A nice upbeat video to help start tonight's festivities.
Thursday, December 30, 2010
Yesterday I went in have my blood work done. Then while waiting to see the Onc, the trials nurse came in and said … oh don’t get up … I want to check your bp first. It was 88/66. Yikes ! that’s way too low.
We then went into the exam room where we went over the 50 odd some questions on what side effects I was experiencing this week. She informed me that my blood work indicates that my liver function had not improved from last week so we’ll just have to wait another week … off chemo of course … and I will enjoy more of my chemo vacation.
A short while later, my Onc came in … he did a quick exam that included listening to my breathing and checking the inside of my mouth with me doing the aw-test. He did a quick feel of my ankles and feet checking for swelling. Then he checked my abdomen, pressing down around my liver looking for any tender spots. There was one small spot but everything else was ok.
He then talked about my low bp saying that I should stop taking Amlodipine immediately and then if I don’t get my bp to where the top number is close to 95 within the next 4 days, I should also drop the Ramipril from 10mg to 5 a day. And of course, we’ll just crank it all back up when I get back on the Brivanib.
Wednesday, December 29, 2010
Well, I’ve officially been off Brivanib one week and I thought I’d share with you how things are going. I’m feeling less lethargic and wouldn’t have been able to handle all that’s happened on chemo.
Still require tons of sleep but I’m not as chilled in bed or out. I was in bare feet all day yesterday with no need for a blanket and heating pad. wooohooo!
My appetite is up a bit and it’s not so reactive. I now can eat a greater variety of foods, still in small portions, without having that immediate gurgling in my abdomen. And today was the first day for a regular bm and I can drink fluids without that nausea feeling coming on.
My ankles are slightly less swollen and a friend mentioned that my face wasn’t as puffy. There’s a little more interest in doing a few things now too. And getting up off the chair is less of a chore. Shortness of breath is better tho I still cough way too much.
With all the festivities going on, I sort of forgot to monitor my bp. So this morning I checked it and it’s 96/77 … a little low. So if that happens, my Onc told me to cut one of my bp meds in half.
The only thing that doesn’t seem to be resolving itself is my urine, it's still a dark golden color. I hope to drink even more fluids in the next few days to dilute that back to normal.
Tuesday, December 28, 2010
Yesterday we visited with long time friends B and D. We ended up being there longer than any one of us expected. I was feeling pretty good the whole time. After a while the men got into their laptops and other toys and us girls just talked and occasionally watched the fish swim around in their huge aquarium.
B and D are such gracious hosts … always an ample supply of snacks and drinks and they even had a blanket already for me to wrap myself up in. They know me too well.
Even tho we got home at a descent time, I still ended up sleeping a solid 12 hours.
Monday, December 27, 2010
Well, it was another wonderful afternoon and evening spent with family. In the morning, I followed the same regimen as I did yesterday except my usual little nap was cut short because we had to leave.
So after dinner, we all moved to the more comfortable chairs in the living room. I hogged the whole couch by putting my feet up and then my sister came by with a blanket to cover me up. Thanks sis, I’ll just close my eyes for a bit and listen to what's going on.
I wasn’t listening too well because I fell asleep and woke up an hr half later. I really do like how I can nod off practically anywhere. Then I just joined in the conversation and no one said boo.
Without these naps, I’d just power out and be too tired to enjoy what’s going on.
Sunday, December 26, 2010
Yesterday D and I went over to my sister’s place for Christmas dinner. My major preoccupation is to do whatever it takes so I don’t have any stomach or bathroom issues. And make sure I’m alert enough to take part in conversation and to be sociable.
I started off yesterday with white bread for breakfast. Then I did my blog and got it ready to auto post at 11:30. Then I had shower, got dressed and organized myself. I did this all early enough to have an hr nap before we left. My sleep it still not up to par and having a good little nap, I’ll have enough energy to make it through the day.
So at my sister’s place, when it came time to sit down and eat, I chose white turkey meat, one meat ball, a small piece of ham and some mashed potatoes. I decided it was best to take two Imodium after just a couple of mouthfuls. I only ate about half of what I put on my plate because, it’s best that I quit eating as soon as I get the slightest feeling of being full. It must have been the right amount because I was able to stay out of the bathroom till this morning. After dinner, I politely said no to any drinks and just sipped on water.
Today is another dinner at my other sisters house … I plan to get ready the same way too.
Saturday, December 25, 2010
While visiting my Onc this past Thursday, we talked about a few other side effects I was experiencing. My feet are swelling up. He and the trials nurse wanted to have a close look at my feet and I felt bad for them as they pulled my compression socks off and back on. They got a bit of a work out doing that. The Onc then said … oh this isn’t too bad … how are your shoes fitting … I said they’re not. I can only wear my runners now and even they are bruising my ankles. I guess some Boxing Week shopping is in order.
