Living with Cancer

Daria’s Funeral Service

2011-01-28T11:47:00.003-07:00

Yesterday was Daria’s funeral service. At the funeral home, the family gathered around in the eating area an hour before the start of her service. We spoke softly to each other and shed a few tears for Daria and for each other. The funeral director then took me to the chapel area to show me Daria’s urn, her large framed picture and flower arrangement. I silently said oh Daria to her picture and cried and stayed a while.

I didn’t notice walking in, I thought the place was empty, but there were two young ladies sitting in one of the pews. When I turned to leave, they both got up and tearfully introduced themselves and offered their condolences. I told them that I knew who they were. Daria had given both of them their start in their HR careers. Daria talked about them often, followed their progress and after leaving that job for another, they continued met regularly for dinner.

That was my Daria. Thank you to all those that came to Daria's service and offered their condolences to the family and myself.

Don

Below is the link to the picture montage that was shown at her service. When you get there, click on Daria’s picture to start the series rolling.

http://obits.dignitymemorial.com/dignity-memorial/obituary.aspx?n=Daria-Maluta&lc=3721&pid=148065092&mid=4526284&locale=en-CA

or Google, Memories Funeral Home Edmonton AB

Daria’s Eulogy by her brother-in-law Peter

Daria Maluta passed away January 22, 2011 at the age of forty-nine, two days before her fiftieth birthday. She will be sadly missed, but lovingly remembered by her husband Donald, her mother Jennie, her sisters Maria, Anne, Olga, Diane, and her brother Steve. Daria had been predeceased by her father Roman Maluta in 2001.

Daria was born on January 24, 1961, and grew up on the family farm near Glendon Alberta, where she attended school. Upon graduation from high school, Daria moved to Edmonton where she was employed by Canada Safeway for approximately twenty years. It was during this period she became interested in business management and human resource development. In 1995 she studied Front End Management offered by Cornell University, and in 1998 she studied Management Development offered by the Faculty of Extension at the University of Alberta.

During this period, Daria was also a member of Toastmasters International and regularly volunteered at the Youth Emergency Shelter in Edmonton. In 2003 after having been diagnosed with breast cancer, Daria continued her volunteer work and participated in a Cure for Cancer marathon held in Seattle Washington.

In 2004, she began her studies towards a Human Resources Certificate, offered by the Faculty of Extension, at the University of Alberta. At this time Daria also decided to make a career change, and she was able to obtain employment with Edmonton Northlands with their Human Resources department. In 2007, Daria was hired by the Eveready Income Fund and employed as a Human Resources Generalist, she remained in this position until her illness caused her to retire.

However Daria refused to totally give up her studies in Human Resources and was able to obtain a Human Resources Management Diploma from Grant McEwan University in 2010, despite only being able to attend on a part-time basis while undergoing chemotherapy treatments for her illness.

In 2000, Daria at the age of thirty-nine, was diagnosed with breast cancer. She endured radiation, chemotherapy, and surgery and was cancer free for eight years, at which point the cancer returned. After her chemotherapy treatments to try to force the cancer into remission, Daria volunteered to participate in the phase 1 clinical trials for the new experimental drug Brivanib, which it was hoped could help future cancer patients.

She became a spokesman and activist for those also suffering from metastatic cancer, and traveled to our nation’s capital to speak to members of parliament about the need for greater cancer awareness and treatment. In this capacity, she set up her internet blog, ( Daria-Living with cancer.) which allowed her to chronicle her treatment, share her feelings and inspire and encourage others around the world, suffering from this disease.

Closer to home Daria continued to volunteer and help others, through the Breast Cancer Network she provided counseling to others on a daily basis. Daria not only shared her busy life with her beloved husband Don and her dog Daisy, she developed a worldwide network of friends through her blog and Facebook entries, who she continued to inspire daily.

Daria's funeral service at Memories Funeral Home

2011-01-23T13:43:00.000-07:00

If you are able, please attend Daria's funeral service at Memories Funeral Home 13403 St. Albert Trail, Edmonton AB Canada, Thursday January 27 at 1:00PM. Refreshments will be served afterwards.

If you can’t make it, I will post the eulogy and the picture montage shown during the eulogy so you will have a better sense of Daria’s personality and the things she accomplished in her life.

Thank you,

Don

Daria Maluta has Passed

2011-01-22T10:13:00.000-07:00

Daria Maluta passed away last night at 04:34 on Jan 22, 2011 at the Royal Alexandra Hospital here in Edmonton AB. I was by her side and was able to kiss her goodbye several times during the night and then watched her slip away quietly in her sleep.

I’m a little too emotional to talk about anything else right now. Meeting right away with family at her mother's place and I’ll post more later.

Don

Daria Rests Comfortably

2011-01-21T12:26:00.000-07:00

Daria is resting comfortably but is slowly losing touch. We are waiting for an opening at hospice care about a block away from the hospital. The caregivers say that should happen around Wednesday of next week.

Don

Daria is no longer able to post to her blog

2011-01-20T11:02:00.000-07:00

Don here. This is the most difficult thing I ever have had to say…. Daria is no longer able to post to her blog.

Yesterday around noon, I brought my love to the hospital by ambulance. After some tests by the ER doctors, Daria asked for medication to control pain. It’s difficult for her to speak right now but she still knows what’s going on.

This morning and every morning, I’ll print out your comments, take them to Daria’s bedside and read …. I think tearfully … each one out loud. Your words mean a lot to both Daria and I, they will be very comforting to hear.

In the next day or so I’ll know more and post.

Don

Resting at Home

2011-01-18T11:29:00.001-07:00

I’m out of the hospital after my ERCP and resting at home, drinking fluids and going to the bathroom. The doctors placed a few stints to get bile moving from my liver.

My belly is really full of gas and I’m not feeling too good right now.

Thank you for all your comments.
D.

ERCP Procedure Today

2011-01-17T10:27:00.001-07:00

Today I’m going into the hospital for an ERCP Procedure. I’m hoping the Doctors finds some bile duct obstruction that will help explain some of what is going on. And I'm hoping everything goes well and I will be home safe and sound by this evening.

If I’m not up to blogging tomorrow, I’ll be asking D to fill in some of the details of how I’m doing.

Feeling Melancholy

2011-01-16T09:56:00.000-07:00

Since Thursday’s appointment with my Onc I’ve really been doing a lot of thinking. It’s made me very melancholy. It makes me wonder how much time l have left on this earth?

When I look in the mirror not only am I gaunt but I’m looking Jaundice too. I don’t feel like I’m recovering … I feel like I’m deteriateing.

I am feeling ever so rushed to get things done knowing at any time I could be rushed to the hospital never to come home again. And then there are times I think I might have months to live.

It’s a confusing weird place to be in.

Hopefully Some Good News Next Week

2011-01-15T11:07:00.000-07:00

Friday at 8 am I was at the clinic at X-ray … in for an ultrasound of my chest and abdomen. The goal of the technician was to find large pockets of fluid that could be drained. She found one area on my back near the bra line and one was on the left front side near the groin area. They marked some areas on my body, took some pictures and then it was off to see my Onc who was going to do the two procedure … the Thoracentesis and the Paracentesis.

Eventually he took out 750mls of fluid out from around my lung area and another 850mls out from around my abdomen area. I’d have to say it went very smoothly with no pain … maybe a bit of discomfort.

