found: a good home for a fake boob

A few weeks ago, I wrote that I had an almost new prosthesis that I was seeking to re-home. This is what happened next:

Julia consulted other directors of Breast Cancer Action, who suggested that there might be a program to send prostheses to developing countries. She also called the social worker at the cancer centre who told her that Canadian Cancer Society takes donations (1745 Woodward Dr., Ottawa, ON K2C 0P9. 613-723-1744). I am so grateful to her for doing this.

Throws Like A Girl , who is part of our group at Mothers With Cancer, suggested that we need “a prosthesis relocation program.”

Imstell jumped in with the following:

“Maybe we [Mothers With Cancer] could just host a bulletin board where people could post their needs:

FREE TO GOOD HOME Single 36C teardrop prosthesis. Likes to travel. You pay shipping.

WANTED swimming prosthesis. Any size large enough to hide my belly.

These had me laughing out loud but I think we might actually get something like this going.

Finally, Christine told me that she has a friend who lives locally, who was in need of a new prosthesis. It turned out to be a perfect fit.

Thanks to all who commented here, via email and on Facebook. You made me laugh. And you made me feel good about the power of community.

Laurie also blogs at Not Just About Cancer.

really, it’s just a boob

I used to sound very flip when I thought about losing a boob. Because, you see, I’ve known since the beginning of my treatment that I would be having a mastectomy after the chemotherapy. That’s the difference when you have Inflammatory Breast Cancer — it’s necessary to have chemotherapy first, then the mastectomy. I’ve often had people ask about that: “Oh, I thought they usually did surgery first,” or “I guess some doctors do things differently.” I typically didn’t want to get into long, drawn-out educational sessions about IBC so I would say something like:

With my kind of cancer, they have to do chemotherapy first. It is much more successful doing chemo first and surgery second.

Get someone who really pushes and you can be really blunt:

Well, with my kind of cancer, they used to do surgery first, but they had a 100% mortality rate, so chemotherapy first has really improved the success rates.

You have to be careful with that one, though. That’s a conversation stopper, so I really didn’t use it much.

But as I was saying, I was very flip at the beginning about losing a boob.

Oh, take it off, take them both off. What do I need them for? They’re a nuisance anyway. I always get food on them when I’m eating, I call them “the shelf” for food, I mean COME ON, they’ve never been used for their proper purpose anyways!

But you see, humor is one of my best coping mechanisms and can hide very great pain — even from me — so for the longest time, I didn’t think it bothered me at all.

In one way, it doesn’t. It’s being done to save my life, after all. So, take it. If they had to take both, that would be fine too. Take them. Living is more important than having one or two boobs. My goodness, I love my life, I want to live as long as I can. Take the breast.

It’s just not as flip and “nothing” as I once thought it would be. I’ve thought about it, I’ve seen pictures, and I will be disfigured. I will be lopsided until I get a prosthesis. I will be lopsided for real unless/until I get reconstruction done. It will be different, definitely something to get used to. Will I grieve my breast? I don’t know. For the longest time during treatment I’ve hated it. I’ve wanted it gone. As I said to my husband, “it tried to kill me.” Even writing that, tears well up in my eyes because in a way, that’s really the truth. I guess realistically, it’s not the breast that tried to kill me, it’s the cancer in the breast, but it’s hard to separate the two. The cancer in the breast has tried to kill me, so the breast needs to go. Why grieve it? Why not just want it gone, and as soon as possible? *The tears continue to fall.* The cancer in that breast spread to other parts of my body and gave me that awful Stage 4 rating. The cancer in that breast has tried to take me away from my son, my husband, my extended family, my loving friends, all of you here, the life I love so much, so many people that I love who love me. The cancer in that breast has to go. *Tears continue to fall*

When I put it that way, it all becomes very simple. The breast has to go. I guess the grief is for the previous breast, the history of the breast, the pre-cancer breast that was a nice breast, that didn’t give me any trouble except for getting food spilled on it when I was eating, thereby getting dubbed (by me) “the shelf.”

I guess it’s hard to think of any part of yourself being there at one time — on Wednesday morning there, and when I wake up later on Wednesday, it will be gone. But so will the cancer in it, so will the cancer. That’s what I have to remember, that’s what I have to focus on.

My wise therapist did tell me that it would be emotional for me. My wise and incredibly kind surgeon said that it’s an emotional thing for women to go through. My therapist said:

You don’t have to look at it right away, you may feel sad, and that’s OK. Even though you know that this is for the best health-wise, you may still grieve this loss. That’s OK. Let yourself. Frank and Nate may have some emotions around you losing your breast too. It may be a difficult time for your family.