Another thing we talked about was my tender mouth and difficulty swallowing. I was thinking it was due to the fact that I had a stuffy nose, I tended to breathe more through my mouth which seemed to dry everything out. The Onc said that my tender mouth and difficulty swallowing are known side effects of Brivanib. The nurse asked if I had any sores in my mouth and I said no … it was just sensitive to things like toothpaste, pop, certain foods, and hot and cold.
I also mentioned I was hearing strange sounds in my ears but chemo brain here missed what they said about that. I’ll ask again next week.
Friday, December 24, 2010
Yesterday I had my nine week appointment at the clinic. The appointment usually starts with the clinical trials nurse going over any new side effects I may be experiencing. We barely started when the Onc came in, sat down and asked how I was feeling. I said that two days after starting Eltroxin for my thyroid, I was sleeping better. D noticed it too; he said he felt my sleeping was much more relaxed. We ended that bit of conversation with the nurse asking me exactly when I started taking Eltroxin.
The nurse asked me about nausea and diarrhea … I said I have it pretty well under control but then I’m not eating that much. Looks like my blood work reflected that because the Onc suggested I start taking Imodium first thing in the morning and every four hours after that. The point was I needed to get more nutrition into me.
After the nurse went over her long list of side effect questions, she went over the blood work. One liver function number is especially high, the same number that just about prevented me from getting in the clinical trial. Both the nurse and Onc said this is a known chemo side effect and is expected but it also means you need a small chemo vacation … one or two weeks off of Brivanib for your liver to recover.
Once again they reassured me that is something to be expected, so don’t worry. She then asked me to hand over all my Brivanib pills. Now I understand why I have to bring them to every appointment.
We scheduled an appointment for next week for more blood work.
Thursday, December 23, 2010
About a week ago my mets friend K from Calgary sent me an email with a link to a discussion group on BC Mets where a lady posted a comment to the discussion about Brivanib. I was very interested in M’s story and decided to follow her. It’s helpful to know other people’s experiences with this drug and gives me some piece of mind.
In the discussion group, M said about 8 weeks ago she started a phase 1 clinical trial with Xeloda and Brivanib combo. Her first issue was her bp spiked to 200/100. I had a similar experience with my bp jumping to 170/101. We both had great results on some aspects of our blood work after just three weeks on Brivanib and our tumours or tumour markers have shrunk ~30%. Our Oncs measure our cancer differently.
Where things change up a bit is that she has had to go off Brivanib for five weeks because her Onc was having difficulty getting her bp under control and other aspects her liver function quadrupled. So out of eight weeks, she has actually been taking Brivanib for only three.
Brivanib appears to be a finicky drug and I only hope that my blood work today doesn't show my already high liver function has gone too high and that I can continue chemo. I’ve been checking my bp regularly and it’s ~122 / 75 with the meds I’m on.
M and I now regularly email each other. We’re breaking new ground here and it’s sure nice to have a trials buddy to help go thru this.
Wednesday, December 22, 2010
Today I made my list of aches and pains for the trials nurse when I see her on Thursday and I thought I’d share it with you. I’m going to say that my coughing continues … better at times and worse at others. I did have a bad cough before I started Brivanib; funny thing tho, that it got better, much better in fact for a few weeks and now it’s back to where it started.
When you’re on chemo, some of these symptoms creep up on you ever so slowly that you don’t really know when they started but that is always a question the nurse asks … when did this or that start? Well aprox Dec 10, I developed a tender mouth and a sensitivity to hot and cold. There is tenderness around my teeth as well. Some foods are more irritating to eat and if I bit my tongue, for sure it takes longer to heal.
Food doesn’t go down smoothly anymore either and my throat feels restrictive. My nose has been stuffy since before I started Brivanib and it really stuffs up now during the night. So now I breathe through my mouth which tends to dry the whole works out.
Sometimes when I’m lying down, I hear odd sounds in my left ear … one being something like camera shutter. Another being a big over head door slamming shut. I will mention that I was sick for the very first time since starting Brivanib. Also my feet and ankles continue to swell, so much so that since Dec 15, there's a skin wrinkle where my shin and ankle meet.
Tuesday, December 21, 2010
Here is a five minute video put out by American Association for Cancer Research. It’s a fascinating video about the accomplishments by all cancer researchers so far.
The mission of the AACR is to prevent and cure cancer. Founded in 1907, AACR is the world's oldest and largest professional organization dedicated to advancing cancer research.
Just a note of caution, you may want to turn down your speakers or even shut the volume off as the music is quite loud and repetitive and there is no speaking.
Monday, December 20, 2010
Yesterday I went through my normal morning routine, except I would not be having my early afternoon nap. It’s my mother’s 86th birthday and twelve of the family got together for lunch at a local restaurant to celebrate. As we all gathered around, I thought what a wonderful family I have. Everyone was so full of life … chatting with each other, catching up on all the news. My nieces and nephews are all couples now and have grown into fine young adults, with careers and talking about their great plans for the future. Mother just sat there glowing as she looked around the table surrounded by her children and her grandchildren … she was just so proud.