Even after the procedure, my belly is still quite swollen but much of the pressure is relieved. I still cough a bit and my ears feel like I’m under water. I’m hoping it’s just some time for everything to settle in.

While doing the procedures, the Onc repeated … we are not stopping this study till we find out what’s wrong with you. Music to my hears …

The final procedure being done is an ERCP which will be done by a gastrologists. He is looking for some liver duct blockages that can be fixed. Anyways, got a call late Friday to come in on Monday. Wow I am very excited. Hopefully we finally have some solid answers.

Sharing Some Bad News

2011-01-14T11:30:00.001-07:00

I guess we’ll just cut to the chase … the Trials nurse walks in and says … oh your face … I said it’s yellow … then she looks at my belly … oh it’s bigger … yes I said, trying to hold back the tears. She proceeded to tell my liver functions numbers were up once again. We looked over the numbers. Ok a tear came down. A little discussion, then I said and how many weeks can I be off Brivanib before I’m kicked off the study? She said four. More tears. Next week is considered my 4th week and there is no possible way those liver function numbers could come down in one week. So I’m off the study, I said … yes, said the nurse.

We spent some time talking as she tried to console me. I asked how long do I have … she said the Onc would come in to talk to me about that. My mind was racing now, how am I’m going to tell D, my family.

Then the Onc came me. First he said the CT scan was really good. The tumors on the liver are smaller and looking great. But the liver function numbers are not great. He said, I’m thinking the reason your liver function numbers are up is because you may have a plugged bile duct in and around your liver. And your coughing is likely because you have a swollen belly which is putting pressure on your lungs which already have fluid around your lungs and are making you cough.

So what is the plan … drain the fluid around the lungs, drain fluid from the abdomen and try and find a plugged bile duct and then unplug it.

In the end, I walked out not having much solid information except that tomorrow morning at 8:00am I have to be at the clinic for one of these procedures.

BC Friends and Meals on Wheels

2011-01-13T10:13:00.000-07:00

Yesterday was our breast cancer friends coffee group. I have to say, with the weather being so cold, the roads being so slippery and my energy being so low … I didn’t really feel like going. It just seems to be too much of an effort to do much of anything. Finally when D offered to drive me, I realized I couldn’t say no and I’m so glad I didn’t. Conversation wise I wasn’t very chatty but it sure was nice just to see the ladies. A, had made copies of our Christmas Party and Irm brought pictures of her sweet grandchild. Those pictures alone helped brighten the day.

After about an hour and half I decided that was enough of an outing for me so I called D to come pick me up. On our way home, we stopped at Meals and Wheels for a few different frozen samples. I’ve never tried them before but was desperate for a change in food. I am so done with takeout, packaged food, canned food … white rice, white bread, bananas and so on.

I ended up opening a packaged dinner for last night … it was a bit bland but maybe that is exactly what my stomach needs right now. The food went down real well with no digestive issues, however, I ended up get up numerous times for washroom breaks. I have to keep reminding myself … SMALL PORTIONS ONLY!!

CT Scan Part 2

2011-01-12T10:15:00.000-07:00

Ok so I’m the last person to be called in for me CT scan and the only thoughts on my mind were don’t throw up, don’t lose controls of your bowel and don’t cough during the scan itself.

One of the technicians can in and started some small talk and said something like just go lay down on that scanner bed. I wasn’t feeling very strong and balanced so I just sat down waiting for someone to help me lay back. I had visions of landing on the floor.

She helped lay me down and then went over about the 20 or so questions … could you move your head higher, would you move your hips to the left, have you had this test before, did you have any reactions and so on. Fortunately, I was quite familiar with the procedure so I only listened to the odd word here and there.

My only concern was to stay calm and not have any mishaps, and my biggest worry at that moment was my coughing. So I mentioned to her, that I had this coughing problem … oh no you can’t cough during the CT scan … ya I kinda figured that. She gave me some helpful advice ... when we tell you to breathe in, just take a shallow breath.

So how the CT scan generally goes … someone will say you to you … ok, now take a deep breath and hold it … seven seconds later, they say, ok breathe normally. They do these four times while the big circular tube goes around you. This test is about ten minutes and at mid point they inject you with some sort of contrast media. I took the techs advice and it seemed to be fine.

Finally, I’m done … it’s off to the change room to change into my street clothes. I was half way pulling up my pants when I got this serious urge to go to the washroom. I grabbed my purse and ran for the toilet … sure enough another serious bout of diarrhea. I finished dressing and phoned D to pick me up. I asked him to put and old blanket on the passenger’s seat of the car just in case I had an accidental bm on the way home.

Fortunately, no accidents in the car …. But my diarrhea did continue into the night and then most of the next day.

CT Scan

2011-01-11T10:43:00.001-07:00

Yesterday I had my CT scan. I was feeling a bit weak and nervous. My stomach was feeling bloated and I was worried I would not be able to drink the two liters of the contrast cocktail they wanted me to.

Well no sooner did I fill out the paper work, and change into a gown … my name was called. The next order of business was to get an IV. Two nurses and three pokes later, success! Off to the waiting room with my two liters of contrast cocktail. I had 45 minutes to drink it.

The place was pretty full so I got a chance to talk to a couple of fellow cancer patients. A young man and his wife were sitting there and were noticing everyone was getting warm blankets from the heater. It didn’t take long for them to figure that out, so as the wife get’s him a blanket, I said … a person sure does get cold after drinking that cocktail. He said you know I used to always be warm until I had my surgery and now I’m always cold … interesting I thought.

Anyways, as time went on, I continued to drink and drink and drink. The fluid felt like it was just sitting in my belly and not moving through the system. I kept looking at the garbage can beside me thinking that might be where these drinks were going to end up.

I was now an hour and half hour later and I was the last patient waiting for a scan. There was one other patient who needed some medical attention on a leaky surgery site. The nurses took her into another room to help her out.

While this was happening, I thought, well I’d better go to the washroom one more time hoping to empty my bladder and relieve some of the pressure to my abdomen. Well thank goodness I did go to the biffy because I ended up having a serious bout of diarrhea. As I came out of the washroom, I once again ran into the lady that needed the dressing changed.

She comes by, cane and all and says, have a nice day … in a very cheery upbeat voice. I said same to you. She noticed my cough and said is that a cold or cancer related. Cancer related. Oh she said that coughing sure can be sore on the ribs. I said it sure is. After a bit more chit chat … her last words to me were …

All the best to you and keep your head up high.

My Coughing

2011-01-10T11:25:00.000-07:00

I wanted to share with you how my coughing has been going. D says I’m coughing nowhere near what I used to.

It may be because I spent the last two days in bed just lounging in my pjs and that may have kept my coughing down. It was a very restful time and I loved every minute of it.

However, I did notice a couple of new coughing triggers this weekend that I’d like to share with you. First the hot moist air in the shower made it hard for me to breathe, so much so it forces me to stick my head out behind the shower curtain to get some cool dry air. I did that a couple, three times during the shower.

I had another situation of where high humid in the air was causing problems for me … D was cooking spaghetti for supper. I came to have a look at it and started coughing uncontrollably. I left the room and went back to the bedroom and laid down to relax and calm myself. That is the first time that humidity from cooking has done that to me.

