A Journey With Cancer

Welcome to the "On Balance" guest blog. Every Tuesday, "On Balance" features the views of a guest writer. It could be your neighbor, your boss, your most loved or hated poster from the blog, or you! Send me your original, unpublished entry (300 words or fewer) for consideration. Writers need to use their full names. Obviously, the topic should be something related to balancing your life.

By A.A. Camp

Four years ago, I had thyroid cancer. Breast cancer is my second journey with the disease. Now I follow the same painful path my mother and grandmother trod for many years.

My thoughts have turned inward the past few months as I continue through cancer diagnosis and treatment. I would like to know many things that can't be found out. I think of many things that I can find out but do not really want to know.

My thyroid cancer was a snap compared to this. I had my thyroid removed and then spent three days in isolation in the hospital while the radioactive element that I swallowed oozed its way out of my body. Although I need to take medicine for the rest of my life, that threat is gone, done. My husband, Fred, did quite a bit of juggling those days as our 12-year-old son was hospitalized for an overlapping period related to a chronic medical condition. Traces of radiation were still coming out of my body, so I could be only a bystander in my life.

But this cancer killed my mother when I was 22, barely an adult. It killed my grandmother, too, although at a later age. This cancer strikes fear in me -- for myself, for our two daughters, and for their daughters, should they have any.

My second journey began on the last day of last year. I had an ultrasound to explore dark spots on my annual mammogram. Fred and I had little doubt it was cancer. A needle biopsy confirmed our fears two weeks later.

Two weeks after the biopsy, I had a partial mastectomy. Now I am halfway through my chemotherapy regime and then will undergo radiation. (No oozing stuff this time!) I hope to have it all finished by Thanksgiving. So far, I have had all the usual side effects. Thankfully nothing out of the ordinary. What a funny thing to be thankful for, but I am.

So what of balance for these many months? I had quit my job shortly before my diagnosis for unrelated reasons. I would have resigned anyway because I am so fatigued. My oncologist tells me that some women are able to work through treatment. My heart goes out to them, with admiration for their strength. Fred's employer has been very supportive, telling him that reshuffling of work or time off that he needs, he will have. His manager regularly reminds him to buy me flowers.

Since our 16-year-old son is the only child remaining at home, the household is easier to manage. Our son is doing more. He cooks for me, cleans for me and helps me with my daily shots -- a chore that Fred refuses to do. (And it is only a small needle, you wimp!) I cannot image how this would have all worked out 10 years ago when all four children were home.

Surprisingly, in the short term, my life is in a state of balance. It's an altered state; one I wish would go away. But I have all the medical, financial, spiritual and physical support that I need. My prognosis has always been excellent.

I now think of longterm balance. Mainly, what lies ahead for my daughters. What they will need to balance their lives with the legacy of three generations of breast cancer? Beyond the emotional turmoil, there are many practical matters to be decided concerning genetic testing. Complex legal, financial, insurance and employment issues lie ahead.

In the meantime, Fred, our sons, our daughters and I plug along with life. We know that we are fortunate, more so than many others. As a family, we will make it through my illness.

A.A. Camp, also known as "Frieda," is a breastfeeding specialist and falling-away Luddite. She can now find Web sites on her own. Sometimes. Sort of. Maybe. She and her husband, our regular poster known as "Fred," live near New Orleans.

By Leslie Morgan Steiner |  April 29, 2008; 7:05 AM ET  | Category:  Guest Blogs
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Comments

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Fred and Frieda: My heart goes out to both of you. I am so glad that you have a wonderful relationship to rely on during this really hard time. You also sound like you have a great son. Best wishes. You are both remarkable people. :)

Posted by: foamgnome | April 29, 2008 7:27 AM

God bless you Frieda! Keep up the good fight. There are a lot of "strangers", both people you don't know and odd people, from this blog that wish you well!

Posted by: Moxiemom | April 29, 2008 7:48 AM

I can only echo the gnome.
Our best to both of your in this difficult struggle. Many thoughts and prayers are with you both.

Posted by: chemguy | April 29, 2008 7:48 AM

Frieda, your story has nearly brought me to tears at my desk. Know that all your faceless friends on this blog are thinking of you and Fred and your family, and inspired by your strength. Keep well.

pq

Posted by: PQ | April 29, 2008 7:49 AM

Ditto what PQ said!

