Radiation and a new vocabulary...

Spring has finally appeared. It is sunny and warm and the forecast is for a few more day of the same. Mary hit the beach yesterday then came by to cut a few more squares for her first ever quilt. Steven mowed the lawn this morning and Dick is enjoying fine weather on Bainbridge Island near Seattle. He is staying with our very old friend Chris whose wife died from inflammatory breast cancer several years ago. He is working out how to pack the water maker he bought for our boat in order to take it as baggage when he flies to Turkey June 17. I was unable to go as I had just taken my old passport in for renewal when Dick found that West Marine in Blaine, Wa. had several other parts, all to do with emergency at sea~~AIS, EPIRB and radar reflector ready for pickup.

At last I am feeling more myself and just in time for radiation to finally begin. I still have lingering effects from chemotherapy and my medical oncologist says this is normal though I do hope that they go away completely at some point. I am back on the aromatase inhibitors which will increase my insurance against recurrence considerably. I am to keep a journal to track side effects. So far no nausea as earlier but already night sweats are becoming regular so I may have to adjust the timing. Since osteoporosis is the worst offender I am happy that I am still walking my 5 k daily along with yoga which I hope will help to ward off that possibility.

Finally radiation is to begin. The CT mapping/simulation took place April 23 after my plastic surgeon added one more fill to my tissue expander. The "foob" or fake boob is now bigger and higher than the real one so I am decidedly lopsided though it seems that I am the only one who notices. I guess most people are too polite to stare long enough to see the difference. I walked to the river early last evening and did not wear a head covering. Again, it may be that no one notices but I do feel slightly uncomfortable when I pass other walkers and make eye contact. My hair is growing, but very slowly.

But back to radiation. It has its own language and the actual planning is done by a physicist and a radiation oncologist. The basic unit of radiation is called a Gray. The average amount of radiation received during a chest X-ray is 0.005 Gray and during a mammogram 0.003 Gray. I will receive 50 Gray or more over the course of 28 treatments. I already know that as usual, I get the "whole meal deal" due to the fact that there was extensive lymph involvement. There are lymph nodes above the clavicle and since I still had one cancerous node removed in the latest surgery, it is entirely possible that some of the "supraclavicular" nodes are also positive. Apparently chemo does not always kill what it is supposed to. So I will have radiation from and including my breast bone, the full breast and axillary area under my armpit and above the clavicle to half way up my neck.

I have lots of new handouts on what to expect, what to wear, what to use to moisturize several times a day, no sun exposure and so on. If all goes according to plan (nothing so far has quite done that) I will start radiation Tuesday and complete my 28 treatments on June 14, just in time to celebrate with Dick as he heads off to Turkey from Seattle on June 17. I also start a Mindfulness course this Tuesday and that entails 8 sessions plus an all day event. I have been on a waitlist since January for that course which also takes place at the cancer agency. I think that the timing may be just what I need and I look forward to meeting some women also going through treatment. There is nothing like spending time with women  who share the crazy roller coaster ride of breast cancer. I had lunch on Easter weekend with 3 other survivors who had been virtual friends via a breast cancer internet site prior to our meeting and it really was wonderful to be able to share our stories.

Although it has been my intention all along, I finally put together an itinerary for next spring that I think of as both a goal and a reward:

Adventure Nepal 2014
Marian’s Inaugural Breast Cancer Survivor Trek
Annapurna Base Camp/Kathmandu/Chitwan National Park

http://samsarajourneys.com/fixed_departure_adventure_nepal.php

I know that for me, it is ambitious but I hope that others take the opportunity, regardless of whether they  are a breast cancer survivor or not, to consider the challenge of trekking in Nepal next spring.

Annapurna Base Camp, 2011

Photo by Marian

Razzu and Marian, ABC trek, 2010

Spring with breast cancer

Well, spring in Vancouver is an up and down thing, just as my life with breast cancer is. Two days ago it was sunny with bright blues skies and the hope of real warmth soon to come. Yesterday that all changed to almost freezing rain and today it is just cloudy. Kind of how I feel; mixed emotions and often cold and cloudy thoughts with the occasional warm surge of optimism. I will not sugar coat how bad the past month has been. It has been down right depressing again with that trapped feeling of how am I going to get out of this.

