Iona Douglas

Surviving Breast Cancer - The Journey

Last Updated: December 22, 2001

New wig!

email Iona Phone Iona:(604)224-2201 Jean Karlinski volunteered to send emails Iona's circle of friends. Ask to be added to email list Here they are on a web page: Introduction January 26, 2001 Jamuary 30, 2001 February 2, 2001 Good News, feb 9 First Chemo, Feb 17 After Second Chemo, March 2 After Third Chemo, March 16 April 12 and All's Well April 30, Going Strong May 18 June 27 and Walking Miles Last Chemo!! July 26 September 12, Half Through Radiation October 1, End Of Radiation End Of Year

Introduction

Iona: January 26/01

I must say that Iona looked very well, although one of her first questions was "did we notice her modified leg shapes?". I wondered what could have happened to her legs. Had she not brought them to our attention, we likely would not have noticed. What is being referred to here are the round receptacles of fluid draining from the lymph in her armpit. To avoid the length of tubing getting in her way, she very creatively and resourcefully slipped the tubes down her pant legs, receptacles and all. A hardly noticeable modification in leg shape, but a definite and all important improvement to her mobility. If all goes well, Iona's surgeon will be removing the tubing on Monday. This will depend on whether or not all the drainage has occurred. Because of faulty functioning of the valves involved (requiring two visits to hospital in the past week), Iona is fighting an infection in that area which has been quite painful in the past couple of days. She is hopeful that the antibiotics she is taking will relieve that pain by today. At some point, she will also have a bone scan. Iona has been very lucky in that both her friend Valerie and her sister Heather have accompanied her to hospital visits. Valerie will also be taking her to see her surgeon on Monday.

Last night Iona informed us of the results of the report following her surgery. She received this information from her surgeon on Wednesday. The type of breast cancer is called "invasive ductal carcinoma, grade III/III. Seven of 15 axillary nodes tested positive for metastatic ductal carcinoma. There was no evidence of extranodal tumour spread." Forgive me for using all this medical terminology, but as this is what is stated in the report, and I do not have the appropriate knowledge to be able to interpret it, I provide it as is. Once her surgery wounds have healed (approximately one month from now), Iona will have both chemotherapy and radiation treatment.

On the advice of her doctors, Iona has arranged to take a six month period off of work. Certainly for the next month prior to further treatment, she will be healing post-op and looking forward to contact with friends. E-mail (ionadouglas@hotmail.com), phone calls (224-2201)and visits by prior arrangement are very much encouraged.

Finally, after a great deal of persistence on our part, Iona capitulated in divulging her food preferences should anyone wish to consider gifts of food. This of course was very much at our urging, but if there are any cooks out there who want to make a tasty donation, or non-cooks who don't mind picking up a few groceries from time to time, I'm sure she would appreciate it. I'm happy to report that Iona will eat just about anything (not quite - she doesn't like egg custard and is not that fond of barley). I think she's a carnivore at heart, loves pasta, spinach, and lots of savoury food. It seems sweet things have little appeal. Flowers have a great deal of appeal. But having greatest appeal iscontact with her dear friends.

Hope all of you have a good weekend.

Jean

I thought I'd send a brief update to all of you about the progress Iona is making and some of the next steps she will be taking. I'm happy to report that the swelling in her armpit due to infection is diminishing. I'm amazed at how sometimes the simplest techniques are able to measure these things. On the weekend, Iona's home care nurse took a magic marker to outline the area of swelling and redness. It's is against these markings that they have been able to tell that the infection is waning. As of yesterday, the area was still painful, but the antibiotics are doing their job.

Yesterday, accompanied by Heather and Valerie, Iona met with her surgeon who removed one of the drainage tubes from the lymph area and reattached the other. She hopes to have this last one removed by her nurse within a couple of days. Iona will be making an appointment with a physiotherapist soon to make sure she keeps her left arm mobilized, otherwise it could lead to the condition commonly known as "frozen shoulder".

Wednesday, Iona (taken by her sister Heather) will meet with an oncologist at the BC Cancer Agency for the first time. Her appointment is at 12:00 noon and is expected to last about three hours. Iona is not sure what the appointment will entail, although she expects that much of it will be assessment and education related, preparing her for the chemo and radiation treatment she will have in about a month's time.

I think that prior to this next phase of treatment will be a good time for social engagements and the like. Iona enjoyed visits with Liz Ballard, Zeke, Jane and Terry this past weekend and has more social visits planned this week.

