It is with overwhelming sadness, Tina’s family announces her passing on Saturday, August 11th, 2012 at the age of 45 after a 3 ½ year battle with ovarian cancer. She died peacefully, surrounded by her family and friends at her residence. She will be missed by her soul mate and husband of 17 years, Michael and her two loving children, Noah and Tara. She was the cherished daughter of Tom and Rita Thomas of Wallaceburg and daughter-in-law of Johann and Jessie Bratscher of London. She will be sadly missed by her sister and best friend, Angie MacDonald, her husband, Eric, and nephews Aiden, Holden and Ewan, as well as by her sister-in-law, Margaret DeSousa and her husband, Dennis. Tina grew up in Wallaceburg, studied journalism at Carleton University and proudly worked for 9 ½ years at London Life Insurance Company. She believed in and was dedicated to the Run for Ovarian Cancer, supporting ovarian cancer research. Many family and friends supported Tina during her life, and especially during her battle with cancer. This “village” gave her strength, hope, love and support beyond compare. She was grateful to have such amazing people in her life. Friends are invited to visit on Tuesday from 2:00 - 4:00 and 7:00 - 9:00 p.m. at WESTVIEW FUNERAL CHAPEL, 709 Wonderland Road North, London, where Tina’s funeral service will be conducted on Wednesday, August 15th, 2012 at 3:00 p.m. with refreshments and companionship after the service. Cremation will follow and interment at Woodland Cemetery will occur at a later date. In lieu of flowers, Tina asks for donations to the London Health Sciences Foundation – Translational Ovarian Cancer Research Group.
Tina passed away this afternoon surrounded by friends and family. She was an amazing, funny, true to her values, and very talented woman. She touched so many people around the world with her blog. She said she was leaving an imperfect world for a perfect world. Her faith was strong and that showed through in these final weeks. The lessons we have learned from her will forever be written down so that we can all look back and see how short life is and to live life to the fullest. Tara and Noah have so much to read as they grow older looking back at these posts. I have lost my best friend, my T, my true companion.
Thank you everyone for all of your responses to her blogs and emails, they mean so much to our family.
Love you forever Tina
Just because I'm dying doesn't mean I'm dead yet. Not that I've been doing all kinds of exciting things, but they've been enjoyable non-the-less.
I've been doing lots of visiting (don't stop or feel I'm getting too tired to receive visitors). I love seeing everyone, visiting and reminiscing.
Yesterday I went to my sister's again to swim in her pool and lounge around on her deck. Unfortunately, the wind was just a little too nippy and I decided to forego the pool. But I had a lovely visit with my sister, parents and cousins. If I continue to feel well and manage to keep a drainage port out of my belly, trips to my sister's may be in my weekly plans. Hopefully next time the weather will be hot, hot, hot and I'll enjoy dipping in the refreshing waters.
As for a health update, I feel about the same, if not a bit better. I've had more bowel movements and managed to eat more food. So that's all good. I am getting used to the Fentanyl patches slowly releasing their pain meds into my system because I don't seem as dyslexic and slow as before, both in writing and speaking.
Yesterday though I fell down. My legs got weak, gave out from under me and I went down on my sister's pool deck. It was extremely embarassing and made me cry. I've noticed I've been getting weaker over the past few weeks and Michael says I'm unsteady on my feet; but to collapse unexpectedly shocked me. It's a sign to me the disease is taking over in small incremements.
I'm also still sleeping a lot.
I'm also still struggling with how to create memorable moments with my kids. At 14, Noah wants to play on his computer and hang out with his friends. Tara, at almost 11, wants to play with friends. These are not the ages where it's cool to hang out with your parents. I want to do things with them, but struggle with what will be fun, what will they remember and what won't be lame. So we're talking about a couple of events we can do with the kids. Of course, heading to the beach and my sister's, the drive, the listening to stories in the car and the conversations are all little memories.
I guess little memories add up to the big memories that contribute to making a life special. Remember that as you go about your chores and activities today. It's all part of this big, wonderful event called life.
I think this is the longest period of time I've gone without writing a blog. I've been try to sort my scattered thoughts, trying to make sense of the news I've been given and I can't. I feel discombobulated. It all still feels surreal. I can't possible be dying. How can any of this be real?
And I feel like a robot because I'm not crying. Sure, I have these little crying spurts every once in a while, but after a few seconds they're done. I should be wailing against the world and the injustice of it all. But I can't seem to dredge them up from my emotional reservoirs. I feel like a freak.
I've also been sleeping A LOT. I don't think I've slept this much since those hearty party days back in unversity where noon was a common time to rise and shine. Of course, during those days, I'd stumble into bed around 4 a.m., not 8 or 9 p.m. The cancer must be taking a lot out of me. It must be sucking up such incredible energy reserves that I have little for anything else.
Although I have managed to make some memories over the past couple of days. On Friday, I went to my sister's and lounged in her pool for a good hour. It felt awesome to have cool water wash over my skin. I also got to visit with aunts, parents, my sister and brother-in-law and nephews during the very relaxing afternoon.
Yesterday, I made it to Port Franks (aka the spa). We went down to the beach and I managed to immerse myself in the lake that makes me so happy. I'm so glad we went to spend the afternoon at the beach and hang out with Diane and Pete.
Today I've had visitors, which always make me smile. It's wonderful to be loved by some awesome people. I am a very, very fortunate woman.
A few recent observations I thought I'd mention:
I managed two bowel movements over the past two days so I'm trying to eat small amounts of food again to see how I manage. A scrambled egg and a piece of toast comprised my lunch and half an English muffin with some brie cheese made a tasty supper. I am already getting sick of the dessert-like Boost and Ensure supplements so if I can eat real foods every once in a while, that would make me happy.
I feel slightly groggy/foggy/tired much of the time.
When I type on my BlackBerry or computer, I make far more mistakes than I used to. It's almost as if I'm dyslexic sometimes.
I speak, move and think much slower than I used to, as well. I'm also very precise like when you're slightly inebriated but don't want anyone to know it (but everyone does anyway).
Perhaps some of these oddities can be written off on the Fentanyl patch I've been wearing since I've been home. Michael slapped one on me shortly after I walked in the door and I'm been sporting the slow-release pain medication patches since Wednesday.
I've also accomplished a couple of extra preparatory tasks since coming home from the hospital. On Thursday, Michael and I, with the help of our good friend, Jack, picked out a plot and grave stone. That adds one more check mark to our to do-list; something Michael doesn't have to do after I die.
We've also met with a spiritual counsellor to help plan part of my funeral. He'll be the person who will be the master of ceremonies, if you will, on the big day. I don't have a direct affilitation with a church so having this role filled has always been in the back of my mind, but the recent speeding up of timelines had me a little freaked out.
I'm also showing Michael how to do some of the tasks I always did, like paying bills, filing benefits, checking accounts online. Like any marriage, we divided up the tasks and ran with them. Now, sadly, he's going to have to learn to do them all one. That makes me feel very, very sad.
Thinking about all the experiences my kids are doing to have without me also washes me with sadness. I won't be there for Tara's first period or her grade 8 graduation. I won't be present to watch either of my kids go on their first dates, fall in/out of love for the first time, graduate, make career choices, choose life partners/get married and maybe have children. That breaks my heart.
It also breaks my heart that Michael won't have anyone with whom to share these milestones. (In all honesty, he may, but it makes me so jealous to think of him with another woman. But of course, I don't want him to be alone or lonely.)
So I've been slowly contemplating lately what the end will be like. I ask almost every doctor, palliative care worker, nurse, etc. that I encounter. I want to die at home but I don't want it to be ugly and traumatize the kids. I don't want me to be incredibly sick with lots of clean up for my family. The answers I've received is that it shouldn't be anything like that, but a more peaceful process with me slowly getting sleepier and sleepier, and drifting off. I may have some confusion or perhaps a coma-like state at the end but I shouldn't be sick and messy everywhere. And that's what I want. Now if circumstances change and things start to get ugly where I need full-time nursing care, I have no problems going into a Palliative Care Unit at one of the hospitals.
I know my last wishes for a home death is going to require a lot of sacrifice on the part of my family and friends because someone will need to be with me at all times. But I've been assured, if that's what I want, Michael will do everything in his power to make it happen. He's such an amazing caregiver and I know he's going to be there right until the end.
People should not have to spend this much time thinking about the end of their days. But as Michael says, it could be worse. I could have been snatched from him in a car accident and he'd never had the chance to say goodbye or reminisce about all the good times we've had. And there are far worse ways to die. So in some ways, I consider myself lucky. I've lived a good life, surrounded by amazing people. For what more could I ask?
Correction: This is the hardest blog I've ever had to write.
Dr. W came in today and I found out there's nothing more we can do except make me comfortable. I'm not strong enough for the chemo and it wouldn't do anything to improve the quality and quantity of my life. It would make what little time I have left miserable - and that's not worth it.
I'm now experiencing some nausea and pain because of the blockage in my bowel. Food and water do not have anywhere to go so I'm vomiting.
I don't know what to do or say right now. I'm in shock. I'm exhausted physically and mentally. I can't even cry. I'm numb. So if you come visit me, I will not be normal. This is not normal. This is a completely messed up situation and so fucking unfair.
