Wednesday, 19 December 2012
The results... NED! 'No Evidence of Disease'. Though in the case of PMP re-occurrence is fairly frequent it may not happen for many years. Every 6 months I will be having an MRI, and checking... but for now I feel so incredibly happy and free.
Next Monday is my 38th birthday, and I will celebrate it with an enormous cake.
Bless you and thank you all for your support, your kindness and prayers, your good energy. We couldn't have made it through this year without you!!
Tuesday, 18 December 2012
I have been in hermit mode today, to be honest, but I thought I would post up since I have been fielding this question.
MRI went ok. It was a really strange experience; I could understand why people feel claustrophobic. You're strapped in and put in this... tube? Then really loud, frightening noises are all around you in intermittent bursts. I think I was there about 45 minutes, but its hard to tell. I was pretty happy that I'm a sci fi fan and could get my mind to turn the noises and place into something else entirely; my favorite was imagining I was in a torpedo tube or some such. Maybe I was a stowaway on the Enterprise? At any right trying to think of plausible scenarios helped me pass the time, and it certainly kept me from panicking.
It DID help to close my eyes though, so if any of you are heading into your first MRI that would probably be my one recommendation.
As for results - no, I don't have them yet. We asked afterwards how long they usually take and were told about a week, but usually longer during the holidays. I do know that Dr. J had put a note to please read right away, so I'm still hopeful we may be able to get them before my birthday on the 24th. I want to celebrate it with a NED ( hopefully!) or at least knowing what may be in store for us the next few months.
So - no news. I'm actively ignoring the phone because honestly it just stresses me out to talk about it when there are no news to share. Sometimes waiting is the hardest part.
Anyhow, I will post up once we DO have anything to report, good or bad. All part of the journey, right?
Thursday, 13 December 2012
My scan ( MRI) is coming up on Monday the 17th. Not sure when I'll be getting the results, as its taking place so close to the holidays.
As one might imagine Chris and I aren't sleeping very well at the moment, anxious about what the scan might show. Is the cancer gone? We know the chance of recurrence is high, but we have also met people who haven't had it, several years out from their MOAS.
So here's hoping, oh here's hoping!
We are at ease with the knowledge that we did absolutely everything we could think of this year. Hopefully it pays off, but if it doesn't there are still alternative therapies to try.
Still... if you have a few moments to send a prayer or good energy my way on the 17th, much welcome and appreciated! <3
Tuesday, 11 December 2012
It was a good distraction for the past couple of months -my scan is in less than a week, so I'm nervous but passing the time finishing off a few projects.
The whole reason for this book was to tell our story and help other families with kids start a conversation. To date there was nothing harder than telling my son that I had cancer; nothing I dreaded more than answering his questions, or worrying about his fears. Talking about it helped us all though, and it was one less weight for our family to carry. Being able to tackle it honestly ( without excessive detail) helped us make it through this journey.
The printed book I am self- publishing through Lulu, and will be available in 2013. You can find it here:
It isn't a catch all book, but it is a labour of love. I hope that it can help some of you that have contacted me since I started this blog!
Here is a list of wonderful organizations to donate to:
- The BC Cancer Agency
- The Tom Baker Center ( Calgary) - surgical oncology department
- http://www.pmpcure.org/ ( PMP Research foundation)
- http://www.pseudomyxomasurvivor.co.uk/ (In the UK)
Monday, 10 December 2012
Needless to say I am not sleeping particularly well, and until the scan in a week- goodness, one week!- I will likely be less present both online and in person. Full hermit mode seems to now be engaged, and I hope to come out of it once I have had the scan.
Saturday, 8 December 2012
Half a year! In less than ten days I will have my MRI, and whatever it shows we will take the next step forward. Somehow waiting is one of the hardest parts; I hate the not knowing one way or another.
Tonight Hannukah started, the festival of lights. It celebrates a miracle, and the ability to find light in every aspect of our lives. What better reminder than the miracles we experienced this year? After the fear, and pain, the worries... just being given the chance to spend this time of the year with my family is amazing. Having found the doctors that I have, being given the opportunities I was... how can I not feel blessed? How can I not see the brightness around me, when my friends and loved ones were points of light and support all through this year?
Tonight I finished the children's book about PMP and appendix cancer that I have been creating with Aiden ( for Aiden). I am profoundly happy that this is something I have completed; that we did it together, and can share it together.
I have the PDF version ready, and will be publishing the physical book version too, so hopefully more info soon.
My MRI scan is on December 17th; if you have a moment, and can send some good energy my way that day, please do?
Wednesday, 28 November 2012
It was nowhere as lengthy or involved as putting it in was. So happy not to have it in me anymore, even though it served its purpose beautifully.
One more thing down. :) Heard from a friend who had the same surgery a week after me that she got her results - NED ( no evidence of disease) and it made my day. I hope my own MRI next month says the same thing.
Today another friend's husband is undergoing MOAS with my surgeon, so keeping fingers crossed and sending some prayers their way. Life one step at a time, but feeling pretty good today!
Monday, 26 November 2012
Not for the faint of heart, it describes the type of surgery I underwent and the surgeon who pioneered it:
As appendix cancer is such a stubborn foe there are people who have undergone it 2 or even three times.
I’m really hoping that ONE does the trick for me. I guess we’ll know at the scan in December. G-d bless people like Dr. Sugarbaker who continue to push the frontier of medicine.
Scan date has been set for December 17th, which means I probably won't have the results until the new year. Ah well, at least I will get to enjoy the holidays and my birthday ?
Monday, 19 November 2012
I was talking to a friend and she commented on my positive attitude. In fact, over the course of the past few months that has been brought up by friends and I smile and thank them. I AM thankful; their care and concern helped us made it through the worst times, helps me make it through the nights when insomnia takes over.
In my case, I need to cling to it. I do. I remember remarking once : "What's the alternative?" because for me, if I go down that road I'm not sure I can climb back up. I need to stay positive, determined to win this. I need to look at the scars that pepper my body as well earned battle scars, have the mindset that the war is not yet over but I have every chance of winning it in the end.