Posted by: Ishgebibble | April 29, 2008 8:20 AM

Freida, Thank you for writing. I have so enjoyed reading Fred's posts and learning about your family. My heart goes out to you and I hope that, like the thyroid cancer, this will just become a part of your past. We had a journey with cancer in our family recently as well and it is funny how you find balance in the new routines of chemo appointments, at home meds, etc. My son had his last chemo treatment right before a Thanksgiving holiday. It made for a great turkey day that year. I hope yours works out that way too.

Posted by: PT Fed Mof2 | April 29, 2008 8:20 AM

sortof puts things into perspective, doesn't it? Most of spend way too much time worrying about how long to breast feed, how much to work, how to balance self with others...and the answer is plain as day: you just plug on. Things change and balance changes. Integrity is the real goal. It isn't a 'pretty' answer, but it says it all. I just knew Frieda would be as articulate as Fred has shown himself to be on this blog.

Posted by: dotted | April 29, 2008 8:24 AM

I have to admit that even the slightest thing throws a wrench into my schedule. I can't imagine what would happen if something major should happen... like needing surgery or even physical therapy.

My hat goes off to Freida and family. You seem to be taking this in stride with a calmness that I envy.

Posted by: Billie_R | April 29, 2008 8:29 AM

Frieda - well, I *did* cry, on my couch. No one (son, DH) have asked me why yet.

What a beautiful perspective you have. It must be tough, no matter how many kids live at home.

Our hearts go out to you.

Posted by: atlmom | April 29, 2008 8:32 AM

Fred and Frieda and your kids--my heart goes out to you too. My sister went through much the same thing as your son when she was 16, when our mother was sick also with breast cancer. I would just say that your openness and honesty with your children and especially your son who is at home will be something they will always have to cherish--it is hard no matter what but having that communication and openness makes it so much easier. Thank you for sharing this with us.

Posted by: tsp 2007 | April 29, 2008 8:54 AM

My warmest thoughts are with you and Fred and your family. Put yourself first, do the things that matter most to you, get the rest you need -- and I look forward to reading your next guest blog here.

Posted by: mehitabel | April 29, 2008 9:06 AM

Good for you and your attitude. Both my mother(Stage III) and my mother in law (Stage IV) are now struggling with ovarian cancer. My mom has two more treatments left until she begins maintenance therapy. My mother in law has been on chemo since January of 07 and they still can't seem to shrink a bladder tumor related to this.

I'm not sure what has got my husband and I through this whole ordeal these past two years. Fortunately we live near his mother, but my mom is only 5 hours away. It is difficult. My mom must still work to maintain her health insurance coverage. Fortunately, her employer (she was a home health care nurse) allows her to work on her non-chemo weeks (she gets chemo in a 28 day cycle on days 1,2 and 8).

My mother in law is in her 70's and is not the active woman she once was due to the neuropathy in her feet. It is difficult to see her sitting at home most of the time since she has a hard time getting out.

Ovarian cancer is considered one of the silent ones and it doesn't get the publicity of breast cancer - Ladies (and the men who love them) push your doctors to get your CA 125 blood tests and transvaginal ultrasounds -this is one of the only ways to detect this early.

Balance with cancer is tough on the patients and their families. Thanks again for sharing.

Posted by: amwhite | April 29, 2008 9:07 AM

Posts like this do so much to build community in this little virtual world at OB! I can't believe I care so much about people I've never met. Fred and Frieda -- we're all out here cheering for you. And I'm learning about grace in handling the leaps and lurches of life. A dish of flan for you both. Thanks for being out there and sharing your stories (and your top 10 lists Fred).

Posted by: anne | April 29, 2008 9:09 AM

I doubt I'm the only one with tears in my eyes at reading this. Every good thought and wish goes with you, Frieda, and with Fred and your family on this journey.

Posted by: WorkingMomX | April 29, 2008 9:10 AM

So, to turn the attention to the next generation, how does someone in his or her 20s maintain balance when his or her mom or dad are seriously ill, and live elsewhere?