I want to thank everyone for all the emails, comments and Facebook messages, and I was responding to each one individually, but I can't do that any more. I'm sorry. I do appreciate all the compliments, wonderful comments, good wishes and prayers. They mean more than you could possibly know.
So I'm going to take a few days without being hooked up to anything to enjoy the hot tub, swimming and the beach one last time. I'm going to fit what I can in the next few days because I will probably need to be tether to an IV pole and an ascities draining bag very soon.
I don't have long. That breaks my heart because I'll soon be leaving the wonderful life I've built for myself. It may not be the perfection that is heaven, but it's pretty darn good to me.
Do me a favour today, tell someone special you love them, eat something especially good and try to build a lasting memory. Do it for me.
This is the most difficult blog I've had to write because this is the one in which I have to tell you I'm terminal and there may not be anything left to do except wait.
There is a loop in my small bowel, which is increasing in size and a narrowing that sometimes closes up causing an obstruction. That's why I was throwing up. The food had no where to go and it had to come up.
If they can get me to tolerate full fluids (which I am), I can get full nutrition through things like Ensure and Boost and we may be able to consider some chemotherapy. We'd be pulling the one we were saving in our back pocket (and it's time to go to the back pocket) and trying that - Carboplatin. But the problem with that particular chemo is it can compromise my immune system. If that happens, that could hasten death through pneumonia or some other infection.
So the decision whether to try another chemo will be based on whether it will improve the quality and quantity of my life. If it won't, there's no sense in trying it. I know chemo decreases the quality of life, but if it gives me more quality time afterwards, it may be worth it.
But we're taking it day by day and seeing how I tolerate the food I'm being given. Right now I'm on full fluids, which means cream soups, pudding, ice cream, milk, as well as clear fluids. It's going well with no problems. These are the fluids that can give me the nutrition I need to tolerate chemo. And we'll talk about chemotherapy at my doctor's appointment with Dr. W on Tuesday.
So long story short, my friends, I have weeks to months to live. I hope they're wrong and I get a year, but I have to live like I don't have long.
I'm telling you all this to prepare you for that blog where Michael writes I died and to give you a chance to adjust and contact me or see me if you want. Tell me today how you feel because I may not be around tomorrow.
I want to thank you all for being my friends, all your support and love, and for following my journey as it unfolded (and continues to do so). You've been an amazing village and I couldn't have done this without you all. So a big thank you, and lots and lots of love.
It looks as though I will be appearing at the Hospital Victoria throughout the entire week. The situation seems to be more serious than originally thought.
The goal of the doctors right now is to stop the vomiting and get nutrition into me. They're trying combinations of drugs to figure it out. I'm back on no food and limited clear fluids. If they can get me back on taking nutrition, we're going to start chemotherapy again. My CA-125 doubled during my brief chemo vacation.
My goal is to convince my body to cooperate and fight this fucking cancer with everything I have in me.
If you've got some spare prayers or good karma, I could really use some directed my way right now.
Well, bad news. I most likely won't be going home today. I started throwing up again last night. Dinner came out in a torrential outburst about 9:30 last night after I suffered through some severe cramping. The prune juice, 1/2 muffin and 1/2 coffee that comprised my breakfast also made it's way back up this morning. When the doc came in and asked, "How ya doing?" my reply was, "Not good."
So after initially being told I was going to have another x-ray, I ended up having a CT scan. I had to drink a bunch of that Tang flavoured radioactive juice (not so pleasant on a queasy tummy) and get three or four scans done in the CT suite. Now, I'm back in my room.
I managed to slurp up the broccoli soup I ordered as part of my lunch, but I couldn't face the ginger beef stir fry. I'm trying to be careful and cautious so I don't see my food again. That's not pleasant. I'm also trying to see what I can tolerate.
I strongly encouraged a poop out of my body last night and experienced a bit of diarrhea this morning. But with the vomiting, I don't want to be going anywhere. I want them to figure this out before they ship me home. I'd rather be here where they can run tests and provide answers than lay moaning in my bed wondering what's up.
So here I sit, waiting to see how my body tolerates my soup and waiting for more poop.
I guess there are worse places to be on a semi-rainy Tuesday morning.
If I poop today and poop tomorrow, I can go home tomorrow. So far no luck. The doc prescribed some strong laxatives (one tasted like chalk - Milk of Magnesia). My thought was no food, no poop. So I asked about going on a regular diet and I got real food for lunch. I had this really good vegetable soup and some chicken pasta stew, which was quite tasty too. Now I wait.
I feel pretty good; better than I have in days. So I'm in the right place. I'm on broad spectrum antibiotics (just in case), antacids, steroids and a motility drug to keep things moving and saline by IV. I also get a shot for the nausea. Then there's the laxatives, my usual antidepressant and the lorazepam by pill. I'm well hydrated and well medicated.
So we'll see how my lunch sits with me. I've had lots of visitors and expect more today. I also have my iPad, computer, cell phone, a book and a couple of crossword puzzles, so I'm not bored. And I may even go for a walk today (helps with the motility too) and enjoy the hot day.
According to my doc, my x-rays showed my bowel was constricted and then it righted itself. No known reason why (I don't think he knows).
Strangely enough, I'm not that worked up that I'm here. I wasn't feeling well and what better place to be than at the hospital where they can deal with your symptoms. If something goes wrong and I start vomiting again, they can run more tests and check me out more thoroughly.
But I am praying for poop. If you can't stop laughing, perhaps you could say a little prayer with me too.
Wow! It's amazing the changes a few days can make. A lot has happened since I blogged on Thursday. I'm sitting here on this Sunday morning of Canada Day from my hospital bed on the oncology ward. Hospital bed? What!? I know, I know but the story starts back on Friday morning.
I woke feeling pretty bloated with ascities. I figured I should call for a paracentesis appointment, figuring I'd get in on Tuesday, after the long weekend. Within about 30 minutes, my oncology nurse Bonnie called asking if I could be there in half an hour. Of course, I jumped at the chance for relief and was there in the allotted time.
Last time I had paracentesis, the interventional radiologist said my abdomen wasn't that blocked and complicated, and the draining should be possible in the cancer centre. Fair enough. But the only doctor available was the doctor with whom I had a very bad experience before. I bit my lip and agreed to try his technique again. And, I have to say, it went rather smoothly with 3.6 L being drained from my belly. Using my usual comparison technique, that would be like strapping two 2L bottles of Coke to your abdomen (minus a great big glass from one of the bottles).
So I went home Friday night, enjoyed the pleasure of a visit from two good friends and indulged in a smorgasboard of munchies. They were delicious and my tummy was less squished so I went a bit overboard. As a result, my tummy hurt afterwards.
Saturday morning, it still hurt. Then I started throwing up; three times before 10:30 a.m. After last weekend where I had two days of not keeping everything down and the loss of all the fluid the day before I knew I was at risk of becoming dehydrated. So I headed to Emergency with my sore, nauseous tummy.
They got me in a stretcher right away but it took hours to see a doctor. Then Michael happened to run into the same doctor who did the paracentesis on Friday to ask him about my symptoms and he came into the ER and took over my case. He's taking good care of me.
So last night I had x-rays and they're being repeated again today to see if the slight bowel obstruction (I think) is gone/better (This doc has a strong African accent and is sometimes hard to understand). In fact, I'm just waiting for the porter to come and take me down to x-ray.
I'm back and my doc already read my x-ray (almost instantaneously) and it (whatever it is he was looking at) is better. So I've been okayed for clear liquids and I'm sipping on my diet ginger ale as I write. Since it's noon, no lunch for me (no time to get it organized), but I'll get some broth and jello for dinner. ("Yum," she says sarcastically). It's clear fluids first to see how I tolerate them, and then I'll move onto solids.
I have no idea how long I'll be in here, but this is the second long weekend in less than a year I'm spending in the hospital. I'm missing my sister-in-law's birthday and the cake that accompanies it.
But don't feel too sorry for me, I've got good care and Michael's here to keep me company.
With the ascities building, the vomiting happening on an almost daily basis, my general slower pace and talk about Palliative Care, Michael and I have had conversations that maybe I'm on the road to the end. It may be a long, windy road full of wonderful surprises along the way, but it may be shorter than we want or hope. That's the bitch of this disease.
I still haven't seen the official report from my CT scan. Has the disease spread anywhere new and undesirable? I want to know how much the disease has shrunk. I want to know Dr W's opinion about where we go after the chemo holiday and how long he expects it to potentially be.
But it's scary being on the road to the end. Michael says he sees me dying a little bit every day, and as a result he dies a little bit every day too. He's noticed changes in me over the last month or so. I'm slower, I react less quickly, my eyes look different, I talk slower. Is it the disease causing these other symptoms or the residue from the cancer. It's hard to tell but it's also hard to take.
I've always been a go-getter, let's get her done kind of girl and now I can't do that. I can't even type as fast on my blackberry or my keyboard. I make more mistakes. It's as though I'm moving in slow motion while the world around me continues at it's usual (quick) pace.
I'm on the road, but let's hope this road has lots of ups on it and goes on for miles and miles.
It's hard to know when you have cancer whether a sickness is due to cancer, chemo or some other virus that anyone on the street could have given you. I had one of those situations this weekend.