But that's me. That's the way I function. Throughout this journey I have met other people that don't process their cancer journey the same way. There are tears, and depression; there is grieving, and bucket lists. My positivity isn't a badge of honour, simply the way that I handle things. Likewise, there are times ( and I'm sure there will be some too) when I need the opportunity to cry it out, to grieve.
Cancer isn't fair. No part of your life, or your loved ones', remains the same. If G-d willing you survive it you will be forever altered; I have had survivor friends describe it as the 'new normal' because... well, things never go back to the way they were before diagnosis.
We all grieve, whether we admit it or not. There were a couple of times, just before the surgery, when I actually broke down. I was ANGRY, so angry and so upset. I have few regrets in my life, and I have tried to lived it as well as I can. Chris and I always believed in following our hearts and have had plenty of adventures together. Looking back there isn't anything that I need to make -right-... but looking forward? I realized that last year, on my birthday, I was sick. I came down with bronchitis and didn't bother celebrating it because I felt miserable; besides, there would be many others to celebrate, I told my husband and son.
I am 37. In March I came to the realization that there may not be another birthday. I broke down thinking that I would have to explain to my son that parents are mortal. That although I had promised to always watch out after him I might not be able to do so physically. That I would leave my soulmate alone with the task of raising him, of guiding him through puberty, and girlfriends, and broken hearts.
I documented every activity we did together, every moment spent with one another -- just in case. I don't want Aiden to forget my face, or the sound of my voice. I don't want him to forget that we did art together, talked about plans and sea creatures, sung The Rainbow Connection every night before falling asleep.
Just before my surgery I went shopping with my mother and sister in Calgary. I wanted to buy her twins toys, and she kept trying to talk me out of it, bless her. Finally I broke down and started bawling, there in the toy aisle; I told her to just let me buy them something, because I wasn't sure if I would be there for the holidays or their birthdays and I wanted them to have something from their aunt. She got the point, and let me.
"Everything will be okay" is such a wonderful mantra, and I have heard it so often this past year. I need to hear it because it reassures me; I need to say it because then maybe, just maybe, I will believe it too. But there were many times when it was uttered as a shield, either by me or someone close to me. Sometimes its just too hard to deal with the possibility that things may not be okay.
What do we mean by it? Do we mean to say ' I know the cancer will go away completely and never return'? I don't know that. I certainly want that to be the case, but life holds no guarantees. What do I mean by it, when I say it?
I mean that it will make sense, in the end. It means that in the event that the cancer doesn't go away, or returns, I am willing to keep fighting it. It means that if eventually it gets the upper hands and takes me I know that Chris, Aiden, my family and friends... they will all be okay. To me love is like energy that cannot be destroyed, only transformed; in whatever form I am around my loved ones I know that I have given a part of me to them, just as they have given part of themselves. I know that I am at peace which whatever the future holds because I know that past all this I have put enough of -me- in the universe for some of those footprints to survive.
I grieve, but I also hope. :) In December I will have my scan, and after we get the results we will see what steps come next. Regardless, I will be celebrating my 38th birthday with the most enormous cake that I can find.
Friday, 9 November 2012
Ever so slowly I'm regaining my strength. I am feeling like myself again, and day by day incorporating more activities. I am back to drawing, my eyesight is almost back to normal and I can actually feel my body healing from the onslaught of the chemotherapy. No more passing out, or suddenly going into shock! :)
I had a wonderful time celebrating Halloween ( I was Snow White, heh) and my son's 8th birthday. We got to meet our new nephew, Connor, and show Aiden Tigh-Na-Mara, were we spent our honeymoon 12 years ago. These were all things I wasn't sure I'd get to do, so they were that much sweeter.
Now I am focusing on health and nutrition; my appetite has returned for the most part, so I am cooking again and incorporating more new foods every days. Physical activity I am tackling slowly, as my energy is still rather low. While I have mostly healed from the surgery I still have the odd aches and still have to work up to my usual activities. I am enjoying these weeks as on November 28th I have to go in and have the port-a-cath taken out, which will probably make me achier for a while. Still, the thing hurts everyday so I will not miss it!
Early December I will have my MRI scan, which will be read both by my oncologist here and Dr. T. I wish they'd give me a date! I'm told that I will likely not know until late November when it will be ( sometime in the first week of December or so); then I have to wait another 2 weeks to meet with my oncologist and discuss the results.
In the meantime I am also looking into alternative therapies, as recommended by a friend who is a chinese medicine practitioner. I can't be on HRT either ( my oncologist discouraged it) so getting to know my body all over again is a bit of a challenge.
All that being said... I am happy.
I know that I have no certainties yet. Do any of us? I will wait for that scan with bated breath and hope that after everything we did this year it shows NED. And yes, I'm aware my particular cancer has a high probability of coming back sooner rather than later, but I have now met survivors 5, 7 years after their surgeries and chemo. And in 5 years, I keep telling myself, who knows what else will be discovered in terms of treatment or perhaps even a cure?
In the meantime, life goes on. Today is a gorgeous autumn day, and I am going to spend it playing with my son. I am drawing again, I am writing again. The sequel to my novel is underway as is a Historical Compendium of the Yappari and Sidhe empires ( thanks to my sister's prodding); I am also working on a YA steampunk novel for my son and a kid's book about appendix cancer. The latter I am making together with my little boy, as I hope to make it something parents/ grandparents can use to make the explanations easier and a little less scary.
I have projects and hopes galore. So...onwards!
Thursday, 25 October 2012
I had a lot of mixed feelings when we stopped chemotherapy. It wasn't a light decision at all; Chris and I agonized over it for a while, but finally decided the cons outweighed the pros for me. The main part of that statement? FOR ME. Every cancer case is different; from the prognosis, to the surgery outcome, to the type of tumor, to the side effects of chemo.
