Bald is beautiful, again...........plus a diffiuclt update

Well, some of you might be wondering what I am looking like these days and so here I am, this is a very recent photo. As promised, the radiation has caused 100 percent hair loss........ so it's completely bald again for me. To be honest, I didn't expect to leave the whole breast cancer treatment scene with hair, so it isn't really a big deal. Plus, a little comfort that the radiation is doing what it is supposed to be doing!

I am feeling quite fine these days, and thanks to my web of support, I am able to enjoy every minute of every day quite well. I am not exaggerating when I say that I can't wait for each new day to begin.

I had an oncologist appointment this week at which we were to discuss chemo, and whether or not it could bring me any benefit. Well, the time has come, and my oncologist does NOT feel like he can offier me very much via chemo, either through time, and definitely NOT through quality of life. It wasn't exactly new news, but still hit kind of hard, as this was kind of the final bridge to be crossed in decision making related to my active cancer treatment.

SO.... what this means is that I have decided that it is time to stop active treatment. I do have a very high level of trust in my oncologist, and I would want all my family and friends know that he has known my goals (more time even if it is chemo time) right from the start and has been both respectful and cooperative towards that end.

The focus of my care now becomes comfort. I will have any treatment that would improve my care and treatment, but nothing aimed primariy for stopping the cancer. And so, the time I have been given by the palliative radiation is the time I have. And that, as we all know is a mystery that none of us can begin to guess at, but of course, I can't help hoping for the most there can be, life is just too darn good to leave.

It's yet more emotional adjustment for the family, but I would say that everyone, kids, my parents, siblings etc... are all graceful and very focused on helping me. It is humbling, but also it is so nice that I cannot utter one thing except my love and gratitude.

I'm getting questions about visits again. This is a very tough call, because I must budget my energy with care and I would please ask you to check with my mom or Gord or myself. My energy is very limited, and especially when the kids are all home, Ifeel that my time must be their's.

I usually am very good with short phone calls now, I seem to have regained my strength for that, although and email or snail mail is ALWAYS managable. Email is the very easiast and so far, I get from my bed to desk pretty easily.

I send lots of love to all you, my wonderful friends and family, without you over these several years, I simply don't know what I would have done. Joanne

Stable

Hmmmmmm..........in a food mood............ that is a constant state lately, for which I point to the steroids I take to help stop any swelling in my brain. I think I've even gained weight, which is really not a bad thing for a person in my situation. Even before the steroids, my appetite was pretty good, so I can't complain...... it is a relief, not being able to eat is a really terrible thing.


Things are mostly stable, and I am about the same. I am fatigued from the radiation, and I also have times when the energy is better, so I am most certainly able to enjoy my days, although my range of activities is definitely very narrow.


There is really not much to report, so I'll keep it short..... Brian is on his school band trip to Calgary. Michelle and Craig return to Winnipeg this week for the week. Gord has been mostly off work, or at least on a very reduced schedule. Mom continues to be here daily and keeps our lives possible. Dad is around too and so we have much help right here and right now.


I continue to rejoice in you, my most precious family and friends. Joanne

Joanne again with my latest update!

Hello from Joanne, and happy belated "Valentines' Day ! Although, frankly, this day has never held a huge place in my life, I will admit that it was "sweet" this year to soak up all the love and good wishes that are permanently floating around my house.

I am doing better than I think anyone could have expected. The pnuemonia seems to be cleared up, I seem to have made it through the radiation without terrible ill effects, and in many ways my hospital stay was a good "tune-up" and it helped me in more ways than one.

I have a new schedule AND new additional meds for pain, and it has worked very effectively - I am in better shape pain wise than before the hospital, I think I just hadn't really noticed. Also, some of the unpleasant symptoms I had been having - such as those brutal coughing spasms, have really been under better control, again, with another new medication not previously tried.

While things were indeed quite dire and serious for awhile there, the emergency seems to have abated and I feel like I've managed to dodge the bullet, at least for now. It's hard to quantify, because things change slowly, but I do think that I am regaining strength. My oncologists are optimistic once again about my physical state, and are again talking about adding chemo (palliative dosages from now on) to see if they can improve my breathing.

One thing I CAN truthfully say, is that even with all my limits, I am truly able to enjoy my life, such as it is. I'm delighted to wake up to each new day and actually get excited about it, I'm all ready to roll when mom arrives at 8 am, and that is quite a new experience for a sleepyhead like me.

I do have incredible fatigue (expected from radiation and whole brain radiation) so I rest alot. However, that's my only "job" right now, so it is very doable, I have a huge network of support - especially from my mom and from Gord who make my life completely managable. Given that my energy is still so limited, I must of course "budget" it, and for me this means I continue to visit with family only at the moment. And I appreciate all of your understanding.

There really are no words for me to find, to express my gratitude and devotion, to all of you, my family and friends. Your support of me, and my family, each in your own unique way, really does make a difference. For me, it is tangible. Every kind thought, prayer, every item of food, every gift of cheer, of flowers and cards, even every bit of correspondance (email and snail mail still are best for me) lifts me up and helps me to face the journey. I think it helps my family in similar ways.

So, thanks so much to all of you, whether you know it or not, you make a difference.

Sending love to all - Joanne

Home!

Hello,

Darryl here again, on behalf of Joanne.

I wish that I had taken this picture as today was a spectacular prairie winter day in Regina; warm, sunny and frost covered trees much like this image. This was the setting when Joanne returned home from the hospital earlier today and set up in her comfortable sun room.

Her five palliative radiation treatments are now complete and although she is extremely fatigued, she is otherwise generally OK. The plan at the moment is for Joanne to spend the next two weeks at home recovering from the radiation prior to any further intervention.

Joanne continues to be very grateful for all of the emails, cards and written greetings she is receiving as they are always welcome and easy for Joanne to receive. Depending on the situation at the time, she may be able to take brief phone calls. At this time, please understand that visits are being limited to immediate family only.

On behalf of her family thanks again for all of your support.

Darryl

8 February 2008

Hello,

Darryl here again, on behalf of Joanne.

Things are relatively stable at the moment. Joanne has now had two of the planned five palliative radiation treatments. The first was on Friday afternoon. She took advantage of her “weekend pass” and spent Saturday and Sunday at home with her family. Michelle and Craig are back from Winnipeg for a few days so, together with Gord and Brian, they are all able to be together for the time being. Joanne returned to the hospital on Sunday night and had the 2nd radiation treatment on Monday morning. The remainder of the treatments are scheduled for the next few days. So far, the side effects from the radiation have been manageable which is a relief to all of us. We are all taking things day by day and hopefully Joanne’s symptoms will remain stable.

Joanne sends a huge thank you to all of you for all of the support that she and the family are receiving. She is thankful for all of the prayers, best wishes, blog messages, email messages, cards and flowers.

Darryl

4 February 2008