It started Thursday night at 11:30 when I woke up with a sore stomach. I tried to ignore it and go back to sleep, but with no luck. I tried Gaviscon. I tried walking the house to get the gas moving and out. Finally at 5 a.m., I threw up. I then slept for a couple of hours before waking up to throw up again. I knew I'd dehydrate myself so I tried drinking water . . . and threw it up.
Friday afternoon, I called the cancer centre for advice, which consisted of drink Gatorade (even if it's a few sips every 15 minutes), make sure I urinate ever 10 hours and the colour isn't too dark., and if it gets worse, to head to Emergency on the weekend.
Saturday morning was good. I managed a piece of toast and a bottle of Gatorade, but the afternoon brought the barrage of vomiting again. I promised myself if Sunday was equally bad, I was heading to Emerg.
But yesterday, I only vomited once so no trip to the hospital for me.
I've surveyed my Facebook friends and some of them said they've had this virus that lasts a couple of days and causes severe vomiting. That makes me feel better because then I know it's something "normal" and not cancer related.
I know my stomach is small because of the ascities building up in my abdomen again, which means I don't have room for anything but small quantities of food or drink. That could add to the number of times I throw up because I just don't have the room to hold anything. And getting calories for energy has become a challenge since staying hydrated and eating require different things. I'm trying to eat toast and drink Boost/Ensure, but even that has been challenging to keep down.
So today I've consumed an Ensure and am working on a Gatorade with hopes they both stay down. And I'm going to have to do something about this damn ascities again soon. Then, just maybe, I'll start to feel better, which is the whole point of my chemo vacation.
I've been on chemotherapy treatment for nine months straight. Dr. W says that's long enough and I need a chemo holiday. Now this holiday isn't like one of those fun ones where you stuff your bathing suit (or snow pants, as your preferences dictate) in your suitcase and head for adventure. This simply means I won't take treatment for somewhere probably between one and three months.
The objective is to measure if there is an improvement in some of the symptoms I've been experiencing: tiredness, weakness, shortness of breath, etc. If these things improve during the holiday, I'll get stronger and their culprit was the chemotherapy. However, if thing get worse, the cancer itself is causing the problems.
I was disappointed he didn't have the final report on my CT scan from last Friday. It's been written and is lost in the hospital computer system. Dr. W did a read of the images and said that while there seems to be more ascities, the disease around the stomach and other areas of my abdomen seem to be improved. So that's good news - although I would have liked to have seen the official report read by the radiologist.
So during the holiday, I'll continue to fill with ascities and need to go in for taps periodically. I'll visit Dr. W every three to four weeks to see how I'm feeling and monitor my CA-125 levels. I also have the option to call him if something doesn't feel or seem right.
We also talked about a couple of different options for treatment after my holiday. One involves an chemo pill I'd take every day and the other is a different type of chemo I'd take once a day for five days every three weeks. We'd talk more about these different treatments and what seems right for me when the time comes.
So there are options. He assured me he'd let me know when there were no more treatment options.
The goal here is to preserve (or reachieve) quality of life. I need to be able to enjoy the time I do have left on this earth. And speaking of which, I may just stuff a swimsuit in a suitcase and take a real vacation during my chemo holiday. Once I get some strength back and can get through the day without a nap or two, I should be able to enjoy one.
I know, I know, it's been a while since I've written. Sometimes I have nothing profound or interesting to say. But I thought I'd better get on an give you a brief update as to what's been happening.
After my paracentesis (the abdominal draining) my abs were sore for days. A thousand abdominal crunches of pain made coughing, reaching or bending a challenge. That's mostly gone now except for a pesky spot right below my left rib. But I think there's some cancer lurking there so it may be more related to that than to the actual draining procedure.
Friday brought my CT scan. I drank all the peach-flavoured radioactive juice, ate a not-so-great-tasting, pudding-like substance so they could examine in esophagus and inserted something (I didn't ask a lot of details) into my rectum to examine my bowels. I was literally full of substances designed to light me up like a Christmas tree as I was manoeuvered through the CT tube. Of course I also had to have the IV inserted into my arm so they could shoot some more radioactive dye through my veins part way through the procedure.
As an aside, I have a pet peeve. I get this port-a-cath inserted, which is state of the art and designed to handle any type of procedure, whether it's taking blood out of me or inserting various fluids into me for tests, transfusions, etc. Yet, no one except the folks in the cancer clinic know how to use them. When I asked during the CT scan, the technican assured me the radioactive dye could go in through the port, but they hadn't been trained on them. My home care nurse says she's never been trained on them. Why have this device that makes a patient's life less painful and complicated, and then don't train anyone on it. Sheesh.
After a week of tests, my family and I had a weekend of fun. We left Saturday morning and went to the Royal Ontario Museum (ROM) to take in the exhibits. I brought a wheelchair so I wouldn't hamper their progress and, as a result, I was wheeled about like a queen. Then we spent the night in Toronto, saw a greenhouse (that was right across from our hotel), visited with some friends in Oakville and then caught a bit of a concert in Burlington before making out way home. Needless to say, a restless sleep in the hotel room and all the activity had me pretty exhausted by Sunday night. So much so, I slept in until 10:30 a.m. on Monday morning. I can't remember the last time I did that. (And I still needed a nap during the day.)
Today I'm doing some much-needed catching up on paperwork and phone calls. I also have an appointment with the spiritual care worker at the cancer centre. I do believe my spirit needs some care and some guidance as I travel down this journey. This woman has been down this road with many, many individuals and couples who've been in our position. It doesn't hurt to gleen what we can from her experience.
As with every part of this cancer journey, I'm trying to sort through the advice to make the best decisions for me. Do I choose a special diet? Do I drink a "magic" tea? Do I use acupuncture, reiki and therapeutic touch? Do I stay on this particular chemo? Do I take a holiday from chemo? Do I involve palliative care at this point? Do I still have ways left to fight or should I just enjoy the time I have left? It's all so confusing - and all so life altering. Some of these decisions ARE a matter of life and death. It gives a woman a lot to think about.
Yesterday Dr. Z drained 4.4L of ascities from my abdomen. In keeping with my Coke analogy, that's the equivalent of two 2L bottles and a big, thirst-quenching glass of the fizzy liquid that came out of my belly. I got the feeling he could have gotten more, because it was still flowing pretty good, but opted to stop where he did.
The procedure itself was relatively pain free. He's a skilled man with the needle. But starting last night and into today, I feel as though I've done an gut-crunching abs workout for about an hour straight. Coughing even hurts.
That's why when I threw up the first meal I've had in days during the middle of the night. I was moaning. Then not only did I throw up water this morning, I had diarrhea to boot (sharts while vomitting, not a pretty picture). So I popped some Immodium and drank some sport drink (praying it would stay down) and I think I have the situation under control.
After the paracentesis yesterday, I had an impromptu appointment with Dr. W. We talked about the fact I've been having chemo for nine month straight now and it's taking its toll. I am weak, shaky and tired, all the time. I sleep way more than I should. I'm not capable of taking care of my house and my family. I am not enjoying life.
I have a CT scan on Friday so we can take a look see at what's happening in my abdomen. If we've shrunk the tumours and they seem stable, we'll talk about stopping chemo for a month or two. He said it could be the chemo or it could be the cancer that's making me feel so shitty. He can take away the chemo to see what happens, he can't take away the cancer (darn). Then when I gain some of my strength back, we'll talk about treatment again.
Yesterday was the first time he mentioned palliative care. He would like me to start working with the Palliative Care workers because he finds the transition works better if they're brought in early. "Over time, chemo become less important and palliative care become more important," he added. "Holy crap." my brain said.
I know this is a terminal disease. There is no cure and diagnosis at stage IIIC is very bad. I am on the road to death but no one knows how long the road is or where it ends. But, I have to admit I wasn't quite prepared to start talking palliative care. Although he did say the end could be years down the road. Years sounds good to me.
Raising the whole subject, along with not feeling well, has me feeling a bit weepy this afternoon. I'm tired of being sick and tired. I feel bad for Michael (who takes care of me, and will continue to do so) and my kids because I'm not the bubbly, energetic wife and mom I once was. I feel bad for my friends who get email greetings but very little Tina time because I just don't have the energy.
Hopefully the chemo break will bring about a little bit more of the old Tina with a nice jolt of energy and interest in the world around her.
I called first thing this morning to see about getting my paracentesis performed earlier than Wednesday. My bloating is extremely uncomfortable and some days, I'm having a hard time keeping fluids down, let alone food.
After waiting a couple hours for the phone call, I learned the best the cancer clinic can do is tomorrow morning. Looking on the bright side, that's 24 hours earlier to feel relief from this intense bloating. So I'll take it. Hopefully the interventional radiologist will be able to get a whole bunch of fluid to make its way out of my abdomen so I can feel better and more comfortable. Having the ability to enjoy food would be an added bonus.
On the weekend, I managed to find some relief in the big blow-up pool we have in our back yard. It felt nice to have the water support the weight of the fluid for a while and the cooling waters was an antidote to the warm weather.