As of last night, Iona lost her Internet connection, so I won't know until after I send this message, whether she has been reconnected. If you do send e-mail and have it bounce back, please try again, as I know she's hoping to have it up and running again as soon as possible, and enjoys receiving her messages, via e-mail or by phone (224-2201).

Jean< A NAME = "feb2A">

February 2, 2001

I spoke to Iona after her Wednesday oncologist appointment and had a chance to see her again last night. When I arrived, her friends Cathy and Peter were intensely involved in hanging artwork and prints in her front entrance. The effect is stunning, very much reflecting Iona's artistic taste as well as the skill of both picture hangers. I know Iona is very pleased with the result and looks forward to getting a few more prints up in the next little while. I think it's important to her to make her home as aesthetically pleasing as possible and it shows.

I have a fair bit of news to share as a result of Iona's appointment with the oncologist. It was a long day for her, with lots more to think about and adjustments to make. A number of appointments have been scheduled as follows:

Tuesday, February 6th         Bone scanWednesday, February 14th Oncologist's appointmentThursday, February 15th  First chemotherapy treatment

Iona has two chemotherapy options open to her. She is considering one over the other as it likely to have fewer potential side effects, but she has not decided for sure which one she will choose. She plans to do some more research including talking to one or more women who have been through the process before deciding. She is expecting however that the chemotherapy treatment will occur over a 6 month period, with radiation beginning after that. A woman who has been through treatment and is cancer free 8 years later has suggested that it is more likely that she will be off work for up to a year from now. On that note, Iona is already considering what types of courses she might be able to take online during this period, for example, art appraisal came to mind. I have a strong sense from Iona that she will try to be as active as she possibly can be throughout this period.

The two types of chemotherapy, if perhaps you have heard of them are: 1)CEF (standard treatment); and 2) AC+T. If anyone knows of a friend or colleague who has had either one of these treatments, Iona would be happy to hear from you to get more information.

Unfortunately, the last tube draining the lymph area has not yet been removed. In fact, it is not working properly, so that there is a bit more swelling. Iona has been prescribed another 7 day regimen of antibiotics. She would have seen her surgeon on Wednesday but she already had a heavy schedule. The nurse is visiting on a daily basis, and will likely be the one to remove the last tube when the time comes.

On a lighter note, Iona discovered that Extended Medical will cover the cost of a wig and fitting. I thought this might be an opportunity for her to become a red head or a blonde, but on further probing discovered that no, she will likely go for something close to her own hair colour. For those of you who knew Teresa Tenisci, you'll be warmed to hear that John Stevenson has offered Iona Teresa's hats and scarves to wear, whichs he has graciously accepted.

I know from some of the responses that I have received from you so far, that Iona is very much in your thoughts and best wishes. Together we can be a circle of love and support. I'm sure she can feel it.

Iona had a very special weekend with her son Tim and family, taking photographs, going for dinner, attending a children's birthday party and more. She also happily celebrated Valentine's Day.

Iona's nephew Zeke I'm actually older than Iona's sister! So just "old friend Zeke"has created a Web site to honour Iona's journey. Although I will continue to send you e-mail directly, messages will be posted on the site as Zeke is able. There's also a very lovely photograph of Iona on the site, as well as a link directly to her e-mail address. The site address is:

members.home.net/zekehoskin/ionadouglas

March 2 - After Two Chemos

When I phoned her yesterday, she was enjoying a lunchtime visit with Zeke. I apologize that I misinformed you in an earlier e-mail about his relationship to Iona. He is a longtime family friend who she endearingly refers to as her "little brother", not her nephew as I wrote before.

Things have changed for Iona this week. She is beginning to feel overcome by nausea at times and foods are beginning to taste offputting. She had a bad day on Wednesday and was unable to eat any food at all. She was, however, feeling better by yesterday. [Zeke: I can confirm this. When I came over for lunch she assured me she couldn't eat anything but her mashed banana. Then she scoffed half of my red bell pepper slices.] Iona's hair is beginning to fall out. As you know she has prepared for this stage by procuring a wig, which Trish tells me is very becoming on her.

