Archive for November, 2013
Yes I do admit that this “job” of mine is very difficult on a daily basis. Saving my ass in a physical sense is just simply getting out of bed on the tough days and getting dressed out of pyjamas would be considered dressing up to go to an interview, then there is the mental part of the project. Escaping into the lives of those people acting on television is much easier than being motivated to smile or see the light in my own life. When I was a student, in primary, secondary and in college, my teachers always rewarded & commented on my perfect attendance. Once I started working out in the real world, again perfect attendance. Even if I felt ill, I would show up to work even if i had to drag my ass all day. my co-workers & employers depended on me and I have never been one to let anyone down intentionally. Now I realize that that worth ethic and serious devotion to my jobs prepared me for this seriously tough job I have at Save My Ass. I will continue to show up to work every day, over-time is never declined and the benefits far out weigh the dreaded difficult tasks I get presented with sometimes. I plan to have perfect attendance here to and to give my very best effort each and every day until I am no longer needed here and I have to move on to the next phase of continued growth and enlightenment. Self employment is the toughest type of job out there. You have only yourself to depend on for your livelihood, but a good entrepreneur learns very quickly that if you surround yourself with other qualified professionals, that know what they’re doing and can mentor you when needed, your security in the future will not be compromised. Just show up for work every day, it’s the only thing I know I can count on myself to do. The pay is worth it.
Today I am wearing a special bandana. It belonged to our fur baby C.J.
It has a balloon pattern on it. She would wear it whenever there was a birthday in our circle of friends and family. Today we honour her birthday with a heavy heart as we miss her so.
Sending you a big kiss on your freckled nose, through the glass on the photo frame C.J.
Happy Birthday in heaven! xo xo
Almost every day, sometimes a few times a day I hear “How can you be so positive?”
I think negativity fuels yuck-ness, it’s junk food for the soul, what good could come from it?
I believe it’s a one-way ticket to shrivel-ville whether you are fighting an incurable disease or simply complaining about the colour of the sky, it just takes up too much energy, it’s draining!
Keeping myself open to absorb everything that makes me glow is what I believe has gifted me yet another day to write about this crazy, unpredictable journey.
Pre-cancer, I was busy. Maybe busy isn’t the best choice of words. I was busy, yes, but more like “distracted”, too wrapped up in trying to make a living that I wasn’t fully enjoying the life I already had. Like most people my head was in the sand thinking it won’t happen to me, I’m young and have my whole life ahead of me. I am going to work my butt off and retire early and young. I was literally delivered a big old whammy. My retirement is not what I had visioned and hoped for. Here is a photo from those very days. I hardly recognize that woman now.
More than ever I ask myself this question. Am I a human living a spiritual experience or am I a spiritual being living a human experience?
I ask this because so much good comes my way each and every day. I try to share all the warm & fuzzy and pay it forward the best I know how. I makes me wonder if heaven really is right here on Earth and the irony and ultimate test is whether we are open enough to realize it? And those that do realize this, do they have an even greater surprise once these bodies we live in deteriorate? If my life ended today, I can honestly say that am fulfilled. Family, friends, co-workers, customers, and even strangers constantly enlighten me.
I think I could write my own “Book of Awesome” if I simply wrote down every happy gift that I receive each day.
Negativity. I see and hear it all the time and it just drives me crazy. Sure we all have bad days and can’t see the forest through the trees. Do you think people might be happier if they focused on the positives in a day instead of getting all worked up about stuff? Just for the heck of it, I wrote up an inventory list of my today’s happy. I felt good this morning, and now by writing things down I feel even better! Try it, you might just get yourself out of a funk!
– A delicious green juice, freshly made by me for breakfast. Love me some green!
– Trying on a pair of jeans from my “maybe someday I will lose weight section of my closet”, and they fit!
– My brother and my nephew picking me up a coffee and inviting me out for dinner with them tonight.
– My sister and two nieces suprising me with a little visit, a green tea and hugs.