Overall, though I feel tired. I'm sure it's my body fighting the cancer, responding to the chemo and protesting from carrying around all the extra weight from the fluid. I'm sure I'm also still feeling some depression, despite the little white pills I pop every night before I crawl into bed. As a result, naps are still my go-to move, even though the weather is nice. It's hard to enjoy the weather when you're feeling rather low.
But I'll do the best I can and hopefully after tomorrow, I'll be a new(er) woman (not putting too much pressure on the paracentesis, am I?)
Yesterday was a bad day. I couldn't seem to drag myself out of bed and I spent practically the whole day there thinking, texting or sleeping. It's been a rough few days, exacerbated by some personal stuff that's been happening in my life. So I'm sinking even deeper into the basement of post-chemo side effects.
I'm hoping today will be better but because of the ascities, I'm now throwing up a single cup of coffee. When the clinic called me yesterday to tell me about my appointment for draining next Wednesday, I should have said, "That's too far away. My body isn't keeping anything down."
I will call on Monday to see if I can get an earlier appointment, but the chances are probably slim. I could go to Emergency (and will if it gets too bad), but the chances of getting a butcher with the needle increase significantly if I don't go through interventional radiology. So I'll manage the best I can, drink Boost and Ensure, and sip away at my water with hopes I'll stay hydrated. That may be the reason I have to go to Emerg in the end, dehydration.
I'm so tired of being sick. Last weekend it was low red blood cells, this week it was post-chemo side effects and now it's my roly, poly fluid-filled ascities belly. I'm near the breaking point again. Can't I just get some relief?
I suspect today is the day I'll start heading to the basement. It's the typical procedure, and I'll spend the day trying to read, thinking, sleeping and laying around. I know it's a waste of a beautiful day, but it's how I cope. Today, tomorrow and part of Saturday will be my bad days this week because of the switch to chemo Monday instead of chemo Friday.
Luckily, I have the support of my family who allows me the time and space I need to cope. I also have a lot swirling around in my mind these days, which doesn't help the depression situation any better. But I'll do what I have to do and get through this.
I haven't heard from Dr. W's office yet about a change in plan of attack so I assume we're going with the three week schedule (until I hear otherwise). I also haven't received a phone call about my paracentesis (fluid draining) process. Hopefully today I'll hear from both of them so I can move forward.
Two steps forward, one step back. That's the way it feels these days. But hopefully, those forward steps will get me to I want and need to be - remission.
Wish me luck over the next few days. I have a feeling I'm going to need it.
Everything went fine at chemo yesterday. I was in relatively on time and out by 3 p.m. I got the big dose of taxol and we'll see how it goes with the side effects over the next few days.
I ran into B, my chemo nurse and showed her my big, round ascities belly. She agreed it was at the point where paracentisis would be a good idea. So she's putting in the request, which usually takes a few days because it's with the interventional radiology department instead of with a doctor in the usual clinic area. But my belly is full of scar tissue and pockets, and therefore the docs need to see exactly where they're going with the ultrasound to get as much fluid out as possible.
I found out yesterday my CA-125 is 64. Up slightly from 60, but minor fluctuations apparently happen. So while it's not moving in a downward motion I want, I'm stable at a decent number. I get a CT scan next Friday to see what's going on in my abdomen. I'm anxious to hear the results of that.
I must have been tired yesterday because despite all the noise and activity of the chemo suite, I actually managed to sleep during treatment yesterday. And then my family let me sleep in this morning and I didn't arise until 10:15 a.m. (I can't remember the last time I slept that late!) It must have been all the excitement and lack of sleep during the weekend that left me exhaused. Despite all the sleep, that's the one side effect I feel right now - tiredness.
I'm also vomiting a lot more these days. Probably from the ascities shrinking my belly. I think I may have to switch some of my meals to Boost or Ensure instead of food - especially dinner - to see if I can prevent the middle-of-the-night vomiting trips to the bathroom. Hopefully the paracentesis and the chemo will shrink the fluid so the throwing up side effect goes away again. I was doing great for the last month or so and I'd love to get rid of that side effect again.
By the way, the port-a-cath I had inserted a couple of months ago works great. It's easy to access, relatively pain free and I have the freedom to go swimming, go in the hot tub, bath, etc. I've had some problems with infection and cysts around the insertion site, but that seems to be clearing up now too. One of the chemo nurses said he hated my PICC line and loves that I now have a port. Despite the fact it sticks out slightly and I still have scarring, I love my port too.
So today should be a good day for me before I decend into the basement. I'll see what I can accomplish between naps (yes, I'm still going to need naps because it's the one consistent side effect and I'm not sure my hemoglobin has risen up anywhere near the normal level). If I can plan dinner and make a few phone calls, I'll consider today a success.
Ironically, just as I start to feel perkier from the blood transfusion, I'm going to get a big dose of chemotherapy to knock me back on my butt. Today is chemo day, and while I'm more energetic and less weak, I'm still tired. Perhaps it was all the excitement from the weekend.
It was Michael's high school reunion, and while he did most of the activities with a friend who arrived from British Columbia, I did go to the dance on Saturday night. It was a lot of talking and not much dancing because the entertainment was provided with a big-band type of band. Not exactly what you remember from high school when you went there in the late 70s and early 80s.
I also didn't sleep well this weekend, so I have a hangover feeling about me (despite not allowing a drop of the alcoholic stuff to pass my lips). Luckily, I'll most likely get a bed for chemo today and I may be able to doze a bit during treatment.
I'm reluctant to get chemo again because I'm feeling better, but I'm also anxiously anticipating it because I'm hoping it will calm down the ascities that's filling my belly and causing me to throw up. Not a great set of circumstances. If the chemo doesn't relieve the problem, I'll have to phone and schedule paracentesis, the belly draining procedure.
So it's going to be a long day in the chemo suite; approximately six hours from start to finish. But Michael's coming with me and naps will help fill the time. Fingers crossed all goes smoothly.
Now I know why I feel so tired, shaky and weak (basically like crap), my hemoglobin is only 76. Normal is between 120 and 140. That's bad enough they scheduled me for a blood transfusion tomorrow. I'll get two units of donated blood (hopefully from someone with really high hemoglobin) over three hours. That should perk me up.
As for the rest of the answers, I don't have them because Dr. W is at a conference until mid next week. Dr. S said I may have to go back to the weekly chemo schedule to combat the ascities. That would suck, but if it's what I've got to do to beat back this beast called cancer, it's what I've got to do.
So transfusion tomorrow and chemo on Monday. Michael's high school reunion this weekend. Maybe the blood will boost my energy levels enough I can actually dance a little bit tomorrow night. No promises (because right now I couldn't dance if my life depended on it), but we'll see.
It's appointment day. Time to ask what the heck is going on and figure out what I need to do about it. I'm so disappointed the ascities has returned with my new treatment schedule. I really want to stay on the once-every-three-weeks timetable. But I don't think I'll be able to if it means I bloat up every three weeks.
I don't know what that means. I don't know my options. I guess I'll find out today.
What really confuses me is that my CA-125 is 60 (yay!) but I've got a build up of ascities. That doesn't make sense to me. Unfortunately, the fluid is pressing on my stomach, preventing eating and causing vomiting again.
I'm also really tired all the time. Do I have low blood counts or are my vitamin levels off? I may need to ask Dr. W to run some tests. I should feel better during week three after chemo.
I have my next chemo on Monday instead of Friday because Michael's high school reunion is this weekend and I want to be able to go to that. So I bumped the timetable a little bit.
So I'll provide all the information, ask all the questions and see what plan my doc recommends. I'm nervous about the appointment. But I have to face the music and figure out what's going on.
A couple of weeks ago, I read a blog by a woman who was mourning her life before cancer (I can't find the blog any more or I'd link to it). That thought has raced around in my head since I read her insights and realized I too am mourning old Tina.
I miss her: The woman who:
Had ambition, gumption, energy, interest
Could still do cartwheels on the front lawn with her daughter. (Now I'm afraid to try for fear of breaking my nose.)
Would inwardly squeal with delight over small victories or joys. (Maybe I just haven't found any of those lately.)
Wasn't afraid every time her body twitched, changed, bloated or hurt
Didn't need to nap every day
Didn't think about dying
Was physically strong. (I used to be able to do full plank push ups and now I can't even do the ones from my knees.)
Was mentally strong
Contributed to society (by working at a job I liked)
Socialized with friends and could stay up past 9 p.m.
Could make longer-term plans for vacations or weekends or even dinners
Didn't have to plan life around a chemo schedule and the days of bad side effects
I mostly miss the woman who didn't have to think about cancer and worry about what it's doing to her body, her life, her family and her friends. No one really close to me had the disease so it wasn't part of my normal life. Now it IS my normal life. It affects everything I do, plan, think or say. Especially right now when I'm in the middle of fighting it again. (It has been different when I've been in remission.)
I miss before cancer Tina. She used to skip, laugh, smile and be an energetic woman. Her biggest worries were projects at work and her son's behavioural issues. She was a much more enjoyable person. Damn cancer.
I seem to be bloated and filling up with ascities again. My belly seems bigger and my stomach's capacity to eat and drink seems smaller. My mind is racing with fear the fluid is coming back. That means the treatment isn't working like it should be. The chemo should be shrinking the tumours and shutting off their capacity to produce fluid.