I have been very lucky in that I belong to an online support group ( Appendix Cancer Support Group) on facebook that has really helped me in this journey. Its a closed group so people are honest and discuss/ ask things that normally we might shy away from talking about. I have never been someone content to hide my head in the sand and go forward blindly, so the information and support have been invaluable. From the people there I have learned that some of the issues I was dealing with weren't that odd; I got suggestions, recommendations, understanding. Belonging to some sort of support group has been crucial in helping us cope.
This weekend we are taking Aiden with us to a 'Children's Group' at the Cancer Centre. He has a wonderful counselor at his elementary school that he gets to see once a week, but this is sort of a family counseling that takes place every 2-3 months through the center. He is very eager to go and find kids going through a similar experience, and we are also donating some cancer kids books to his school for his birthday.
We have always had great communication with him and he's a wonderful little guy, but lately I've been noticing more and more he's reluctant to discuss his worries and fears - he doesn't want to stress US further!
Chemo was hard on me, physically and emotionally. It was really hard on Aiden and Chris too. Aiden in particular was a lot more nervous - he started sleeping with a nightlight again, and needing a lot more cuddles and reassurances. When there were fire, earthquake and 'burglar' drills at his school he was terrified. My impression was that chemo showed him how weak and vulnerable I can really be, and he wasn't expecting that. People always talk about the toll that cancer takes on the body, but fewer discuss the toll it takes on the spirit, on the heart.
This week Aiden had a cough and a bit of a fever; as I'm being careful not to catch anything bad before we have the chance to get our flu shots next week we kept him home to nip it in the bud. We cuddled ( carefully) cooked, drew, played... it was wonderful. Today when he went off to school he was a much, much happier little boy. I think now he feels that I'm back. We've always been peas in a pod, doing everything together. The last few months I couldn't even really take him to school and pick him up, never mind really do anything fun together. Now that the chemo is finally leaving my body I'm starting to have more energy and we're returning to our routines; he was so happy that I took him to school today. Bit by bit, and day by day we're getting back a little of the peace of mind we'd lost.
Our world, however, has forever changed.
Still, today is a good day! For the first time in several months I feel like -me-; I look at the mess in my house and want to dig into it and clean it. I brought out my fabrics and have been making tiny doll clothes. I have the writing done for a children's book I'm planning to make with Aiden about our on-going journey.
Autumn is here and it feels like I have missed out on just about every season this year; that's okay... I look forward to enjoying them all next year, G-d willing!
Tuesday, 16 October 2012
Today I'm done with chemotherapy, its official! :)
I only managed 4 out of the 12 cycles - I had so many side effects and it hit my body so hard that it was decided it was best to stop it. Last week my cycle #5 was cancelled, as my white blood cell count was too low, so today we made the choice with the oncologist to officially end any more chemo. Happily from the blood tests today my white blood cells are back to normal levels now.
So... DONE ! I am happy that I had some, which has hopefully helped get rid of any cancer cells left, but even happier that my body now gets the chance to heal. Its finally a chance to put this year's craziness in the background and be able to concentrate on family and other things.
What comes next is waiting for my MRI scan, which won't happen until some time in December. Between now and then I will also have to have the port-a-cath removed ( ow), and it'll have to be flushed every few weeks until it CAN be removed.
After the scan in early December we'll be able to see how everything went. I am REALLY hoping after everything we've done it'll be clear, so prayers and positive energy much appreciated in that regard.
We have a meeting with Dr. J on December 19th, which is when hopefully we'll discuss the scan results.
So for now... cancer treatment is done. For the next couple of months we get to focus on healing, building up my immune system some and enjoying end of year activities with Aiden and Chris - and all our friends!
Wednesday, 10 October 2012
So I did.
Aaaaand then they cancelled today's chemo. Apparently my neutrophils levels are 0.3, where normally they should be at around 1.2.
Chemo has been postponed for a week, and I'm debating whether to just see if I can get in to see Dr. J and call it quits altogether. In the meantime I have to be really careful about not being around anyone sick and if I spike a fever off to the ER.
Sunday, 7 October 2012
While in my house it will be perforce a low-key affair, I'd be remiss not to at least mention it.
I have been blessed with many, many things to give thanks to, and not just this year.
There have been so many challenges, so many insurmountable mountains that prop up... but ALWAYS there has been a helping hand, a ray of hope.
I'm blessed to live in Canada. My operation, my chemo -- everything was dealt with without bankrupting our family, as is the case in many other countries.
I had access to one of the top experts in the field, even if that meant I had to leave my province to get it.
I had just about the best outcome from one of these surgeries. I had little complications after, all things considered.
I was offered chemo. For all that I complain about it, and how hard it HAS been because my cancer is so rare and not blood-based, there's very little research that chemo does anything for it. BUT I was offered it and given it just the same, so give me the best fighting chances.
I have an amazing GP and oncologist, both of whom go above and beyond to help me beat this thing.
I have an amazing family, who took turns keeping me company at the hospital, who moved cities to be closer to Foothills and be able to help us manage MOAS and the aftermath.
I have an amazing husband, who truly is my best friend and soulmate, an amazing son that kept me going through EVERYTHING, amazing twin niece and nephew who brought smiles to my face no matter what.
I have amazing friends, who dropped food off when I was too sick too cook, who took Aiden for playdates to take the stress out of him and give him moments of joy , or looked after him during ER trips, who kept Chris sane and helped fundraise for research.
I have friends and family around the world, of every faith and belief, praying on my behalf and sending me good energy.
I have a stubborn, stubborn nature, and a fair amount of excess weight which served me well over the past crazy years.
I am thankful for family, friends, life and chances. I am thankful for all of the above and whatever else may come at us in the future? I am thankful for today. :)
Happy thanksgiving, dear friends.
Wednesday, 3 October 2012
After examining the side effects and issues ( like the blood pressure drops and passing out) in balance with the chemo benefits with my specific type of cancer, we've decided in conjunction with our oncologist to only do 6 instead of 12. More likely 5, even, which means that after the one next week I would be done ... at least for a while! My MRI won't be until December, which means until then we won't really know how effective the MOAS and chemo were, but we can certainly be hopeful!