– This apple tastes delicious, so crisp and flavourful, my favourite thing about autumn.
– A woman I don’t know asks me “excuse me but is your name Karrie? Forgive me for asking, but you have been battling cancer, right? I want you to know that I pray for you.”
– A neighbour friend asking me to accompany her on Monday to shop at my favourite greenhouse. They have a fabulous Christmas display!
I look forward to the rest of the day! All this happened before noon.
Can you see what being positive does? It opens you to more positivity!
Tomorrow, Thurs, November 7 , an important meeting will take place at Save My Ass Inc., however I will not be in attendance.
A number of cancer specialists consisting of oncologists, radiologists, and surgeons referred to as The Tumor Board, will gather together to discuss complicated cases such as ours. (I guess I should say “mine”, but I have always felt like we are in this together by default)
These medical professionals will collectively brainstorm to determine the best plan for treatment. I am very grateful that we are being discussed. To me it means that my primary oncologist is not afraid to seek second opinions for what she feels is the best plan moving forward. I have always felt that two heads are better than one and if we think about the obvious benefit here, it’s simply that each one of them will bring their past and present successes and failures to the table for discussion. Brainstorming to give me an opportunity to stay here with you and to keep one step ahead of this hijacker inside me. Not many patients get these chances, we are lucky.
This is not the first time that this Tumor Board has discussed us. In fact, I believe it’s the third time. We benefited from one of the new advances in radiation treatment of liver tumours earlier this year which was a direct result of one of these meetings.
I wish I could just make a small appearance at the meeting. I am confident that they all have our best interest at heart, but wouldn’t it be incredible if I could take all of our collective positive energies in that room with me and show them, that we are not weak, we live and breathe happy, focused, determined, energetic and hopeful. We want to live and will do anything to do so.
Although I already know that I ooze soul and spirit and if that alone could cure cancer, I would personally knock on every cancer patient’s door and spread the love and motivation. I am realistic and am constantly reminded that I have no control of when cancer will return again. All I can do is stay positive, nourish my body, mind and spirit and trust in the powers that be.
Last week I learned that the ovarian mass tested positive for malignancy which just confirmed what we already knew before surgery. The good news is that it isn’t a new primary cancer, meaning it isn’t ovarian cancer, but rather a metastatic cancer from the original bowel cancer. The fallopian tubes, uterus, cervix and omentum all were free of any signs of cancer. The mass was contained an successful removed. My bloodwork (CEA level, cancer marker) came in as undetectable levels. So this is where the question arises. Do we knock me down with chemotherapy and radiation as a preventive measure since no signs of cancer are there at the present, or do we wait and see and treat when it returns?
I personally would like to wait until the new year before making any decision, to give my body a couple of months to regenerate strength and to give my head a break. I could possibly be gambling as I have witnessed patients dying within weeks of diagnosis, but I have to trust my gut instinct here, I trust I will be okay. I love feeling good and just want to enjoy it for awhile. I feel better now than I have in a long time, despite this big operation only 6 weeks ago.
I accept each and every day with grace, even the tough days. So with that said, I will be graceful and patient and will calmly wait for a couple of weeks before I learn the results of this meeting.
It was exactly two weeks to the day of my latest operation. Healing was slow but sure. I felt pretty darn good since my abdomen deflated from all of the inflammation from before and after the surgergy. The incision stayed closed. This pleased me immensely as the incisions from the three prior surgeries had all split open after the staples were removed. This resulted in a VON home care nurse coming to the house every day to clean and pack the wound, sometimes for up to a period of three or more weeks. (I’ll skip the yucky details here for your benefit, gross stuff, trust me) Anyway, incision closed, my hemoglobin has been climbing a bit in the right direction, I can successfully roll off of the couch all my myself. What an accomplishment. Rick will no longer tease me that I remind him of a turtle stuck on my back trying to turn upright. He always finds humour in every situation, we are much alike in this aspect and it has helped us get through the dark, tough moments, days, weeks, months, years. I love this about our partnership. Trust me, I do some teasing of my own, in his direction, all with a loving heart.