My CA-125 was 60! I've been in treatment almost constantly over the past few months (it's only these last couple of weeks when I've had a break). WTF!?
I don't understand. I'll be looking to Dr. W for answers when I see him on Thursday.
But for now I will try not to worry too much and enjoy this last week before I have chemo again.
Soft sheets, a fluffy pillow and a quiet room. Those are the ingredients for a good nap. Oh, and a mind that will shut down and let my body drift off into slumberland. Sometimes these factors combine perfectly and I get some much-needed shut eye and other times I toss and turn, with no rejeuvenating sleep reward.
I've become a big fan of the nap. Mostly because I need them so desperately, at least at the present time. If I don't get some rest in the middle of the day, I'm dragging my butt by about 4 p.m. and, yawning and nodding off by around 7 p.m. It's quite pathetic.
I never used to nap. In fact, when I worked midnights and had to sleep during the day, I was never a fan. I felt (and still do to a certain degree) that I'm wasting the sunshine hours, which are the best, of the day. I feel like I'm ducking out of life.
But I need the sleep. My body needs to heal and slumber is the best way to do it. So I've lovingly adopted the nap, with its soft blankies and cool pillows as my necessary friend.
I'm frustrated again. It doesn't seem to take much. I guess my expectations are too high. Or I'm just so hopeful for improvements that any setback leaves me feeling down.
I woke up this morning with a doozy of a headache, a little dizziness and what feels like a head cold. "No," my inner voice screamed. I'm not supposed to be sliding backwards down the "I feel good" staircase. I'm supposed to keep climbing a step every day, feeling better and better until I have to go to treatment again.
Boy am I unrealistic. Even the healthiest of people don't feel good every day. Then I have the complications of dropping blood counts, a compromised immune system and a body that's been battered around by chemotherapy for the past six and a half months. And here I feel disappointed that each day I'm not better, stronger, faster, like some superhero or Steve Austin (the Six Million Dollar Man - ooooh, dating myself).
Don't get me wrong, I feel much better than this time last week when I was just getting over the worst of the post-chemo side effects. I'm thankful for the increased energy and interest in the world around me. But I'm bummed I'm fighting a cold and am still incredibly tired (can you say daily naps?). I want to be more normal with more energy.
But here I am being unrealistic again. I won't recover as quickly as I used to before. It's only my first week post chemo. It's also my first three-week cycle where my body has a chance to recover. I'm expecting too much, too soon. Then I get disappointed with myself. I feel I should be able to do and accomplish more.
It's hard being in this position, especially when you're someone with high expectations, like me. I have to cut myself some slack and accept it's okay to lay down with a book or take a nap when the mood strikes. Cancer is still wreaking havoc in my body and I have it, along with the lingering side effects of the treatment, with which to contend. Yet, I'm expecting myself to jump back into life with both feet the first week I don't have treatment. Talk about pressure.
Realistically, I shouldn't have these types of expectations until I'm well out of treatment, with no more chemotherapy lingering in my body and time for my cells and systems to recover. We're talking months post treatment, not one week after chemotherapy, while I'm still in the midst of a treatment plan.
I guess today's blog turned into more of a journal entry to myself about squelching the unrealistic expectations I have. But it also demonstrates how I struggle every day. While there is no "right" way to fight cancer, I think many survivors want to do it with strength, grace and determination. Yet, when I feel weak, tired and weary, I feel I'm letting my loved ones down. I'm not fighting hard enough. I'm not being strong enough.
It's hard to watch my family carry on with normal life and only be able to participate in part of it. It's challenging to watch my husband work around the house and yard, and not be able to help because I don't have the energy. It's difficult not to be fully engaged in the life I once had. So it's hard to cut myself the slack I so desperately need to lessen the guilt.
Yes, I feel guilty, not so much for having cancer (because that is outside my control), but for what it and its treatment does to me. For not being able to be fully engaged in raising my kids, work outside the home, contribute to the household budget, do the tasks and chores required to maintain the house, and be a good wife, mother and friend.
I know I shouldn't feel guilty because the chemotherapy and its side effects are also outside my control, but it goes back to the idea of fighting cancer the "right" way and needing to be strong. I know the guilt also comes from my good old Catholic upbringing where we can feel guilty about just about anything.
Cancer is a struggle mentally, physically, emotionally and spiritually. I'm plodding along the best I can, trying to be as realistic as possible and be kind to myself. But it's not easy. Nothing about this whole journey is easy. But these are the cards I've been dealt and I have to try to make the best of them.
So I want say thank you for all the wonderful people in my life who let me know I'm not alone in this struggle. I'm grateful for the support of my family, who love me unconditionally - sick or not. I say thanks for the lessons I've learned along the way, including taking advantage of each day and finding happiness in the little things in life. I'm also grateful for the strength God has given me to this point to fight this nasty disease. I'm also blessed for the time I've had to live. This disease is aggressive and could have taken me quickly. I'm lucky I have had months and years to spend with those I love.
I know I haven't posted in a few days, but I've been out there living life. I started feeling better Thursday night and seem to be getting progressively better each day. So I've been taking advantage of that.
On Friday, I ran some errands including getting some groceries. You ever notice you can almost continually use something at the grocery store and when you go in to pick up an item or two, you end up with at least half a cart full of food items you suddenly need, want or find on sale. Each trip to the grocery store suddenly costs me $100. But at least we can eat well.
Friday also brought a trip to my family doctor's office to assess how I'm doing on the anti-depressants. Apparently crying jags over breakfast are reason to up the dose because she doubled it. She also theorized reasons for my depression, all of which make perfect sense to me.
A long-term illness can create negative endorphins in the body. Over a period of time, they can lead to depression.
The paclitaxol could be causing depression. Usually doctors won't prescribe drugs to counteract the side effects of other drugs. But since I need the taxol to kill the cancer (and don't really have a choice in the matter), this is an exception to the rule.
A family history could be the culprit, but I'm not aware of any relative who's been treated for depression.
So I'm on the medication, which I truly think is helping, and I'm supposed to create more positive endorphins in my body to counteract the depressive effects. That includes doing more of the things I like to do, light exercise, etc. Anything I find enjoyable.
I explained the cycle I'd recently been sucked into: I am tired, so I don't do anything, but I'm bored, but I don't feel like doing anything, so I feel even more bored and unproductive, but nothing appeals to me, so I don't do anything.
She confirmed that's depression. I realized I have to try to incorporate more of the things I enjoy into life and try to find the joy in what is possible right now. Part of my problem is I now have this expectation that I'm dying so I should be living life to the fullest, and doing all the wonderous things and activities there are to do. But I'm not physically, mentally, socially, financially or even psychologically capable of doing some of those things (take a big trip, go whitewater rafting, etc.).
With me being in treatment, I also feel like I'm waiting around for life to begin. Yet this is my life and I have to find the good things in it each and every day. Although I still feel like I'm in limbo to a certain degree because I'm still in treatment indefinitely, having more time off between treatments will help me find time to do enjoyable things instead of always fighting the disease.
I got a little giddy feeling on Saturday, when I realized I felt pretty good and I still had at least two weeks to feel like this - or better - before I had to go back into treatment. That whole concept makes me smile.
So I've been engaged this weekend for the first time in a long time. I cleaned my house (it was disgusting), which gave me a big sense of accomplishment. I ran some errands, watched some Memorial Cup playoff hockey, watched episodes of a new and interesting television series and created some meals. This morning, I think I'll bake some muffins. Tonight I'll go watch my daughter's first soccer game of the season. (If I was still in weekly taxol treatments, today would be a bad day and I wouldn't be headed to the soccer field.) Yes, I'm still tired (but less weak), but like I said, I'm trying to engage more in life.
Yesterday, Michael and I even went out to dinner to celebrate our 17th wedding anniversary. He's the love of my life and I'd marry him all over again - then, now, tomorrow. Luckily, he says the same thing about me, even knowing how cancer attacks our lives. I'm blessed to have him and I love him with all I am. Seventeen years. Wow! Let's hope for many more.
Well, this brief update turned into an introspective piece about finding joy in life at whatever stage. As I've said before, we don't get any dress rehersals. This is life. Make the most of it. I'm having a hard time following my own advice but I'm trying to get better at it; especially when I have more time when I feel good to do so.
Sometimes in life you encounter steps you take or boundaries you cross that change your viewpoint. I crossed the threshold of one of those yesterday when I filled out some paperwork.
I received a package in the mail last week from my disability company with a thick stack of forms. I had just returned from chemo and only gave them a cursory glance. I wondered why I was receiving them now and whether it was in my best interest to apply for these benefits, but gave it little thought and threw the paperwork on my desk to deal with this week.
Yesterday I took another look to ascertain the forms are to apply for disability benefits from the Canada Pension Plan (CPP) . From what I can gather, if I'm approved by the government, this benefit would provide a monthly sum of money for both me and my kids.
The terminology that changed my perception of my situation and pushed me over that new boundary was that I'm considered disabled and/or terminally ill. In the back of my mind, I may have mulled these categorizations over, but filling out forms and making it official with the government is a whole different thing. It's almost admitting I won't ever get better - and in actuality I may not - and I'm not sure I'm prepared to accept that just yet.