Posted by: Anonymous | April 29, 2008 9:21 AM

Dear Frieda,

I'm tsp 2007's sister. As she said, I was 16 when our mother was diagnosed with breast cancer, and so my thoughts and prayers go out to you and to your family. I can only reiterate the importance of constant communication about how things are going, and what steps are being taken with your treatment. While my mother did not share her progress, in retrospect it would have meant everything to me to know what was happening, and to be involved in her treatment more actively. Your son is lucky to have such an amazing mother, and I wish you all the best.

Posted by: canary30 | April 29, 2008 9:24 AM

I lost a grandmother to breast cancer, before I ever got a chance to meet her (my mother was only 16 at the time). My mother is a survivor, so I can sort of relate to what your daughters may be going through. I echo what many others here have said. My thoughts and prayers are with you.

Posted by: RiverCityRoller | April 29, 2008 9:25 AM

So, to turn the attention to the next generation, how does someone in his or her 20s maintain balance when his or her mom or dad are seriously ill, and live elsewhere?

Posted by: | April 29, 2008 9:21 AM

You can't, really. I was an 18 year old freshman in college when my Mom was diagnosed with breast cancer. She was in DC and I was in New England. I was 25 when my Dad was diagnosed with skin cancer last year. He was in New England and I am in DC. He called me at work to tell me, and after I got off the phone (crying, obviously), I immediately looked up my company policy on using sick leave to care for family/FMLA, etc. I was prepared to do what I had to to care for my Dad, even from a distance. Luckily, I didn't have to do a thing. It is very difficult to be a young adult and be away from a sick parent. Thankfully, both my parents are doing well today, but I worry about them constantly.

Posted by: BL | April 29, 2008 9:28 AM

20s - how about 40s? Within 13 months' time, my husband and I both lost our mothers (mine to breast cancer at age 71, his to ovarian cancer at age 68). Not to mention his paternal grandmother (at a ripe old age).

Through it all, we managed somehow to maintain the balance and our sanity. (I'm not sure how; we just did.) And our jobs - and he is clergy. It was interesting to see how he, who has to "be there" for so many people on a regular basis, was also able to "be there" for his mom.

His parents were divorced, and his brother was no help at all, so 90% of the burden fell on him. Since she lived in NY, he was up and down I-95 on a regular basis.

My situation was different. As my parents lived (my dad still does) in Fla, mostly all I could do was "be there" by phone. It was very difficult - and I missed being there at the end. I still feel badly about that.

Best of luck to you and your family - I wish you a "refuah shelaima" (Hebrew for complete recovery).

Posted by: just me | April 29, 2008 9:30 AM

"...how does someone in his or her 20s maintain balance when his or her mom or dad are seriously ill, and live elsewhere?"

As BL points out, it is very difficult for the offspring not living at home.

Our older daughter took a LOA and was home with us the week before last. AF dau came home yesterday for a week.

Our older son was home over Easter.

But all three of them have jobs that keep them away. Part of life in this modern world!


Posted by: Fred | April 29, 2008 9:35 AM

Hi canary! :)

in answer to the question about how people in their 20s living far away deal with their parents being sick--both canary & I can speak to that some. I was at college when our mother was sick, and in retrospect I dealt with it horribly (long depression following) because my mother kept everything secret--I had no idea how sick she was. So from my experience, open communication between all parties is hugely important.

Since then, my sister and I have become very close with someone who has become a surrogate mother to us, who has been ill with multiple myeloma for 15 years and almost died last year. I live close to her and canary doesn't. It's definitely been easier for me because I am close, but the thing that has made it the easiest for us is that she has been absolutely open with us about every phase of her disease, to the extent we have wanted to know, and has allowed us to help her and be there for her. So I would just advocate for as much communication and honesty and openness as you are able to handle.

Posted by: tsp 2007 | April 29, 2008 9:40 AM

I hope everything goes well for you!

Breast cancer is very treatable. One of the good things is that if your cancer has the right qualities you can take hormonal drugs afterwards to ward off re-occurrences.

One of the bad things is that you take them for 5 years, so there is a daily reminder of what has befallen you.

I think it's important to not let cancer take over your life. Treatments, side effects, fears -- all these things can move in with you and take over.