So… I had a normal, good day on Tue Oct 9, consisting of television and more television. Healing by doing nothing but keeping my brain occupied. I try to watch cooking shows with a pinch of love and laughter like Rachael Ray and of course Ellen DeGeneres. I got re-addicted to my favourite soap-opera, Days of Our Lives that I’ve watched since I was a teen. Watching the drama on screen sure takes me away from real-life drama. I can’t believe I am talking about t.v., but this has been my life for a couple of weeks. Of course my brain does get distracted thinking about this damn cancer and how it keeps hijacking me. I hate it!!! I hate what it does to me, but most of all, I hate what it does to the people I love.
My appetite had been sluggish since I came two weeks ago from the surgery. Just still feeling “full” all over even though my tummy is no longer distended.
I wouldn’t be seeing Rick at all today, a regular work day for him and then he had to travel an hour to London for a work related meeting. Sucks being home alone. It used to be okay when my furry girl was here with me. We talked a lot. Well I did the talking, she did the listening. We had a rhythm. I miss her presence terribly. I have forever lost my second shadow and still trying to find my way.
In the early evening I started getting chills that started from the bottom of my toes all the way up to the top of my head. Weird sensation, not a cold chill, but a tingly chill. This went on for an hour or so, and then the cramping started. I just continued to lay wrapped in my jammies and blanket on the couch, toughing it out hoping it would pass. Rick arrived home from his long day around 10 pm. I went up to bed and tried to sleep off the pains as I usually do because I am not a pill popper. I hate taking medications. Well, another hour passed with much tossing and turning and increased pain. The cramping was getting more intense, directly under my rib cage, upper abdomen, all across the left to right side of my body. It felt as if my insides were a soaking wet towel and it was getting wringed out. I hated to admit it, but I had to listen to my body. The pains took me right back to December 2009. They felt exactly like a bowel obstruction, when I was first diagnosed almost 4 years ago. “Rick, I need to go to the Emergency Dept”, I said. Not the words you want to say to your partner who has worked his ass off all day and night. He got dressed, I stayed in pj’s and away we went. All the way there I am getting more and more angry at cancer, this monster inside me. I am self diagnosing a blockage or an intestinal twist, possibly a complication from the surgery. I know I have not been over-doing things, remember how much t.v. I have been watching. Damn it! A complete hysterectomy, removal of the huge ovarian mass and now I have to deal with more crap? Enough already!!! Give us a break!
Oh shit, the Emergency waiting room is full of people. It’s going to be hours before we are seen. I asked Rick to please go home to get a good night sleep so he could function at work tomorrow. He refused and stayed with me. The triage nurse takes all my vitals and all levels are normal. I explained to her while doubling over with pains that I had a big operation just 2 weeks ago. Since I cannot comfortably sit in an upright position just yet in a normal chair (from the incision pains) , I politely asked for a bed to lie down on until I could be seen by a doctor, realizing that we will be here all night while doctors tend to caring for all the patients ahead of me. “We have no beds available Miss Roy, I am sorry”.
Rick was seated in the waiting room and I was immediatelyguided to a room to have some blood drawn for testing. It makes me nervous now to have blood taken because I have just had 4 transfusions to replenish my inventory, but I know I had to give them a few vials. Blood is truly a gift of life, I want to hold on to every droplet. The chair is so high and if I could even get on it my incision would hurt and my legs wouldn’t touch the floor. I am not a complainer. Here I am, on my own, been to this rodeo before. Dealing with the incision ouches and dealing with the increased cramping. I admit I am miserable, but I am smart and take matters into my own hands. It seemed at least 10 to 15 minutes before a nurse arrived to take my blood. All I could do was lean against the chair. I’m looking all over the room and reading labels on the medical supplies, pretending I am interested and at the same time trying to ignoring my pains. Still no nurse. I can see a stretcher in the back part of the room, partially hidden behind a curtain. I’m a smart girl, a stretcher classifies as a bed as far as I’m concerned, so I help myself. There aren’t any blankets on it, I don’t care if it’s been cleaned or not, I just need to get horizontal. Mounting myself onto it, wasn’t graceful, but I managed on my own. I lay there for another 15 minutes or so and the nurse arrives. She peeks her head in the door and calls “Miss Roy?”. My reply, “yes, I’m over here laying down”. Her eyes are kind and she says “stay put, I can draw your blood from there”. Another earth angel meeting, she is so nice and calm, and I am thinking about all the patients she has yet to deal with tonight. “You don’t look so well, I’m going to find somewhere quiet for you, I just don’t feel right sending you out into the waiting room”.