If I'm considered disabled or terminally ill by the government, I can get payments from the CPP into which I've contributed for years and years. And although I don't necessarily want to admit to those new labels, I want to supplement my family's income. Besides, I will probably never live to see age 65 when those CPP benefits would kick in, so I may as well take the money now and make life a little easier.
I still have some details to figure out in terms of how this affects my long-term disability, retroactive payments, etc., but I'll seek out those answers and figure out what's best for me. Part of me is excited we could have extra funds. Part of me is gleeful I'll actually get a portion of what I deserve from the government (because chances are they would have just been able to keep all the money I've given them over the years).
But all this means I must now consciously consider myself disabled (or terminally ill). A big step in this journey called cancer.
I'm not sure if I'm headed up or down, but right now I seem to be straddling the steps of the side effects staircase. Last night, I bumped down a few of the tiers, feeling heavy and withdrawn. This morning, I feel teary and weak. My frustration on my physical and mental condition must mean I'm sliding just a little bit further down towards the darkness of the basement.
But it's Wednesday, my mind tells me. You should be getting better by now. To top it off, my brain is whirling and awake, thinking of all the chores and tasks I could/should be doing. My mind has a whole to-do list created because the messiness and clutter in my house is starting to wear on me. The seasons are changing, I should be storing away the winter coats, washing down the doors, and sweeping up the crusted old leaves that have gathered in the cracks by the front step. To say nothing of scrubbing the tub that hasn't seen cleanser in a couple of weeks and dusting the bunnies gathered on my picture frames.
I know in the end, it really doesn't matter, but at times I can't get my mind to let go. We planned to have a garage sale this spring to get rid of some of the clutter, but my health situation (and Michael's too for that matter) have prevented us even comtemplating such a big undertaking. We have tons of stuff we don't need and a garage sale would be great. It's just a matter of when and how.
My biggest problem today is weakness. My legs are shaky, my arms are heavy and my mind is delving into the dark recesses of sadness. I hate feeling so weak. I despise being so unproductive. I'm trying to move on but I think my bed will be coaxing me back at some point this morning. Even though it's Wednesday - and I should be getting better - I have to listen to my body and only do what I can.
Hopefully, this will be the last day and I'll ascend the steps to be a stronger, cheerier, more productive person. I only hope and pray that will be my reality and not just my dream.
It's Tuesday. Tuesdays after chemo are usually never good. Today seems just a little bit better than previous weeks. Perhaps the anti-depressants have finally kicked in and are preventing the giant drop into the basement of depression. I feel lethargic, tired, have no energy and no ambition, but the overwhelming feeling of heaviness isn't weighing on me - at least not right now. And I hope it stays away.
Quite honestly, I'm waiting for the other shoe to drop; for the bigger side effects from the larger dose of taxol on Friday to kick in. I'm waiting for the bone pain. I'm anticipating the depression. Yet, so far, with naps, rest and lots of anti-social behaviour, I seem to be doing relatively okay. My poor family suffers from these reactions, but they continue to be incredibly understanding.
Hopefully another day or two of this lethargy and I can come back out into a world that's interesting and captivating - and I can stay there for a couple of weeks before having to do it all again. I just want some time to live between fighting and that's what me and the doc are striving for now.
So I'm biding my time until I once again enjoy the sunshine with which we've been blessed. One day at a time.
It was an over-the-top successful year for The Run for Ovarian Cancer. The event, which took place yesterday, raised over $180,000, bringing the 10-year total for the event to over $1 million raised for ovarian cancer research right here in London.
Team Tina - of whom I'm so proud - was over 49 members strong. The team raised over $10,000 online and I heard that we reached a much higher number than that with donations brought in yesterday. I'm so thrilled and honoured by all the wonderful support Team Tina provides to me. They're my village. The adage says, it takes a village to raise a child, but I also think it takes my village to fight ovarian cancer. It's a challenging and sometimes lonely fight, but knowing I have the support of all these amazing people make it a little easier.
I loved the hugs yesterday. I loved seeing everyone who came out to run, walk, take photos or cheer. The weather even cleared so we didn't get rained on but experienced perfect running weather; just a little cool and overcast. But then the sun came out to help celebrate the remainder of Mother's Day.
A big thank you to everyone who supported the run. I'm externally grateful. You're all amazing and I am lucky to have you in my life.
Yesterday, chemo took about five hours, but was uneventful. And during the process, I got good news, which makes this whole ordeal more palatable.
My CA-125 is down to 60! That means the taxol is working on the tumours. Normal is under 35, but I'm not sure I'll ever reach that magic number again. Being at 60 is amazing and the news made me tear up yesterday.
Just to give you some perspective, it was in the 400s before I started treatment. It dropped to 223 on March 8 with the cisplatin and gemcitabine treatments (but it took a long time to do that). Then a few weeks ago, after starting the taxol, it dropped to around 125. And now it's 60!
Part of me now second guesses switching the treatment to the every three week regimen, but as I reasoned in my blog yesterday, I have to have a life. I need quality in it and not just quantity. And who knows, maybe the bigger doses every three weeks will work just as effectively. Time will tell.
As for how I'm feeling today after that bigger dose of taxol, I'm experiencing a little bit of nausea/stomach pain. But I had a good night's sleep and am feeling a little less tired. I know the steroids are contributing to pumping me up and I hope they help during the Run for Ovarian Cancer tomorrow. I'm excited about seeing everyone, but nervous about my energy levels. So please forgive me if I seem a bit tired and distracted.
I love every member of Team Tina (and all who donated) for your support and participation. You rock!
After some frank discussion with Dr. W yesterday about quality versus quantity of life yesterday, we've decided to change my treatment plan - starting today. Instead of getting paxlitaxol every week for three weeks with one week off, I will now get a larger dose of the same chemotherapy once every three (or maybe even four) weeks.
While the research indicates the weekly taxol treatments can be more effective at fighting the cancer, my experience indicates I don't have much of a life when I am on this treatment regimen. I feel good only a few days a week before I have to start all over again. The side effects are harsh, and affect me both physical and mentally. And quite honestly, the whole experience is wearing me out.
Dr. W also said he has a woman under his care who is doing the three-week treatment plan and is doing well. So I have to have hope this will be good for me from both a quality of life and treating the cancer standpoint.
As Dr. W said, there is no point in fighting for my life if I'm not enjoying that life. He said he could give me drugs that would kill the cancer, but it would also kill me in the process. It's about finding the right balance.
While I'm happy - and relieved - we're working towards me having more feel-good days, I'm a little worried I'm not doing all I can to beat the cancer. But I have to get it through my head, this is a chronic disease, and that it's about managing it and still living as opposed to beating it.
I'll still have the yucky side effects (and perhaps even a few more), but once they're gone, I should have more time to recover and more days to feel good. Time will tell how this will all go.
I don't know if it's psychosomatic and my mind is playing tricks on me because I don't want to have chemo, but I didn't feel well yesterday and I'm a bit off this morning. I've also woken very early the past two mornings - 4:36 a.m. this morning - probably due to anxiety. I'm sure part of it is dreading the chemo and a portion of it is all the things I feel I have to do.
Tara is off to a Girl Guide camp tonight for the weekend (and I'm worried about her being cold and picking her up early on Sunday for the run), getting stuff ready for Mother's Day, being well enough for The Run for Ovarian Cancer on Sunday, etc. I know I'm trying to be superwoman and if stuff doesn't happen, it's not the end of the world, but I want to make it happen. It's hard to let go of control. But I have to accept I can only do what I can - even if that includes just sitting on a lawnchair at the run on Sunday.
It's off to chemo today at 10 a.m. I hope to be able to rest and sleep while I'm getting my dose of the cancer-killing chemical. If you can spare a prayer or some good karma, send it my way around that time. I think I could use it.
Well, it's back to reality. Unfortunately, my real life is a lot harder to return to than many. I don't have the luxury of coming back from vacation to simply return to my job, organizing my kids, sorting through the paperwork and cleaning my house. While I still have the majority of those tasks on my to-do list, my reality involves returning to chemotherapy treatments. Given how much better I've been feeling, I'm dreading Friday.
But I have no choice. I have to keep chipping away at these tumours occupying my abdomen. I have to continue to blast them with the toxic chemicals of the chemo. And unfortunately, I have to continue to go through the terribly depressing side effects that come along with the whole thing.
I think the anti-depressants are working a bit. I've felt happier during the past few days. Of course, it could have been because I was on vacation in a sunny locale with my sister, reading books and relaxing. It could be that I escaped the harsh reality that is my life right now for just a little while. But hopefully, it's also the medication and I can be cheerier when I'm not plagued by the side effects and not quite so down when the chemo depression grips me. Time will tell because it takes about three weeks before the full effects of the medication take effect.
This morning I sit here, choosing to be thankful for the opportunity to get away with my wonderful. generous sister, that I had energy and stamina to do some shopping and dining out on the trip, and for the sunshine and warmth I experienced. I will enjoy these last few days of feeling pretty good and then go see Dr. W tomorrow and get my chemo on Friday.
Luckily, I feel okay for a few days after the blast of chemicals because The Run for Ovarian Cancer is this Sunday. As of this morning, Team Tina has 45 fabulous members and has raised (online only) over $6,500. The generous organization of London Life matches $6,000 of that. Woo hoo! A group of very supportive people at London Life did a ton of fundraising through activities and a penny drive, and I know many, many wonderfully generous people participated in these events. I'm so very grateful for all the hard work and the generosity. It's not too late to join the team or sponsor a runner by clicking on the link above.