And finally, I’ve mentioned this before … any shift in position of my body in bed will cause coughing. There must be something in or around my lungs that shifts when I move. So to try and minimize it I sleep on my back for as much of the night as I can with the hope I don’t stir things up.

Fear of BC Recurrence~Video

2011-01-09T10:32:00.004-07:00

Here is a five minute video where Dr Anne Moore, a leading breast oncologist, shares important information to help breast cancer survivors cope with the fear of recurrence.

Dr. Anne Moore, is Professor of Clinical Medicine at the Weill Medical College of Cornell University and is Attending Physician at The New York Presbyterian Hospital where she chairs the Breast Cancer Committee.

How to cope with fear of breast cancer recurrence

Heart Test and Bone Scan

2011-01-08T10:36:00.000-07:00

Yesterday was a bit of a long day at the clinic. I got there for an 11 am appointment … my Echo-cardiogram. Basically, the technician spends most of her time doing an ultra sound of my heart, taking pictures and recording this and that. Here and there she would ask me some general questions about my heart history … Have I had any heart problems? Experienced any fluid around my heart? Have I ever been on high bp medication? Experienced any shortness of breath? The appointment was a good 45 minutes.

I thought I’d share this three minute video of an Echo-cardiogram with you.

My next appointment was a bone scan. First order of business was to have the contrast injected into my vein. Two nurses and two attempts later, we found a good vein … success I was starting to light up on the inside. It takes a good hour and 45 for the contrast to circulate through the body so the technician said to come back almost two hours … and oh yes, she said, try and drink lots of coffee or whatever so that you can pee twice before then. Argg I go … I have so much trouble putting down fluids. I said I’d do my best.

Since I only had one tablespoon of oatmeal that morning, I thought I’d go to the cafeteria and picked up a fresh salad with some grilled chicken pieces and a small juice. I could barely finish it before indigestion set in. The best I could do was one pee.

I came back for my bone scan and a half hour later I was all done.

It was 3:30 and I was anxious to call D. I was so ready to go home and put my feet up.

More Waiting Required

2011-01-07T11:30:00.001-07:00

Well my appointment with the Trials Nurse and Onc was not as I had hoped. Not only had my liver functions numbers gone up again but they doubled since last week. All the nurse could say is that we’d have to wait and see. So no Brivanib this week.

Still in a bit of shock I asked the nurse what we could do about my cough saying that maybe an inhaler was in order. She said she’d ask the Onc. A short time later, she walked back in with a prescription for an inhaler. Two seconds later, the Onc walks in and checks my breathing, taps my back for fluid levels around my lungs and then said he was going to send me for a chest x-ray immediately. Maybe a chest x-ray would give us some ideas as to what the problem is. Both the nurse and the Onc left.

A couple minutes later, the nurse comes back in with a list of my regularly scheduled scans and tests. Tomorrow I have heart tests plus a bone scan. Monday the 10th I have a CT scan and Thursday the 13th I have blood work and see the Onc to go over the results. The nurse then said I should go have a seat in the waiting room and she’ll get a requisition for a chest x-ray.

A few minutes later, I was on my way to X-ray. I changed into a gown and within five minutes my x-rays were done.

I gave D a call to pick me up … his first question was … well how are things? I gave him the news about the blood work. Darn it, he says. Then he asks if the Onc commented on whether the coughing was due to the fluid around my lungs. I said, no and in fact very little was said about anything. Oh, he goes … my thoughts exactly.

Off To See The Onc

2011-01-06T11:27:00.001-07:00

Today I’m off to the clinic for blood work and to see the Onc. I’m sure hoping my liver function is better so that I can go back on Brivanib.

Last night I prepared my list of items I wanted to talk to the Trials Nurse and the Onc about.

Firstly I want to talk to them about this awful coughing I’ve had for the past week or so. I have to find a solution. It’s exhausting and I just want to cry when I think about it. The mornings start out pretty good but somewhere around the late afternoon I start coughing and it only worsens into the night. Phone calls can be especially difficult … I become short of breathe and cough like crazy.

Secondly, I wanted to talk to the Onc about my bp medication. Last week his orders were to keep reducing my bp meds until I got a top number of at least 95. I’m not sure that meant stopping the meds completely tho … but I did. My bp this morning was 106/75 and being that my bp monitor is about 5 points higher than the clinics, I figure it’s pretty close.

The third item that’s been bugging me for quite some time now but I haven’t mentioned is … since about spring, every few months or so I gain about an inch on my waist … it seems to be expanding. I've always thought it was swelling from the cancer but since I’ve been on Brivanib and the tumors are shrinking I was hoping my belly would too … not.

Look Good Feel Better Workshops

2011-01-05T10:38:00.002-07:00

I am often surprised when I run into one or two cancer survivors that are not familiar with the Look Good Feel Better workshop. It’s very uplifting and you always walk away with a bag full of goodies.

So here is a bit of information about the program as per their web site.

At Look Good Feel Better, we believe that an improved self-image can help lift women's spirits and nurture hope, helping them face their illness with greater confidence. We like to call it a 'makeover for the spirit'.

Launched in 1992 by a charitable foundation of the Canadian Cosmetic, Toiletry and Fragrance Association (CCTFA), Look Good Feel Better is Canada’s only cancer charity dedicated to empowering women to manage the effects that cancer and its treatment have on their appearance, and often on their morale. Over 100,000 women have been helped through our workshop and services.

At the heart of Look Good Feel Better is a free, two-hour hands-on workshop in which women whose appearance has been affected by cancer and cancer treatment learn how to look and feel a little more like themselves again. Guided by experts through our Signature Steps, they master simple cosmetic techniques, explore hair alternatives, and learn about cosmetic hygiene, nail and skin care. Participants take home a complimentary kit of cosmetics and personal care products that are generously donated by the member companies of the CCTFA.

The Look Good Feel Better workshop brings together women with cancer in a safe and supportive environment where they can share stories, insights, laughter and, yes, sometimes tears.

Explore their website to learn more about Look Good Feel Better. If you’d like more information, please call 1 800 914 5665.

For workshop dates in Edmonton ... please click here for the locator.

Feeling the Effects of all the Holiday Celebrations

2011-01-04T11:22:00.000-07:00

I’ve been really coughing a lot over the past week. I’ve used Halls cough drops which have allowed me to breathe easier and I've used Ativan to calm me down. I've been taking ½ of an Ativan at night and the same amount during the day … for the past four days and nights.

This morning I woke up coughing abruptly unable to catch my breath. I ended up going into a dark quiet room all by myself trying to calm down. Sure enough I eventually caught my breath.

I’m thinking the last few weeks have been more than too busy for me. Between the Christmas Festivities, travel and the changes to treatment and side effects, I’m worn out. Not only am I physically worn out but I’m emotional worn out … I’m feeling anxious, frustrated and weepy.

This morning I called my psychologist at the clinic and booked in an appointment to see her. I’m hoping she can help me with a new plan of action … something that will put me back on track to a more calmer me.

Become a Breast Friend!

2011-01-03T11:10:00.000-07:00

Edmonton's breast cancer survivor dragon boat racing team is recruiting new members for the 2011 season. Any woman from Edmonton and area who have had a diagnosis of breast cancer and have completed treatment are eligible to join them. They are from every walk of life, and have varied fitness levels. Their goal is to prove that women can lead full and vigorous lives after surgery and treatment for breast cancer. Their motto is: "Awareness and hope in a dragon boat!"