Because food is such an issue for me, I decided to look up the menu on the web the night before … thinking if there would possibly be anything I could order. In the end, D and I shared a burger and fries because that was what was popular at our end of the table. I had two bites of his burger and about four fries and it sat well with me. My thoughts now are that I can probably eat most anything as long as the portions are very very small. I even had one bite of cake to help celebrate the occasion. And everything came out ok … in the end … this morning.
As soon as we got home, I hit the sack for a nice long nap.
Sunday, December 19, 2010
Yesterday morning I woke up feeling a little off… can’t really describe it but I was off. I got up and took my Brivanib pills with a glass of water. I then laid down for about an hour and got up and took three bp pills and sat at the kitchen table. D was making coffee at the time. A couple minutes later I said to D, wow those made me feel nauseous today. About a minute later I said get me a plastic bowl. How big of bowl would you like? NOW I said. I went from feeling fine to vomiting in no time flat.
I wanted a bowl to see which of the pills would come out so that I could replace them. I didn’t think there was time for any of them to dissolve but who knows. There was one bp pill that was still intact which I replaced when I took with my thyroid pill a half hour later. I’ll gotta tell ya, it felt so good to get that all over with so quickly. This is the first time I’ve been chemo sick since 2000 when I was on FEC.
On the bright side, my last three bm’s have been near normal. whoo hoo !! I’m still very careful of what I eat tho; no dairy and keep the portions small. I just nibble and give my stomach time to see how it likes it.
Saturday, December 18, 2010
On Monday I mentioned I was struggling with my sleep. I said, I’d wake up breathing real hard ... trying to get some air in me. D described it as I start breathing shallow then I take a whole bunch of deep breaths to recover. So that morning I emailed the trials nurse to see if they could prescribe something for me to give me some relief. Between days off and telephone tag, it wasn’t till late yesterday I picked up my prescription for Eltroxin (levothyroxine) … a thyroid medication. I was not expecting a thyroid medication.
According to WebMD, Eltroxin is used to treat an underactive thyroid (hypothyroidism). It replaces or provides more thyroid hormone, which is normally produced by the thyroid gland. Symptoms of low thyroid hormone levels include tiredness, muscle aches, constipation, dry skin, weight gain, slow heartbeat, or sensitivity to cold.
I’d have to say I have many of those symptoms … especially the fatigue and feeling cold all the time. If this little pill could get rid of the chills and give me some more energy, I’d be thrilled.
I see the Onc Thursday so I’ll find out more then.
Friday, December 17, 2010
Last Wednesday about supper time, the door bell rang. D went to see who it was … turns out it’s a delivery, I was getting flowers … a huge boutique of flowers. Not only was it huge but the whole thing was heavy too.
After putting the bouquet on the dining room table, we carefully unwrapped it from the many layers of plastic used to keep it warm as it’s carried from the heated van to the house.
Oh my … it’s a Christmas flower arrangement with fresh greens including cedars and pine bows, filled with Holly, red roses, red decorative Christmas balls and whole bunch of flowers I’m not that familiar with. And when I came back into the room with some water, I noticed that the scent from it all had filled the room, perfect for the season.
It turns out they’re from my sister in the USA. Sis, thank you so much for the lovely flowers, they look gorgeous. We set the bouquet up in the living room right in front of the fireplace. They not only lightened and brightened the room, but my spirits too. You have always been so supportive and kind.
Thursday, December 16, 2010
Yesterday we had our Sears BC Coffee Group Christmas Party. Our original plan was to have a Christmas party in J’s hospice room on December 15th as that seemed to work best for everyone … but time was against us and J passed away on December 7th. We were all kinda thinking that we’d just forgo this year’s party but T, J’s daughter said these parties were very important to J and that she wanted us to continue with them way after she was gone. In fact she had already purchased Christmas gifts for the gift exchange back in September. So at the last minute, Irm offered up her home to have the party.
T joined us and it was so fitting to have her there to hand out J’s Christmas gifts. We shared stories and shed a few tears and looked at pics of happier times as we talked about J. After munching on some finger food, we waited anxiously to see what this year’s dessert would be. Irm is an amazing dessert maker and she wowed us once again … trays and trays of German Christmas baking. Oh my! it was amazing. I had to limit my munching because my stomach but I’m sure the other gals ooo’s and aaaah’s could be heard down the block.
After a while we moved over to the living room and sat on the comfy soft sofa and chairs with our coffees. Gradually eyeballs glanced over to the tree in the corner and we decided it was time to open the gifts. Then the cackling and laughing really got going. Time to enjoy the moment, it was so festive.
Wednesday, December 15, 2010
On Monday afternoon, a handful of our mets group gals got together for coffee. Our support group had officially ended last week and we decided to meet casually. There were four of us, which is about half of the group were there … which is still good. As we settled in with our coffee and tea, the conversation soon shifted to cancer.