Then she told me to call her if I needed to talk. I love my therapist. My surgeon? — I think I’ve hit the jackpot with him. What a kind, compassionate man.

So it’s all very mixed.

It has to go. I want it gone. I may grieve it; I don’t know yet.

I’ll rely on the love of my family, my friends. I’ll rely on prayer and good thoughts — mine and others. And as always, I’ll rely on my faith.

For God is with me through all of this — through the tears, the anxiety, and will be through the surgery. I can tell a difference, you know. I am anxious, but a different anxious than if this surgery had happened seven or eight months ago. I’m anxious, yes, but it’s not an out-of-control anxiety that I used to go to. It’s an anxious with a deep belief that God is with me every step of the way, and that ultimately calms me somewhat.

As new bracelet states, to remind me always:

Never will I leave you or forsake you.
Hebrews 13:5

cross posted at Just Enjoy Him

the things people say

Beside the “what’s your prognosis?” which I’ve never responded to with a straight answer, particularly if the person is an acquaintance (those are the people who are usually asking), I got an interesting (understatement) comment the other day.

Aug. 6 is my upcoming surgery — modified radical mastectomy of my left breast. Understandably, I’m a bit anxious about this. Anxious, and knowing that things will be different for all of us in my family with our reactions to this physical change in me. I used to be cavalier, flip about this. “Oh, it’s just a breast. I don’t need it. I never used it for the purposes for which it was intended anyways.” But it’s a part of me and the closer I get the surgery, the more I understand that this is going to be difficult emotionally. Of course it has to come off. The surgeon outlined all the reasons why a modified radical mastectomy would be the best surgery for me and then said that I could opt for a lumpectomy and I said that I would be scared the rest of my life if I got a lumpectomy. It doesn’t make sense for a woman with Inflammatory Breast Cancer to get a lumpectomy because the cancer will just start growing again. Maybe he just wanted me to feel like I had a say in the matter; I don’t know. I do know that this breast has to come off for my health.

But I digress.

I told one co-worker, #1., that my surgeon said that after about a month they can send me to a place to get a prosthesis, and that I certainly wasn’t coming back to work without said prosthesis. She completely understood. I mentioned that to another co-worker, #2., and she said that “nobody would notice” if I came back to work without a prosthesis.

*blink* . . . . . . *WHA??!*. . . . *HUH?!!*

Now, I’m no Dolly Parton (thankfully), and I’m sure I’m not the bustiest woman on our campus, but I am a solid size C, and I really think people would notice and I would feel incredibly uncomfortable about being Judy One Boob back on the job.

I kept saying to her that I thought that would be the case if I were a cup size A or B, but that since I’m not, I’m pretty sure that people would notice. I didn’t, however, ask what she was smoking or tell her she needed to get her eyes checked or just let out with a “Oh, h@ll, you are just full of sh*t, once again!”, so I think I handled it pretty well.

*sigh* Judy One Boob.

I always thought I’d have a cooler Indian name, but if this is the way it is, this is the way it is.

I’m too scared to dance with wolves anyways.

Opinions: professional, survivor and kids

I have posted before that I am involved with the non-profit organization Kids Konnected . The kids and I started attending meetings 2 years ago during my treatment. My son does not attend anymore, but my daughter is a teen leader and still is active with the teen group, so we attend every other Monday. Lynnette Wilhardt, MSW, LCSW is the Clinical Director and a specialist in Psycho-Social Oncology Counseling. I asked Lynnette if she would be willing to write some guest posts or articles for the site. She has given me the top questions most often asked of her regarding cancer and how it affects children. I will publish a few at a time over the next few weeks.

Should I bring my child with me to the hospital/or let them visit me when I am there?

Yes, I think it can be helpful for most children to visit their parent in the hospital. Most children find it comforting to see for themselves what is actually going on with their parent. If left to their imagination, they will often come up with something that may cause them far more stress. Children are very adaptable and if primed about what to expect, such as tubes, machines, etc., most will find the experience more helpful than scary. I think it sets a good tone regarding the parent’s illness that it is a family experience and that everyone goes through it together and will support one another. If your child is struggling with separation anxiety over the idea of you going into the hospital, it can be helpful to them to be reassured that they will be able to visit you. Making cards and gifts for the ill parent can help give the child something to do and focus on while the parent is away.

If a child refuses to go, they should not be forced to go. However, they should be asked why they don’t want to go and the caregiving parent should help explore their feelings about it to dispel any myths they may have regarding it. If a parent is terminally ill and it may be the child’s last chance to see the parent to say, “Good-bye,” then the child should be strongly encouraged to go including explaining to the child that it may be their last interaction with their parent.