Training begins in the gym in February. They also practice in pool boats in April. Then they start training on the river by mid-May. Their training is led by head coach and trainer Dot Laing, who has more than 25 years of experience in the fitness field. The dragon boat racing season goes from June to September.

Last year Breast Friends crews entered 7 festivals, including the Edmonton Dragon Boat Festival which is held every year in August. They won gold medals in the breast cancer divisions at 6 of those festivals, and their goal is to be just as strong next year!

Breast Friends will hold an information meeting for potential new members on Thursday, January 6, 2011 at 7 pm in the Zane Feldman Theatre at the Cross Cancer Institute.

Please RSVP to info@breastfriendsedmonton.org. The deadline for new memberships is January 15, 2011. For more information, visit their website, www.breastfriendsedmonton.org

Under the Night Sky – Wellspring Shines

2011-01-02T10:42:00.000-07:00

As per their website...

Under the Night Sky – Wellspring Shines is on Saturday, February 5, 2011 at The Enjoy Centre, St Albert, AB. 100% of net proceeds from the event will go to the Wellspring Edmonton Campaign to build and operate our facility, so that we can reach our goal and open our doors by 2012!

Wellspring Edmonton will provide a wide range of cancer support programs to serve the emotional, social, and informational needs of people living with cancer, and those who care for them.

Here is a bit about the evening …

Twilight - the reception (6:30 p.m.)

The setting is inviting – fireplaces glow, the lighting sparkles and the music is lively. As guests mix and mingle they will be treated to elegant hors d’oeuvres and tantalizing drinks . . . just a taste of the indulgences that await them at Nightfall.

Nightfall - the dinner (7:30 p.m.)

Guests enjoy a magnificent meal while celebrating the story of Wellspring Edmonton. Throughout Nightfall, guests will be treated to elegant music and entertainment. It will be a party like no other.

Midnight - the after-hours (9:30 p.m.)

After-dinner drinks, espressos, and the ultimate in desserts will be served in this “after-hours” spot, with a background of intimate jazz.

Throughout the entire evening, selected pieces of high-end art, each with a special connection to Wellspring, are offered by auction. The evening comes to a close and guests leave, feeling enriched, indulged and informed – and looking forward to next year!

For more information click here and for tickets click here.

Trouble with Coughing

2011-01-01T12:01:00.001-07:00

I’ve been feeling pretty good this past week except for this silly cough I’ve got. It’s been off and on and really started to come on the day before seeing the Onc on Wednesday the 29th. I was ok in the mornings but the afternoons seemed to be so much worse. We, the Onc and I didn’t really discuss it too much because I just thought it would flare up and then disappear however that didn’t seem to be the case.

Anyways, as we were visiting family and my coughing had become annoying and distracting so much so that my brother-in-law came out with some Halls Cough Drops. I sucked through about five of them … what a relief that was. I could sure breathe more clearly and easily.

Last night I took half an Ativan hoping to calm things down and may get some good sleep. In the middle of the night I woke up a bit agitated so I popped a cough drop in … once the cough drop dissolved, I was able to fall asleep quit quickly.

Today is a new day and once again, I feel good and am doing next to no coughing. I’m thinking the Halls from yesterday are still doing their thing.

A Pink Glove Video

2010-12-31T11:17:00.000-07:00

A nice upbeat video to help start tonight's festivities.

Onc Visit

2010-12-30T11:30:00.001-07:00

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.

Chemo Vacation Continued

2010-12-29T11:39:00.001-07:00

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.

Visiting with Friends

2010-12-28T11:39:00.000-07:00

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.

A Family Visit

2010-12-27T11:30:00.001-07:00

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.

Visiting with Family

2010-12-26T11:30:00.001-07:00

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.

More Chemo Side Effects Report to Onc

2010-12-25T11:30:00.002-07:00

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.

I’m on Chemo Vacation

2010-12-24T11:20:00.000-07:00

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.

I Have a Brivanib Buddy

2010-12-23T11:30:00.002-07:00

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.

Checklist for Clinical Trial Nurse

2010-12-22T11:19:00.000-07:00

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.

Cancer Research Saves Lives Video

2010-12-21T11:30:00.001-07:00

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.

Mother 86 Years Young

2010-12-20T11:13:00.000-07:00

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.

A Rude Start Day

2010-12-19T11:27:00.000-07:00

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.

Prescribed a Thyroid Medication

2010-12-18T12:38:00.000-07:00

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.

Huge Bouquet of Flowers for Christmas

2010-12-17T11:30:00.002-07:00

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.

BC Christmas Party

2010-12-16T11:09:00.000-07:00

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.

First Mets Coffee Group

2010-12-15T11:30:00.001-07:00

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.

Physiotherapist - 6 month checkup

2010-12-14T11:54:00.000-07:00

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.

Lousy Sleep Last Nite

2010-12-13T11:30:00.001-07:00

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.

I’m Starting to Swell Up

2010-12-12T11:30:00.001-07:00

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.

Knitting Group is Done for the Year

2010-12-11T12:20:00.000-07:00

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.

Dr Marla Shapiro talks about her BC

2010-12-10T11:30:00.001-07:00

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.

Fatigue is starting to set in

2010-12-09T11:30:00.002-07:00

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.

A BC Friend has passed

2010-12-08T11:30:00.001-07:00

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.

Coping Strategies for the Holiday Season

2010-12-07T12:19:00.000-07:00

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.

On Cloud Nine

2010-12-06T11:30:00.001-07:00

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.

Festival of Trees

2010-12-05T12:13:00.000-07:00

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 ...

BC Video

2010-12-04T12:12:00.000-07:00

This ad was created for NBCC in Australia. It's kind of cute, 45 seconds.

My CT Results Are In

2010-12-03T12:05:00.001-07:00

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.

CT Scan Redo

2010-12-02T11:30:00.001-07:00

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.

Noreen Fraser Talking Stage 4 B C

2010-12-01T11:30:00.001-07:00

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.

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.

Using your Support System

2010-11-30T11:18:00.000-07:00

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.

What am I going to eat today?

2010-11-29T11:30:00.001-07:00

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.

For BC Survivors Traveling by Air

2010-11-28T11:40:00.000-07:00

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.

CT Scan Do-Over

2010-11-27T11:30:00.001-07:00

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.

CT Scan this Morning

2010-11-26T11:30:00.001-07:00

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.

TED Video ~ Dr. David Angus: A New Strategy in the War against Cancer

2010-11-25T12:01:00.000-07:00

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.

First Lunch with a Cancer Buddy

2010-11-24T11:30:00.001-07:00

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.

24 hrs in Review

2010-11-23T11:30:00.001-07:00

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.

Smoothies Really Help

2010-11-22T11:30:00.002-07:00

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.

Shout Out to ~ Variety’s Power of Comedy

2010-11-21T11:30:00.001-07:00

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

Coffee for D and Tea for Me

2010-11-20T12:00:00.000-07:00

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.

Digestive Issues Continue

2010-11-19T11:30:00.001-07:00

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.

I Have New Glasses

2010-11-18T11:04:00.000-07:00

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.

Meds for Cramps

2010-11-17T11:30:00.001-07:00

I talked to the nurse about the on again and off again cramps I’ve been experiencing over the past three weeks and she thinks its gas. In the past I’ve used Metoclopramide for relief from the effects of other chemos and that usually worked but I’m not having the same success this time with Brivanib.