We talked a bit about whether we were in denial or not, something we didn’t talk about at the clinic. We all agreed that’s a tough one to figure out. One gal said, I don’t know if I’m in denial or not. I still feel so good but when my Onc stands right in front of me and says that I have 6 to 18 months to live … 18 months if you take treatment and 6 if you don’t, that’s really hard to wrap your head around. And then another gal says, I’ve been thinking that this is my last Christmas for 11 years now. Wow .. how different things can be.
We then talked about how bad we felt about leaving our jobs so abruptly, leaving those behind to figure out who is going to do your work. I know I left my job the same day I found out how bad my cancer was.
We ended up talking about our plans for the holidays and that sometime in the New Year we’ll email around to meet again.
Tuesday, December 14, 2010
The clinic likes to keep tabs on my lymphedema arm and yesterday I had my physiotherapist appointment. I’ve been so fortunate not to have anything major go wrong so I only need to go twice a year. She measured up both arms to compare the two in size. My right arm has the edema and it’s only 4.5% larger than my left. Seeing how that is my dominate arm, she said that’s pretty good.
I was a bit surprised that it hadn’t really changed from my visit in June because I’ve started a new chemo since then and the edema is puffing up my ankles. I assumed my arm would follow but I guess not … yea. No change in the size of my glove or sleeve.
When I mentioned to the physiotherapist that my ankles were puffing up … she said you know what you need? And I said … some diabetic socks? No, you need some airplane knee highs. They are light compression knee highs that people like to wear when flying. I said guess what? I have a pair of those leftover from my trip last summer.
Later on I was thinking, why didn’t I ask her the difference between the $7 flight socks and the $27 ones.
Monday, December 13, 2010
I went to sleep last nite feeling pretty good but it didn’t last. I started waking up numerous times throughout the night. I’d wake up breathing real hard ... trying to get some air in me. D described it as I start breathing shallow then I take a whole bunch of deep breaths to recover. He says I moan a little in there too.
This waking up during the nite is becoming more and more of a problem starting last week. I'm thinking it’s when I'm in a deep sleep at night. I usually have an afternoon nap and waking up doesn't seem to be a problem. I feel well rested then too. During the day, I do have occasional shortness of breath and I am easily winded if I do something a little strenuous.
I feel a little panicky when I can't get enough air. First thing this morning, I sent an email to my trials nurse letting her know what’s going on.
Sunday, December 12, 2010
Brivanib is causing edema or swelling my feet, ankles, legs and face and must be obvious because a couple different people have mentioned my face is rounding out. Sometimes you’ll hear cancer folks refer to this as having a moon face. My ankles are now puffed out to where I need head over to the drug store and buy diabetic socks. My regular socks are now getting too tight.
This is not my first go-round with edema. Back in 2009 when I was on Taxotere, I got pretty swollen in my ankles and legs as well as my face. I also collected fluid around my lungs and in my abdomen.
To me, fluid in the abdomen is no biggy … I just need larger clothes but fluid around the lungs is way different. At times I was really short on breath and that scared me. I was breathing shallow at nite and sometimes I stopped breathing for a few seconds. Fluid around the lungs caused me to cough a lot too.
It’s only been seven weeks since I started Brivanib and I just don’t know how much fluid this chemo is gonna build. D says that I’m starting to breathe shallow at nite and that has me concerned.
Saturday, December 11, 2010
Yesterday I went to the last knitting support group meeting of the year. I joined in January and then it shut down for July and August. Not only was this was the last meeting of the year, it’s possibly the last for a long time as the facilitators decided after ten years of volunteering with the clinic, they needed a break. It was a bit sad to think we might not see each other again; some of us have really grown close.
I enjoyed the company of group because the conversations always tended to be on a lighter side with no shortage of outright laughter. F mentioned we should collect email addresses and phone numbers so we could keep in touch. Excellent idea … around went a piece of paper to collect the info and then we made photocopies.
After the meeting, all 10 of us went over to a restaurant in the mall and had a bite to eat. I ordered dry white toast and tea, which seems to be the safest choice for me these days. We continued to chat up a storm, make jokes and one-liners.
It was now approaching three hours out and it was all catching up with me. I had started feeling a little weak after the two hour meeting and now I was really feeling weak and bit nauseous too. It was definitely time for me to head home.
Friday, December 10, 2010
Marla Shapiro is a Canadian physician who at the age of 48 was diagnosed with invasive breast cancer. She is also a writer and on-air health journalist.
Here is a nine minute video of Marla talking about her cancer. Included is the transition from the roll of a physician to one of a patient, the decisions made leading to her double mastectomy and the uncertainty of the disease. Near the end of the video she offers advice on dealing with cancer.
Thursday, December 9, 2010
Well, fatigue is starting to set in and it’s getting to me. I feel so heavy and slow. I would rather just sit in my chair and do nothing except watch TV and surf .… not even go out for coffee, now that’s something.