In the 4 day week prior to Easter, I had six appointments, three of them with doctors, two different physio sessions and one appointment with a counsellor at the cancer agency. I saw my medical oncologist who I had not seen for 2 months, just prior to my last chemo session in January. I now consider this ridiculous. To see your primary cancer doctor every two weeks for four months and then not for two months does not make sense to me and I will state that when I see her next. Anyway, back to the actual appointment; first I saw a resident who I was not prepared to explain my sad and sorry tale to but did allow her to examine me and answer a few questions. I must have appeared pretty pathetic because soon after a nice older nurse appeared to ask me more questions. By the time my oncologist appeared, tears were slowly falling and all I could do was try to explain how terrible I felt, physically and mentally.

Looking back on the past six months, I realize that I saw her every other week during chemo but for very short periods and since I had been coping reasonably well in her eyes anyway, there seemed to be need for longer conversations. I recall my last appt. with her in late January and it could not have been longer than five minutes. I sort of recall trying to explain my mild signs of neuropathy while saying that I was still walking often and had even snowshoed that week. I guess that she heard good news without noticing any bad and other than my hospitalization in December, I suppose she thought I was coping well. Well, she did take note at this last appointment and was concerned.

I have mentioned before, how lonely this breast cancer journey is. While we see our primary cancer doctors for a few minutes each appointment, we think about our breast cancer constantly and have many questions that are impossible to expect answers from in those short meetings. So we share experiences and questions with virtual friends online, talk to friends who have had breast cancer, read books and articles and try to become as educated as possible as each treatment or surgery comes along. But ultimately, we are alone with our thoughts.

Whether those thoughts are helpful or not is a moot point. It is not always easy or possible to remain positive. In my case I tried to stay upbeat by continuing my almost daily 5 k walks and my yoga classes (which were disallowed after surgery for several weeks). Eating well fell off after surgery as I suffered from nausea and vomiting initially. My taste buds affected by chemo are still not normal and so I have been eating to live rather than living to eat, thus I have lost weight again. But depressed as I have felt the good news is that I did keep walking most days and have rarely stayed in bed.

In that week of many appointments, I also saw my breast surgeon who did the mastectomy and axillary dissection part of my March surgery. She went over my pathology with me though since then I have asked for some further information from the pathologist. What it does show is that 6 more lymph nodes were removed along with my breast and one was positive for cancer. It had become what is called extra nodal so the metastatic breast ductal adenocarcinoma extended into the fat. So now my stats are 7/14 lymph nodes positive for cancer. My chances of getting lymphadema are now higher and with radiation will go to 20%.

I also saw the plastic surgeon that week for my second fill of 60 cc into the tissue expander under my pectoral muscle. He decided he wanted to do one more fill which meant putting off the radiation CT simulation. I had that fill the following week but by then part of the incision was separating and so this week a section of my incision was excised as part of it had become necrotic. In reading the original operative report I noted that the SPY machine showed a large area of compromised blood flow to part of the mastectomy flap but after SPY was used again, "all tissues appeared to be viable." Apparently not says the plastic surgeon this week. SPY measures blood flow and is the only such machine in use so far in Canada and UBC only started using it in January. My surgeons did not quite believe SPY and so I was a bit of a guinea pig. Oh well, someone has to be!

The plastic surgeon also had to remove the last "fill" of saline put in last week as he said it would be counter productive to try to close a wound with a full tissue expander underneath. Also he said that normally he would not be doing the fills so fast but again, the radiation gang want to get their hands on me. At one point a few months ago, there was a lot of discussion about "windows" between chemo and radiation or surgery and so on. Of course we patients worry about these windows because the bad old cancer cells lurking and waiting for an opportunity might take the window route while no one is looking or treating.  But I have not seen the radiation oncologist since December and only communicate via phone calls to postpone treatment as we wait for my incision to heal and my new boob to fill up with saline. When I saw my medical oncologist in March and she seemed OK then about the time sequencing.  Given what a basket case I was, I honestly don't think she was worrying about lurking cancer cells.

So next week I get another "fill" and April 22 I will have the CT simulation for radiation. Maybe. After all it has been postponed twice already. I still have the after effects of chemo. My taste buds are still not back to any real extent which means that the post surgical weight loss has been tough to gain back. My toes remain numb from neuropathy. My fingernails have little odd coloured craters in them. But I do have some hair~~about 1/8 inch of length and my eyelashes are also growing.

