Update - April 29, 2010

Things are moving fairly quickly, so I am just going to lay it out, day by day.

Monday, we were able to have a conference call with the medical team in Dallas, to go over their decision with me. As part of that discussion, I was e-mailed my last CT scan results and the answer is plain; the main tumour on my right lung grew from 4 cm to 6 cm in the 6 weeks that I was on the experimental drug. It is now growing around my trachea, and pulmonary arteries and veins - not a good situation. The Dallas team recommended several possible chemo options and the option of radiation - within 10 days to 2 weeks and sooner if possible. We made notes to take with us to Windsor Tuesday.

Tuesday - I had an appointment with my oncologist;only David and Amy and I were going. We took a copy of our notes from Monday's conversation but it turned out that several of the drugs they mentioned (Abraxane, Gemcitibine) were not covered in Ontario; the Alimta she did not feel would be effective for me. Instead, she recommended Navelbine and had made arrangements for me to have two treatments, Thursday April 29 and Thursday May 6, with a follow-up app't. and chest x-ray May 18th. I asked her for her opinion on whether or not I would be able to attend two family weddings this year - one in Seattle in August (have a contingency plan) and one here in Ontario in October (she just put her hand on my knee and shook her head; it was clear that it wasn't just the wedding I wasn't going to make it to - pretty big shock for all concerned right there!). She feels that the cancer is becoming chemo-refractive - doesn't respond to chemo and, based on the speed with which the tumour is growing, that was a reasonable timeline. We went sadly off to do the End of Treatment things that Dallas required - blood labs, EKG and chest x-ray. When we got home, there was a phone call telling me to be in Windsor Wed. at 11:00 for my radiation consultation.

Wednesday - back to Windsor again to see a radiation oncologist. We had just started the conversation when I mentioned that I had had a chest x-ray done the day before; this was news to him and he left to look at it. When he returned, he had looked at my CT scan as well (Apr. 21). The conclusion of the discussion was that I would have 5 radiation treatments. He took my dates for my chemo in the discussion. He seemed quite positive and felt that the radiation had a good chance (50%) of stabilizing or possibly even shrinking the tumour so that I could breathe more easily. After we left him, we went up to talk to my oncologist's receptionist because I had 2 appointments booked with her - May 10 and May 18 - and wondered if I needed to keep both. In the time that it took us to go up the elevator, the radiation doctor had called her to say that he felt the radiation should take precedence over the chemo and she had agreed. So as of today, I will have 5 radiation treatments May 3 - 7, and then see my oncologist May 10, as well as have another chest x-ray that day. The radiation doctor mentioned that the radiation could inflame my esophagus and I might have problems swallowing for a short time - not a lot of fun.

So it has been quite a week so far and there are plenty of emotions and tears swirling around the house. We had another of those family conference phone calls Tuesday night to bring everyone out of town up to date, especially about my likely not being at either wedding - more tears. So hard not to second-guess yourself - what if I had done x ? What if I hadn't done x ? Why me? Why now ? What good will come out of this ? Harder and harder to be calm and trust in the goodness of God and say "Thy will be done." Mostly, I am just saying, "NO! NO!NO!NO!"

Please pray for all of us - it's a tough week here.

Update - April 25, 2010

Good morning -

We received word yesterday afternoon, based on the CT scan I had last Wed., that the trial drug is having no appreciable effect on my cancer and the recommendation was that I not come to Dallas this coming week or proceed with that treatment path. Instead, I will be seeing my oncologist in Windsor for the next steps. I was more relieved than anything else because I was very concerned about this upcoming trip and how I was going to be able to get through it. I have lain awake at night trying to figure out how many of these treatments I could manage - 2 more? 4 more? It has been difficult and I am not really sorry that it is done. I thought it might be some miraculous controller against this thing, but apparently not. So now I will go on a 'standard of care' drug for while, I think. I am still on waiting lists in Dallas for upcoming trials but I need something else fairly quickly - it's been 5 months without anything being effective.

While it was not welcome news, I find that I am OK with it and am looking forward to talking with my oncologist on Tuesday. Amy is here and has cancelled her trip to Dallas to be with us this week. She will be with us on Tuesday and Steve may come up as well. Mike and Lian plan to be here next week and if Pete wasn't on his way home from Brazil next Tuesday, he'd probably show up too. I tell you, it makes for a full examination room when we see the doctor ! If you live in Blackberryland, you can record conversations (with permission) on your phone and then send them to other family members who couldn't be there. I imagine that will be happening Tuesday as well.

So - I'll be here next week after all. May God be with you today.

Update - April 19, 2010

Some interesting developments since I last wrote !

David thought that I might benefit from oxygen assistance and made arrangements for a respiratory company to come and give me an assessment last Thursday, with the result that I am now attached by a 50' hose to something called a 'portable oxygen concentrator'. It was making a tremendous improvement within 24 hours - I could eat more, breathe better, had better colour, and felt more 'normal'. This is not compressed oxygen, although I have a tank for that, too - only lasts 3 hours - but a compressor which condenses the oxygen in the house air and adds it to what I am already breathing at the rate of 2L per minute. Amazing again how much difference it has made! I am very appreciative and thankful that David not only thought of it but went ahead and did it. I was kind of getting to where I thought it might be a good idea but would have had a hard time making the phone call - more 'invalid' stuff. So you can picture me now with one of those little clear hose things hooked over my ears and two little prongs in my nose - and a big smile, because I feel so much better with it!

