love and death and samosas (by Judy)

July 25, 2011

Yesterday I went to my friend N’s mother’s calling hours. Her mom, Mrs. A., had died on Friday morning while in hospice care, having had ovarian cancer for five years or so.

I loved Mrs. A., just like I loved Mr. A. who passed before her. I wrote about his death, but I’m not sure where it is and so I won’t link to it. It’s the end of an era in a way, with both of N’s parents being gone which is incredibly sad in itself. Unless I go before my mom, her death will be the end of an era, with my brother, sisters, and me going from being someone’s child to being nobody’s child. I can’t imagine. It must be such a strange feeling, your strongest links to the past being gone like that.

I’ve known Mrs. A. for as long as I’ve known N., since I was nine years old. I can still remember sitting in their kitchen, Mrs. A. giving me wonderful East Indian foods to eat, samosas being one of my favorites and those sticky sweet twisted desserts that I can never remember the name of being another favorite.

Selfishly, I suppose, I loved seeing N and her wonderful husband, J, yesterday, but of course I wish it had been under happier circumstances. Being the thoughtful people they are, they both asked me how I’M doing, even in the midst of their grief.

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I mentioned in yesterday’s post how well I’m doing on these new chemo drugs, and I am to a certain extent, but I do tend to downplay the fatigue which is a huge part of it. I’m tired most of the time, and work wears me out even though it probably wouldn’t be that taxing to a healthy individual. Almost like clockwork, around 3:00, I really start to crash which makes homelife difficult. I often end up just going home and crawling into bed for the rest of the evening. I hate not being there fully for my son and husband. It’s hard.

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Anyways, yesterday’s calling hours also selfishly made me wonder about my own mother and me. Will I die before she does (she’s 83 now; 84 at the end of Aug.)? Or will the treatment(s) work and help me live to raise my own son which is my biggest wish, my largest prayer. Just give me enough time with Energy Boy, God . . . please.

It’s the unspoken selfish thing that goes through my mind, and perhaps the minds of others with cancer when someone with cancer dies. It goes through my mind especially when it’s someone with breast cancer: that could have been me, that could be me. It’s been — so far — the unspoken part that I think right after I’m struck by how sad that person’s death is, what a loss to the world that they’ve died. Then I go to the unspoken place, the place that maybe others think about but don’t talk about, the place that makes me sound selfish to myself, the “that could have been/could be me” place.

I hate that place. I hate it not just because it just makes me sound so very selfish, but I hate it because . . . I also don’t want to go there. But I do. I can’t help but go there with my illness.

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I’m sorry, Mrs. A. — and all those others who have gone before me. I’m sorry for being so selfish when I should be thinking about and grieving your death. And I DO think about and grieve your death, but there’s a tiny part of me that does the “what if?” Then I typically feel guilty about thinking that, and go back to grieving whoever was lost to us.

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Love and death. It’s so hard to lose people that sometimes I wonder if it would be easier to love less, but the answer to that is always “No,” for the people I’ve lost have enriched my life so very much that I’m glad I knew them. I’m glad I knew them, loved them, and even grieve them, for it’s in grieving that we know that we are capable of such love. The heart has the capacity for more love than we can even imagine and I’d hate to miss out on any of it just out of fear. I feel that way about even the closest people that I’ve lost; probably feel that way even more about those closest to me that I’ve lost. No matter how long their time here, I am glad for having known them, for having loved and been loved by them, for having them enrich my life.

I just hope that when my time does come (and I hope that’s a long time from now) that I can leave such a legacy as well. A legacy of love, given and received. I can think of no better legacy.

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Good-bye, Mrs. A. I trust and hope you are truly resting in peace right now. You enriched my life, and I’m glad I knew you. Thanks for the samosas.

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Cross-posted to Just Enjoy Him.

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Need Help Buying Lymphedema Sleeves?

January 5, 2011

Are you or do you know a breast cancer survivor?  Please read today’s post and pass it on.  If you can’t afford to purchase a lymphedema sleeve, gauntlet, and/or glove, and you can’t manage your post-mastectomy swelling, Crickett’s Answer and LympheDIVAs want to help.

