Second side of the triangle

Rob's friend took the time to thoroughly review Carolin's file. He wanted to make sure we talked about Herceptin with the LA doctor as the tumour was HER2 positive. In Canada they save that drug to use if the tumour reappears, which strikes us as closing the barn door after the horse has bolted. It may be controversial but that's the sort of options we want to know about.

He noted that the calcium levels in her blood were high and if they stayed high, he'd try another bone scan to check for problems there. The arimadex option got two thumbs up from him. Good to know. Showing that cancer is a big, complicated field he said he wasn't sure the stem cell approach was worth the effort. Some say yes. Some say no.

So far, so good

As Sandy has said, yesterday went fine. With the exception of having 2 I.V.'s. I felt fine when we got home and read until about 10 pm. This morning I went for a 30 minute run. It felt good and I felt strong. A few minor side effects today - flushed cheeks, tingly lips and a bit of a numb tongue. Nothing compared to the nausea of the last round of chemo.

Wednesday Jan 5 we leave to LA at 6 am. We have an appointment on the 6th with Dr. West and an appointment on the 7th with his oncologist. Right now I (with help from my friend Michelle) am gathering pathology slides?, mammogram report and films for Dr. West. A little late for requesting the mammogram results I think. Not much to do in that area any more!

We talked to Dr. Hicks yesterday during my chemo. She felt very strong about me taking Arimidex rather than Tamoxifen after my radiation. That was different from her partner Dr. Patterson who was more confiedent staying with the tried and true Tamoxifen. Dr. Hicks was also supportive of us getting a second opinion from the US and would read any reports/treatment options that we come back with. She says that I am on the strongest chemo at the highest doses right now.

That is about all to report now. Hopefully I feel good again tomorrow.

Love and best wishes to everyone for a Happy New Year.

Carolin

Next chemo round has been started

Today Carolin started her post-op round of taxotere. It's four treatments each three weeks apart. So far it hasn't been any trouble (says the guy without the hole in his arm). No nausea. However, there are hints that it won't be as easy as it seems. The nurse says that they can't use regular tubing for the IV because the drug eats it.

Pam flashed her know-how, credentials and winning personality (she's got a lot of credentials) and got an opinion at the Huntsman Cancer Center in Salt Lake City. They mentioned two things that were very interesting. They would start collecting stem cells now to be used later to help Carolin's recovery from agressive chemo. First we've heard of that trick. Second, if the cancer reoccurs there are all sorts of things that can be done. Hopefully we won't have to check back on them on that one. They also have a drug trial that Carolin may qualify for.

Pam understands genetics and is going to see if there's any targeted treatments if Carolin should test positive for a genetic mutation that's responsible for 5% of breast cancers. We'll step up the pace here to get the test done (blood test).

www.huntsmancancer.org

Chemo #1

Well today is Chemo #1 of 4. A new kind this time - Taxotere. I'm not sure of what to expect. I do know that the new hair that has grown in will be gone in about 2 weeks. It won't be as hard this time around. Disappointing though. Chemo is at 2:00 pm and a chat with the doctor at 3:45 pm. Will keep you posted as to how things turn out. Wish me luck!!

Dr. West in LA

Carolin's planning to see a US specialist in the first week of January in Los Angeles. This will help to triangulate the US second opinions as both Pamela in Salt Lake City and Rob in Washington have offered to twist the arms of experts they know for their thoughts.

We've had a lot of cards, presents and good wishes from our friends during this time before Christmas. I hope we've been able to convey how much we appreciate your thoughts. This is all new to us and frankly, overwhelming. Your support helps us keep perspective and sanity - not necessarily in that order. Thank you again.

Talked to the top doc

We have some clarifications now and we just have to figure out if we like them. The tumour grade was 8 out of 9 - so that's the numerical translation of "hugely aggressive". The stage is IIB (much better than III). There were live cells in the tumour and as it had penetrated into the veins, it is more likely that microscopic cancer cells are looking to relocate elsewhere. Less satisfactory were the range of choices for treatment. Despite pointed questions the options for Carolin are exactly as laid out elsewhere in the blog. No more agressive options. No less agressive options.