As part of her treatment program Iona has signed up for a 2 day course on nutrition and healing at the Centre for Alternative Healing which will take place next Wednesday and Thursday. She has also had a Therapeutic Touch treatment by Carol which was a wonderful experience. These complementary treatments will help offset the effects of chemo and help maintain her sense of wellbeing. Iona's next chemo treatment is on March 15th. While the chemo drip lasts about an hour, her visits to the Cancer Agency last about four hours including the blood work which needs to be done to ensure she should have the next treatment. Her regular regimen for approximately the next 6 months will be chemo about every two weeks accompanied by anti-nausea pills. This next stretch will be more demanding, therefore Iona will require a lot of love, support and understanding. She tells me that she does feel very loved because of all of your heartfelt caring being sent her way. Thanks to all of you for the many ways in which you let Iona know that you care.

As always, Iona looks forward to your continued contact and communication. She will be monitoring her energy level and need for rest, and therefore will exercise her right to decline visits. This should not stop you from checking in on her by phone or e-mail or from planning to visit. The basic premise would however be "phone first". She will let you know if she's not up to a long conversation or face-to-face visit.

A difficult issue on her mind these days has to do with the insertion of a portopac (unsure of the correct spelling). As I mentioned before, this would be implanted and used to drip the chemo drugs into her bloodstream for the entire course of this treatment. Not only does Iona have small veins, but the chemo does damage the veins as well, so it is looking more like the 40 minute surgery to have this done may be required. In her words, she is not feeling very brave about having the procedure for a number of reasons. Besides being invasive and in place for approximately 6 months, it would increase the risk of infection and could lead to blood clots. As you know, she has already been through a bout of infection post-surgery and does not want to go through that again. She is thinking however that she should probably make the appointment, especially if it appears that it is the only way she will get the proper treatment.

The dates of Iona's next treatments are March 22 and April 12th, both very early in the morning. She will be seeing her onconlogist on April 11, the same day her father is scheduled to have his permanent hip replacement surgery.

Highlights of the past couple of weeks have included a North Vancouver waterfront walk with Terry, a visit from Angela and daughters Catherine and Emma, Friday afternoon visits from Liz, Sunday afternoon visits with Melita and Cath, and of course the support of Valerie who has accompanied her for all of her chemo treatments.

A quirky bit of news has to do with Iona's new tenant. On meeting, Iona discovered that she works at the Cancer Clinic where she administers radiation therapy.

As always, I know that your support of Iona, whatever form it takes, will help her on her way to recovery.

According to information provided, it is not at all unusual to have to adjust chemo dosages, in fact it is quite common. Iona herself is concerned in that she would like to continue with 100% treatment knowing that she is attacking the cancer as aggressively as possible. There is an intravenous drug which could assist her in this regard. It is called Neupogen and is effective in having the bone marrow produce new white blood cells to replace those being destroyed by chemo. Iona is in the process of investigating whether or not her extended medical will covert he cost - $7,000 for the expected course of treatment. If so, she will definitely go ahead with it, which will then allow her to resume 100%chemo dosages. Her next bloodwork and oncologist's appointment is scheduled for May 16th with the next chemo scheduled for the 17th.

Lots of activities have been keeping Iona busy of late. This week in particular, she enjoyed tea and a walk with her dad, celebrated Liz's birthday over lunch, and had dinner with friends Jane and Janet. Fortuitously, while with Liz, she spotted an apartment for rent suitable for her son Paul. The timing couldn't have been better. In short order, the rental was arranged. Later today, after the movers have left, she will help Paul get settled into his new place in Kitsilano. She is very happy with how this has fallen into place.

When I spoke with her last week , Iona very much wanted me to express her regret that she is unable to maintain all of her personal interactions. She's doing what she can when she can, but is not always able to return a phone call or arrange a date for example. All of you are in her thoughts and she takes some comfort in knowing that she can communicate in part through these messages. She hopes you understand.

Iona is expecting to begin the daily Neupogen injections on June 11 until June 19th. The boosting of new white blood cell production will allow 100% dose chemotherapy thereafter, which gives her the best chance for a full recovery. Her first such injection will be given at the Cancer Agency, after which time they can be administered at home. She is very much hoping to be able to have this self-administered if at all possible, which would allow her to be in Calgary for her grandson Eric's 5th birthday on June 16th.

Last Wednesday, in addition to having her blood tests and meeting with her oncologist, Iona met with the radiation oncologist who explained what she should expect once radiation treatment begins. As you will recall, this will begin after her chemotherapy ends. The radiation will involve daily treatments for 16 consecutive days.

As always, Iona appreciates your warm thoughts and wishes. I hope that all of you have a most enjoyable holiday weekend.

Until next time ...