I used my new iPhone in the garden this week to try to take my own photo. In most of them I just felt so old looking. I suppose these many months of aggressive treatment have aged me but I think the weight loss too has accentuated the many fine wrinkles I see in my face and on my neck. But I have to see this as the new me and like what I see in order to move forward so I actually uploaded one of those photos to Facebook. This is it with one of our cats Jake, also in it. Both cats have been with me throughout in a way only cats can be. Flobi is curled up right beside me now and Jake is not far away.

For an update on Dick and the crossing of the Med and then the Atlantic, it is a "go." He has crew for all legs and leaves for Turkey June 17. I am not sure what I will do once radiation is done as for me it is  still one day at a time but it will involve hiking and yoga and maybe a couple of weeks on Van Kedisi in the Med if I am fit enough. Dates have now been set for a 2014 Nepal adventure including a trek to Annapurna Base Camp. March 22 to April 10 are the dates so if any of you are interested let me know. When I finally decided this week to take concrete steps for the timing, I knew that I was on the way back up. For those of you who have already expressed interest, an itinerary/costs will be coming your way soon. I have thought about calling it "Marian's Inaugural Breast Cancer Survivor Nepal Trek" but it seems a bit unwieldy. Ideas are welcome!

Communication and guilt...

After writing the most recent post this morning I realized that I had wanted to try to express some of my frustrations around communication. Since I myself find it difficult to articulate how I am feeling hour to hour, day to day with so many conflicting emotions and thoughts, I have to wonder how it is for those close to me. I suspect there has to be some "breast cancer fatigue" given that this has been going on for so long. I am certainly caught up in it and though I am assured that a few years down the road, much of this will be distant memory, this is not the case for now.

I have tried to write some of the myriad of thoughts down and it does help to post on this blog too, if only to force myself to make some sense of what goes through my mind most often. I am often short tempered and when I try to understand why, I sometimes think that I do not want to be asked yet one more time how I am. What am I to say? If I actually am in pain, I feel sick, I am not coping well, what will be the response? What can anyone really do about it? Of course everyone is concerned but there is a limit on what is helpful. Of course I appreciate the concern of my friends but I just get so tired of the constant reminder that I am not part of "normal" anymore; at least what was my old normal~~that is gone forever. Often I would just like to retire off to some hermitage for the duration. But of course that is not going to happen.

Next week I have 6 different appointments and the following week I will start radiation which means I will go daily, Monday to Friday for several weeks. I will hope that my reconstruction will not break down, this possibility being in the range of 40%. "The Intelligent Patient Guide to Breast Cancer," given to us at the beginning of our breast cancer treatments, says 50% but my wonderful plastic surgeon says 40%. I will go with his numbers!

But at the end of radiation, treatments will come to an end, barring the exchange surgery months down the road. Maybe by late spring, I will feel that I can in fact say that there is "no evidence of disease" which is the closest thing to cured as we get.

Meanwhile I hope that I do not alienate my friends and my family as I struggle to weave my way through my emotions and come out on the other side a better person. I know how lucky I am to have so many people rooting for me all over the world and though it may not always seem that I appreciate it, please know that I do. It is not always so easy to show. And I often feel guilty for not showing or voicing my appreciation.

But I definitely appreciate your thoughts and words whether by email, cards, Facebook postings or the occasional phone call. There should be a "new me" to face by summer!

8 months and counting....

Eight months ago yesterday I found the lump that was breast cancer. Two weeks ago today I had a second surgery, the first having been a lumpectomy and sentinel node biopsy last September. This time I had a total mastectomy, axillary dissection and immediate reconstruction with a tissue expander. A  week from now I will have CT simulation for a 6 week course of radiation which is supposed to start in two weeks.

I find it hard to believe that radiation will start so soon~~it seems to be that healing from surgery has barely begun. Yet I sense the urgency to begin from both my medical and radiation oncologists. Chemotherapy ended January 28 so it will be 9 weeks since I had that protection for recurrence, the big scary word that is always there. I am often reminded that even in the first surgery, 6 out of 8 lymph nodes removed proved to be positive and I was found to have extensive lymphovascular invasion. So yes, I guess the sooner we start radiation the better.

But then I read about radiation and its range of possible side effects and my fears gather again and threaten to overwhelm me. I have had surgery, chemotherapy, more surgery and last week started to take a drug called Anastrozole that I will take daily for 5 years~~another treatment to ward off recurrence. It has its own list of side effects, the worst being osteoporosis and fractures. On a more humorous note, at least now that it has passed, I neglected to read up on the more immediate and common side effects, number one being nausea. So the first day I took the drug and also my third day post op, I was surprised by sudden nausea and vomiting. Aha, there it was on page one!