So after three days with the trots, and then two days with no bm, I took two Senekot S and went to bed. Too late, I woke up around 11 with cramps and couldn’t sleep. So I got up and sat in a comfy chair and wrapped myself in blankets. This helped the cramping a little and I nodded off here and there. At 5 am I had the bm I’d been looking for. After that I found my way back into bed and had a couple of hours sleep before the alarm went off.

I’m going to give Metoclopramide one more try and take it exactly as prescribed, four times a day until I see the nurse in a few weeks. Otherwise, I’ll be looking for something else.

All Day at Clinic - How I metabolize the Chemo

2010-11-16T11:34:00.001-07:00

Yesterday began a long day at the clinic; my Onc needs to see how I metabolize the chemo drug Brivanib over time. I was told not to take my chemo until I got there because they wanted to take my blood first. A nurse drew six vials through an IV in my wrist then took my bp and temp … both normal or near normal. Then I took my chemo. She repeated this twice over the next six hours.

As the day progressed, the trials nurse came by and I asked how my blood work was. She looked down and said where did your platelets go? My levels are 81 and should be at least 140. Platelets are the little guys that gather at a wound and clot blood. This not a big concern just yet.

We also discussed my high liver function numbers from two weeks ago and these tests show that they continue to go down, meaning the chemo is still working. Some numbers are now down to just being plain old high. Yahoo !!

My next blood work up is in two weeks, for just an hour.

Fluid in my Calves and Ankles

2010-11-15T11:30:00.001-07:00

For about a week now, I’ve been having this thick feeling in my calves and ankles. I figure it’s a buildup of fluid also known as edema. It all feels tight … sort of like I’m wearing support hose when I am not and my legs feel stiff like boards.

Yesterday I noticed indentation marks around my ankles left from the elastic socks, tho my shoes still fit fine; I know it’s only a matter of time. When I was on Taxotere in 2008/09, my ankles became so swollen I had to cut the sides of my socks to allow for expansion. And my feet were so full of fluid that 99% of my shoes didn’t fit, they were just too tight. And when it got to that point, I wasn’t very steady on my feet anymore either.

It’s a side effect of Brivanib because when the Onc was first examining me before I was approved for the trials drug four weeks ago; he said … now let’s have a look at your ankles. I knew then it only meant one thing … I will be losing those beautiful thin ankles of mine. Darn it!

Tykerb - A Late Stage Cancer Drug

2010-11-14T11:30:00.001-07:00

Tykerb is a late stage breast cancer drug prescribed for HER2-positive metastatic breast cancer patients who have exhausted all other treatment options.

The big problem is that it’s not covered under our Alberta Health Care Insurance Program, leaving the patient to bear the huge monthly cost. In an Edmonton Journal article, Kelly Mah with mets writes… “Both my husband and I have good jobs, but a cost of $3,500-$4,000 a month for the rest of my hopefully long life would be financially crippling. I became so stressed and depressed that I even contemplated forgoing the drug and letting nature take its course.”

About Tykerb from a Cross Cancer Centre Institute medical oncologist and U of A assistant professor Dr. Katia Tonkin says in the Edmonton Sun about Tykerb..."It really is a tremendous new class of drugs in breast cancer for what can be a very difficult group of patients to treat. I think it's very important to have it available," she said, adding it's "appalling" that anyone wanting to take the drug would have to spend tens of thousands of dollars a year.

Taking up the fight is fellow bc blogger Brenda from Brenda’s Breast Cancer Journey .. she has petitioned our politicians demanding that Tykerb be covered under our Alberta Health Care Insurance Program. Way to go girl !!

I hope that sharing this info about Tykerb will give us mets folks access to all treatment options. Treatment options are what keep us alive and kicking. So the next time you hear about the new drug Tykerb, you’ll know something about it.

My Newest Daily Routine

2010-11-13T11:30:00.001-07:00

OK, I’ve officially been on Brivanib for three weeks now and I have to say, this last week was much better than the first two … and that’s for sure. And the really good news is that I’ve got all the side effects down to a dull roar.

My daily routine starts off with the alarm going off at 7:30 and I drag myself out of bed. After a few minutes, I take three bp readings, have my coffee and take four Brivanib pills. At 8:30 my cell phone alarm goes off to remind me to take my two bp meds, have some more coffee and some breakfast. After a bit it’s mid to late morning and I go over my blog and post it. Then I lay down for an hour snooze; I feel so refreshed afterwards.

I then get up for good, have a high protein ensure drink for lunch, shower and get dressed. If my energy is up I get out of the house and taking care of any stuff. If I’m not feeling so chipper, I wrap myself up in blankets in front of the TV, grab my laptop and surf.

Around 6: we have supper and D and I watch the evening news. When my cell alarm goes off at 7:30, I take three more bp readings and average them all in a spreadsheet for my Onc. By 9:00 I’m in bed and after a bit of TV, its lights out for the both of us.

I keep up this daily routine with the alarms and all to help me stay regular and on track with my meds. When you’re on chemo, you occasionally forget to do things. My memory is so bad these days … and between that and being so lazy, I’m afraid without some type of scheduling, some days could go by and I might not get anything done at all.

The Scar Project

2010-11-12T09:44:00.000-07:00

According to the website, The SCAR Project is a series of large-scale portraits of young breast cancer survivors shot by fashion photographer David Jay.

The pictures are all of women between the ages 18 and 35. All the ladies are topless and bear the physical scars of breast cancer.

Warning this five minute video has nudity in it.

BP Check at the Clinic

2010-11-11T11:38:00.001-07:00

This past Monday I got a call saying the trials nurse wanted to see me Wednesday. My first reaction was oh no … I hope there are no surprises in store. But it turns out all she wanted to do was check my bp. Because I wasn’t seeing her for eight days, she wanted to have a quick peak on what my bp levels were.

So the nurse proceeded to unravel a thigh cuff … I said, don’t you want to use my arm now? Oh I forgot, no more PICC eh? she just grabbed the thigh cuff out of habit. Then I said, I think we will be pleasantly surprised by the numbers and sure enough we were.

My first reading was 133/84 … yahoo! Wow that is really good she said. Prior to coming here, I said to D, I am going to take our home bp monitor with me to compare with the clinics monitor. So she alternated bp monitors, taking three more readings. They were all pretty well in line except, our home monitor appears to be five points higher on the systolic. That’s good to know and I will adjust for that.

Each morning I take three readings and average. This morning my bp is 122/85.

PICC Infection and BP Update

2010-11-10T11:12:00.000-07:00

Thought I’d give you an update on how my old PICC line site is doing and how I’m feeling. First off, my PICC infection is doing better. It’s nowhere near as itchy as it was a few days ago; the redness and puffiness are down too … it all looks a whole lot better.

Next, my bp appears to be nearing normal levels using my drugstore bp monitor. I’ll have to get those verified by the nurse at the clinic tho. I’m thinking the bp medication takes a while to kick in because I’m not doing anything different.

I should be doing some walking now that my liver function has improved but I have lethargy kicking in from the chemo. Still, D says I should come with him and the dog when they go for their after supper walk. Even if we go just part way and turn around, that would be a good start.