At this point my body is still too battered from the major surgery and the chemo to take more; its a matter of making sure I can actually HEAL, and regain some of my quality of life in the process. After December's scan -- well, we'll see. We have to take our chances and navigate the options as best we can. I am hopeful that the December scan will be clear, and finally let me take a breath of relief, at least from now.
So one more, maybe 2. I can do this! I can push through the last little stretch, and then concentrate on healing my body and soul. I've gotten a Cooking for Cancer cookbook, to assist with nutrition, and I look forward to getting back to some level of activity. I have projects, and hopes, and need to get my body in shape to take them on.
This year was hell but it also showed me what my family and friends are made of, what my body can take and overcome. What my spirit can rise above. Bless you ALL for the comments, suggestion and support. Many of you that I don't know as well amaze me too. Your kindness and generosity of spirit in leaving a word or a thought, mean the world. That is the energy I draw from to get up and go, to face each day determined to beat this thing.
Here's to kicking the jelly to the curb!! <3
Saturday, 29 September 2012
Last week was spent in tests, and chemo. Had a couple of tests of my adrenal system and glands on Saturday and Monday, thankfully all okay. On Tuesday I had chemo, then Wednesday I had an echo -cardiogram ( sort of like a heart ultrasound) and Thursday the pump came off. Monday I have to go in again to get a halter, some sort of heart monitoring device to finish ruling out things.
I'm hoping it has just been the combination of things -- needing to sleep for about 3 days straight every cycle isn't conducive to enough hydration, or eating. Honestly my appetite just isn't there, especially when everything tastes different.
Just 2 more after this one! Aiden was in his school's Terry Fox Run, proudly wearing the Beating jelly belly shirt. He even donated the $5 he'd been saving for a treat, which surprised me. He is such a sweet, sweet little guy, and we are blessed in having awesome friends and family that have helped make this whole thing easier on him.
He wants cancer to be over, and I tell him so do I. 2 more, for this treatment... and then I guess we'll know at the December MRI how everything went. Can't put our lives on hold till then though, need to live them too!
Anyhow, laying down beckons again.
Sunday, 23 September 2012
Saturday, 22 September 2012
Tuesday, 18 September 2012
I got as far as mixing part of the batter, and then nearly passed out.
Luckily my mom had dropped by to visit, so she was here; I lay down on the floor with her help to try and keep from passing out. She called Chris, who called 911; the paramedics couldn't find my blood pressure, since it was so low, so off to the ER we went.
Happily I never did pass out completely; they got me on IV, took me in to a nearby hospital while Chris came home and mom followed. Aiden had already been picked out by a friend, as he was scheduled to have a class together with him - what a godsend! They were able to look after Aiden all afternoon while we tried to figure out what's up.
The good news is that after various blood and other tests, there's no infection ( yay!); although my white blood count was low even for someone on chemo it wasn't dangerously low after they did a manual count, so I got to go home eventually, at about 9 pm.
The not so great news is that as this happened a couple of weeks ago its probably not related to stomach issues per se, as there were none this time. From what the ER Dr. said he believes its the trauma of the operation and the combination of the effects of the chemo. There's only so much my system can take, so ocassionally it sends signals to shut down.
What I -should do- is what I did; lay on the floor until hopefully it passes. If I'm home alone with Aiden teach him to use 911 ( we have been, not fun). There were no infections, no respiratory issues, my heart is fine.... but given that its happened a few times, its likely it will continue happening.
So, I shouldn't drive. I should stay really well hydrated ( I am) and basically have a good long talk with my oncologist... but I can't prevent them. My body is just suddenly going to drop my blood pressure and pull this sort of stunt on me, more than likely.
Obviously, I'm not happy. I have a meeting with Dr. J, my oncologist, on Friday, and we will be discussing many things. Is it the right chemo? I know its the usual for colon cancer, and many other fellow PMPers have had the same regimen; that being said, I can't go the next several months worried about going to the bathroom on my own, or whether getting up to make a sandwich might make me pass out. Is chemo even something we should continue? I know the rationale behind it, but at the end of the day Dr. J started off saying there is no proven benefit, but it was recommended. If I do stay on chemo, should we adjust the dosage, change it altogether?
So many questions, and so far not enough answers. I haven't had my scan yet, I'm told before the 6 months date it would be too hard to tell with all the scar tissue. I don't know. I want to know if the thing is still in there, waiting. I want to know if putting this poison in my body has a point, because some days it really makes me wonder.
Autumn is coming, and then winter. How the heck are we going to manage that??
Friday, 14 September 2012
Monday, 10 September 2012
This year was so hard, and so low at some points, that we needed something positive to focus on. We need to make GOOD memories of this year too! I don't want us ( or Aiden!) to look back at 2012 and go "Oh that was the cancer year."
No. Cancer doesn't get to take my whole year. This was also the year we got to travel by car across to Alberta, and see the Drumheller museum. The year Aiden got to see his first Calgary Stampede and spend time with his baby cousins. The year we re-affirmed our love and commitment to each other, and to our son.
Fact is, I'm still going through things. Tomorrow is cycle # 3 of my 12 chemo treatments. One quarter down!
Until my scan in December we won't know for sure how successful everything was. It could be there's new replicating nastiness in there -- but then, if there was the treatment would be the chemo that I'm doing right now. I can't live the next few months in fear and dread; I don't want to.
So, we will push through the lows and the crappy days and weeks. I am blessed with a wonderful family, with an amazing group of friends. They have rallied around us all this while, and seeing Aiden's happy face yesterday... it makes everything worthwhile. He knows he's loved, and that there are people there for him. Not just his amazing family, but an extended group of friends that have made it possible for us to manage this year. Life is about what you put out into the world, and I am more and more amazed each day by the kindness of people around us.
I am counting on that 6 month exam to tell me I'm in the clear. I'm counting on more years next to my little guy, and next to my big guy. But you can't control life and the curveballs it throws at you, so all that I can do is the best I can -- and celebrate everything I can, build new memories.