Two weeks post op and I am again walking my usual 5 kilometre route to the Fraser River and back. This I have been doing the past few days with my good friends who continue to offer support. In fact,  I still have loads of support from family and friends. They praise my ability to recover so quickly and are happy and willing to do anything I might ask.

But my reality is one of daily awareness that I have breast cancer with a high chance of recurrence. I am still in the midst of the aggressive treatments required to stop or at least control it. As I enter month 9, I feel that for much of each day and night, I am alone with this awareness. It is very hard to understand this state of being unless one has had breast cancer or perhaps some other sort of aggressive cancer that has taken over one's life. I may appear to be handling it well, physically and may sound cheerful but so often it is more of a reflex; a need to have some control over how I appear.

I am thankful for breastcancer.org, an online forum which provides "virtual friends" who are going through so many of the same things at the same time. Books and doctors only tell us so much. Connecting with my breast cancer buddies 24/7 means constant reassurance and often real hope for the future.

And so another day starts. Awake at 0400, up at 0500 and at 0730 my son Andy has just appeared to start Triathlon #43 for the year. He continues to do these marathons in support of "Right to Play," and has so far raised $1350. His continued commitment will no doubt provide much needed funds for poor and underprivileged kids in many third world countries. He does make me feel proud and inspired and is one of my own greatest supporters. Though he has not updated his page on the Right to Play website recently, this is the link: http://righttoplay.akaraisin.com/pledge/Participant/Home.aspx?seid=2962&mid=9&pid=1206565

Chemo Land

Insomnia again...

Just when I thought that my sleep habits were improving, tonight I woke up out of what seemed like a deep sleep with a ridiculous night sweat. I have never actually seen this written anywhere as a side effect of chemo but it must be one as it has been frequently plaguing me since I started the Taxol. It may be a lingering S/E as I am now more than 3 weeks PFC as it is said in breast cancer land. Post final chemo apparently though for the longest time I was sure it must mean post fucking chemo. So while towelling off a ridiculous amount of sweat, Flobi our tabby cat came meowing and joined me in bed. He seemed to enjoy licking my bald, salty head but soon curled up beside me while I found myself wide awake. Another hot chocolate late at night while I read my last blog post.

Then I read the results of my bone density test done last month. This was done as a baseline as I will start a drug called Anastrozole, an aromatase inhibitor on March 8. If all goes well I will take it daily for 5 years to ward off a recurrence. The main side effects are osteoporosis (bone loss) and fractures. But given the alternative, I will go for the bone loss. My oncologist says that due to my weight bearing activities, I should fare OK. All the more reason I think to have that Annapurna trek goal for next March! Meanwhile the density in my lumbar spine falls within the normal range but in my femoral neck it is osteopenic, the precursor to osteoporosis and thus hip fractures, which this report says I am moderately at risk for over 10 years. So I will be taking a risk but hope that for me, the side effects will be minimal.

I have found myself feeling angry, frustrated and sad once again and it is difficult to determine why. Well yeah, I do have breast cancer and have just entered the 8th month of treatment but still, why now and what can I do about it? Sometimes I just want to retreat and hide away but that is not very realistic. And I feel guilty for feeling the way I do. After all I am getting the best care in the world. But no matter how much I wish the troubling thoughts away, they persist.  Not having control over what is happening is a big factor. It is what it is, and though I accept it as necessary to save my life, it is tough to continue down the medical path of more drugs, more surgery and then radiation and more surgery. I work on being as healthy as I can to mitigate the side effects and to hasten the recovery from each treatment but I often feel helpless as I go through the process.

I have been a planner for a long time and those who know me understand that I thrive on working on the next trip, the next trek, the next sailing adventure or even next week's hike and of course, experiencing the fruition of that planning. But at this time, I feel like I am spinning my wheels. Intellectually, I know that there is an end to all the treatments for my breast cancer and by the end of the year I will be able to look back on it with relief but that is then not now.

And so it is; I am walking my 5 km a day, going to yoga, eating healthy food, drinking very little alcohol and looking forward to spring. The roller coaster ride of breast cancer continues and I suspect that the light is just around the corner and my darkness will lift, just as it has before. This is my hope as I try to go back to sleep.

Sick of breast cancer...