New Metastatic Support Group

2010-11-09T11:46:00.000-07:00

I am thrilled to say that the Cross Cancer Clinic is now offering a Metastatic Cancer Support Group for women. The focus of the group is to encourage dialogue among women with metastatic cancer. The launch of this program has been such a long time coming for all with mets.

The common ground that brings mets gals together is to help each other deal with the emotional realities when faced with living with mets. Each gal sharing their personal experience on treatment, how they cope and how they find hope.

I attended the very first two sessions and found that they’re so helpful to me. For example, last week we talked a bit about finding hope when hope is hard to find. I shared my experience to the group, sometimes when I’m low on hope, I create my own. I schedule a special event like go out to a dinner theater, maybe a mini vacation like a family visit in another city or just go out and buy a new outfit.

For me, I find it always helps when you have something to look forward to and focus on. While this support group might not extend your life here, participating will give you a better quality of life while you are here.

So if you are in the Edmonton AB area and living with mets and would like to join, call the main reception number of the Psychosocial and Spiritual Resources Program at (780) 643 - 4303.

Low Blood Protein

2010-11-08T11:22:00.000-07:00

During my Onc visit this past Thursday they said my blood albumin level was lower than it should. Albumin is protein made by the liver. Low albumin could be a sign that my liver is struggling or that I’m low on eating enough high protein foods. Maybe it’s both.

I say it’s more likely that I’m not eating enough protein because when I started the Brivanib, I was having so many issues, a couple being nausea and cramping in my belly. That is when I decided to completely cut out dairy products out of my diet. I’ve found from previous experience that occasionally chemo and dairy don’t mix. I’ve done this before and had low albumin.

Anyways, this past weekend I’ve started to introduce dairy products back into my diet and so far so good. I’m hoping that just a bit of dairy daily and a protein shake, I should be back to normal soon.

PICC Line Infection

2010-11-07T08:51:00.000-07:00

Two weeks ago, I developed this itchy rash just above my PICC line. I put some hand lotion on it and wrapped it with gauze so I wouldn’t scratch it. The redness you see in the pic only lasted a day and disappeared, however I could still feel the rash and the site was still itchy.

Two days later I had a PICC dressing change and everything looked normal. Then at this past Thursday’s PICC dressing the rash was back and it moved closer to the PICC hole. The nurse decided to dress it in such a way that there would be minimal adhesive touching the skin around it, allowing time for it to heal. I would have to come in every second day to repeat this special dressing change. So yesterday, I went in and when she took the wraps off, it didn’t look good… to the point that it was just starting to get infected around the PICC hole. It was itchy, it was red and it was warm to the touch.

She asked me what the PICC line is used for. I told her we use it for blood draws because of my damaged veins … not for chemo. We then weighed the options; she thought that if she pulled the PICC out now, it will likely heal on its own. If we wait and see, it will get worse and I would need antibiotics. My Brivanib chemo and antibiotics just don’t mix … together they’re too much for the liver to handle. I sure don’t need a full blown infection and stop my chemo, right when it started to work.

Before I left, the nurse used a black marker to outline the infected area. She said if the redness goes further, I should get back to her asap. So once again I am PICC less and it feels great. Here’s that pic.

Nurses Singing in the Chemo Room

2010-11-06T09:10:00.001-06:00

Last Thursday in the Chemo room, I noticed some nurses gathering in one corner. Then all of a sudden they broke out into song … similar to what you have in restaurants when someone is having a birthday. Except instead of singing the words to Happy Birthday, they made up some other words which went something like this … Happy last chemo to you, happy last chemo to you, happy last chemo dear *****, happy last chemo to you … and never more. The smile on the recipient’s face was big as big can be. I thought to myself, now that is pretty cool. And it happened once again a short time later.

As I was waiting for someone to book an appointment for me, I sat down beside one of the deserved gals. She had just received her last chemo and nobody could ever wipe that smile off her face. She was pretty happy and on top of all that she was getting her PICC line pulled too. We chatted for a while about our PICC line experiences and found out that she was a bit nervous about having it pulled. I said, this is my second one and when they pulled the first one, I felt no pain or discomfort. I think that put her a little at ease. I asked if I could watch and she said sure. Unfortunately, I had to leave when the nurse called me up to book my next appointment. Too bad I couldn't be there for her.

Tests and Saw the Onc

2010-11-05T10:17:00.000-06:00

Yesterday I was at the clinic for blood tests and to see the Onc. First stop was to get my blood drawn out of my PICC line and then have it redressed. Then I stopped at the coffee shop for a bite to eat and a small coffee before my Onc appointment. As I was sitting there looking ever so relaxed, the trials nurse happen to walk by and said, would you mind if I check your bp? Sure, she went and got a bp monitor and proceeded to take my bp. Unfortunately, It was still high. She then said let’s go find a bed and see if we can get a better reading. After a couple more readings, it’s still high and maybe a tick higher.

The nurse left to talk to the Onc and before you know it, around the corner here he comes. He listened to my heart and took my pulse and poked around my liver. He asked how I was feeling and I told him that I’m feeling better but struggle with irregularity. He said … well ... that’s par for the course.

The Onc and nurse both left for a short while and then the nurse returned with another bp prescription, 5 mg of Amlodipine. And that’s on top of my 10 mg of Ramipril. She also said I should purchase my own bp monitor with a leg cuff to read between clinic appointments.

Then we looked at my blood work which showed a further improvement in liver function. Sorry I don’t have any numbers for you … I was a bit distracted with the high bp. On the down side, the protein level in my blood is down so I need to increase my protein intake. So to help get that going, the nurse gave me a few protein shake samples.

I am Feeling Much Better

2010-11-04T09:39:00.000-06:00

Last Tuesday, to help get my high blood pressure under control, I started taking 10 mg of Ramipril, up from my original 5mg dosage. It was early that afternoon when it occurred to me … I am feeling much better. I said to D, wow no headache, no chills and there was less dizziness and next to no nausea. Today I’m feeling better yet. It looks like the Ramipril is doing its stuff to counter the chemo.

The next issue on my list is irregularity. If you remember I was constipated mid last week and then diarrhea on Sunday and then constipated again the next day. I took a couple of Senekot S on Tuesday night and finally it happened … a bm late Wednesday. Hurray! This is probably way too much information but no cancer blog is complete without some discussion on poop.

I’ve been eating lots and lots of fruit and drinking oodles of water. I sure hope I get this irregularity figured out soon.

New Canadian Cancer Staging Initiative

2010-11-03T10:28:00.000-06:00

We now have a new National Staging Initiative to collect standardized data about cancer stage across Canada. It’s a first- of- its-kind long-term collaboration that should improve care and save lives.

Staging refers to the classification of patients with cancer into similar groups according to the extent of disease. On an individual basis, physicians need staging in order to determine prognosis and make informed treatment decisions. On a national basis, staging is important because government can use staging to determine survival by stage, to evaluate screening and treatment, to compare information across the population and over time and for planning and administration.

Blood Pressure Update

2010-11-02T11:17:00.000-06:00

Yesterday I had an appointment at the clinic to have my bp checked. So the research nurse called me in and I assumed the position, laid down and on my back. We have to use my leg to take readings because we can’t use my arms. I have a PICC line in one arm and lymphedema in the other. She took three readings, all being around 168/85. That’s down from 170/101 last Thursday because of 5mg of Ramipril that I’m on. She asked me if I was still having headaches and I said yes. They seem to be with me all the time to some degree even tho I take aspirin.