Double-edged, though - can't take this equipment through an airport or on a plane, so will now have to find some source in Dallas to rent it, because I can't manage a week without it. We'll be on the way there again a week from today and I'm wondering how I'll make it through the plane trip...just not talk for 5 hours, I guess...I didn't realize how gaspy I had gotten until I got on the O2. It's very obvious when I have to be off it. So - something good to report !

I was able, with the help of Mike and Lian (youngest son and fiancée), to attend a memorial service in London on Saturday for a dear professor of many years ago. There were many friends there that I hadn't seen for some time and they were a real blessing to me and an encouragement, even though I couldn't stay to visit for long afterwards - had to get to the car for my O2.

I am encouraged daily. We went for supper last Thursday to Swiss Chalet and ran into friends who used to live here but who moved away years ago. They were in town just for the day to visit some other people that they knew. The wife of the couple has been a spiritual mentor to me for about 40 years, so it was a very special 'accident'. We had a great time but the best part was that she asked if she could anoint me with oil before we separated, as a sign that we were mutually turning this health issue over to God. I was happy to agree - and even more so when I found that her oil was actually spikenard from Israel. God continues to bring experiences and people to me that remind me that He is involved in this and not to be afraid.

Thank you again for your prayers - there are so many of you who are so kind to remember me and I appreciate it so much.

Update - April 14, 2010

Well, things didn't quite work out as expected in Dallas.

We did go out for supper together Tuesday evening, but I have been finding that my appetite really drops off in the evening and I wasn't able to eat much of my supper. (I have lost approximately 30 pounds since Feb. 2009.) Apart from that, we had a good time. There's also the issue of what to order, because in Texas things are spiced up more than they are here and a lot of it is too spicy for me now.

I got the second treatment of the drug on Wednesday and they tried some different anti-nausea meds, so there was a bit if a change. I was sick more and had more diarrhea but it wasn't as violent as the first round. Back to the hotel and a quiet night ! It was also decided that I needed the shot I was getting the first time I had chemo, to bring my white blood cell count back up. Tests had shown that it had dropped to 500 instead of a normal 1500 with the first treatment of the Dallas medicine. That meant I had to get back to Chatham Friday - and that I also needed a chest x-ray - so plans were made Wed. evening to fly back Thursday instead of Friday. However, it became clear on Thursday that I wasn't going anywhere except back to bed, so we returned to the original Friday schedule. Back in Chatham, David was making arrangements to drive to Windsor on Friday, pick up the Neulasta and have it here at the house when I did get home Friday evening. An RN in the family was kind enough to come over Friday night and 'shoot' me, so I did get the med. Friday after all. (Chest x-ray had to wait until today, when I also had to get bloodwork done in Windsor.) The family is rallying around us, too - Mike's fiancée, Lian, came to spend the week in Chatham with David while we were away and Amy, Steve, Kristen (and kids) and my sister Carol were all with me in Dallas.

I was hoping that the Neulasta would work its magic pretty quickly but I have been down again all of this week I just have very little energy, (the reason I have not done this blog until now) have trouble breathing and can only sleep on one side - although I seem to manage OK most nights. There's a reduction in the usual household chores that I can do, too - we are all seeing quite an effect from this chemo - more than we have seen with any other. I can only hope that it means that it is also having a similar effect on the cancer and wiping it out, too.

So that's where I am now - thank you so much for your prayers. Almost every day I met someone who says, "I pray for you every day" It's both humbling and encouraging - when I get down, it's a comforting thing to remember. A friend at church gave me a little devotional book written by a minister who contracted ALS, or Lou Gehring's disease. I have been finding it very helpful, as it addresses issues that I also deal with. The thought this morning was "You have to surrender yourself and your future to God." The idea is that you can't influence much of what is or is not going to happen to you and to spend time worrying about it and fearing it is a waste. He will provide as necessary - but often at the last minute ! Anyhow - I'm working on that - has to happen several times a day, sometimes, but it does bring a certain peace.

I hope you are enjoying this beautiful spring, as it unfolds so wondefully around us. It speaks to me of God's reliability and His love of beautiful things - and of extravagance !

Update - April 5, 2010

Not too much to tell but I thought I'd just bring everyone up to the present. This week is scheduled to be my second treatment in Dallas and my sister and I fly down there tomorrow. I should have the treatment on Wednesday if my bloodwork report is good. I'm a little anxious about it this time because I had such a strong reaction the last time...but they were going to try some other nausea meds, so we'll see how it goes. At least I know to give myself a recovery day before the return flight! Steve and Kristen are bringing the kids up again, so there is more 'grandma time' and Amy is already there on business, so we should all have supper Tuesday night, before the fun starts.



We had a lovely Easter weekend with my sister and two of our four, plus fiancée. I was able to go to the Good Friday service at church, which was very moving. We had Easter dinner on Saturday night and the amount of effort I put into getting that ready apparently ran my system right down because I then had to spend most of Easter Sunday in bed. That is more an indication of how little energy I have these days than how much I did, because I had lots of help. I was really disappointed but I just couldn't pull it off.



I have found this chemo to be more debilitating than any of the other kinds that I have had. I go to Dallas not feeling really recovered from the first round - another reason for my anxiety. When I read the list of 'possible side effects', I see 'tiredness', 'muscle weakness', 'decreased appetite', 'low red blood cell count' - all things that could acount for this. I'll be asking about it when there. I'm also hoping that if this medicine is having this much effect on my body, then it must also be having an effect on the cancer. God continues to reassure me, through various people's comments and other ways, that He has a plan and has things under control and that I am not to worry. Some days take more practice at that than others !



That's about all there is to say, except to thank you all once again for your prayers, cards, and concern. Your kindness is so much appreciated.