Tuesday, March 30, 2010

Update - March 30, 2010

Welcome to my life on the couch !

It's been 2 weeks now since I had my first chemo treatment with the experimental drug in Dallas and it has affected me more than any other chemo that I have had. I think I must have been getting off easy before.

It's all there in the list of possible side effects that I was given - fatigue, reduced white and red blood cell counts, loss of appetite - but I just haven't had such a long reaction before. It's usually been a week and then I was more or less back to normal. I'm still up and dressed, etc. and doing normal household activities - laundry, cooking, groceries - but I just have to rest for 30 - 45 min. between jobs and that's frustrating...leaves me with a lot of 'bedhead' ! However, it could be worse, a lot worse, and I am trying to keep perspective. I was also quite weepy there for a while but that seems to be passing, too.

David continues to be better as the result of that exercise for his inner ear balance but he does have to keep doing it on a regular basis to keep 'level-headed'!! (Couldn't resist.)

We are looking forward to family visits this Easter weekend, including my sister from Ottawa who will accompany me to Dallas the following week for Cycle 2. Amy has to go to Dallas also for a working trip, so I will have lots of company.

I am also looking forward to Easter as a reminder again of God's amazing, incomprehensible love for mankind and of His desire to bring this love to the lives of ordinary people like you and me. It is the story of Easter that gives me hope in this battle and confidence that however it turns out, it will be God's plan and that I will be OK. Like all gifts, God's love must be received and accepted to be part of your life or it just sits there on the shelf in its wrapping paper.

Thank you again for your prayers. Choose joy!!

Monday, March 22, 2010

Update - March 22, 2010

Well, at the risk of being repetitious - there's still a lot going on ! March is passing in a blur.

First of all, David found out on March 12, that there's nothing wrong with his heart or blood pressure - the dizziness and falling are the result of problems with his inner ear. It's a type of vertigo and he returned from his doctor's appointment with a simple head-over-the-end-of-the-bed exercise that he can repeat several times a week to 're-set' his balance mechanism. He has seen a remarkable improvement even in a few days and feels much more confident and sure of his mobility. We were very relieved to discover the cause and to have a simple solution for the problem ! He has more tests scheduled but this was a big result. While all this was happening, I was cooling my heels in Windsor, going through the process of another CT scan.

On Monday, March 15, our youngest son arrived from Kitchener to accompany us and be our assist with luggage, etc. and we all flew to Dallas that evening. Tuesday was not Day 1 of treatment, as originally planned; instead, I had some of the screening bloodwork repeated and a couple of conversations with various people who are running the cancer centre. Mike was able to record these so that other family members could hear the discussions. I did find out that day that I was randomized into the experimental drug group - another answer to prayer !! In a way, I was not surprised - just felt that things were continuing to work out 'as planned'.

Wednesday was 'Day 1' and what a day it turned out to be. We were at the hospital for 9:00 - started getting anti-nausea meds by 9:27 and the IV treatment of the drug started about 10:27 for 2 hours. No problem there - just sit in a nice recliner and read a magazine or something while it drips into you. First blood samples were taken about 1:15 or so and I was told that I had about 2 hrs. to wait until the next one. I could go down to the atrium and get something to eat or whatever as long as I didn't leave the building. Well, I made it to the waiting room and realized that I wasn't leaving the office! I returned to a treatment room with a bed and checked out until about 2:15, when the reactions started, as I had been warned...diarrhea for half an hour or so took care of half my digestive system. I rested until it was time for the next blood draw and returned to the chemo room - was part way through the blood draw when the nausea arrived - took care of the other part of my digestive system! I had been given anti-nausea meds at 9:27; thinking that these had worn off, they gave me more and of a different kind. This stuff just T-boned me - couldn't talk right, couldn't walk without help - doped to the gills! But I didn't throw up much afterwards! Anyhow - left the hospital about 5:30 in a wheelchair with a bucket in my lap...returned to the hotel and slept it off until about 9:00, when I awoke starving and managed some toast. Steve was there too and brought me back to the hotel in his car, which was a lot better than a cab. We realized late that evening that I wasn't in any shape to be flying the next day, so David, Steve and Mike re-arranged things to leave Friday instead. That will have to be the plan from now on, I think.

Thursday was better; we were back to the hospital for another blood draw by 7:30 and then had time for a family breakfast at the hotel after we got back. Kristen and the grandkids had made the trip to Dallas too, so we had a nice time together. I found that my taste was off again - one of the side effects of chemo - but I could eat OK. The highlight of the day was dinner that night at a BenneHanna restaurant (Japanese teppanyaki, where they cook at the table). We all enjoyed it, and Clay found it especially entertaining. I had a pretty good day - just had to rest in the afternoon - but no other side effects...just recovering.

