Saturday, 28 July 2012

Blueberry Picking

Today we went blueberry picking, our family summer tradition!

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

Chemo Plans

Well, the appointment with my GP last Friday went well;  I am still a bit anemic, but much better than before. Because of  iron supplements would probably give me more issues with digestion than I have now she didn't prescribe them, but rather we are going to focus on improving it through nutrition.

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

Best Laid Plans....!

Dr. Tn's office called me, as they want a follow up appointment to discuss the lab results.  Pretty sure I'll end up with the iron supplements, but hey, if it beats the anemia I'm happy.

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

Anemic, eh?

Well, that explains why I'm so tired... other than the whole major surgery part.

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

Home!

Home in BC now, sleeping in my own bed. Its so glorious to be home!

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

Superficial?

After the lengthy stay in the hospital on Saturday we were back in the hospital bright and early Monday morning for the first available ultrasound.  The ultrasound tech and doctor agreed that it was definitely not a ganglion cyst, but a blood clot as we first feared.  So back up to the ER we went.

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

Argh

Hi Chris here, got up at 5am to go to the ER as we thought Apis might have developed a blood clot. She had gotten this painful ball (roughly small marble sized) on the back of her wrist and after we called the nurses hotline they recommended we go to the ER just in case. We got there at 9am and left at 4pm. 

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

Day by day

The appointment went wonderfully, thankfully. I am healing faster than expected, and thiugh ther are still the stomach issues those should be easing over time. I just have to be patient and try to eat as much as possible. Dr.T suggested imodium to make food stick around longer in mysystem... As I did lose part of my bowel currently my body is simply not retaining food long enough to really get all the nutrients out of it. He also prescribed a multivitamin.

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....!

Tuesday, 3 July 2012

Bless you, REZREZ family!

Last friday Chris' coworkers held a fundraiser for the tom baker center in our name.

Bless you!!! Bless you for always treating us like family, for being Chris support network during these difficult days, for being amazing, generous, wonderful people.

Thank you for letting us be stronger because of you, and helping to raise awareness and funds for lifesaving research.

everyday i am reminded of the strength and kindness of people around us... Chris is so lucky to work and be friends with so many amazing human beings.

Sunday, 1 July 2012

Learning to eat

Happy canada day! .

I have a bit more energy throughout the day, though it comes and goes. I wasn't liking the feeling of codeine... Hard enough to move about, but all groggy from that was a no no. So far managing okay with just ibuprofen, though some times are better than others.

Eating is still a challenge. I amtaking my anti nausea and other meds, which has definitely helped... But the digestive system is still trying to sort itself out after all the manhandling. There is also the issue of appetite, which simply isnt there...it feels so odd. .

I have always loved food. I enjoy cooking it, eating it. I love trying to grow our veggies, going blueberry picking... Social ocassions over baked goods or a dinner with family are wonderful. Now though, food is this foreign being... I look at it and reecognize it, but my body just doesnt want it. I may have to look for alternatives for creating appetite; for now every meal I try to introduce a different food and see how it goes. Pasta seems a winner! .

What is this emotions thing?.

I am awake and alert more and more each day. Some are a better times thanothers; since now my uterus and the remaining ovary and bits are gone, I think the effects of early menopause are starting up. I see dr. T on tuesday, so hormone replacement therapy is one of the things I will ask about. .

Other possibility is that i am just shell shocked, honestly. Up to this point i had jutted up my chin and just marched forward, not really letting myself think too hard. Now there is a mix of hope and terror trying to balance out each other, and I suspect that may take a while. Chris has helped me through the moods... My calm, patient love.having my family here, hearing Aiden playing with his cousins...its amazing. Day by day!!! .

Any cards, drawings,messages... Thank you!!!! It makes my day to hear from you guys. I hope to make a scrapbook of all of them as I recover, to remind me of all that amazing love in the grey days. Still at my sisters, for mailing them. chemo will be in the fall, but not thinking about that now...day by day, as colleen told me...a little stronger, a bit more like myself.