write about how I was diagnosed with metastatic breast cancer by Darren Neuberger. He’s the “guru” in charge of putting this book together. It was his idea and I think it’s a GREAT one. I wish I’d had something like this to read when I was diagnosed. Because my situation was so unique I didn’t even realize til many years later that I had been relatively alone as far as having cancer connections who were close to my age. In fact it wasn’t until a conference in Toronto in 2007 that I realized I had been feeling so alone for seven years. It was a Canadian conference for young women with breast cancer and I recall standing in the ballroom in the middle of the first night’s party. I could turn in a complete circle and everywhere all I saw were young women. VERY YOUNG women. It was such an enlightening but also a saddening realization that I came to that night. Not only had I been alone for 7 years battling metastatic breast cancer, but I saw just how many young women are getting breast cancer. I swear every girl in that room looked like she was in her 20’s! I felt helpless and sad that so many beautiful young women were having their bodies disfigured, mangled, and ravaged by breast cancer - mostly by the treatments FOR breast cancer. Seeing traces of scars everywhere really got to me. Maybe it got to me so much because I didn’t have the kind of disfiguring scars that others have. I’d had a lumpectomy where only the lump had been removed from my breast and the area it had been removed from didn’t cause that much of a change in my outward (clothed!) physical appearance. If I look really closely I can see that one breast is a lot bigger than the other and I can really tell when I try on a shirt that has horizontal lines! Everything is normal until you hit the visual line of the boobs….then it wows and curves in wonky ways and the lines aren’t even close to being straight I had felt that every time I looked in the mirror all I saw were scars. Holes in my forehead from the halo; a scar at the base of my throat from the neck surgery; a scar on my breast from the lumpectomy; and a scar on my hip where they took a bone graft for fixing my neck. When I saw hints of the scars that other women had at that conference it really affected me. I felt such empathy for them. I was sad. That’s the best way to put it. It really made me sad. Sad that so many young women ARE getting breast cancer and that they are having to go through losing one or both breasts. Even having reconstruction can involve taking skin grafts from other areas of your body so you get ANOTHER scar! I was sad but I also saw sheer joy that night and throughout the weekend. There were a couple of parties in the main ballroom of the hotel where the conference was, and you could look around and see a ton of young women having FUN! They might have had breast cancer or were going through treatment, but dammit they were having fun. There were smiles everywhere, laughter, hugs, dancing and exchanging phone numbers and email addresses. Meeting someone “just like you” can change your life.
At that conference in Toronto I met a young woman quite by accident. I was in a workshop that turned out to be something totally different than what I envisioned. Funny that I chose the word “envisioned” because we had to “visualize our future self” and find out “what our future self told us”. I was not in the mood for this kind of workshop and when we were told to pair up with the person next to us and share what our “future self” had told us I thought “Oh…..shit”. I looked at the girl to my right. She looked at me, and I said “Sorry but I”m not into this”. Turns out she wasn’t digging the workshop either! We started asking each other questions about ourselves and within seconds we found out that we were both diagnosed metastatic at the age of 35, were both Her2+ and we both had thought we were gonna die because of breast cancer. I was much further along in my cancer battle than she was. In fact I think she was still going through chemo or just about finished. It was the last workshop of the day and we stayed and sat in that room for over an hour afterward sharing our story with each other. I had finally met someone like me, and so had she. I wish I’d been able to meet someone years ago, but this young woman came into my life at just the right time. She came into my life when SHE NEEDED ME. She saw that you are able to live with metastatic breast cancer, and you’re able to live for a long time. Until she met me, she thought she was not going to be around for much longer. When she saw what Herceptin had done for me it gave her hope. Hope is the most powerful gift we can give to others who are going through a cancer experience. We need hope to see that WE CAN GET THROUGH IT. Everything IS going to be ok. If she can do it, so can I. My new friend tells me that day changed the way she looked at her cancer diagnosis. Her husband even emailed me off my website to tell me what a difference I had made. Wow. I really did help someone, and you know what? She helped me too. Even though she was in the early stages of her cancer experience she had a diagnosis similar to mine and was the same age I was at diagnosis. I had NEVER met anyone that even came close until that conference. She tells me she didn’t really feel like going to the conference that day. It was her wedding anniversary and she didn’t feel like dealing with more cancer “stuff” but her husband said to her “You never know…you might be sitting next to someone just like you.” And there I was. Sitting right next to her. I still get goosebumps when I tell that story. It was meant to be that we would meet. Maybe we did fit in with that wacky workshop after all because she may have seen her “future self” in ME, and realized that she was going to be just fine. It was like she was able to breathe again. The air had no longer been sucked out of her like a cancer diagnosis often leaves you feeling.