We were moved to another area in the emergency dept., behind the scenes. It’s quiet and dark, and the nurse directs us to another bed against a wall in a corner. Rick helps me get on to the bed because I am just so sore. I use his body to brace myself so that I can lay down onto my back gracefully inch by inch to avoid more hurt and strain. Rick has been keeping track of the pain situation. He says they are happening every 3 minutes or so and they last about 20 seconds. We have been in this area for approximately a half hour. There is a women in a bed next to me with a curtain separating us. Her companion says repeatedly to her, I love you honey. I take comfort in hearing that. I am always open to love and affection and I enjoy witnessing with sound & sight when others do the same.
Rick still refuses to go home to sleep. I am glad because I am actually feeling worse. “Rick, please find me something real quick because I think I am going to throw up”, I mumble with a very urgent tone. I don’t even think I got the whole sentence out and a bucket appears at my face. I didn’t have enough time to think, oh shit, this is going to hurt! If you have had abdominal surgery, you are well aware that sneezing and coughing are not pleasant, you feel like your guts are going to fall out. Well vomitting is about the last thing you want to do in this scenario. Oh God, I’m miserable and now starting to sweat. It’s still uncomfortable for me to lay on my side but I do the best I can because I do not want to choke on my own vomit. I haven’t been through all this to exit the world this way. What the heck could I possibly be throwing up? All I had was a little applesauce earlier today. Gross!!! I brace one foot against the wall and lean over. Rick is holding my body down by my legs so that I don’t have to strain my abdomen holding myself sideways. He makes himself a good brace between me and me falling off the bed. I think he has 8 arms because he is also handing me cold cloths and holding them on my forehead and another to clean my face. How he doesn’t throw up himself, I have no idea. He is a survivor! This is not our idea of a romantic evening.
It’s now 3:00 a.m. I have seen the doctor and they have given me pain meds and I’m instantly in a happy place, pain free. A nurse accessed the port in my chest and started a fluid drip, which I later learned would relax my intestines to ease the cramping. As Rick and I are telling the doctor my history, stage 4 colon cancer with liver mets, chemo, radiation, two weeks post surgery, staples still in, 4th operation in 3 years. His page of writing filled up quickly. He called my surgeon in London and woke him up, remember it’s 3 am. I can vaguely hear him talking on the phone to my surgeon. “Xray is clear but not ruling out bowel obstruction or surgical complication”, he says. “Ok, we will arrange for an ambulance right away for patient transfer to London”, he orders. Half hour later Rick is on his way home to catch a few hours sleep. I am transferred to a stretcher, and loaded into the back of the ambulance for a bumpy one hour drive. I arrive at hospital and finally I am more comfortable, I have a private room. I had no idea that I would be staying here for an additional 5 days, but so glad that I listened to my body and went to emerg.
