Update - March 5, 2010

There has been a lot happen since the last post ! I began the process of going to Dallas right after I received the news about the CT scan and a week ago today, Feb. 26, the pieces fell into place for me to go. I flew to Dallas Monday, March 1, had my screening appointment Tuesday, March 2 and flew back home Wednesday, March 3. I have also had a chance to discuss my CT scan with my family doctor on Thursday, March 4. A huge bonus to all of this was that my son who lives in Texas and his family all came to meet me in Dallas and I had time with him, my dear daughter-in-law and my three 'grands'. So, as you can see, it's been quite a week.

The experience in Dallas was very informative. We had over 2 hours in the Research Center and received a lot of information. I can be admitted to that trial if I so choose. If I do, I need to return there March 16 to start, and will continue to go there every three weeks as long as the treatment is working. Since it is a private research center, most of the financial costs would be covered by the foundation or the sponsoring drug company. I would be responsible for my own travel and accomodation costs. They were very OK with getting anything medical done in Ontario that I could and just having the information sent to them - blood work, CT scans, etc. So - it all looks good. It would be a big expense in physical effort though for me - I found the week tiring and I didn't have any stray chemicals floating around to deal with. The nurse-practitioner who was speaking with us said that a clinical trial with a drug called a PARP-1 Inhibitor would be the best type of trial for my kind of breast cancer but that they weren't doing anything with them. (My oncologist had already told me this too.) She also advised trying experimental drugs first, because they have very specific criteria as to who can be admitted to the trials; I am already excluded from a trial for a PARP-1 drug that my oncologist knew about because I had started on the carboplatin. The 'standard of care' drugs can be held in reserve for later in the process because they are known quantities - it's known what they will do. So - lots of information, no clear path to a decision as yet.

My family doctor more or less seconded this advice yesterday, regarding the clinical trials and advised me to keep as many options open as possible for a long as possible. The progression shown in the CT scan is not measurable apparently - just identifiable. I still feel that this is the most bizarre experience of my life. I look perfectly normal and healthy - good colour, can do normal things, etc. and yet there is apparently this disease growing inside me. It's extremely difficult to reconcile the two and make the plans that are necessary for the future. When I retired, one of my goals at the top of my 'To Do' list was to clean out this house - 35 years' worth of 'stuff' accumulated from children now gone, parents' homes after they left us, school papers, etc. - and I still want to do that. It seems even more urgent now and involves so many decisions that will be hard to make.

On a brighter note, the time I had with my Texans was very enjoyable. Baby Emmy is filled out, bright-eyed and energetic and gives those wonderful baby grins. It was so good to see this 'preemie' doing so well. Lily and Clay were happy to see me although Lily still isn't really sure who I am and they were not sure why they found me in a hotel in Dallas, but apart from that, we had a good visit. Steve and Kristen continue to be the amazing, loving support that they have always been - I am very blessed.

This weekend is a big birthday bash - we had to postpone the celebration for David's birthday on Feb. 26 since he and I both had terrible chest colds. It turned out to be a good decision because the weather was also terrible. Plans are to celebrate this Saturday, which is also our youngest son's birthday, so we can do 2 for 1. Three out of our four kids will be here and at least two of them will come to Windsor to my appointment with my oncologist on Monday morning.

That will be another big decision day - we have our input from Dallas and my doctor will have her options to discuss with us. I will have to decide whether or not to proceed with the option in Dallas or one of the other options that will come up. As I said earlier, the best thing (I think - but I'm not the expert here) would be to get into a clinical trial for a PARP-1 Inhibitor drug, since it seems to be having a lot of success with triple-negative breast cancer, but I don't have information on one that I could qualify for. I am booked for chemo on Tuesday, March 9 but if I choose to take the option in Dallas, I might not be able to do that. So - We would appreciate prayer that the decision will be clear to make. There is no 'right' or 'wrong' choice - nobody knows what will work and what won't - it's all trial and error, since each person and each cancer responds in its own way.

It's getting harder to be positive and calm in the face of all this - I have had some really bad days in the last two weeks and have been very frightened of what the future might hold. However, I have fought my way back to my conviction that God is in this with me and is preparing the way for me in all things. There are just so many little confirmations - the man I met on the plane on the way back from Dallas, who told me about his brother-in-law's cancer and how positive he was about it, and who urged me to 'pray for guidance and keep on fighting'...the friend who called as I was just going out the door to the airport Monday that I hadn't talked to for months who 'just felt she had to call' and who encouraged me as I was starting out on the trip...my son who took days off work to be with me in Dallas...I am sent lots of help, often from people I do not know.