Today, I am pleased to announce a NEW opportunity for breast cancer survivors who have had a mastectomy and/or axillary dissection of the lymph nodes due to breast cancer and have swelling of one or both arms but cannot afford the $200-$500+ cost for two sets of the compression sleeves and gauntlets that survivors with lymphedema must wear every day to keep the swelling in check. 

Although lymphedema sleeves are medically necessary, they are not covered by Medicare OR most insurance plans under current law, and thousands of survivors go without the sleeves, needlessly suffering congestion, swelling, and pain that interferes with their normal activities.

Crickett’s Answer, a 501(c)3 nonprofit organization founded in memory of Crickett Julius, has just joined forces with LympheDIVAs to help other breast cancer survivors who fight not just the beast that is breast cancer but also the fallout of side effects that includes lymphedema, which may limit survivors’ activities.  By working together, they are now able to provide needed lymphedema sleeves and gauntlets to women who need them but cannot afford them out-of-pocket or convince their insurance companies to pay for them.  They do this in honor and memory of their loved ones.

Crickett JuliusCrickett Julius survived breast cancer only four months, but her mother and cousin are dedicated to helping other women enjoy their life post-diagnosis through Crickett’s Answer, a 501(c)3 organization that provides wigs, mastectomy products, oncology/mastectomy/ lymphedema massage, facials, and other pampering services as a way to help women feel feminine and beautiful after losing their hair and/or breasts.

Rachel TroxellLympheDIVAs was founded by Rachel Troxell and Robin Miller, friends and breast cancer survivors who wanted to create a more elegant and comfortable compression sleeve.  Rachel continued to build the company during her later recurrence.  Even though she died two years ago, at the age of 37, her father, mother, and brother continue to grow the company in her honor and in the hope that LympheDIVAs’ compression apparel will continue to inspire breast cancer survivors everywhere to feel as beautiful, strong, and confident as Rachel was.

To ask for help, please download and complete the forms at Crickett’s Answer, writing in “lymphedema sleeve and gauntlet” on page 2 of the application. 

To help someone else, please copy and paste this post on your blog or email it to a friend (or your local cancer center!).

To donate, go here

To help change the law so that this medical garment is covered by cancer survivors’ insurance, stay tuned for more about the Lymphedema Treatment Act when it is reintroduced in the 2011 Congress.

Because of these women, these three thirty-something women who didn’t ask to get breast cancer, and the men and women who love them, there is now help for women who can’t afford lymphedema sleeves, a medically necessary garment not typically covered by insurance.  Their legacy lives on.

Note: Cancer patients who are members of the National Lymphedema Network and who are treated by an NLN therapist can also apply to the NLN garment fund, set up in honor of Marilyn Westerbrook


she thought of her children, by Judy

December 8, 2010

As everyone knows, Elizabeth Edwards lost her battle with breast cancer yesterday. I never knew her personally, but the news saddened me, as news of anyone dying of cancer saddens me.

I relate to Elizabeth Edwards. Her thoughts, as she declined, were of her children. Her youngest son is 10 years old. My son is nine years old. When I was first diagnosed with Stage IV Inflammatory Breast Cancer nearly three years ago and, at that time, given a five-year prognosis, my first words were, “but I have a six year old son.” As if that pronouncement would stage off death, as if things would end up differently for me because my son needs his mother. All children need their parents. I can’t say that my son needs me more than other children need their mothers, but I can say that our case is more complicated than many others. Because my son was adopted from Vietnam at four months old, he has already experienced losses through his adoption, including the loss of his birth mother. It pains me to think that he may lose me, his everyday mom, because of this horrid cancer.

Like Elizabeth, I ended up conquering cancer. With an incredible medical team, great medicine, and, I believe, a strong faith in God and many people praying for me, I beat it. Almost a year after I was diagnosed with a staggeringly bad form of cancer, at Stage IV even, I was found free of cancer, in remission.

Unfortunately, also like Elizabeth, I am having a recurrence of my cancer. The treatment for this cancer worked once and my oncologist believes it will work again. I want nothing more than to watch my son grow up, for my son to have his mother around to help guide him to adulthood. These are some words that Elizabeth echoed in an interview:

“It scares me the most that there’s going to be a day that, you know, is likely to come before I wanted it to come where I have to tell these sweet children goodbye,” she said in a Nightline interview.