It fades as time goes by, but in the beginning it does take some adjusting to not let yourself be defined by the disease.

Posted by: RoseG | April 29, 2008 9:43 AM

Frieda: I wrote a guest blog for On Balance late last year about breast cancer and balance, so I know what you are going through. I'm now finished: surgery, chemo, surgery in the past 6 months...just waiting for my hair to be a bit longer before I ditch the wig. It WILL pass. In a perverse way, dealing with cancer is a sort of blessing because it forces us to deal with really important issues and get clarity. It both brings us closer to others, but makes us realize that the stuff that winds other parents up, such as college admissions, just isn't that big a deal in the long run. I am actually calmer than ever before and it sounds like you too have found this peace. Don't worry about your girls. Best!

Posted by: Anonymous | April 29, 2008 9:49 AM

Too much tearing up and not enough humor today, so it is time for:

Top Ten Rejected Titles to Frieda's Guest Blog

10. Breast Cancer Limbo.

9. Hair Today, Gone Tomorrow.

8. Adriamycin is easier to spell than Doxorubicin, not!

7. Wigs are Us.

6. Take my hand; I'm a stranger in chemoland

5. Fred is a Wimp.

4. Name that Poison!

3. Alopecia is a real word!

2. Cancer? Cancer? No! I'm a Taurus.

1. Being Momma Kojak.

Posted by: Fred | April 29, 2008 9:50 AM

What a lovely post...

I concur on the open communication. Last year we lost my grandmother and I was the person who checked her into a hospital - talk about something I didn't expect to be doing in my 30s. (I figured I had at least another 10 years and that it would be a parent, not a grandparent). My grandmother had late stage colon cancer that had spread... she told no one until darn near the last minute (a week before I took her to the doctor's appointment that lead to the hospital admission). It was alot to process in the short amount of time we had with her... I wish I'd known sooner.

Posted by: Product of a Working Mother | April 29, 2008 10:02 AM

Frieda, thanks for sharing with us!

My coworker lost her battle to breast cancer last year. It was amazing to watch her battle from day to day, and tragic to lose her so young.

I'm pregnant, so the 3-day walk isn't in the cards for me this year, but I'm really looking forward to doing it in the future.

Posted by: newslinks | April 29, 2008 10:13 AM

Thank you for the Top 10 List - I suspect lots of us needed a good laugh! My mom would have loved it. She used to say that she'd let the doctors fight her cancer with meds, but she planned on fighting it with humor. She had a wig for every holiday - the kelly green bob for St. Patrick's day was always my favorite, although the 7/4 red, white and blue punk rocker wig was also a knock out. Thanks for sharing your story - warm wishes to you both.

Posted by: two terrific boys | April 29, 2008 10:20 AM

Fred and Frieda, you're in our thoughts and prayers.

Since I can't think of anything else particularly useful to say, I'll add to Fred's list:

11. How to fool around with a blond, a brunette and a redhead without cheating on your spouse.

12. From playing Anna to playing the King

...
Nah, I got nothing. Except the prayers.

Posted by: ArmyBrat | April 29, 2008 10:23 AM

Frieda, I feel I've gotten to know you and your family over the past year or so. It's been an honor and a blessing.

One question though, if I may? I've always heard and prescribe to the notion that laughter is the best medicine. But how in the world, on God's green planet, do you handle Fred's sense of humor???

Wishing you a long, happy and peaceful life for you and your family. :-)

Posted by: DandyLion | April 29, 2008 10:26 AM

I will add my name to the list of well-wishers. And to the shorter list of those who call Fred a wimp for not giving shots. A big YAY to son! You are all in my thoughts and prayers.

Posted by: KLB SS MD | April 29, 2008 10:31 AM

ArmyBrat - I think you just upped the ante on top 10 posts.... playing Anna to playing king (or Queen). I just love it.

Posted by: dotted | April 29, 2008 10:32 AM

Frieda, thank you for posting. My family also has cancer running in it, I lost one grandmother to breast cancer and the other to lung cancer. Both of them taught me the true meaning of courage and family. Cancer is a difficult road, but it makes all the difference in the world to have the support from family and friends. I am also sending good thoughts and my best wishes for a swift recovery.