My sister advised me to read the Psalms and I found this in Psalm 116: Death stared me in the face - I was frightened and sad. (I thought - Yeah ! That's me, alright!) Then I cried, 'Lord, save me!' How kind He is! How good He is! So merciful, this God of ours. The Lord protects the simple and childlike; I was facing death and He saved me. Now I can relax. (Still working on that!) For the Lord had done this wonderful miracle for me. He saved me from death, my eyes from tears and my feet from stumbling. I shall live ! Yes, in His presence - here on earth.

I do not know how it will all turn out but I know who will be with me and going ahead of me to prepare the way and I just have to not forget that.

May your day be a good one ! Thank you again for your interest, support and prayers. They are always appreciated.

Update February 24, 2010

Well, I got the results yesterday from the CT scan Feb. 12 and it wasn't good news - it shows 'a progression of the disease' . My oncologist intends to change me over to a different type of chemo when I see her again March 8 or 9. It was a shock to hear that, since I have felt so well - apart from the terrible chest cold that David and I have both been fighting since Valentine's. (I am on an antibiotic, too, because I also had chemo Feb. 16).

David and I have decided that I will try to get a screening appointment in Dallas to see if I can be admitted to the Phase 2 trial there that we were able to investigate in December. I don't know what will come of it but I think it is an opportunity that came to me, unlooked for, and that I should follow up on.

Hard to know what to do...pretty scary as well. It just does not seem possible that I could be dealing with this when my life seems so normal. You would never know to see me that I have anything like this going on inside of me. No symptoms, no pain, no shortness of breath, etc. I can do pretty well anything that I want to do - drive, get groceries, cook meals, read, knit, etc. If it wasn't for this cold, I would be 'in good health', to all appearances.

Harder today to say " Thy will be done", "It's in God's hands", "God will care for me" but these are all still true.

Thank you again for your prayers and support.

Update - February 18, 2010

Well, Tuesday brought no answers, in spite of expectations. The CT scan results were not available and although my oncologist had the images on her laptop, she didn't feel that she could interpret them accurately. So - I went ahead with the chemo treatment (#3) scheduled that day. We waited in her office for an hour while she waited for radiology to send the images but there was no 'reading' to go with them. Next scheduled visit is March 8, with chemo on March 9. If information on the CT scan comes through, she will send it to me but it looks like any decision will be made now March 8 about whether or not to continue this treatment, based on its effectiveness. This was especially disappointing,as my daughter had taken a day off work to accompany us. However, we were glad of her company, regardless.

Please pray for me that I will have courage to deal with the information that comes from the CT scan and the wisdom to make good decisions about future treatment that will be based on that. I met a charming and stylish lady in the chemo department while I was being 'dosed' who told me she had been on chemo more or less for 3 years and had not had any hair for all of that time...gives one perspective but also a vision of other possibilities, which can be unnerving.

I have to keep remembering that we are given the gift of today and that it is ours to use and enjoy. Tomorrow is not guaranteed to anyone. Today it is sunny, my head cold seems to be letting up, my children are all hanging in there with their various challenges and still have time to check up on me, my husband's eyesight is improving all the while, my sister has passed the first anniversary of her terrible fall and is renovating her kitchen - lots of things to be thankful for! It's a choice, so often and I am following a friend's advice to "Choose joy!" It's much easier to live with.

Hope your day goes well and that you find your own joy in it.

Update - February 9, 2010

I'm happy to report that things are continuing to go well for both of us. David's eyesight continues to improve on a daily basis. I have returned to my linedancing class (beginner!) and have made it through both of the classes so far without having to sit and rest hardly at all - much better than I was before Christmas. I have also joined the YMCA and got through my introductory hour of practice exercises, treadmill and bike with no problem. Both of these experiences make me feel quite hopeful that the chemo is doing its job. However...you know the rest - also trying not to get too hopeful. Also doing all the normal life things - making it to church, going out for lunches and so on, knitting a blanket for my newest granddaughter, reading, cooking, grocery shopping, etc. So, as I said, things are going well.

Next event is the CT scan this Friday (Feb. 12) and then the visit with my oncologist on Tuesday, Feb. 16. After that, the path will be clearer.

Thank you all again for your ongoing prayers, support, cards and encouragement. They mean more than I can express.

Update February 2, 2010

I can report for both of us that things are continuing to go well. David had a check-up visit yesterday in London for his eye surgery and the doctor was pleased - as is David - with the continuing healing and improvement in his vision. Next visit is in 3 months, so all is going well. He is even starting to be able to read again with his right eye - large letters, but he can now see them and is quite encouraged. You value your eyesight but when it is threatened, you learn to value it even more.

I had my second chemo dose a week ago (Monday, Jan. 25) and, once again, it was a non-event. This is a different type of chemical than the first round a year ago and my body seems to tolerate it very well...it's like nothing has actually happened, believe it or not. I have really good anti-nausea meds, including a steroid, that I am to take for the first 3 days after I have my 'dose', morning and evening. This time around, I didn't need to take the evening ones and I felt fine. I was out for lunch, dinner and breakfast during the week, did all my usual jobs around the house and so on. I continue, thankfully, to be able to lead a normal life and wake up in the morning feeling good. I am waiting to see if/when I will lose my lovely new gray hair - not my favourite part of all of this. I have been able to purchase a gray wig (not too many of those around!) and will take it to my excellent hairdresser for her magic touch. There are two family weddings this year, August and October, and I am already calculating whether or not I will have my own hair for them !