The answer to the question "what can I do to be one of the 40% that survives" didn't get a good response: Clean living, exercise, sunshine, and a balanced diet. Apparently Readers Digest has it right. That's what we know. Now we have to figure out what we think about it.

The dark cloud is lifting

The past week has been very hard for me. People ask how I am feeling and I have responded as follows. Physically I am fine. Back to runnning and I have even started doing some weights with my sore arm. My mobility is about 85% on that arm as well. However emotionally I am a mess. I feel like I was giving my death sentance last week - not much hope. I guess when you add that my tumor is "hugely aggressive" with "60% chance of reoccurance in 3 years" I automatically put myself in the 60% category. I must admit that I am scared. And mad. I am thinking about things like not buying things for myself that will be for the long term. And better get Jessica's scrapbooks up to date.

But things are starting to look better. Sandy and I made a list of questions that we want answered when we see the doctor today. I have received lots of positive support from friends and family and reminding me that I can also be in the 40% category. I am reading the book by Lance Armstrong called "It's not about the bike". I am about 2/3 the way through it. It is truely inspirational. I slept good last night for the first time in a week. While I was doing my stretches this morning the clouds broke open and the sun started to shine directly on me. I felt positive and strong.

Now having that all said we are going to be asking some pretty direct questions this afternoon about survival rates. Hopefully I am ready to hear the answers. What is worse not knowing or knowing? That I don't have an answer to.

So I have about 4 hours to bask in the glory of positiveness. We will see how I am feeling at hour 5.

Keep you posted.

Love Carolin

Your only get one life to live

We're going to talk to our doctor again but common wisdom says to get two (or more) opinions on things that matter. So we're looking into the fancy medical facilities in the US. We're particularly leaning towards the Mayo Clinic. It certainly isn't going to be an average Christmas.

Ugly facts

These are from our notes taken during our meeting yesterday:
- 60% chance that the cancer will reoccur elsewhere within 3 years
- no cure for reoccurring breast cancer. We didn't believe that but found it substantiated at the US cancer site:
www.cancer.gov/cancertopics/wyntk/breast/page4 It's under the topic of "Recurrent Breast Cancer".

That is an ugly combination of facts.

- 7 of the 19 lymphnodes removed were cancerous. The largest tumour there was 1.2 cm. Any more then 5 lymphnodes involved is judged to be serious.
- Carolin's main breast tumour was 4.5 cm. At five cm she would have been bumped up to the next stage of cancer (a bad thing).
- her tumour is sensitive to estrogen and progesteron. The sensitivity was rated 3 out of 8, but that's good as there are drugs that can block a tumour's use of those two and "starve" it.

What tumour? Well there can be microscopic cancer cells floating around in her that are looking for places to settle down and grow tumours. The next round of chemo (Taxol) is suppose to kill them (same as the last bout was to kill them). The likeliest places for it to reoccur is liver, lungs, and bone. How do they know if the cancer has come back? The answer left us confused. The regular checkups (every 3 months) didn't seem to involve anything fancier than a tongue depressor. I think we missed something....so more, later.

The doctor had bad news

Carolin's tumour is "hugely agressive". It had invaded the blood vessels in the area which increases the likelihood it has spread somewhere else. As there isn't any current indication of it being somewhere else the treatment is still considered curative. However, once it is discovered somewhere else the doctor says there is no cure and they only do treatments for symptoms. So we are starting another round of Chemo on Dec 28 (one week ahead of schedule) with radiation to follow. After that she'll see a doctor every three months for several years watching for reoccurence.

After radiation there's a 5 year treatment program with another drug (pill). A newer drug is available that gives a higher survival rate but there are several snags - Carolin needs her ovaries removed first and then health care won't pay for the drug. There's time for that decision in the Spring.

Things are coming along...