So I guess I have even more to be thankful for than my Myrtle Beach vacation, I'm also blessed with the support of Team Tina and the generosity of all those who donate to the run. I'm thankful for the researchers who work hard every day to try to beat this disease. I'm grateful for the support of my family and friends that comes in many, many forms. For all those things, I'm a lucky woman.
I'm taking each day as it comes. Yesterday was a great day for me physically. Angie and I spent the day by the pool, reading books and getting some natural vitamin D. Don't worry, I used some good sunscreen and spent at least half the time under the shade of the unbrella we staked out early.
It was a beautifully hot day and we had to take a dip in the pool every once in a while to cool off. It was the first time I was able to go swimming since last July and it felt glorious to feel the cool water caress my body as I breaststroked my way across the pool. Aaaaah, I love this port. And the incision sites are healing up nicely.
Last night we had the opportunity to see the bigger moon as it rose over the ocean. Apparently, the lunar orb was in such a position the full moon was supposed to look larger than usual. I didn't notice that it looked any bigger, but it was round and orange as it first rose over the cascading waves. It looked beautiful.
Then at about 9 p.m., we had a spectacular show of lightening and thunder with a heavy downpour. The cloudy weather continued into this morning and so we did a bit of shopping. But my stamina was sadly lacking today and I had to return to the hotel room for a nap. Unfortunately, I flew miles from home only to need to nap in the room during vacation. Sigh. Angie headed down to the pool for some of the spotty sunshine while I caught some zzzzzz. I felt much better after my nap and we picked up some Italian and dined in our room.
So long story short, I'm better and doing okay but not quite up to snuff. I tire easily and I'm popping cold medication to keep the sinus congestion at bay. The cold and its subsequent medication may also be contributing to the run down feelings. But compared to a week ago, I feel so much better.
So I take the good and bad feelings, and work with what I'm given. It's the best I can do. I need to enjoy what I can from this vacation because it's my week off from chemo and I need to build up my mental and physical stamina for when I head back to London and return to treatment (but I'm not going to think about that now).
I am in Myrtle Beach with my sister, feeling better than I have in a long time. It's amazing really that I feel as well as I do considering how crappy I felt just two days ago. But I started to really improve yesterday and I today I feel almost normal.
I am sitting on our balcony, listening to the waves as they race towards the shore and admiring the pink and purple hue of the clouds. The sea birds are shrilly calling, looking for food and the lights just came on to illuminate the pier next to our resort.
I still don't have much of an appetite and I have a touch of the cold Michael's had for over a week, but those are minor inconveniences. The wonderful thing is I can expect to feel stronger and better with each passing day, so I will be able to enjoy this long weekend away. (I was so anxious about this vacation and my ability to participate in it that I was in tears earlier this week.)
We're taking each day as it comes and probably won't do anything strenuous - a little shopping, lounging on the beach and by the pool, reading, dining on local delicacies, people watching, etc. We may even take a drive and see a little more of the area. Who knows. It's a casual type of vacation, which is what makes it so great.
Mentally, I think I've recovered as much as I will - or at least until the anti-depressants reveal their full power and the chemo completely clears from my system. Physically, I'm still a bit shaky, weak and tired. Perhaps my blood counts are low. Regardless, it makes me slower and less able than I'd like to be. Especially since I'm going on a trip tomorrow.
I'm a little (okay very) anxious about my compromised state and travelling. But I'm sure my sister will be there to help me get to where I need to be and get me a ride on one of those airport carts, if necessary. She assures me we can take it slow. I can rest a lot and naps won't be a problem because she's got lots of things she can do while I rest (she's got some work to do too).
I say my mental state seems to be recovered as much as it can because I've noticed it's been less than stellar since I started the taxol treatment. Usually I have a quick mind and good memory. I don't have the same ability to concentrate as I did. It makes conversations, reading, doing chores, engaging with others a bit more challenging and I seem to drift. It doesn't help my family either, especially when working with my kids on their homework or having conversations with Michael. It's also somewhat boring to my poor mind because it's not engaged. But then my mind chooses not to be engaging. Does that even make sense? In my poor befuddled brain, it does.
But I am what I am right now and this is who's headed to Myrtle Beach tomorrow. I have no big expectations and I'll do what I'm able. Luckily, I also have a very understanding sister who appreciates I'm in the middle of a pretty big fight and it's taking its toll. So we'll do what we can and enjoy the feeling of sand between our toes as we soak up a little bit of South Carolina sunshine.
When I think about my blogs over the past few weeks, I realize they're actually rather depressing. As a result, I wonder why people are still even reading.
I don't feel well, I have the seemingly constant post-chemo depression and I am certainly not uplifting and cheery. I don't have any insights or lessons to share except to say, enjoy your life today because it could be worse. What a bundle of sunshine and roses I am.
When I'm in this post-chemo depression, it's hard to remember the good feelings. I'm hoping when the anti-depressants kick in, they'll help me from sinking so low. I hate feeling like this. I hate sharing this side of me with you. I hate subjecting my family to this. I hate it all so much.
But it's what I must do to fight this cancer. I have no choice.
I'm hoping that since I seem to be sinking into the basement a little earlier this week that I will climb out quicker too. I'm praying I am not getting Michael's cold, which would also make me feel yucky (and account for the earlier post-chemo symptoms).
I can't get sick on top of the depression. That would be just too much. And a cold would interfere with my trip to Myrtle Beach on Friday. So I'm going to rest a lot, sleep a lot and do a whole bunch of nothing with the hope my body responds favourably and fights off the cold.
But boy is it boring. Once again, I'm bored but don't feel like doing anything. I have no energy, stamina nor drive. Nothing appeals to me - not books, activities, food nor drinks. But I have to fill my days. I have to cope. It's not easy.
But, as usual, I will do the best I can. It's all I can do.
Well, my blood levels were good yesterday, in fact better than the previous week, and I got my chemo treatment in the afternoon. All went well. The port and Emla cream worked like a charm with no pain upon needle insertion and I was off to the races.
Now I'm taking my anti-nausea medication and trying to enjoy the relatively good feelings I have on this Saturday. We have some errands to run and I've been in the hot tub. We're also going to see a local high school production of Oliver tonight because the neighbour's kid is the lead. I may have to have a coffee this afternoon to give me that extra boost of energy to get me through the evening, but it's an event to anticipate, which is good.
I'm feeling a little restless and antsy. I also feeling tired. A nap may also be in order - before the coffee, of course.
I talked to the chemo nurses and my Dr. W's nurse about my feelings of depression yesterday and they've suggested hospital social worker and spiritual worker referrals. I figure it can't hurt and these are discussions I can have when I'm in for chemo. Then I don't have to go into the cancer centre more often to take advantage of these services. I'm also tossing around other ideas in my head that may help me cope better. I will have to talk to Dr. W about them to see if they're possible.
For now, I'll see how the anti-depressants work. I've also received suggestions from friends about acupuncture and checking to see if I have a vitamin deficiency. I am grateful so many people are looking out for and care about me. Thank you.
So now I'm off to get those errands done so I can rest before the big night excursion.
Last night around 8 p.m. I started to feel somewhat normal. Now that's my new normal, where my mind is engaged, my mood has (almost) fully climbed all the stairs from the darkness of the basement, I have more energy and I can eat a bit more. I'm still restless, tired and weak, but I'm better. And while it's not the that state I'm hoping to achieve as I get better, I think it's the best I can hope to expect right now.
When I get to this state, I feel like I can continue with the fight. I feel like maybe I can be brave enough to face the side effects again.
But it was only last night. I get chemo again today. I haven't had the good feelings long enough to build up my reserves and prepare for the onslaught again. Hopefully, I'll have good days today, tomorrow and at least part of Sunday where I can capture just a bit more of the strength. I'm keen to get more ninjas circulating through my system to kill the tumours, but I cringe at the idea of going through the yucky, mucky side effects again.
Speaking of ninjas, I got a new one from some good friends visiting from England this week. My blue ninja sits on my desk besides my stealthy black fighter, ready and willing to kick some cancer butt.
Above I added the caveat almost when talking about climbing out of the depressive basement. That's because I don't think I am fully able to do it on my own with all that's going on with my cancer, the treatment, the side effects. That's why my family doctor, when she heard me describe the feelings of of being pursued by dementors and having all happiness sucked from my life, prescribed an anti-depressant.
I've suspected I needed an anti-depressant for a while now, and mentioned it to Dr. W. He was reluctant because it's a full-time medication that I would be on for quite a while. But I really think I need it - and full time. The whole world, even on my good days, has lost some of its brightness and zest. I don't get super excited and squeal in my head in excitement about good things in my life anymore. I don't have the same interest in the simple joys I used to relish. The whole world has a steel blue film to it.
So I'm glad to be put on this anti-depressant. It will take a few weeks before I feel the full effects, but the pharmacist said I should be able to feel some of its mood-lifting properties in about a week - just in time for my trip to Myrtle Beach with my sister.