Yesterday, D convinced me to go with him and get some groceries. I so did not want to move, especially out in the cold but I mustered up all my energy and off we went. We did the first few aisles together when I said I’m gonna sit in the pharmacy, get me when you’re done. A short time later, he came by and together we did the blood pressure thing in the little chair and hey, I was normal. My BP meds are working. Then I headed straight for the car.
I have this stack of papers on the dining room table waiting for my attention … it has been sitting for weeks now. And they’re all simple things like making a phone call or filling out some forms. But I’m just not interested. I've even decided not to do Christmas cards this year. Of course, housework isn’t even on the radar. D does the laundry, rugs and dusts and together we do the sink and keep the dishwasher going. Most everything else is left to take care of itself.
I remember being this fatigued on Taxotere and then some, so this isn’t new. I’ll be wearing out the furniture before you know it.
Wednesday, December 8, 2010
It is with deep regret to tell you that my dear friend J from our Sears BC Coffee Group lost her battle with metastatic breast cancer yesterday. She died peacefully in hospice with family at her side.
I first got to know J when we met in Sep 2000 at the Cross Cancer Institute here in Edmonton. Our group started out with seven ladies and sadly we are now down to five. We had this common bond of friendship and support found with each other’s company. We all started meeting once every two weeks for coffee at the dept store cafeteria.
J was always the gracious lady who opened her home to host our annual Christmas party and summer garden party. She was very creative and always carried herself with grace and poise. J you will be sadly missed. My heart goes out to her family.
Rest in peace my friend.
~ Blue was her favorite color.
Tuesday, December 7, 2010
Yesterday we had our sixth and final mets support group meeting for this year. We talked about wanting to start a group in mid January. I think we had eight ladies that were consistently attending the weekly meetings, so it might happen.
As we talked about our Christmas plans, some of the ladies felt sad they couldn’t do what they once could and even felt overwhelmed with the thought of spending so much time and energy with family and friends. Then we talked about some coping strategies to make it through the holidays.
It’s probably best to pace ourselves and not worry about being to extravagant with things, simplicity will be best. And if we’re not up to it, have others prepare the Christmas dinner this year or at a minimum accept help from others in preparing the meal. The important thing was not to expect too much from ourselves.
Fatigue is a huge side effect of cancer treatment and there is nothing better than closing your eyes for a short time to rejuvenate ourselves and our outlook. Being well rested can makes a world of difference, so if you’re going out to someone else’s place, plan for a nap before you go or even while you’re there. And if all else fails, plan to leave early.
In the end, we agreed Christmas can be an exhausting time so it’s important to pace ourselves. It was nice to know that some ladies felt well enough to prepare the turkey dinner. And for those who aren’t, they already have plans go to a relative’s house.
Monday, December 6, 2010
I’m still floating on cloud nine from the super good scan results. It was especially nice to share it with family and friends after so many months of not so good news. It was about 16 months ago since I’ve had shrinkage of my tumors … the only news I’ve had to share since then has been about stability or growth.
After the Onc left the room at my Thursday appointment, I asked the clinical trials nurse … I remember reading in the handout info you gave me before I signed up for the trial that after 12 weeks things change up a bit … what happens? She said … if your cancer gets considerably better or remains stable while on Brivanib, you will continue Brivanib treatments. If the cancer gets considerably worse on or before the 12 week visit, you will not continue in the study and Brivanib treatments will stop.
Of course, the nurse said I am nowhere near stable right now. Stability is where you get to a predetermined tumor size and stay within a certain percentage of that size. If you are considered stable, the participants in the trial become randomized with a placebo.
But, if I continue to improve, I will continue taking the trial drug … and that’s assuming my body is handling the side effects well.
And lastly, if the drug stops working and the tumors grow over a certain level, you are off the study, she said. She tried to draw out the various scenarios for me but this foggy brain of mine just didn’t quite get it all, so I said to her, I’ll just worry about taking my four pills a day and you guys worry about when I’m considered stable or improving and all that other stuff.
Its three weeks till my next blood draw and six weeks till my next scan. I am just going to blissfully float along until then.
Sunday, December 5, 2010
After Thursday’s great scan results, D and I thought we’d celebrate by going to the annual Christmas Festival of Trees, for charity and all indoors at the Conference Center. For sale were hundreds of beautifully decorated trees along with 50 gingerbread houses all designed, built and donated by local businesses. All were very elaborate and beautiful. There was even a separate area for one-a-kind ornaments for both under and on the tree and mantel. At the end of it all, everyone voted their choice for the best gingerbread house.
After we walked about half way thru, D went for a couple of coffees and we sat in front of the stage where school children sang and played Christmas music. Those young sweet voices add so much to the magic of what was going on.
Since its inception in 1985, the Festival of Trees has risen over $12M, all donated to the University of Alberta Hospital and the Mazankowski Alberta Heart Institute.