You will recall that I told you last time about an expensive drug called Neupogen that Iona had covered through extended medical. She has had daily injections of the drug for the past 9 days, which she is now self-administering. The effectiveness of the drug has been overwhelming, so much so, that her regimen will be reduced to a further 7 days to begin after her next chemo treatment. Prior to use of this drug, Iona's neutrophil count (a type of white blood cell) was less than 1. Afterwards, it had shot up to 127, more than necessary. It has allowed her to have 100% chemo treatments however, the most recent of which took place last Thursday. The good news is that Iona has only 3 more scheduled chemotherapy treatments: one tomorrow, and the last two on July 19th and July 26th.

In addition to its effectiveness, the Neupogen caused severe bone pain for a few days. Fortunately this pain has since gone away. Iona continues to have a healthy appetite, although she is experiencing a little more fatigue, likely due to the cumulative effects of chemo and perhaps exacerbated by the Neupogen. Her energy was high enough yesterday that she enjoyed an hour's walk home from her dad's place.

In the past while Iona has had lots of good visits from friends which she continues to welcome (just call ahead) and is enjoying her patio garden which I can attest is flourishing and tranquil. Father's Day was a very special occasion shared with her dad. As always, she appreciates your loving thoughts and best wishes.

What a milestone Iona has come to. She had her last chemotherapy treatment just yesterday and is very happy that this stage is over. I have to say that she has come through this 6 month period with amazing resilience, determination and fortitude. And she keeps looking better and better every day. Congratulations Iona! We love you.

This period did not come without its challenges, especially in the early stages. And certainly external factors, such as the Vancouver bus strike, added additional obstacles and frustrations in the past 4 months. When we hear in the news about the countless numbers of people who have been adversely affected by the strike, we must know that Iona and her family continue to be especially hard hit. Iona has felt so strongly about this one issue that she has asked me to pass on to you a web site address to which one can write to put pressure on Translink and the Driver's Union to negotiate a settlement.

Sorry this didn't get posted until the bus strike was over. I was out of town too! Zeke http://www.vancouverbusstrike.com/

Iona is especially grateful to all those who provided transportation so that she could get to medical appointments, buy groceries, visit with friends and family members; in other words, go about day to day living with greater ease.

Iona is looking forward to enjoying herself in the month of August. This will give her body time to recover from the effects of chemo and to prepare for the next stage of treatment which will begin in September. At that time, she will have a 3 week period of daily radiation therapy. In the meantime, she is looking forward to a long visit with son Tim, daughter-in-law Corrine, and grandchildren Jonathan and Eric.

I myself am about to go on vacation with my husband Michael. So you will not hear from me before the end of August, and perhaps not until early September when Iona has more news to share. Wishing all of you a delightful summer, which I hope will be both relaxing and joyful.

And finally, here are Iona's own words which she composed to personally express her gratitude to all of you for your loving support:

"In addition to loving thanks to many others, thanks to Valleri for sharing my chemo sessions and her unconditional love and loyalty; to Terry who's stayed by me; to son Paul, who brings his love to me every day; to Dad, who without my visits because of the sickening bus strike retains his bright spirits and passion for life. Thanks to son Tim for being practical and supportive; and to Melita and Kath for their friendship and inspiration.

Thanks to Liz whose visits are like jewels; for my sister Heather who is such an important part of my life. Thanks to precious Cindy Darrach who I never want to be without; and to Zeke, who shares so much with me. Thanks to Michael and Jean; Flo Hoover; my roommate Louise Jang; Shelley; Jane Moxon; Hilary Meredith; and Angela, who have added so much to this time; and to accounting firm, Arthur Andersen, my employer, for their decency.

Always thanks to Trish and family because I feel their love and support all the time.

My six months haven't brought me through an ordered course of study and resulting accomplishment as I imagined should be the result of this unique freedom time, but it's left me full of gratitude for life and all the love in it.

Thank you all, Iona"

I had the pleasure of basking in the early evening sun with Iona last night at which time I got an update to pass on to you. As you know, Iona was free of treatment in the month of August which she enjoyed greatly. She had a splendid time with son Tim and family during their trip to Vancouver a little over two weeks ago. During that time she had grandchildren Jonathan and Eric sleeping over for four nights, these two who she describes as "intelligent, kind, loving and independent". This visit was a definite highlight! Iona was also extremely touched by Tim's special solo visit during which he gave much love and support.