What wonderful new memories from yesterday! Tomorrow I go to chemo but I've loaded the photos onto my tablet, so I can stare at them all day. :)
My sweet boy! :)
Tuesday, 4 September 2012
He was anxious to leave me, but I decided to come with since they were only there for about half an hour today. After he got to go spend the day in the sun with a friend ( bless you Colleen! <3 ) and will probably tell me all about his adventures once he gets home.
How is he in grade 2 already? He had to grow up a lot this year, but what an amazing little guy he is.
This stretch, I can do this. A few more months of this, and then 2013 is upon us - and this horrid year will hopefully be nothing but a bad memory.
Still, we're working on the GOOD ones. Looking forward to being surrounded by family and friends at the vow renewal, to making good new memories to look back to as well.
Sunday, 2 September 2012
It started out ordinary enough, until I went to the washroom... and nearly passed out. My arms and legs lost all feeling, I was drenched in cold sweats and the stomach spasms were pretty bad.
Thankfully we were able to call a couple of friends who came to the rescue and took Aiden for the day ( thank you P&P!!), and Chris managed to talk to the oncologist on call at the FVCC.
It appears one day of not going to the bathroom isn't a big deal to most people, but when you add that I'm on chemo and the trauma my body underwent, that one day of constipation basically forced my body into shock. Or, as I was trying to explain to Aiden later, overloaded my system trying to force a reboot ( alright, so I might have stretched the analogy there. He's 7.)
The dr. on call said NOT to go to the ER if we could avoid it; I'd be sitting there, potentially exposed to other pathogens in the place and there wasn't much they could do for me. I had to get the bowels moving with lots of liquid and some hardcore meds ( Senokot). As Chris couldn't leave my side lest I pass out, my sister drove some over before taking off again.
It was a very, very long day. I think was sitting there hours before all feeling returned and I could stand on my own to go back to the bed. Poor Chris was just trying to support and make me feel better. The rest of the day and last night was a mix of time in the bathroom and fitful sleep.
Well, I guess we begin to see more of these effects.
The thing that gets me its that I"m not really taking must of my anti nausea pills, only the prescribed ones right around the chemo, to try and prevent constipation. I'm drinking liquids like crazy, and still, one day that my body can't process them and it goes into shock. Doesn't exactly fill me with confidence over the next few months, you know?
Late last night I had a talk with Chris and Aiden both, because they'd been so worried. It WAS scary, for me too. Aiden told me if there were days he needed to stay home from school to look after me and maybe call 911 he could do that. It nearly broke my heart!
I explained that no, thank you honey, you have to be in school. That's non negotiable. But we did teach him again how to cal 911, as well as how to call his dad on the phone. I hate that its a skill he has to have now, but the fact is better safe than sorry.
Effects still seem to start right after the pump is taken off, so hopefully today will be a much better day. We had a phone call at 7:30 am, and there was no going back to sleep for me after that, bah.
Day by day, right?
Thursday, 30 August 2012
"Mommy, sometimes you just have to have faith on things."
... and with that, we bought the little runt. FFW after my surgery, and MEGA tomato was had. Looks like 2 more are in the way.
Well, just had my chemo # 2 on Tuesday ( or will finish it today when they disconnect the pump with the 5FU).
There have been side effects, but so far relatively mild. Again, I'm told that they may increase with each cycle, but for now they are manageable. The 'chemo brain' is the one that is probably getting to me the most ... inability to really concentrate, short memory lapses. It will go away once all chemo is done, but in the meantime it makes it very hard to get things done.
Met ith Dr. J ( my chemo oncologist) on Monday, and bloodwork looked fiine so we will proceed with the same chemo regimen. I had written down all symptoms/ side effects to discuss with him, as I didn't trust myself to actually remember them. They're all within the range of normal; he's happy that I've only had mild nausea ( since it means my current meds are doing a great job at keeping the worst at bay).
So, since I was asked via email about a few of the side effects:
- Cold dysesthesia - boy, that one is hard to get used to. My computer chair has metal bits, and when I lean against them I get a jolt. Unexpected, but we're learning ways around it. Thank you Ula for the gloves! :)
- Joint pain - Nasty, but only for the first couple of days. Dr. J said it was okay to handle with some ibuprofen ( and thankfully I have the extra strength one at home)
- Digestive disturbances. ;) Aren't you glad I'm leaving that nice and vague? Despite that, haven't lost more weight due to chemo yet...knocking on wood though.
- No neuropathy yet this cycle, yay.
- Extreme fatigue - hasn't kicked in yet. I'm really tired, but nothing like cycle 1. That, however, started the day after they took off my pump, so I'm thinking its coming over the next 2-3 days.
- Dry mouth - started after chemo pump last time, haven't had it this time yet. I've been using the humidifier in our room all the time though, and I think that's helped a bit. Will have the baking soda/ water rinse ready just in case, but no mouth sores yet. ( again, knocking on wood.)
- Assorted aches seem to have stopped, yay. My port finally stopped hurting and settled down.
- No hair loss yet, though I've noticed some thinning. I'm told with the chemo cocktail I take its probably it won't all fall off, so we have to wait and see.
We did get some handouts at the chemo class before I started treatment on how to handle different side effects (such as diarrhea, fatigue, etc -- if anyone would like me to scan them, email me and I can send then to you!)
Happier Thoughts and Celebrations
Needing to be reminded of the happier things in life, we are planning a small vow renewal in about a week and a half from now, celebrating our 12th anniversary. We've talked about doing one since our 10th, but didn't...so with this year being what it was, we thought it was a perfect celebration. Twelve years of being married to my soulmate and best friend, almost 8 of having our son join our happy team. :)
We will be thinking of all of you that have supported and encouraged us through this difficult journey, bless you all.
Sunday, 26 August 2012
I love Wash. I do. If anything this insane ride this year has shown me that you need that sort of will ( with a sprinkling of humour) to make it through the lows.