Below are some pics we took ...
Saturday, December 4, 2010
Friday, December 3, 2010
The receptionist called out my name and I was ushered into the examining room. As I’m sitting there, I’m still thinking of how I was going to apologize about not fasting for the CT scan last week. Then it occurred to me … wow this is my first CT scan since the start of my new chemo six weeks ago. What’s it gonna to show?
Well my Onc and the trials nurse came in together which is always a bit overwhelming. Onc sat down in a chair beside me, leaned over and showed me the radiologist’s report that compares today’s scan to the October 15th scan. My eyes darted down to the two tumor sizes they use to monitor my liver. … 3.6 x 2.5 cm and 3.0 x 2.2 cm. Together they shrunk 33.7 %. I could hardly believe it; when I looked up, both the Onc and the nurse were just smiling at me. What a surprise for me!!! What a surprise!!!
The Onc said these results are very good indeed and that your total liver volume has shrunk by 5% but added that is still quite swollen. He also said that the tumor makeup has changed from a hard lesion to a softer lesion and that it’s more watery like. Another surprise!!!
Pretty well anything said after that was muffled in my brain: I couldn’t process what was coming in fast enough. It felt like I was floating off my chair… like having an out of body experience. Were they really talking to me or was I dreaming?
With the radiologist report in hand, I headed home. I wondered what the tumor size back when I first started this whole deal in August of 2008. My blog notes that the largest tumor was 4.0 x 4.0 cm. So thru the four chemo’s that I’ve been on since then, my tumor size has yo-yo’d a lot.
Still not believing the news, I checked to make sure that it was my name on the report.
Thursday, December 2, 2010
Yesterday I redid a CT scan that I had done last week and this time I didn’t forget to fast. As I was going through the motions, I couldn’t believe I was back again, removing my clothing and changing into that breezy hospital gown. I thought, it is cold everywhere and sure would have been happier snuggling in bed instead of going through this again.
My name was called … time for the IV. The nurse found a good vein on the second attempt … I was so happy with only two sticks. She then mixed my 2 liter cocktail asking if I wanted her to use cold or lukewarm water, lukewarm I said. Then she asked if I wanted flavoring, I said yes, I’ll take iced tea. Great ... then she sat me at a table in the waiting room with my two drinks; I quickly got up and got a heated blanket to wrap around myself. Drinking all that fluid and waiting the required 45 minutes sure does make me feel cold.
I ended up sitting by a sweet older lady who was having her first CT scan ever. She said she made the mistake of ordering a cold drink because she thought it would be more like a glass of water not the two liters they gave her. She was shivering like a leaf. I said there were warm blankets but she said my fur coat should warm me up. I said you can ask for a warm blanket when you lay down for your scan. After her scan she came out with two warm blankets and still shivering. She sat down in the waiting room for about ten minutes until she warmed up enough to go and change back into her street clothes.
Anyways, after my scan was done, I headed home to bed and wrapped myself in a couple cozy blankets and an electric heating pad at my feet.
I get the results of my scan later today.
Wednesday, December 1, 2010
As per Wiki ...
Noreen Fraser was diagnosed with breast cancer in 2001.By 2003, her cancer had metastasized to her bones. After years of fighting, Noreen pledged to devote herself to raising money for focused research to find new techniques to prevent and fight cancer.
She started the Noreen Fraser Foundation in 2006 and recruited other survivors and prominent figures in the medical, entertainment, and business industries to join the organization.
Prior to starting the Noreen Fraser Foundation, Noreen produced other award winning television shows including, Entertainment Tonight, ABC's Home Show, and The Richard Simmons Show. Recently, Noreen has started working on producing a documentary about cancer’s effects and developing a television project that will serve to raise awareness for women’s cancers.
Prior to starting the Noreen Fraser Foundation, Noreen produced other award winning television shows including, Entertainment Tonight, ABC's Home Show, and The Richard Simmons Show. Recently, Noreen has started working on producing a documentary about cancer’s effects and developing a television project that will serve to raise awareness for women’s cancers.
Here is a five minute video of Noreen Fraser talking about her cancer and The Power of Comedy fundraiser in LA this Saturday, December 4th.
Tuesday, November 30, 2010
Yesterday we had our fifth Woman’s Metastatic Cancer Support Group meeting and the discussion centered on support by family and friends. We talked about how you have to put some thought into asking for what you need. Also, unless we are open to accepting help, we may lose out on offers of help.
So G said her freezer is full of casseroles brought by friends and family. The problem is, her appetite is terrible and so the food just sits. Now she says, when someone offers to bring food over, she’ll ask what they are having for supper. If it’s not something that interests her right there and then, she’ll say thank you but not tonite. Of course everyone’s personal situation is different. I don’t think she has a spouse or children at home who might otherwise appreciate a home cooked meal.