Yeah I am sick of it for sure. Funny how that looks now that I have written it~~but maybe it is apt. Breast cancer has after all made me sick. Not the cancer itself of course since it is just an insidious beast lurking inside me and without the lump, it could still be quietly waiting. But no, it is the treatment of course that has made me sick and sick of the reason for it. But without the treatment that insidious beast would awaken and it would not be the treatment making me sick; it would be the cancer which would also be seriously trying to kill me.

Insomnia is also part of this journey. I have always been a light sleeper and my hearing is so acute that the slightest noise can wake me. Dick sleeps like a log and though he rarely snores, he contentedly puffs away the night. This I hear even with my earplugs in. Ativan helps but then there is the addiction worry. I am not REALLY concerned though every time I take my Ativan I do have fleeting thoughts of sleepless nights down the road when I will have no excuse to take sleep aids. I tried Melatonin a few nights but it gave me nightmares so bad I can't even attempt to describe them. And then Ativan does not alway work as in tonight. Lying in the dark tonight while I tried to go to sleep on Ativan I thought about Cheryl Strayed, author of the book "Wild" which I had just finished. She hiked the rugged Pacific Crest Trail at age 26 totally on her own with no prior backpacking experience but with a pretty crazy background. What amazing spirit!

But then her hiking adventures led me to thinking about this time last year when I was training for a short solo trek (with guide and porter) in the Helambu area of Nepal and a high altitude trek to Lo Monthang in Upper Mustang near the Tibet border with Dick and a group of old friends from our Saudi days. Both treks were wonderfully successful and by the end of May I was back in Canada planning for another Annapurna Base Camp trek in October. That was falling apart due to group member circumstances just as I found the now infamous (at least to me) lump July 18.

I can mentally play out that ensuing drama on insomnia nights and let me tell it does not provoke sleep no matter how many times I run through it! "What the fuck" comes to mind often. How did this happen? Yeah it is what it is but still, I sometimes wish that it has all been one of those really bad dreams that you wake up from saying "thank god it was just a dream." Honestly I still want that to be true.

From training for treks to training for surgery is how it is now. Tonight I decided that tomorrow is the day I will really get disciplined and this will include yoga, meditation and walks with a few more snowshoe days thrown in. But then insomnia came along and here I am late at night downstairs drinking hot chocolate while I should be sleeping in preparation for the healthful training I have planned for myself.

It is almost impossible to go a day without knowing I have breast cancer, no matter how much fun we have. There are the side effects of course from chemo but there is also the long string of appointments with so many doctors, so many tests and alway the next looming treatment.

Tonight too I was thinking about my choice of surgery. Full mastectomy and axillary dissection are not optional but reconstruction is. For months I thought about that choice. I read all I could in my two favourite breast cancer books; "The Intelligent Guide to Breast Cancer" which we are all given here in Canada on diagnosis and "Dr. Susan Love's Breast Book" which is given out in the US. I spent time with a woman who had the same reconstruction done by the same plastic surgeon as I will have. Knowing that this requires more surgery, anesthetic and recovery time, I have often pondered my decision. I have spoken to women who have had bilateral mastectomies and done nothing and to women who have had reconstruction at the time or later. Each has her own reason for her choice. I do think that having both breasts removed may have swayed me to do nothing, though I am not really sure.

There has been much written about how women feel about losing their breast(s) and how they make the decision to do nothing or to have reconstruction. Though I have small breasts to start with this does not make it any easier to visualize my left breast there but nothing on the right side. To go through surgery, chemo, more surgery and radiation is wearing but that is not all that we have to contend with. There is nerve damage, numbness, the possibility of lymphedema, a very serious situation in which the lymphatic system no longer drains properly due to the removal of lymph nodes and to top it all off, our breast or breasts are gone. And there is still the fear of cancer still remaining or recurring.

Then there was even a small twinge of guilt or maybe selfishness. Choosing reconstruction means longer recovery time and more surgery months after radiation. This means more dependence on family and others to a certain degree. I also thought briefly that if I chose not to have reconstruction that maybe I could still sail across the Med and the Atlantic with Dick. I soon came to the conclusion that it is unrealistic to consider that idea as no matter what I choose,  treatment and subsequent care will extend far beyond the time frame for the start of the sailing trip.

So yes, I am sick of breast cancer. It has been a tough learning curve that never seems to end. I know it will end but is is not really helpful at this point to be told that a few years down the road much of this will be a distant memory. For now, breast cancer is front and center no matter how well I am coping. I also know that I should not feel guilty or selfish for choosing to still have a breast at the end of the day. If it does not work out at least I have given reconstruction my one and only chance.