There are some fellow PMPers going through a very, very rough time right now. Its hard not to let that get to you, as its entirely too easy to see yourself in their shoes. But you also see the people who post of their cancer free anniversaries ( 2 years! 5!!! 11 !!! ); I focus on those. In five years Aiden will be getting ready for his bar-mitzvah; in eleven he'll be eighteen, entering university and ready to start a road on his own to some degree. I just realized that until I pass that 5 year milestone I won't stop looking behind me, seeing the shadow catching up to me. That, it seems is the new normal. You can't get away from the awareness of cancer, once it has touched you.
However, you CAN choose to stop living your life like its on borrowed time. Yesterday the amazing Neil Armstrong passed away. First man to walk on the moon! One of the things he was quoted as saying was:
"I believe every human has a finite number of heartbeats. I don't intend to waste any of mine." - NA
I am going to stop dwelling on the days that are low. There are days at the beginning of each chemo that are nasty, and rough. I'm told they get rougher with each cycle, to boot. But after that? There's a few days in between where I feel great and almost like my old self. :) There are GOOD days, where the sun is out, I get to play with Chris and Aiden, I get to eat what I want ( and have it stay in!), I get to make new memories instead of dwelling on the old. Yesterday I did just that, going for lunch and an afternoon in the part with my favorite guys.
Here's to the good days, and enjoying each and everyone of them! :)
Monday, 20 August 2012
In all fairness I shouldn't complain too much - so far it hasn't been as bad as I expected ( knock on wood!); I'm told by others in a similar regimen that it gets worse cumulatively, but right now I can only comment as to what I've felt to date.
Chemo was weird. Having something stabbed into the port wasn't a great deal of fun, but thanks to a suggestion from the support group next time I will come prepared with EMLA cream. Emla numbs the spot; you apply it an hour before getting jabbed ( and cover it in saran wrap or something similar), or use the patches. When I asked the nurse about it she agreed it was a great idea... in fact in Canada it isn't even prescription, you just ask the pharmacist to get it! I wish they told you about it in advance, but I'm passing the info along. No sense gritting your teeth through chest jabs if it can be avoided!
Once they hooked me up to the port the first thing they gave me was some sort of supplement, actually. I was told its something to help prepare the body a little better, so that the effects of neuropathy won't be as bad. I'm hopeful it works! I can't imagine trying to draw with my fingers numb.
The biggest surprise came when they described the side effects of one of the chemo meds I'm getting, the Oxaliplatin, and mentioned something called Cold Dysesthesias. We hadn't heard anything about that, and were given a handout then to read. Basically, the oxy makes me REALLY sensitive to cold for about 5 days after each infusion. How sensitive you ask? Well, if I need to get something out of the fridge I was told I should use an oven mitt!
- From their write up, some of the effects:
- Tingling of numbness in hands/ feet, cramps
- tightness in jaw or throat/ difficulty swallowing
- abnormal pain sensation in your tongue
- difficulty breathing, like you can't catch your breath.
JOY. Thankfully being prepared in advance helped me avoid most of these, as much as I could. My first treatment was during a particularly nasty heatwave here, so no cool drinks/ no A/C was driving me a little crazy.
Chemo Pump/ Bolus
Admittedly that was an odd sensation. Because of my less than ideal veins I have to have the chemo every 2 weeks via a combination of IV at the cancer center and a pump I take home for 46 hours. This particular methods delivers my other medication, the 5 -FU. After the 46 hours are done the bolus has pumped all the chemo through my port and deflated, so I have to go back to the center to have it taken off. Its awkward and hard to sleep off ( I basically have it on a fanny pack!) but not as bad as I'd anticipated.
I get the expression BONE TIRED now. There were a couple of days I don't think I got out of bed. I slept fitfully on and off, but mostly it was just sheer exhaustion. I couldn't stay up. I have been taking my nausea medication pretty regularly and one of them does also contribute to that, I imagine. Plus without the HRT I have menopause and its joys to contend with as well, so... I was pretty much in bed for a few days.
Happily though, ( and again, knocking on wood) the nausea has been mostly kept at bay with medications. I can feel my mouth dry again, the tastebuds changing ( like they did in the hospital) but as long as I am not throwing up like crazy like at the hospital, I am content.
So, starting off week 2 after chemo. With any luck the effects for this one are mostly done, so one cycle down and 11 to go!
Monday, 13 August 2012
When I'm stuck with a day
That's gray and lonely
I just stick out my chin
And grin and say, oh
The sun'll come out tomorrow
So you gotta hang on 'til tomorrow
Come what may
- Annie the Musical ( "Tomorrow"
Having nightmares about chemo. Clearly my subconscious is not getting the hint !
Before anyone worries- nope, I'm not down, but I am nervous about starting chemotherapy. I hate unknowns. Even when I was diagnosed I figured I'd find a way to handle things... researching outcomes, and treatments, and just reading the blogs and experiences of other people out there helped a lot. I wasn't afraid of the cancer.. I was afraid of the unknown.
I had my surgery with the best possible outcome, and I know that chemotherapy is just another step in getting rid of the cancer, hopefully for good. 2012 was the year to take it all on, and that's fine by me. If anything watching the Olympics has reminded me again the amazing feats that a body is capable of, that sheer determination and dedication can produce.
However, I would be lying if I said I'm not dreading the actual treatment, and not knowing how it will affect me. Will I have the same horrible nausea and sharp weightloss as I did just after surgery ? What about all the other possible side effects one reads about? Then again, some people go through it relatively unfazed... so which one will I be? And what will the next half year be like? I have no answers for that.
I have a vague idea as to what to expect, thanks to the online support group that I belong to. They are amazing people, and many have gone through chemo ( different regimens, and with different results and side effects.) But at best that's what it is... a vague idea of what MIGHT be. I just remind myself that I hate the cancer more than any side effect that might come my way!
Yesterday I went to a friend's wedding, and was reminded of all the life and love that I am lucky to have. Chris and I are planning our own celebration in September, a vow renewal for our 12th anniversary. We are also making plans for something else to celebrate the end of chemo once it takes place, hopefully, in mid January. As much as the mind seems to focus on future dread, I choose to derail it and re-focus in on wonderful future projects.