Hi everyone!! Well as the title says, things are coming along. I had my first physio appointment last night. It started out with a small lecture on lymphodema. It is a swelling in the arm that can happen anytime for the rest of my life. The lymphnodes that were removed are the infection fighters for your arm. So I was told to imagine that my arm is wrapped in saran wrap and that for the rest of my life try not to break the seal - no cuts, bug bites, hang nails, needle sticks, blood pressure taken etc. I am also not supposed to carry my purse or backpack with that arm. The list is quite extensive. Then we went into the gym to do our exercises. Needless to say that I wasn't do them all correctly. I found out how very important and serious it is to do my exercises twice a day and to try and gain mobility with each session. I was very sore driving home and proceeded to have myself a good little "pity party" when I got home. Jessica was very sweet and gave my one of her favorite stuffed animals to make me feel better. I know that Sandy wants to help but unless he can do some of the exercises for me there isn't much for him to do. I guess just make sure that I do them so that I don't regret it later.

Today I started to fix my attitude and went to the gym and actually startd RUNNING again. Hurray!!! It wasn't much just a few minutes of running and a few minutes of walking for 40 minutes. I felt great accomplishing that. Running didn't bother my legs or lungs but my incision area is hyper sensitive so that the movement created by jogging hurt. I knew it was going to hurt so I stiffened up and that made me run like a robot which made things hurt more. So I will need to start working through that whole process. I willl try to run outside tomorrow and see how that goes.

I am supposed to have all my mobility back in 6 weeks. And let me tell you that from where I am right now, that seems like a huge feat. When I get my mobility back is when I can start doing weights again - January. But I have a bit of a challenge. My good friend Karen is going to start working out with me in January after a 6 year hiatus. So come January we should both be at the same starting point - that would be at the punny 5 pound weights - together. I look forward to working out with her and being back in good shape by summer.

I also need to tell everyone about someone wonderful who has really taken the cancer cause to heart. That would be my Auntie Carol in Edmonton. She has many people in her life who either have or had cancer and so she decided to shave off her hair and raise money for cancer!! I am so proud to say that she has raised over $2900. She shaved her hair off and looks as wonderful as she always did. Thank you to her and her family - Uncle Chuck, Chad and Sean - for their support. What an amazing thing to do!!! I know I wouldn't have had the courage or unselfishness to do that. I guess we can exchange hair styling tips at Christmas!!

Well time for me to go.

With love, Carolin

It's a Good Day

Hello everyone!! Well things here are getting back to normal. As Sandy said in the previous message, I had my drain out on Friday. I was expecting the worse in terms of pain. The nurse said take a deep breath, I did and it was out. That was it. No pain at all. I guess there has to be some up sides during this whole thing. The nurse changed the dressing on the incision and we were free to go. I am now working on mobility. That means lots of exercises that are hard and somewhat painful. I find it hard to decided how far from the point of uncomfortable to push it. I go to a physiotherapy class on Thursday. Hopefully they will be able to answer some questions for me and get me on the right track. It is still hard to put on any clothes that need to go over my head. i have mastered a few things but they still need to be on the big side.

At the doctors office they gave me what they call a "softy" to use in my bra until I can be fitted to a prostheses. This one is just made of what looks like pillow stuffing. Jessica was asking me about it on Sunday morning. I explained that for the surgeon to take the bad lump out he need to take the whole breast off and that this "softy" would fill the other side of my bra. And she said "isn't it going to be too BIG". Kids are so cute aren't they - NOT!!

Today I went back to the gym for the first time in about 2 1/2 weeks. Nothing too hard - just 40 minutes on the elipticle machine. No weights yet. But it felt good to get back to a normal routine, visit my friends at the gym and SWEAT. My worry is that if I have to do chemo again that I won't be able to recover as quickly as I did this time if I am not in good physical shape. So my goal for the next 4 weeks is to do as much as I can to prepare for possible chemo in January.

Now she can work up a sweat

With her drain now sitting in a doctor's garbage can, Carolin can get back into normal stuff. Well, all except vacuuming. As the sole exception, I'm a little suspicious but as the pain pills make her a little cranky... I mean "sensitive", I don't bring it up. So she's doing lots of funny looking exercises to try and get the mobility back on her left side. I assume after that she can do the vacuuming instead of just pointing out the spots I miss from her supervisor's chair.