This past Monday at the group, a woman who will be having her Mastectomy this week asked about bringing her children to the hospital. My children D then 6 and N then 13 did come to visit me in the hospital after my mastectomy. I originally wanted them to come to see me, but when D came in I saw the look of fear on his face and I felt so bad. Then when he and N came back up after she got out of school I was in extreme pain and they had to give me the pain meds in front of them. I am petite, I had to explain that if I started to not make sense, I was okay – it was just the pain meds. My opinion to this Mom was that if the kids were going to come to see her – perhaps someone should go in the room prior to make sure that she had her meds and was “ready” for the visit. This may be my attempt/wish in hindsight to control the situation and try to spare the kids any additional discomfort. I discussed these feelings with Lynnette and she felt that even though the kids were frightened she still felt that it was better that they did come to see me.

This week I decided to ask both kids, now that time has passed and I am healthy what their opinion is:

N said “no one was going to stop me from seeing you.” She did not want to hear my voice on the phone – she said that she needed to physically see me to know that I was alive and that I was going to be okay. She said that it was not as much scary as sad. She also remembered that they got to eat the chocolate that others had brought me. Chocolate does make everything better!!!

When I asked D what his opinion was, he said that it was good and bad when he came to see me. Good because he got to check on me, but sad to see me so sick and hooked up to the machines. He told me that is why when he sat in the room he looked everywhere around the room but not at me because it was too sad. I asked him if he was scared and he said “yes” scared and sad.

As with any situation and opinion there is no RIGHT answer. So much depends on knowing our own children, their ages, their anxiety level and our specific medical situation.

What are some of your opinions on this question?

breast envy

I find myself continuously inspired by the group of bloggers in our little community. Today’s post was provoked into being by Lahdeedah’s post “The Road to OK” and imstell (Stella)’s response, “Acceptance.”

I have always felt ambivalent about my breasts. As a young woman (I was an early bloomer, it must be said) they brought me attention that was at times unwelcome and at times confusingly gratifying. They fed two children for a total of more than three years. Once large and round, they were irrevocably changed by motherhood, as my nipples moved southward and seemed to stretch ever more closely towards my toes.

And then my right breast betrayed me, playing host to the tumour that would eventually spread to my lymph nodes and then to my liver. On February 2nd (“Groundhog Day!” I exclaimed when my surgeon told me the date. I had to explain that I was not objecting on the basis of this being a special holiday for me), I had a mastectomy.

I feel no less ambivalent now that I have only one breast. I was consumed with terror before the surgery and relieved afterwards to see only one bandage across my chest. I was frustrated by drains and then by the fact that healing seemed to take a step back two weeks after the surgery (no one had warned me this would happen).

More than two years later, I am still plagued with post surgical issues, including a limited range of motion and lymphedema in my chest, back and rib cage (when I showed this to my surgeon, couple of weeks after surgery, he shrugged it off as “just back fat,” so loathe was he to admit that he didn’t know. He actually said that the fact that my breast was no longer pulling it forward the fat was sticking out more. My physiotherapist just about had an aneurysm when I told her that story).

Radiation left me with serious scarring that exacerbated the lymphedema and made it painful to wear a prosthesis. Most days I am perfectly fine with this. At other times, I feel extremely self-conscious. Some days I dress to camouflage and some days I am quite content with the altered landscape of my body.

It is in the summer time when I most miss having two breasts, when I sometimes long to look “normal” in a tank top. It is also when I find myself (as Jill confesses in her post), ogling other women with envy.

However, I remind myself that how I look is perfectly normal to those who know and love me. My older son has even said as much, as has my spouse. And along with the lines around my eyes and mouth (I smile a lot), the stretch marks on my belly (I have borne and birthed two beautiful boys) and even the little scar that runs from the corner of my left eye (I hit a metal bar when I was chasing a cute boy in my class during a game of tag in Grade 6), the scar on my chest and my asymmetrical shape tell the story of the experiences that have shaped who I am.

The following poem was originally posted on my blog, Not Just About Cancer:

voyeur

Women’s breasts emerge in the heat of the summer.
Big ones and small ones.
Perky ones (I could fit them in my hand).
Breasts nursing babies.
Freckled cleavage.
Wrinkled cleavage.
And breasts that can’t possibly be real.
I stare at women’s breasts now with great fascination.
And not a little envy.
I have never seen a woman with one breast.
Except in the mirror.