Friday we were able to have one last family breakfast together before we all split up - the Austin tribe to make the return trip and the Ontario tribe to the airport. We had a later flight - left Dallas at 4:00 CT and arrived back in Detroit just after 10:00 p.m. We were in Chatham by 12:15 and Mike left to drive back to KW by 12:30 ! The night was clear and the road was almost empty, so it was a good time for him to go.

Overall, it was a good experience. I have been quite tired since returning but then I haven't had the usual 3 days post-treatment of 'happy pills' - steroids and my big anti-nausea med. So - a little more realistic, perhaps, and I have had to listen to my body more and not push it, which is probably good. However, I do feel a bit more 'settled' today and am hoping that I am over the worst of it. Time will tell ! The staff in Dallas were already talking about trying different anti-nausea meds for me next time, so we'll see what difference that might make. They are great people, very kind and sympathetic, as most people seem to be who have chosen this line of work.

I return to Dallas the week after Easter for a second treatment and then will have another CT scan April 21 to see if the drug is having any effect. If it is, then I return to Dallas for Cycle 3 the last week of April. That will be the pattern - two treatments and then a CT scan. If the results are good, then we continue. If the cancer shows growth of 20% or more, the treatments are discontinued and another plan will be drawn up. So please pray that there will be reason to continue !

I do feel that this is God's plan for me - even though I wasn't too sure there for a while about all the traveling - but it just seems so unusual that I would even have this opportunity that I don't know how else it would come about. I am so thankful that I can try this, thankful for the time to see the Austin tribe, thankful for the time with other family members - there's a lot of good coming out of this, even though it is scary. Friends feel that they would like to pray for me and they do - in coffee shops, in halls in the church, in wherever we happen to be - I am in awe of their caring and support. When I get rattled, I think back to some of these experiences and am comforted and calmed. So many of you are praying for me and for our family and I thank you so much. I have a little 'mental collection' of faces, comments, etc. that I draw on when the black thoughts swirl around in my head and they help me turn away from all of that and choose to trust, choose not to panic, choose to 'rest in the Lord'. Thank you again.

Isn't it great to see the robins back and wake up to birdsong in the mornings ? Spring is going to make it ! Choose joy !

Wednesday, March 10, 2010

Update - March 10, 2010

Once again, a lot has happened since the last time I wrote.

First of all, we had a wonderful weekend celebrating birthdays and just being together as a family. We were expecting three out of the four kids but were VERY pleasantly surprised when #4, "the Big Guy", stepped out of the car Saturday afternoon as well. So, we were able to celebrate 3 out of the 6 family birthdays and just really enjoyed our time together. It was a real gift to be all together again so soon after Christmas and probably won't happen again until Pete and Jocelyn's wedding in Seattle in August.

On Monday, five of us set out for my oncologist appointment in Windsor. As you know, I was praying so much for a clear direction as a result of that meeting and many of you were praying that for us as well - thank you again. That is what we got. My oncologist strongly recommended that I take the option open to me in Dallas and we could all see that it was the best choice for me at this point. We also received the radiologist report on my CT scan of Feb. 12 which shows that the cancer is progressing in spite of the carboplatinum treatments - not good news. Some of the nodules are stable, but some are growing - in millimetres, but growing. What I am looking for now and praying for is a drug that will stop the growth and possibly even shrink these nodules and tumours that are there. Hopefully, that is what I will find in Dallas. I keep reminding myself that this was an option that came to me unlooked for and I am trusting that it is God's plan for me.

David and I and our youngest son will leave for Dallas Monday, March 15. I should have the first treatment of either the experimental drug or the control drug on Tuesday, a second check-up on Wednesday and then fly back home Thursday. Once I start, I will be going there every three weeks. I still have to have this confirmed, so it is possible that there will be some changes to this schedule.

David also has some medical issues happening - he has been troubled by dizziness when he stands and begins to walk to the point where he has fallen several times. He will be having some tests done for this as well - we are both falling apart !!!

That is about all for now - will keep you updated as things develop. I am looking forward to the opportunities in Dallas and praying that there will be good results from whatever I am treated with there. Please pray that I - and the rest of the family - will be able to trust God in this and stay in the peace of that confidence instead of distressing ourselves with the 'what ifs' and bad possibilities.

Friday, March 5, 2010

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.