Several tests were ordered over the next few days, CT scans, xray, bloodwork. One test was to extract a pocket of fluid that was trapped below my liver and above the kidney. It was suspected that perhaps this might be the problem for the cramping. “Are you sure you are okay with us sticking a large needle into your side under your liver so that we can extract the fluid and test it?”, I am asked. I replied “sure of course, I have been through much worse”. “Do you mind if a student nurse observes the procedure?”, I reply with a yes. Spencer looked very young like a first year med student. “Are you okay with big needles?”, I ask him. He replies with, “I think so”. I am prepped and draped for the harpoon as Rick later called it. I was brought here on a stretcher and the only thing I had to do was to make my way to lay on my side and remain extremely still. The radiologist guided the needle insertion by ultrasound photos on screen. It is important to remain very still as high risk for puncturing nearby parts. “Well, that’s not what I was expecting to see”, the radiologist states. My eyes roll toward my shoulder as she continues “it was a large blood clot sitting in there…. would you like to see it?”. Without hesitation I replied, “yep, sure”. There it was a big old blob of red inside the end of the needle. “Would you please sign this paper authorizing us to test for cancer & other?”
The blood clot was not cancerous, it was suspected to be left there from one of the prior surgeries, most likely the liver resection. After the procedure I had to remain flat on my back for the next 4 hours, my day nurse Tiffany had to come in to check my vitals every 15 minutes for the first 2 hours and then every 30 minutes for the remaining 2 hours. I didn’t realizae that this fluid extraction could potentially be that harmful but I am glad that I agreed to it. Blood clots are scary. During that time my neighbour and friend, Sher D. had surprised me with a visit. Although the pretty yellow rose she brought in was a cheerful gesture that I appreciated, it was her company and conversation that was the best gift. She held a glass of water for me so I could keep my head flat and wrap my lips around the straw. A visit with Sher guarantees that I will smile and of course a few tears are shed too. She always tells me that I am a source of inspiration for her. What an incredible thing to hear, it brings happy tears to my eyes. I pray inside my head that I never have to let anyone down.
The problem turned out to be that my intestines had paralyzed themselves. They just weren’t working and were stalled. This can happen after major trauma from surgery for example. When I was opened up, the surgeon checked over all my “insides” for any other signs of cancer. I guess our bowels don’t like to be man-handled. A few days of just fluid and bed rest did the trick and I was able to go home. A diet of no fiber was prescribed, applesauce, toast, bananas, and crackers were all I could tolerate without pains, which I hated because I most eat veggies and a lot of fiber. I slowly introduced some greens and good back in and now I am doing great.
This post turned out to be much longer and descriptive than I intended, but by keeping things real, it just may help someone else in the future going through something similar.
Now we just have to wait for two weeks to meet with my oncologist for the official results of the testing of the tumour and bloodwork.
The waiting game is tougher than the physical pain. I want to know what my future holds. Chemo or vacation?
These photos are taken after surgery only a few days apart. I am motivated to heal yet again.
Sorry they are not ride side up, I honestly have no patience to figure out how to rotate them, it’s good to stretch your neck anyway 🙂
Photo #1 — Taken the morning after surgery. I look and feel like I was hit by a train. Not sure why my face is swollen, fat nose, coming off the narcotics, I don’t do well with drugs, I prefer to have my wits about me so I come off them cold turkey and just switch to Tylenol for a few days. Sorry Rick, I won’t be providing entertainment with my hallucination stories induced by morphine.
Photo #2 — Sorry it’s kinda gross, bandages are off!! Yucky swollen belly. The staples provide the track for the train that just hit me. Or should I say ” f___ you cancer”? My sister says I should leave a few staples in around my belly button and hang some bling from them. This is the 3rd time doctors have used this scar to cut through, my poor belly button used to be cute, not any more. My youngest niece Kennedy (4 yrs old) saw my yuck. She says to her big sister, “don’t hug Kucka (aka Aunt Karrie) too tight, because she has lines on her tummy”.
Photo #3 — What’s by my neck? That is the port-a-cath that is under my skin that is usually used for chemotherapy treatment. I am getting I.V. fluids through this portal instead. My arm & hand veins don’t always co-operate any more. Thanks Mom and friend Anne for bringing in a little pumpkin decoration cheer. Feeling more like myself this day.