This treatment is the one that will decide the future course of action. I will have a CT scan Feb. 12 and, on the basis of those results, we will decide whether or not to continue treatment in Windsor or contact Dallas for screening to be admitted to the clinical trial there. Treatment in Windsor would finish in mid-April; treatment in Dallas would mean going every 3 weeks for a period of time I do not know at this point. Nice to have the options; hard to know what would be the right thing to do. Fortunately, I have confidence that God will make my way plain to me and others. Sometimes it's hard to say things like that - I want to know the whole story, including the ending, right now !! (Those of you who know me well know that I often read the end of a novel to see if I like it before I read the whole thing...it's also a way for me to be able to put the book down and not read the whole thing at once!) But it gives me practice in trusting God and praying the prayer that never fails - "Thy will be done". This is an ongoing lesson for me.

I meet so many friends, neighbours and acquaintances who tell me "I pray for you every day". I thank you for that so much; it's what gives me strength to get up in the morning and live my day and not waste time agonizing over this illness. I have today, like everyone else, and I live it and enjoy it. I like to think that the people who are praying for me are one of the positive results of this disease - some are praying who haven't for a while and it's good for them to get back in the habit !! God does really work in mysterious ways.

Well, that's about all the news from here. I hope that your day goes well and that God will give you His peace and strength to deal with whatever comes your way today.

Results of This Morning's Visit to my Oncologist

My visit to my oncologist this a.m. has gone extremely well. She is very supportive of the Texas options and we have agreed on the following plan:

1) CT scan to be scheduled the week of Feb. 8, following second chemo Jan. 25
2) CT scan should be read by Feb. 12
3) Third chemo is scheduled for Feb. 16; this will be the decision day, as I will have an exam first. We will either proceed with the third chemo because it is working or stop because it is not and begin planning with Dallas to see when I could go there for screening to see if I qualify for their clinical trial.

She also told us about another group of trial drugs, called PARP-1 inhibitors. There is a clinical trial for that just starting in Bethesda, Maryland but since I have already started treatment with carboplatinum, I am not eligible for it. However, she said that more trials would be set up in the future and that I might be eligible for one of those. Now that she knows we will travel for treatment, she can again offer more options. If I don't need to go to Dallas this time, it may also be an option for future treatments, since you have to keep changing the 'attack drug' - cancer cells adapt very quickly apparently and become resistant, once they have been 'chemoed' with a drug.

So - lungs 'sound good' again, metatases are very small, detection was early, I feel great, God is good. We are quite relieved, and don't have to go back to Windsor until Monday !

David's eye is getting better by the day although it is still quite pink. His cataract surgery was Jan. 13, a week ago today. He also had the silicone oil removed from his eye and the combination of new lens and clearer fluid has resulted in much better vision. He is seeing improvement daily although that black space in the centre from the tiny cyst is still there. He can adapt by moving the centre of his vision around, to see what he is missing.

Thank you again for all the prayers offered on our behalf.

A Prayer of Faith

This past fall, I was asked to compose a 'prayer of faith' as part of a study book on the Book of Hebrews for our church. It was due by Sept. 13. On that morning, (I had been thinking about it for several days but had nothing on paper), I wrote this on my daughter's computer in Kitchener and e-mailed it to the person in Chatham who had asked for it. I thought I was almost all done with my cancer treatments at that point - my last Avastin dose was to be Sept. 16. However, time has proved otherwise and this prayer has been a comfort and a reminder. So often, in this cancer experience, God has provided for me before I knew what I needed. I publish it here in hopes that it may also be a help to someone else.

A Prayer of Faith :

O God !
Have mercy, I pray !
Deliver me from the onslaught of these fears -
These dark imaginings,
These dreadful possibilities that are only that -
Possibilities - NOT facts.
They roll over me like the waves of the sea, And fill me with despair.
Help me to realize that the voice that whispers them in my mind
Is neither mine - nor yours.
Help me instead to turn my thoughts to You -
To remember Your precious promises
Given so often and so clearly in Your Word -
To comfort and sustain,
To defend and protect,
To fight for those who put their trust in You.
Help me to go over them, Lord,
The ones You have given me,
Word by word,
Promise by promise,
Step by faltering step,
Until I reach Your peace -
Until I am enfolded by the Comforter -
Until I am safe in the light of Your love -
And I can truly speak the prayer
That never fails - "Thy will be done."
Thank you, O Lord, my God,
For Your sustaining love and grace.
Amen.