Tuesday, 7 August 2012
The past couple of weeks I have heard about several people who lost their battle with cancer, and I've had a few moments of less than happy thoughts. Fact is ... yes, people do die of cancer. But not everyone that gets cancer does. It IS possible to be on remission, it IS possible to not wake up and have the first thought of the morning be about cancer.
In the low days its hard to picture a day where the ghost of cancer won't be everywhere, where the side effects of treatment, or the pain of surgeries ( or the cancer itself, in some cases) won't be there. But I have met wonderful people who underwent my same surgery and treatment and are cancer-free several years later.
I have to believe that can be my future too.
I got through the rotten days by seeing the picture of my son's smiling face, and his 'Mommy, Please get better soon.' I'm trying to. So, chemo, and whatever else.. you are not going to keep me down if I can help it.
I'm bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away
You shoot me down but I won't fall
I am titanium
You shoot me down but I won't fall
I am titanium
- D. Guetta, "I am Titanium"
Saturday, 4 August 2012
Yeah, no. Apparently I had something much smaller called a central line, and my PICC line.
Yesterday we went in and had that port put in at VGH; overall we were at the hospital for about 5 hours. Much of that was waiting in the queue and prep, and then about a half hour in recovery afterward.
During the prep I was reassured of why I was choosing the port; my nurse burst the vein in my hand ( OW!) and the head nurse had to come to put another on this tiny vein on the side of my thumb. She was a brisk, no bs sort of woman, and I liked her. In fact, I liked her a lot once she pulled the failed IV off the first site and secured it into the second location.
I met with the surgeon and his resident, who dispelled my ideas about what a port-a-cath was and explained a bit about the procedure before I went in. There were words like 'large' and 'jugular' in there, and I'm pretty sure I stopped listening at the jugular part. I have this fear of sharp things going near my veins and arteries, see. To hear them talking about putting this ball like device under my clavicle and a tube going up into the aforementioned vein... well, had I not been in a hospital gown and with an IV already I would've gotten up right there and then and ran away.
Not long after ( probably seeing my longing glances towards the exit hall) I was wheeled into surgery. I was given local anesthetic via IV and them more put with a needle on the chest area; I felt the pokes, but not the glorious sleepiness I was looking forward too. I did get to hear the surgeon's music throughout; mostly it was 80's music, but as they got onto the main part of the surgery the Rocky Horror's "Timewarp" kicked into full swing. It was a little surreal, to say the least.
I'm glad that though I was conscious through the whole thing I didn't get to see it, as they put this tent over your head to presumably keep the site sterile. I emerged sore, covered in a large bandage on my chest, one on my throat and this pink stain that makes me look a little like an underdone lobster. The night was not fun and Chris had to put up my grumbles, as to be fair it was pretty painful; today I managed to sleep on and off, go for a walk and have a manageable amount of pain I'm handling with the advil.
I'm just happy that it's done, and I'll be happier once I can take the bandages off!
For the curious, here's what a port-a-cath looks like: http://www.sir.net.au/portacath_pi.html
Thursday, 2 August 2012
My chemo is officially scheduled to start on August 14th, and go every two weeks after that. We got to go to the chemo information session yesterday, and got some good general info. Now that we know its coming I wish it were closer, so I could just get it over with.
Still adjusting to being off the hormone replacement therapy. I asked an oncologist at the session and she noted that they don't like having people on it, as it increases the chances for breast cancer. Like I need another one!
For now, enjoying my balcony's tomatoes and trying not to think too hard about what may lay ahead. No sense in letting my imagination run wild; whatever comes we'll deal with, somehow. And if I lose my hair... well, might be a good chance to be a redhead for a bit! :)
Saturday, 28 July 2012
While being at the hospital during the particular low days I remember trying to focus on the things I wanted to do, the things I missed most being there. Every summer we go and blueberry pick together, and all I could think of was how much I wanted to be home for Chris' birthday and go pick them together.
For us a normal summer was that - lazy days of exploring nature, enjoying the blueberry bonanza and our time with each other. So, with chemo looming next week we thought this weekend was the perfect chance! Its the first week of the blueberry season, so only a few were ripe; still enough for a couple of buckets though! I was pretty sore afterward, but loved being in the fresh air and the feeling of a little bit of normalcy.
Still can't eat the blueberries, but hey, I can at least pick them! :D
Friday, 27 July 2012
Today though, I had my appointment with Dr. J, my chemo oncologist.
The short version is that on Dr. T's recommendation ( which he wants to follow) is for follow up chemo; basically the same regimen given for colon cancer. When I was in Alberta I didn't have EPIC ( the follow up 4-5 days of IV chemo while at hospital just after) but only HIPEC. I'm glad in the sense that I think it would've weakened me to the point that it may have hindered my recovery; right now I feel like myself, and I love returning to some of my routines.
So, because of this the follow up chemo is what I will be having over the next six months. Basically starting next week ( still waiting on exact date) I will be having 12 cycles, one every two weeks. We tested my veins and because they are pretty weak and inadequate ( argh!) I will have to have another port put back in.
In short, right now we are waiting for the appointment at either VGH or RCH, hopefully for next week, to get the port put in so that I can start chemo. I will be on 5FU ( fluorouacil) and oxaliplatin, as well as leucovorin. Its too bad my veins were unsuitable for the mix of IV + tablets regimen, but what can you do -- after 6 months I need to make sure my veins would be able to handle it.
Had more blood tests done, as well as another chest xray... as apparently it the notes it showed I'd had an 'air bubble' in my chest from the chest tubes while at the hospital. Eh? First I heard about it, but I'm glad he was looking into it. In fact, I have to say I really like Dr. J; he has been so proactive, and the one to move to get me the CT scan AND the colonoscopy.
He also asked me to stop the hormone replacement therapy, as apparently it doesn't really get along with the chemotherapy drugs. I think that might be a rough one, so apologies if my moods end up being a little all over the place over the next few months.