OK she says, I’ll go see the Onc to see what he has to say about these numbers. She came back and took one more reading … 140/85. That’s much better I thought. She then said the Onc wants you to double your Ramipril and we’ll reevaluate this coming Thursday.

Some Regularity Needed

2010-11-01T10:08:00.000-06:00

At the beginning of last week I was constipated for a couple of days. So when I saw my trials nurse last Thursday, she said, don’t wait three days before you treat it. So that night I took a couple of Senekot S because it’s worked well for me in the past. Senekot S is a stool softener and laxative combo. I took two and I was back to normal the next day. Great I thought, now I’ll just up my fruit intake so this doesn’t happen again.

Things were going along pretty good until yesterday. It was noon and besides having a banana that morning, I really wasn’t interested in having anything to eat. It then occurred to me that I hadn’t had a bowel movement yet either. I thought, oh boy, here we go again … constipated.

Well I was wrong because as soon as I had some solid food, I soon got diarrhea. Arggg!

New Breast Cancer Treatment

2010-10-31T10:40:00.000-06:00

Here is a two and half minute video on a new innovative breast cancer treatment … partial breast irradiation.

Daily Brivanib Side Effects

2010-10-30T12:44:00.000-06:00

After being on a few different chemo regimens, I’ve learned the best thing to do when starting a new one is to keep a daily diary of the side effects. It just makes them easier to manage and to reconcile them when and if they are better or worse in my mind. Also, when the nurse asks me how the last week was I can give her a detailed list of what went on. She really likes my list.

These are a few side effects I experienced daily …

woozy and drunk like till noon and then tapers off to nothing around 5 pm
chills and nausea … mild
fatigue
blood stained mucus … minimal
a rash just above my PICC line … minor

When I signed up for this clinical trial, the Onc warned me that my bp will probably go up. And mine is now 170/103.

Anyways, he put me on 5mg of Ran-Ramipril and said we’ll watch these numbers closely and adjust as required.

Results after One Week on Brivanib

2010-10-29T11:23:00.000-06:00

After having my blood drawn and PICC line redressed at the clinic, I spent some time catching up on emails and surfing. I was feeling a bit down going into this appointment because of my dark urine earlier this week and I was not expecting good news. Anyways, the nurse and I went over the side effects I documented this past week. She then brought out the blood work and said with a smile, your liver numbers have gone way down. Really? Yes, my overall liver function has improved by 20%.

Then my Onc came in to the room and joined in. We all sat there with a look of surprise and then I saw a small smile come across on my Onc’s face … that said it all for me.

I can honestly say we all were very surprised by these results, especially after having dark urine this week. But for whatever reason, my body is very receptive to this new chemo. I’m overjoyed.

And then when I got home more good news … D said a lady from the Credit Union came by and dropped off these flowers and some chocolate. Apparently, she said they read my blog and just wanted to give me some flowers. There was no card and so I don’t know who this is from. However, I want to thank you so much because it just made a wonderful day that so much more wonderful.

Sears Coffee Group Meeting

2010-10-28T10:35:00.001-06:00

Our Sears Coffee ladies group decided to visit one of our own who is in hospice. J’s daughter T greeted us at the entrance to J’s room. We all walked in and started chattering just like a bunch of school girls. First thing was for everyone to find a seat … of course that included our mascot Ari. He found a spot on the bed amongst J’s assortment of soft and cuddly stuffed bears. Unfortunately he kept falling over … giggling that he was being too rambunctious, we had him sit on S’s lap so he’d behave.

Then we checked in with J to see how she was feeling. She has had a drain put in from her liver so she is not looking jaundiced any more. She said today was a good day and had quite a busy schedule this week… visitors and such. She said she was happy because everything she needs is taken care of. Then we checked out all her doodads on her shelves and that were pinned to a cork board. We admired some newly added photos, we checked out some of her lovely flowers on the shelf and talked about the nice view she had out her bedside window. J said she enjoyed the little things like the pigeons that circled around the building for her.

We chatted about what’s new with all of us. I talked about how my chemo made me feel drunk like and of course we got a few jokes and chuckles out of that. J presented each gal with a book mark with inspirational message. Each one specially chosen for each of us… mine said … ‘May God give you a rainbow for every storm’. J I will cherish that, thank you.

Then it was time for photos … C said she didn’t want to be in the front. Once again we had some laughs … trying to rearrange five ladies around a bed … to fit into a picture.

As we were about to leave C decided to share a joke that had been sent around on email. She did a great job telling it and we all laughed pretty hard.

Soon it was time to leave, each gal giving J a kiss and a hug and a few private words.

Feeling Better after a Rough Patch

2010-10-27T12:12:00.001-06:00

My coughing from allergies is way better and I’m crediting that to our first snow fall.

As this past Monday wore on, I thought … is my urine getting darker? Sure enough, Tuesday morning, my first pee of the day shocked me. It’s was a dark brown color. I contacted the research nurse and she asked if I was turning yellow … jaundice. I said no. Great she said, we’ll do blood work on Thursday when we see you. She reminded me to drink 6 to 8 glasses of water every day. And sure enough, after drinking a whole bunch of water … my urine is now clear again.

Apparently my billirubin levels were sky high to begin with and that combined with the Brivanib I just started; my liver just isn’t able to properly remove the bilirubin from my body. It then exits through the kidneys and into the urine turning it dark brown.

Mammogram by Lady Ta Ta ~ Video

2010-10-26T11:31:00.000-06:00

I wanted to share a fun video that I first saw on my friend Dee's mets blog … Dee’s Updates.

The four and a half minute video is a parody of the Lady Gaga song "Poker Face" inspired by the folks at Susan G. Komen Foundation.

Update on how I’m Feeling

2010-10-25T09:48:00.000-06:00

So I thought I better do an update on how I’m feeling outside the clinical trial side effects. For the last couple of weeks I’ve been struggling with what I think are environmental allergies. It started out with wheezing during the night which I’m treating with a nightly dose of Benadryl.

I don’t wheeze anymore but during the day, my chest feels so full. I cough and later have some shortness of breath. I find this especially when laying down or getting up from a laying down position. I’ve coughed so much I’m hoarse. My nose is a bit stuffy and my head feels a bit headachy.

I’ve also been experiencing the chills. This started a couple of days after getting my flu shot last week. I’m not too worried about this because my temperature remains normal.

Other than that … there is fatigue. I really have to plan and monitor my activity so I don’t over tire myself. If I do, I easily become emotional, anxious and nauseous.

Three days on Brivanib

2010-10-24T11:37:00.000-06:00

So I’ve been on Brivanib for three days now and I thought I’d share what I’m experiencing. About 40 minutes after I take it, I feel woozy and drunk like, to the point that I should not drive. Even my laptop screen is blurry. About two hours later and after I’ve had bite to eat, the dizziness and lightheadedness pretty well disappears and I feel quite normal.

I think I’m already getting a bit lazier because the couch is getting just a bit too comfy.

This change in my treatment is causing me to change up my blogging schedule a little. I used to like writing my blog every day with my morning coffee. But now I have to lay out some thoughts the night before when I’m thinking clearer and can string some thoughts together. I’ve also made a mental note not to schedule any morning appointments, for now anyways.