And maybe, the medication will help make the post-chemo depressive days a little less dark. Hopefully, these little white pills will help me cope so I can continue to follow the best route to make the cancer die.
If you can spare some good karma or are inclined to say a few prayers, please send a few words to the Big Guy about successful treatment today and strength for me to deal with the side effects coming next week.
I woke this morning feeling tired and lethargic. That reality makes me mad because this is supposed to be one of my good days. One of my few good days to enjoy.
Michael is sick. He has a sore throat and a nasty cough. Luckily, I seem to only have developed a slight sinus congestion, but still, it's dragging me down. Michael is extremely worried - to the point of being agitated - that his illness will drag down my white blood cells and prevent me from getting chemo tomorrow.
To be honest, I wouldn't be disappointed if I had to skip treatment tomorrow (and then have a treatment holiday the following week). That's a bad thing to say. It's a bad attitude. But it's honestly how I feel. I would like a break.
I shouldn't be feeling this way. I should want to continue getting the cancer-killing chemo and continue down the road to remission. But I'm tired. I'm so very, very weary of feeling awful most of the time. I'm tired of trying to gear myself up for yet another round side effects.
Then I feel guilty because I have to keep fighting for all I love, want and believe in. But I don't want to fight. I'm tired.
Probably more often than I should, I find I get impatient with myself. Today is one of those days. This is the day I'm scheduled to feel better, to improve and start to be able to enjoy life again. Yet, as my hands shook this morning while eating my Cheerios, I got frustrated. I want to feel and be better so bad, I get impatient when it doesn't automatically happen at the scheduled time and place.
Then I feel I'm disappointing the other people in my life who desperately want me to feel better and rejoin them. I lament when I'm still not strong enough nor cheery enough to take advantage of the "good" days. Maybe it's because there are so few of these so-called good days that when I'm not at my best during one of them, I feel cheated and I feel I'm robbing my loved ones because we count on them to get a semblance of "normal" Tina back and use the time to rebuild strength to go do it all over again.
Don't get me wrong, I do feel better today, as I usually do on Wednesday. It's not as if I feel awful this morning. As I sit here typing, the sun is shining in my office window and I feel the slight stirrings of a smile on my face. So the dementors are fading in the streams of the golden sunlight. I think these mythical dark creatures also started vacating my body as I went back into the warm waters of the hot tub this morning. It was the first time since the doc inserted my port almost two weeks ago. I figured the area had healed up enough to allow me to enjoy the therapeutic touch of the pulsating waters.
I'm cautiously optimistic the darkness has been swept away for another five or six days. I need these days to recharge my batteries, reconnect with my loved ones and gear up for the next round of cancer-kicking chemo on Friday.
Then I have a rest week, during which I'm heading south for my third-annual Myrtle Beach trip with my sister. While I'm a bit nervous about the jaunt and my stamina, I'm sure the change of scenery and relaxing time with my sister (without treatment) will be good for me.
So the goal for today is to once again try to focus on all the good things and be thankful the darkness is dimming. But I'm also going to try to be a little more patient with myself, so I don't get so frustrated when timing doesn't go exactly as planned. I have so little control on this roller coaster of a journey called cancer. I have to try to be more satisfied with the best I can do. Considering the situation and the fact my health seems to be improving, I'm not doing so bad.
It's Tuesday. The day I sink into the basement of depression and the blackness rolls over me. It's the day I get mired in the muck, with no tow rope in site.
But I'm trying to change my attitude slightly this week. I'm thankful because yesterday wasn't too bad. I kept myself busy with some computer work, reading, napping and television. With only approximately 24 hours or so to get through, I'm attempting to be positive this morning, saying I can make it without breaking down and allowing the darkness to pervade my spirit.
In the past, I've used the dementors from the Happy Potter films to describe how this state feels. They're the dark beings who suck the happiness from all those with whom they come into contact. Harry and the gang say the dementors make them feel as though they'll never be happy again. That's how the bleak, post-chemo day(s) feel to me. But I have to remember, they're short lived, then I'm through and I can face life with my (sometimes wavering) optimism again.
A friend recently wrote me an email about her strategies during some dark days - and ones I've used myself with some success - of focusing on the small, good, little things in life. I've even said in my blogs that if I focus on the good, I diminish the power of the bad. So I'm going to try to take that advice a little more to heart today and perhaps it will lessen the inky blackness and instead leave me with a less heavy, hazy grey where I can see the end of the tunnel and plod my way to it with determination and a (little) bit of patience.
So I sit here at my computer, thankful my mind can be creative enough to string thoughts together, sipping my coffee with the Cinnabon-flavoured creamer in it and planning some not-so-taxing activities for the day. Perhaps if I have some minor tasks, I can distract the dementors enough.
I'm also thinking about how thankful I am that my homecare nurse declared my wound healed enough to head back in the hot tub (although with the yucky snow/rain that is pelting the pavement right now, I'm not exactly keen on shedding my jammies for a bathing suit this morning). Most of all, I'm extremely grateful for all those friends in my village who sent words of support and love over the past few days in preparation for this round of post-chemo yuckiness. I love all your support and encouragement.
As the day progressess, I'll try to keep remembering the good things in my life and perhaps they'll be enough to produce a patronus (another Harry Potter reference) to shed light on those dementors and keep them far enough away their icy grip doesn't have a chance to invade my heart.
Then tomorrow is another day.
Here's hoping you don't encounter any dementors nor need your patronus today. Despite the cold and snow here in London (and whatever the weather is in your locale), I hope you find sunshine and light.
For those who want/need it, here's the latest update:
The port worked like a dream. While there was some slight pressure and very minor discomfort when the needle was inserted, I think it is because the site isn't healed up entirely. The port has been placed in a pocket under my skin and I think it's that area that hurt (because it also hurts when I press on it now) and it wasn't the needle going through my skin. So the good news is the very expensive Emla cream does its job. It will be excellent moving forward as the site heals up.
I can also see/feel the tubing that runs from the port up into my major vein. Its prominence is decreasing and the chemo nurse said that over time, I won't even notice it. I guess the area hasn't healed entirely and the swelling will go down as it does.
My bloodwork came back good enough for the chemo (obviously) although my red blood cells and platlets are both dropping at a slow but steady pace. But as long as they stay in the acceptable range, I'm okay. I do know that lower red blood cells make me feel tired and weak, so I don't want them to drop too much. But I know Dr. W will keep a close eye on them to make sure I'm safely receiving my treatments.
I'm done two out of the three chemo treatments for this round. I feel tired, but overall okay today. I managed to have about half an hour of fun playing wii Fit this morning and I've been reading and relaxing. Yesterday, I had a few stomach pains but I'm attributing those to the ninjas fighting away in my abdomen. I notice my tastebuds aren't as active as they could be too, which is unfortunate since I have a lovely steak and baked potato planned for dinner.
But it could be worse and I know I'm heading to those days.
I'm not looking forward to the depression that I know is coming. I just have to work my way through it. It's ironic, when I'm in the depths of it, I feel the depression will never end and I can't cope. Then I get through it, get a couple of days away from it and I get the mental strength to face it again. I hope I can be stronger when I'm in it this time. I was a bit weepy during the last round.
Overall, between treatments, I'm feeling better. I haven't thrown up in over a week, I can eat, I'm having bowel movements almost daily. They're small victories, but ones I have to celebrate because maybe, just maybe, this means these weekly paclitaxel treatments are working to make the cancer shrink.
I'm almost afraid to say it, but yesterday, I felt better than I have in quite a while. Michael took the day off and we spent it together, which was extremely nice. We did some wii Fit together, we had massages, we watched the London Knights game side by side. The memories of having such a low-key, yet enjoyable day makes me smile this morning. I wish we could have more of them - or ones even better (as my health improves).
My stomach cooperated for the most part with only some relatively minor discomfort in the evening. But I ate a decent dinner, so I think I was too full. I think perhaps the tumours are shrinking, but I may need to stretch my stomach out a bit. And, knock wood, I haven't thrown up in a week.
My home care nurse came over yesterday afternoon and took the dressing off my port. One week after the procedure, I can now shower again - no more sponge baths - but she advised me against heading for the hot tub or swimming pool just yet. She comes back on Monday and hopefully then she'll proclaim the area healed up enough to start to enjoy some of those activities for which I had the port put in.
Today I head back to the chemo suite for the second treatment of the second round of the taxol. Hence the treatment 2B in this blog's title. While I've already done five rounds of the other chemical combination of cisplatin,and gemcitabine, I feel with the taxol regimen, I'm starting all over (which is quite disheartening). So the numbering starts all over.
To prepare the port site for the special needle that connects the IV tubing, I purchased some very expensive numbing cream, called Emla. It's a lidocaine/prilocane combination that numbs the skin so I won't feel the needle go in. A 30 g tube of the magic ointment, which is smaller considerably smaller than a regular tube of toothpaste, cost me $68. Yikes! But I'm sure it's better than the pain I'd experience without it.
So wish me luck as I head to the chemo suite today and pray I have a couple of days post-treatment to enjoy before the side-effects come rolling in. I'm steeling myself for them and praying I will be strong. I know it's only a couple of days, but it's all quite overwhelming. Until then, days like yesterday and hopes of more like them will help keep me going.