We’ve since travelled together to other conferences and we keep in touch with email. It was such a gift that I found her that day. She’s given me just as much as I gave her, and that’s why this new book will be valuable to young people diagnosed with cancer. There are stories from all ages about many different cancer diagnoses and I’m sure that it will make a difference in the lives of many other young men and women when they read the stories, and perhaps, find someone “just like them”. Maybe they’ll get their breath back. Maybe they’ll get the kick in the pants they need to pick themselves up and keep on fighting. There’s a lot of “maybes” but it is FOR SURE that many will be positively affected by this book. It should be available in a month or so. The information on where you can get your copy is posted below
The book is called “Let’s Talk About It - Inspiring Stories from Young Adult Cancer Survivors” and it was compiled by Darren Neuberger. My face is one of many on the cover, and my story is inside along with 39 others from all walks of life and cancer diagnoses. Here’s where you can find out more: http://letstalkaboutit.viviti.com/ and order your copy!
I’ve got a new tumour (with Ahnold accent)
So much for me writing every day!! That lasted what….4 or 5 days? No one reads this on a regular basis anyway, and if they do I don’t know about it cuz no one is making any comments! Hello? It’s me - Lisa. Is anyone listening?
Yes, I have a new tumor. And I’m telling everyone about it on my blog. I’ve told a few people here and there over the last couple of weeks since we found out but don’t really feel the need to shout it from the roof tops. I can write about it here because if you’re reading this I think you likely do care or are interested in what goes through the mind of a frequent flyer in the “Cancer World”.
Back to my tumor. I have a brand new one! Isn’t that exciting??! (said with great sarcasm) This is cancer we’re talking about by the way. A new tumor that is TWO centimetres in size, and that’s fairly big for a new tumor. It’s in the lining around my liver. The great thing about this is that it’s not IN the liver. The wacky thing about it is there are NO other new tumors (I hate spelling it with a U..sorry) in my body and none of my many other metastases (cancer spots) have grown. Some have even shrunk. Makes no sense. Cancer doesn’t make sense. Why is it that even though I don’t have to go back into chemo that I’m kind of on the freaked-out side about TWO CENTIMETRES?!! Not quite an inch, but this is cancer we’re talking about here. I have new cancer in my body and I’m scared that this is the start of sliding down the slippery slope. Christmas and New Year’s is a hard time for me because I find it difficult to get excited about a ”new year” that may bring the spread of my cancer and possibly the end of my life. I’ve seen far too many friends die in less than a year who were perfectly fine one year earlier. It could be me. I could be next.
I’m being followed even more closely now with scans to keep an eye on things. If my medical team notices any new growth that they feel is the start of cancer progression, I’ll be tossed into chemo to try and kick it before it gets too wide-spread. I hate chemo (really Lisa?! No one likes chemo you selfish wench!). I don’t WANT to do chemo AGAIN. I did chemo once a week for six months. That was enough thank you very much! I shouldn’t bitch because many of my friends have been going through non-stop chemo for an extended period of time and I don’t want to be a baby. Everyone says I’m “so strong”, “so courageous”. I hate to be the one to break it to you, but you might as well hear it from me. I AM NOT INVINCIBLE. I am NOT Wonder Woman. I’m just a cancer patient who happened to get very lucky. So lucky you can’t even fathom how lucky I am. Statistically I should have been dead about seven years ago because the median survival rate for someone with cancer as widespread as mine is 2.5 years. I’m over 9 years.
I need support, but sometimes I really don’t need encouragement or anyone telling me that I’m “the strongest person they know”, that “you can do it”, or other ego boosting stuff like that. I’m just like YOU. I’m not made of some invincible material that will stop the cancer from ripping through it and winning the race. I’m doing the best I can with what I’ve been dealt and some days I wallow in my own self pity and sad thoughts about the reality of my life. I feel like I’m standing on the edge of a very high, narrow cliff trying to keep my balance. I’m walking a tight rope made of 8 pound test fishing line that can’t possibly hold me for much longer. Tiny threads of hope that I cling to like string algae clings to everything in my backyard pond, billowing out with each wave. I’m hanging on desperately and not ready to fall into the cancer abyss I was once in. Somehow I got lucky way back then and scratched my way out of it, dragging myself away from the cancer that had taken all ten fingernails and turned them into throbbing blood-filled and useless shards that remained bandaged for well over six months after chemo ended.