At this point G was on a roll … She told the story of how an acquaintance called and said she was coming over with flowers. G said instead of flowers, what I really could use is a coupon for an inside and out car wash. There were a few chuckles and we all agreed that was a great idea … she then said, now, if I could only find someone to go with me and stand at the pump and fill my car with gas, I’d really be happy.
Now there is one woman who is using her support system very well.
Monday, November 29, 2010
Each day brings with it a slightly different challenge when it comes to my stomach. I wake up every morning and think what am I going to eat today and how much? And I’m still sticking to simple foods that lessen the cramps in my stomach.
For two weeks now I’m either trotting or stopped up for two or three days at a time. Last week, it was day two without a bm and I said to D should I take something for constipation? He thought no, you haven’t eaten enough to be constipated, wait one more day.
The next day I felt so good that I ate a very plain 6 inch sub sandwich. I guess I wasn’t that good because the trots came shortly afterwards. It was probably too much at one sitting but I was just so hungry for normal food that I didn’t want to stop.
Sunday, November 28, 2010
If you have any hidden medical devices like a breast prostheses or a port and are planning to fly, you may want to read this post. Canadian airports have full body scanners and pat-downs but not the issues found in the US. So when you’re traveling south of our border, beware of what’s happening and prepare yourself.
The buzz about the TSA passenger screening at U.S. airports all started after a woman declined to do the full-body scan because of radiation concerns. She was then given the option of a body search instead. Things got uncomfortable when the female agent discovered her breast prosthesis and asked her to pull it out. Another case was where an agent poked and prodded around lady’s port so aggressively, it made it sore and uncomfortable for days.
So to help make air travel just a bit easier, Susan G Komen for the Cure put together some steps you can take as you head to the airport.
Saturday, November 27, 2010
I had a CT scan on Friday and all when well except that I forgot to fast in the morning. I called and the receptionist and she said to come in anyway. Mid afternoon, after it was all done, I was feeling like everything was going to end up ok.
But noper - I got an email late in the day from my trials nurse telling me I have to do-over my CT scan next week. Darn it; I sort of suspected that they’d want a perfect scan because of the clinical trial drug I’m on. They’re more particular about what they want and how they get it.
I’m quite annoyed with myself for screwing this up. Trying to think back on what I could have done different. All I can say is that it’s been a busy week for me and I truly thought I had nothing scheduled after Thursday … obviously I was wrong.
So now I’m gonna put notes all over the house reminding me that I need to fast the morning of my scan. Hope that helps this silly brain of mine to remember. I sometimes think I could sure use a personal assistant to help me stay on track with appointments and meds and such.
Friday, November 26, 2010
As D and I were sitting sipping on our morning coffees, he picked up my Droid phone and checked the calendar events for today. Hey he goes, aren’t you supposed to be having a CT scan today? Whaaaat? … I just finished my second piece of dry toast. I grabbed my folded up appointment list and yup, there it was, clear as day and I should have been fasting.
Anyways, in a panic, I called the clinic and they were really nice about it. She said that the small amount I ate is ok and will have moved along enough in time for my scan. She also said that I wasn’t the first one to forget … that made me feel less of a dumb bunny.
Thursday, November 25, 2010
I first saw this video on fellow cancer blogger Duper’s blog at Ciao Cancer.
A bit about this 24 minute video …
Dr. David Angus, an oncologist, says the death rate of cancer has not changed significantly in 50 years. So a group of researchers are pushing forward with a new approach to treating cancer. They’re bringing in engineering principles and using cross collaboration with mathematicians and physicists to hammer out a cure for cancer.
What a jaw dropping video.
Wednesday, November 24, 2010
In 2009 after quitting Taxotere I started feeling better. Both Xeloda and Vinorelbine were much easier to handle and I was feeling like doing something more. I decided to volunteer with the Canadian Cancer Society’s - CancerConnection. C C is a one-on-one peer support for those going through cancer. After my initial training, I would be matched up with women who are having a similar cancer experience and once a week we’d discuss whatever was on their mind.
I did this for about eight months and talked to about six ladies across Western Canada. Unfortunately, I decided to leave earlier this month because my current chemo, Brivanib was giving me too many side effects. I just didn’t have the energy and especially the enthusiasm I felt I needed to continue doing a good job.
Anyways, yesterday I had the wonderful opportunity of meeting one of the gals I used talk to. We decided to meet in person once I left the CancerConnection. M lives about an hour out of town and came in to run some errands.
Finally we had faces to our voices … it felt so good meet her. We still chatted about our cancers and how we were coping with living with our cancer and how we both liked to quiz the Oncs, looking for more meaning in their words. I laughed and said; I used to watch the Oncs face when s/he’d say something and wonder why that eye brow went up just as they said that. Was this sugar coating or telling it like it is? Of course we both came to the conclusion that too much analysis is not good.
We enjoyed our nice lunch together and plan to do it again soon.