I am happy he is so on top of things, and glad that we have weapons we can use to try and prevent recurrence. I had, however, hoped for August as a month to recover and enjoy with my son and husband; I don't want this to just be the summer of cancer for him. As that plan seems unlikely at the moment we're making the most of this weekend and enjoying our summer traditions: Blueberry picking and swimming. At least once !:) Aiden was lucky this past week too; a friend of my sister's treated him to a tennis camp, and he had an amazing time. Nothing like seeing his excited, happy little face!
The next few months will be an interesting challenge...
Tuesday, 24 July 2012
Surprisingly, Dr. J called me himself this morning - I was surprised, as I'm not scheduled to see him for another two weeks. He thinks we should start chemo sooner rather than later, and gave me an appointment for this Friday. Looks like I might be starting chemo much earlier than I thought? So much for a break, but hey -- if that's what it takes to make sure it doesn't come back, that's what we'll do.
Sunday, 22 July 2012
Went to my GP on Friday, who looked me over and got to hear the whole tale. She is absolutely AMAZING and one of the reasons this whole madness has turned out as well as it has so far. Dr. Tn was delighted to hear how well surgery went, about the prognosis and plans for further chemo.
She looked over all the lab results from the hospital and ordered some new blood work here, since from what she could tell I am currently anemic. She also prescribed a steak, which I gleefully ate on Friday night. :) Depending on the results ( though I snuck a peek online and yeah, it would appear that I am) I may also need iron supplements, but we will see.
I've never thought about anemia - I mean, I used to donate blood in university, and my iron was always stellar. It then dawned of me that donating pretty much anything ( body wise) is off the table now, and that made me feel down, actually. I've always wanted to be an organ donor, and without the transfusions I was given at the hospital I might not be here now. I hate that I can't give back that way, but it just means I will have to find other ways of paying it forward.
Saturday was a GOOD day. I was able to have cake! I went with Chris, Aiden and my mother and sister to celebrate his birthday, and after stopped briefly at SFU ( our alma matter and where we met and married ). They were putting on a Japanese summer festival, and some artists had booths, so I had the chance to see my friend Molly and Aiden could get some Pokemon goodies. I walked around for a good 45 mins there, and despite being a little sore felt like myself.
I am down to just taking Advil for pain, and none of the other meds except for the hormone replacement therapy. My eating habits are still being tested, but I try to give my stomach something new to try each day. Sometimes the small victories trump the small defeats!
My Hope garden grows strong, and we may have cherry tomatoes first. Thank you Jim and Melinda for taking such good care of them!!! I hope that by the time they're ripe I can actually eat them.
Wednesday, 18 July 2012
Still a long road ahead, but bit by bit. Some friends of ours took care of our Hope Garden, so its huge and lovely. Tomatoes coming out everywhere! None are ripe yet, but I look forward to seeing them get to that stage.
Have an appointment with my GP on Friday, and the one with the chemo oncologist on August 8th. After that we should have an idea for the chemo schedule.
In the meantime, the weight loss seems to have leveled off; still no real appetite to speak off, but eating all the same. I'll be making an appointment with the nutritionist at the cancer center to help me tackle food issues, but for now eating small portions and mostly sticking to a low-residue diet seems to be helping.
I feel tentatively well. Exhausted, really sore -- but none of the weight of the cancer, if that makes any sense. Before they took out the tumours I just felt... GREY, as though there was a zombie in my body eating me up from the inside. Now I don't - I'm just recovering from a harsh surgery, trying to become stronger to take on chemo.
Re-examining my life and projects, and switching some priorities around. For the next year or so it will be all about healing, and about spending time with my loved ones too.
Monday, 9 July 2012
Things were much much slower today in the ER. When we finally saw the doctor (after a three hour wait) and after many interruptions (for trauma cases) the ER doctor informed us that it was a blood clot in a superficial vein. Apparently the blood clots they are concerned with are those in our deep veins where there are no valves to stop the clot from traveling to the lungs. But with a superficial vein a valve will stop the clot from going anywhere. It essentially shuts off that vein which will no longer be used. Therefore a blood clot in a superficial vein is nothing to be worried about.
The suggestion was to use an anti-inflammatory (Advil) and a hot compress until the pain and bulge went away. And that's it. Well at least we are heading home this weekend on the 15th. As far as complications go, this was an incredibly minor one though it did scare the beguses out of us.
Saturday, 7 July 2012
The good news is that the painful little ball doesn't appear to be a blood clot. They think its a ganglion cyst. She came home with her arm in a splint and is frustrated and in pain, but relieved it wasn't a blood clot.
The doctors and nurses were amazing and she has an appointment Monday morning for an ultrasound and will potentially have minor surgery on her wrist later that day. So she won't be typing much for a little while. At least as far as complications go its a minor one. Here's hoping we have a better night.
Wednesday, 4 July 2012
I have never been more thankful for having extra weight on me; ten days after surgery they weighed me and I had only lost ONE pound. I was on TPN and fluids.... And then I had to relearn how to eat, had the throwing up days... I weighed myself today and in the past two weeks i have lost TWENTY TWO pounds.
I kept wondering why i looked so odd to myself, and now I know. Hopefully trying to force feed myself and the imodium will help! Fresh vegetables are definitely not staying in, bus soups, and pasta... And this mornings croissant all have done okay.
Another thing dr.T gave me, bless him, was a prescription for hormone replacement therapy. With all the bits gone now my emotions were haywire...sudden menopause is not fun, so hopefully this will balance it out.
Day by day a little more alert, a little stronger. Still afraid to believe that ite actuqlly gone... The horrible goo apparently took bits of my liver too. I knew I felt it up there gnawing! For now dr.T will coordinate the follow up chemo with dr. j... Probably in September, as my body has to have recovered from the MOAS first.
Trying to plan ahead a little now...promised Aiden I would make a kid's book with him, and I want to make one about PMP for kids to understand a little of what parents go through, bu I have to research a bit. I am looking forward to finishing up chemo this year and leaving it behind....!