My Final Press Interview

2010-10-23T11:17:00.000-06:00

Ok, this is the last newspaper article with me in it … this week I’m in the Edmonton Examiner. The story is still part of me helping the Canadian Breast Cancer Network with their campaign to promote Metastatic Breast Cancer Awareness Day.

If you’re in the Edmonton area, I invite you to pick up a copy of this week’s paper or go here for the online version to read what I had to say. Working with the reporter from the Examiner was nothing but a pleasure. Not only did she help me get the message across accurately but she came by to take the lovely picture of me and my dog Daisy.

I’m kinda glad this promotion stuff is all over now. I’m exhausted.

Eight Hours at the Clinic

2010-10-22T11:26:00.000-06:00

I was pleasantly surprised when I got to my room on the ward and saw two beds … yes believe it, semi-private. My roommate was a lung cancer patient who was also there on a study drug. The nurse said, you will be here the longest … you get the bed closest to the window. Oh my, that was music to my ears. Being up so early in the morning, I was feeling wiped already so now the thought of crawling into a bed with a warm blanket was simply divine.

Anyways, once we all got organized, the nurse took eight vials of blood through my PICC line. I was pretty excited about that because my hand was still badly bruised from my visit to the lab last Friday. She checked my bp and then gave me my first four tablets of the trial drug Brivanib Alaninate. I had blood drawn three more times throughout the day, along with having my bp checked.

I was so comfy in bed that I skipped breakfast and just watched DVDs and checked email. As lunch approached, I decided it was time to get up and find some food. As I got up and walked down the hall to the cafeteria, I sure felt woozy, like I had a couple of drinks.

At the end of the day, I was sent home with a log book and a three week supply of Brivanib. They want me to take it once a day, everyday at exactly the same time. I’ve settled on 8:30 in the morning and they can be taken with or without food. Because of the clinical trial the nurse warned me about taking any other drugs and to consult her first. She suggested if I do need to see a doctor, that I bring my clinical trial consent form with me.

Finally ... I’m on the Clinical Trial

2010-10-21T07:15:00.000-06:00

Yippee yahoo … I’m on Brivanib Alaninate!

Yesterday at the clinic, the nurse came checked my blood pressure. After that the Onc came in and gave me a physical exam and discussed my health in general. I said other than being a little tired, I was feeling pretty good. He looked at all my test results. Everything looked good except some of my liver numbers were high … sky high. He said I made it in … just under the maximum … with only a few points to spare.

Long story short, the nurse asked when I’d like to start and I said … ASAP. Excellent, we’ll see you tomorrow morning at 8:00am … bring breakfast and lunch. Your appointment will last eight hours and blood will be drawn every two hours. Here’s hoping my PICC line can be used for that.

A WomansDay.com Article

2010-10-20T11:51:00.000-06:00

About a week ago I received an email from a writer from WomansDay.com. She said she was working on a story for WomansDay.com about breast cancer bloggers and she wanted to include me in the article.

She said she wanted me to write something about my experience with breast cancer. Also to say something about the impact I’ve had on other breast cancer patients and the cause in general. She said she wanted my personality to shine through and to give their readers an honest view of what I’m currently going through and what I have already gone through.

I feel so honored to have been offered the opportunity to share my story on such a large stage. To see the article ... click here.

The Flu Shot

2010-10-19T10:36:00.000-06:00

Yesterday D and I drove to the local mall to get our flu shot and get a bite to eat at the food court. We were the only ones standing in line. We started talking to the gal who was directing folks to each of the nursing stations for their shots. After a bit of small talk she said she was a trained psychologist and was also on the lookout for people with high anxiety.

She directed us to a nursing station were D and I sat together. The RN said we’d get a vaccine for three types of flu including H1N1. I said that I’d like to get my shot in my thigh because I have lymphedema in one arm and a PICC in the other. So the RN ushered me to the back where they had a screen setup.

After my shot we went back to meet D who’s biggest concern at that point is if he could get a sucker in case he started to cry. The nurse and I only chuckled a little bit. She said we don’t have suckers this year … only stickers. Just then we saw a mother and a two year old in tow who just got his shot. He was smiling and waving to everyone as he passed by. What a little trouper.

After the mandatory 15 minute wait for a negative reaction, we headed over to the food court were we felt like having Chinese.

This morning, my thigh was only mildly sore where I got the shot … if this is all it is … I’m ok.

Photos of my day on Parliament Hill

2010-10-18T10:46:00.000-06:00

Hey everybody - I finally got around to doing a blog showing off the press photos taken on Parliament Hill with the Canadian Breast Cancer Network gals and me meeting our parliamentarians.

Because of the CBCN, the folks on the Hill have a better appreciation of what all us METs gals are going through.

This was a once in a life time experience and it was so cool because they were really listening to what we had to say. I’m so proud.

Here is a shot of me in conversation with Senator Vivienne Poy. To see all 19 pictures, click here.

Vote For Health ~ An Initiative of the Canadian Cancer Society, Alberta/NWT Division

2010-10-17T10:17:00.000-06:00

As per the Canadian Cancer Society’s website …

On Monday, October 18, Albertans will head to the polls to elect new city and town council members. The Canadian Cancer Society urges you, the voters, to consider health when casting your vote on election day.

The Canadian Cancer Society acknowledges the important role governments play in the prevention of disease. As such, we have educated candidates in municipalities throughout the province on important issues of health and surveyed them for their stance on each. The goal is to identify candidates that support healthy public policies and thereby empower you to Vote For Health in your communities.

To learn more about election issues and to find your community for a list of candidates in your area, please go to http://voteforhealth.ca/index.html.

A Full Day at the Clinic

2010-10-16T12:31:00.000-06:00

It was seven hours at the clinic yesterday starting at 9:00. First off I saw the research nurse to sign the trial chemo consent form. We chatted for a while and then she gave me a requisition for blood work and heart tests. Come and talk to me when you have a break between appointments she said. Next I went for my CT scan. First thing, change into a gown, get an IV in and have a two liter contrast cocktail. 45 minutes later, I was laying down getting scanned. 20 minutes later I was back to my street clothes.

Next it was off to get my blood work done. They also needed a urine sample and did my Electrocardiogram (ECG/EKG). Now I had some time. I went back and found the research nurse. We found an empty room where she reviewed my test results and asked me some health questions including how I’ve been feeling, what medication I’m on, including vitamins and such. She took my blood pressure and asked if I had any questions. I asked if I should get a flu shot … she checked my white blood cell count and gave me the thumbs up.

After that I slipped over to the cafeteria and a bit of lunch. This was the first time I ate today because I had to fast for the CT scan. I had some time and decided to go to my Echocardiogram appointment early. I felt I had been waiting too long and was wondering why I wasn’t being called when all of a sudden it hit me; I should be in X-ray instead Nuclear Medicine.

Fly over to X-ray … to … we were looking for you. Argg! I changed back into a gown and had my Echocardiogram. So now I am running behind schedule. Change back into my street clothes and run back over to Nuclear Medicine for my radioisotope bone scan injection. Fortunately, they used the IV line inserted earlier for the other yummy imaging stuff. She asked did you want to wait here for the stuff to circulate or leave and come back? I said I need to go over to Daycare and have my PICC line redressed. Then it was 45 minutes on the table for the bone scan.

It’s now kissing four o’clock …. and I’m thinking that I definitely need a couple of aspirin when I get home. I’ll get all the test results this coming Wednesday.