Tuesday, November 23, 2010
After several decent nites sleep, Sunday’s sleep was just plain lousy… intense dreams and waking up every few hours. Arrggg! And to top that all off, I had to wake up Monday a little early to take my weekly prescription of ‘bone harder’ … 70mgs of Alendronate. It’s only one pill and it must be taken on an empty stomach and then no food for an hour.
After taking all my other meds and breakfast, I was not feeling well. I auto-posted my blog for 11:30 and went back to bed. I slept for over an hour and woke up feeling sluggish and even more tired. Ok regardless, I had to get up and get going because my mets support group meeting was starting shortly.
The weather here has turned cold -18C 0F. Fortunately for me, D offered to drive because I tell ya, having a driver to chauffeur me around has been just the best. D picked me up a couple of hours later and I was back home snuggling in my blanket.
Last night's sleep was better.
Monday, November 22, 2010
At the suggestion of Angela, a fellow blogger at finding a way who said, try making smoothies to ease indigestion and eat better. This sounded like such a great idea; I went out and bought one of those Magic Bullet blenders. I selected this one because it’s simple to clean, has extra cups, it’s smaller than most others, takes very little room on the counter and the price is right. I’ve wanted to start drinking juice for quite a while now but found out that people who buy juicers often quit soon after because they’re not easy to clean and then the novelty wears off.
I started making smoothies out of the few items I was able to tolerate like banana, apple sauce and carrots. After this style of eating worked for me, I started to make new ones out of yogurt and cottage cheese. These all seem to be really easy on my stomach because it’s in liquid form.
I plan on adding things like berry V8, spinach, protein power, oatmeal, milk, peanut butter and other fruits and vegetables. Between Angela’s suggestions and Google, there is endless list of smoothie recipes out there including high protein one’s which I need. And what I don’t want to drink right away can put in the fridge for later. So far this smoothie thing is working out very well for me.
Sunday, November 21, 2010
Variety’s Power of Comedy event is taking place December 4, 2010 at Club Nokia at LA Live. Variety will bring together a talented group of Hollywood’s funniest comedians who, through their stand-up performances will raise funds for the Noreen Fraser Foundation. NFF is a charitable organization whose mission is to fund ground-breaking women’s cancer research.
Special guests include Russell Brand, Sarah Silverman, Bob Saget and many other comedians.
Humor not only serves to break the ice on a subject like woman’s cancer that can be uncomfortable but also reminds us all of the healing power of laughter.
For more information and to purchase tickets see their website at http://www2.variety.com/power-of-comedy/poc.html#buy
Saturday, November 20, 2010
Yesterday after D and I ran a few errands, we drove past one of our favorite coffee shops; D asked if I wanted to stop. Never one to pass up an offer to stop for coffee, yes of course. Being that coffee acts as a diuretic, tea was the alternative for me. Also, we passed up on muffins ‘cause I’m really trying hard to eat proper.
Anyways, while D was picking up the drinks, I scoped out a couple of chairs right next to the fireplace … real fire, fake wood. Oh well it still felt warm and cozy. That thing kicked out so much heat that we both took our coats off. The outside temperature these days is around -15°C 5 °F … brrr brr. The funny part was that my tea was on the hot side, too hot for these lips. D put my cup next to the window and it cooled down in no time flat.
We talked and nursed our cups for a good 45 mins and then left for home.
Friday, November 19, 2010
After being diarrheic for a few days, I realized we didn’t have the proper foods in the house to help minimize the effects. So D suggested looking on the net and making a list of foods to eat for constipation and diarrhea. I came up with three lists to manage things a bit better:
- foods to eat when diarrheic
- foods to avoid when diarrheic
- foods to eat when constipated
Who knew that if you are diarrheic you shouldn’t eat peas but eat carrots instead. So we went shopping and filled in the gaps in the pantry with things like white rice, soda crackers, white noodles and white bagels … all bland foods for managing the trots. We also picked up PowerAde to help replenish lost electrolytes and topped the list off with Imodium.
One thing I am doing right is to eat smaller portions and see how my stomach likes it and go from there. Something I am not doing right is shying away from fluids because I’m having trouble holding water.
The good news is that there were no cramps last night so something’s starting to work.
Thursday, November 18, 2010
I’d been thinking about getting a new pair of glasses just before I was diagnosed with mets in 2008. For one reason or another I’ve put off having my eyes examined. Finally with the frustration I was having with blurry vision from the new chemo and my outdated prescription, I thought I better do something. So a couple of weeks ago I had my eyes examined, picked out a pair of glasses late last week and yesterday they came in.
When the call came, I had to go straight to the mall because I was feeling pretty excited about the look that new glasses would bring to my face. After they were on my nose and adjusted, I stepped into the mall to see the world.
Wow, I found things to be so much brighter and clearer … the Christmas lights and decorations were just so much more sparkly and alive. And the glasses look good on me too.
During my morning cup of coffee, I could see the time on the mantle clock and my PC screen is really clear. I waited way too long.