It is this that breaks my heart the most. For Elizabeth. For her children. And for mothers with cancer who have died before me, and of course for their children. And, whenever it happens, for my son, and for me of not being around — of the possibility of not seeing him grow up, the possibility of not seeing him go through college, get married, have children. For the things that so many people take for granted that I don’t take for granted anymore. I can’t. I simply don’t have that luxury.

Neither did Elizabeth Edwards. Her death is a loss to so very many people, but these days, my heart goes out to her children.
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Cross-posted to Just Enjoy Him.


RivkA’s passing

November 1, 2010

RivkA’s funeral was late Saturday night.  Here are two comments from Toddler Planet that I wanted to share with you.

Michele said:

I have never seen so many people attend the burial of a private person in Jerusalem. More than 1,000 people, men and women, of all ages, gathered together at 10 pm on a chilly Jerusalem night and paid their last respects to a young mom who really and truly inspired many of us to live more loving, more deliberate, more in-the-moment lives.

and Robin:

There were so many people at the funeral Andrea that many had to stand outside, listening to the loudspeakers. It was a night of so much love, and pain, and yes even laughter. RivkA would have wanted it that way, and I trust that even now she’s up there somewhere taking the place by storm.  Here’s a link to the Jerusalem Post essay you mentioned, it’s a beautiful tribute to a beautiful woman.

Condolences for the family can be left at RivkA’s blog, Coffee and Chemo, and you are of course invited to share any memories of her there or here.


Jenni

December 7, 2009

It’s nearly time.

Jenni, we love you, we miss you, we wish you peace and freedom from all the pain and suffering. Goodbye, good friend.

David, you will always be welcome here with us.  We send you strength, and the freedom to admit weakness, and most of all, pure, simple love, the love that all mothers have for all children, and that you and Jenni have for Jack and Jamie.  May little Jack grow up knowing how important his mother was to women all around the world, and how very much we learned from her.

Peace be with you all.


Clusterfook update

February 27, 2009

Please go read an update on our dear friend and contributor, Lisa, from Clusterfook.  She has brightened our days here and spoken truth about cancer.  Most of all, she has spoken love of her children, and worked to help them have good memories of this time and lessons that they will take with them forever.

Lisa, we love you.  Go in peace.

Edited to add: Lisa’s gone.


A Survivor’s Story, at Relay for Life

January 29, 2009

It’s funny.  I do a lot of talking online about cancer and survivorship and what happened, and I give talks professionally all the time, but put them together and it’s a whole new level of scary.  You see, I started talking about cancer on my blog because I wasn’t good at talking about it in real life.  I didn’t call up my girlfriends and chat casually about chemo or mastectomy … or my fears.  I typed it here instead, telling all of you, but without the risk that face-to-face emotion entails.  It was the way I coped.

But last night, at @kbaumler’s invitation, I spoke to a room of 100 Relay for Life runners, team captains, activists, survivors (a few), and caregivers (many, oh, so many) about my story.  About what it was like to have cancer.  About what it was like to survive cancer, to help kick off their Relay for Life 2009 season.

I didn’t know what to talk about.  Kristina said, “tell your story.”  So I did.  The first draft came out kinda dark.  I think I brightened it up some with a subsequent draft but it was still not a happy story.  But how could cancer be a happy story?  Yes, yes, I’m thrilled to be alive again, but the end result of a year of struggle and pain and work is … that I’m at the starting line again.  I’m alive. … but so are all of you, y’know?  It’s hard to be grateful for — or happy about — cancer.

But today I am grateful, for I was able to help three people yesterday.

1. @alexcaseybaby, whose twitters about a friend having a preventative double mastectomy came just as I was doubting my words.

2. A woman who came up after my talk last night and told me that she was grateful that I spoke the forbidden words — acknowledging that the fight against cancer does not end with the good news that the tumor is gone.

3. Another mom, who happened to be sitting at my table last night with her two kids, as I sat there with my two kids, all of them eating fruit and snacks together, who left as I began my talk.  I worried then that I had offended — but as it turns out there was more to the story.  You see, she has cancer too.  She’s having surgery on Monday and has to tell her kids … today.  She needed to hear me talk, to see me standing there, to see that there is life beyond cancer.

And talking to her afterwards, as I told @mommy4cocktails, who so graciously came out just to hear me and sit by my side (and for which I’m forever grateful!), was the reason that I’d been brought there.

That made it all worthwhile.