Iona began her radiation treatments on Friday, August 31st, the first of 16. These take place on consecutive business days and take about 15-20 minutes each time. Once per week, treatment is followed by an appointment with a radiation oncologist. She gets her weekly appointment schedule for the following week the Friday before. She reached the half-way point this morning with her 8th treatment. Accompanied to her first treatment by sister Heather, she is now taken to and from appointments by a volunteer from the Masonic Lodge, a service provided free of charge.

After initial mapping of the affected areas, 4 targets have been drawn with what appears to be a permanent magic marker. These application sites consist of the front and back of the chest wall, an area of lymph near the breast bone and in the lymph area of her underarm. Fortunately, the side effects of radiation are less severe than chemotherapy, although the effects are cumulative. Radiation does eventually burn the skin, developing into what is like extreme sunburn. She is also experiencing some fatigue as a result.

Iona's last radiation is scheduled for Monday, September 24th. On October 10th, she will meet with her chemotherapy oncologist at which time she expects her condition to be re-evaluated. Of course we are all hoping and praying that she will receive good news. Our loving thoughts and support are with her.

Since ending treatment, she has had the good fortune of sharing quality time with many friends including Hilary, Kath, Liz and Zeke. Through Valerie, she is discovering new things about her computer. She has seen Diane Walker and family and enjoyed a wonderful weekend with Terry on Mayne Island where a friend of his was being married. (If anyone has been missed from this list, please forgive, it has not been intentional.)

Special thanks to Trish, Vince, Isabella and Dominic for the beautiful and cheerful bouquet of golden and yellow hued flowers. They have been sharing the living room with the lovely scented flowers that Terry brought on Monday to celebrate the end of radiation. No doubt such beauty is helping to inspire Iona. Responding to a strong urge to do something creative, she has enrolled in a sculpture course at Kitsilano School which starts this week.

While still tired, Iona is enjoying fair-weather walks and her patio. I'm happy to see that this week's forecast bodes well for more outdoor pleasure, which we all hope will hold for the Thanksgiving weekend. Iona looks forward to sharing Thanksgiving dinner with her dad at that time.

The generosity expressed last week by her boss Charlaine Corbett at Arthur Anderson is deeply appreciated. Over lunch, Charlaine told Iona that she should take as much time as needed before going back to work. This certainly shows a sensitivity to Iona's needs which I know she is very grateful for.

Thanksgiving is traditionally a time to gives thanks for a successful harvest, but it can be more than that. We all have so much to be thankful for just in knowing Iona. I know that her own gratitude is expressed every day.

As all of you know, it has been quite a year for Iona and those close to her. Few of us can imagine how we would face the challenge she has faced with such quiet persistence, perseverance and hopefulness. Her strength of character and positive, thoughtful nature have shone through under difficult circumstances.

Late in the fall Iona had a bone x-ray which suggested a need for a bone scan. This was a big worry to her until she received the favourable result.

There is still a blood test being undertaken for which Iona may not have the results until the New Year. Speaking with her just this morning, I realise that it is this waiting to hear back that plays so much on her mind. We all hope for a favourable outcome sooner rather than later so that she can set her mind at ease going into the Christmas season.

On a family and social note, Iona is especially happy to recall her recent and exceptionally happy visit with Tim, Corinne, Jonathan and Eric in Calgary. They swam, walked on icy streams around beaver damns, had a bonfire and roasted wieners. And to top that, Jonathan read about 100 pages of a book out loud to her.

Recent Christmas related pleasures included a cocktail party chez Michael and Jean, and a scrumptious Christmas dinner at Jon and Liz's (a pre-Christmas Christmas dinner, that is), complete with Santa, his elves and presents!

Just to let you know, Zeke's Web site address will be changing as he remounts it on another server. More news on that in the New Year...
If you are reading this, you already know it is zekehoskin.com/iona

I would like to take this opportunity to thank all of you for the support you've given Iona in many varied but equally precious ways. While there are many of you I have not met in person, I feel connected knowing you're out there reading these messages and caring for Iona. Many happinesses to you in the New Year. Jean

And now, Iona's personal message to you:

" At the close of this extraordinary year, I want to extend my love and thanks to all of you. With your kindness, love, friendship and support, I felt that the ordeals I had to face, were never faced alone."

" A special thanks to Jean who was so dedicated, eloquent, and informative and who made me feel that I was living my life surrounded by friends, whether they were near or far away." "My wish for you all this season and for 2002 is that each of you will live fully with health, love, peace and joy."

With love, Iona