I’ve been sensing the dread of a new year for the last several weeks, but even more since I got the news of my new tumor. Some days I feel like I should send out announcement cards proclaiming “I’ve got a new tumor!” with the joy that people have at the arrival of a new baby. Trust me, there’s NO joy in hearing that you’ve got a new tumor. It means that maybe I’m not going to win this contest after all. I’m still in the ring but cancer could get a TKO after all. I’ve had my black eyes, bruises and broken bones over the last 9 years of this boxing match and I know I can take a lot more. I just don’t WANT TO! I’m being selfish and greedy, but I would really like it if the cancer could just stay the way it has been and continue to live WITH me and not against me.
Right now I really would just love to throw myself down on the floor like a two year old and have the biggest temper tantrum ever witnessed on the face of this earth. The frustration builds up inside my control freak mind and many days I wish I could be like a toddler who can’t express themself in words so they just throw themselves down on the floor or stomp their feet and scream their lungs out, inconsolable until it’s all out of their system. The words that keep going through my mind, quite simply are: I DON’T WANT TO!!! I don’t want to go back into chemo. I DON’T WAAAANNNTT TOOOOOO!!
In the meantime I’ve got a couple months of freedom to enjoy life and then there will be more tests to see what’s going on inside this beat-up old cancer carcass. If you think I’m tense and freaked out now - just wait…
Snow or get off the pot!
Slender Blue Beardtongue along Cameron Lake Road, Waterton. 2009
Everywhere I went today, all I heard was “Christmas is one month away from today!”. Sure doesn’t feel like it here in Saskatchewan. Just last week we had record-breaking temperatures for a couple of days, hitting 13 degrees celcius. It’s not that warm today, but it certainly doesn’t feel like the last week of November usually feels on the prairies. It seems to me that once Halloween arrives we have a light blanket of snow and by the last week of November there’s usually a couple inches of snow on the ground. I can’t honestly say I love winter. It is a beautiful time of year, but it’s COLD and miserable some days. Most days I can appreciate the beauty that a sunny winter day brings. The suns rays sparkle off the snow like millions of tiny diamonds and after a foggy night the hoar frost calls me to grab my camera, get outside and take some pictures of winter beauty.
As of today, I can say I’m READY FOR IT TO SNOW! It looks like early spring with everything so gray and brown and the colors are depressing. A dusting of snow would cover up the blah and make it beautiful - and at least seem like Christmas is one month away. I am, however, enjoying getting my Christmas shopping done without having to worry about driving on icy streets, scraping ice and snow off my windshield, and my fresh fruits and veggies getting frostbite on the trip from the store door to the vehicle!
I don’t have much Christmas shopping left, but the Christmas tree and Christmas decorations for the house haven’t been put up yet. The plan is to do that this weekend. After I dust ;)
I’d much rather be waiting for spring to arrive so I can venture out on photography expeditions, enjoy camping, swimming, and lots of lake time. And to be back in shorts and tank tops instead of scarves and gloves (just realized that sounds like I don’t wear anything but scarves and gloves!). I needed to get a little bit of color into my blog today and wildflowers, or any flowers for that matter, are the way to go. I love taking shots of flowers in my garden but I really enjoy taking photos of flowers in the wild. I often come back to the campsite and spend an hour and a half just looking back at the photos on my camera….deleting blurry shots and writing notes in my photo journal as to where all the photos were taken so I’ll remember when it comes time to scrapbook them or just print them out for an album.
The photo at the top of today’s entry was one of many I took of wildflowers on our summer holiday at Waterton International Peace Park. Thanks to my journal entries and a handy reference book I was able to identify most of the wildflowers I took photos of. Today with the gray sky I need to see a little bit of sunshine and summer. If Mother Nature would just bring us some snow I could really get into the decorating spirit, maybe even listen to my extensive collection of Christmas CD’s!
Spring is now only 4-5 months away so I won’t have to wait long for my wildflowers. How long will we have to wait for snow though?!
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- www.TellHER2.ca - A website specially designed for Canadians affected by Her2+ breast cancer. Features Lisa Rendall & four other young Canadian women with Her2+ breast cancer.