Posted by: Sitka | April 29, 2008 10:35 AM

Frieda,
When you're able, come to the Race for the Cure. You don't even have to do the walk. The 'Parade of Pink' that happens before the walk is an amazing experience - being with all those who have come before you and are thriving!

Best wishes from an almost 5 year survivor.

Posted by: Rockville | April 29, 2008 10:50 AM

Fred and Frieda, you are in my thoughts and prayers. On the topic of being a child living away from home when a parent is battling cancer, I agree communication is key. It was so much easier to deal with things when I got a daily status update. I would tell parents that withholding the really bad news in order to protect your kids is not a good idea - trust your kids to handle it, and work through it together. Laughter really does help too. My mom spent a lot of time in the hospital and said some pretty crazy things when she was on certain meds, and laughing about them and the whole experience helped so much.

In hindsight, I know my family is a lot stronger because of what we went through. We'll be able to handle anything that comes together, and we're ready when (if) my mom's cancer comes back.

For the person with a surrogate mom battling multiple myeloma, hang in there. Contrary to all the dooms day internet sites say, there is hope. My mom was diagnosed and given two months to live 9 years ago, and she's still here and has been cancer free for over 6 years.

Posted by: Thinking good thoughts for you | April 29, 2008 10:55 AM

Thank you Fred and Frieda for sharing. I can add to being a twentysomething with a parent's illness. My mother has had back problems for a while and spent a year in bed. She had laproscopic surgery to repair a disk but it didn't work. She then had a full surgery on her birthday and three days later her own mother died from a cancer she was diagnosed with only 2 1/2 weeks before. I was living in France and couldn't come home either for my mom or grandmother. I felt like such a terrible daughter and called her and couldn't imagine dealing with the pain of surgery and a parent's death. She is better now but as they are in Florida and I am in DC I still couldn't go home quickly if something happened. It is hard to get over those feelings of being a "bad daughter" but I am working on it!

Posted by: FloridaChick | April 29, 2008 11:24 AM

Hope all goes well, Freida and Fred. Will be thinking of you while on the two day Avon Walk this weekend!!

Posted by: Missicat | April 29, 2008 11:27 AM

Frieda~

My husband is a cancer survivor, so I am sympathetic to your struggles. He is now 8 years cancer free (yeah!), but it seems like only yesterday that I was giving him his shots.

He couldn't work either, but heard all sorts of stories of people who could while they underwent chemo. I say good for them, but if you can't you should take the rest you need to heal.

We also worry about the "cancer legacy" we are passing on to our children, since cancer runs in my husband's family. His father and aunt both died of cancer, and our nephew had cancer at 2 years old. (He's now 16 and an amazing boy.)

We have a two year old son, and a 7 week old daughter. I wonder sometimes if we've doomed them to a future cancer diagnosis. I can't worry about it too much or it will make me crazy, so I live in a state of denial most of the time.

Thank you for sharing your story, and hang in there! And much love to you and Fred.

Posted by: San Diego Mama | April 29, 2008 12:00 PM

Ditto to everything said by previous posters. Best of luck and hang in there!

Posted by: kbj | April 29, 2008 12:12 PM

Frieda, thank you for sharing your insight and wisdom with us yet again! I am keeping you and Fred and your children in our thoughts!

Posted by: LizaBean | April 29, 2008 12:25 PM

Frieda and Fred - Ditto pretty much everything that's already been said.

The top 10 (12) list is hilarious. I am sure the humor helps in getting through these days of chemo, and eventually the rads.

San Diego Mama - newer technology, therapies, and medications are being worked on everyday, and each succeeding generation has a much better chance of beating "terminal" illnesses than the last generation. Hold your children up to the light and cross the bridge of doom IF you get to it.

Posted by: Pake Mommy | April 29, 2008 12:28 PM

Fred, Frieda -- yeah, what they said.

AB -- most excellent supplement to Fred's always-worthy lists.

Posted by: Laura | April 29, 2008 12:36 PM

AB,

From Anne to the King...

Funny, wish I had thought of that one!

Dandylion,

Living with me is like a Mel Brooks movie. If you don't like that joke, hey, another will be coming in a minute or so!

Posted by: Fred | April 29, 2008 12:37 PM

The "Momma Kojak" moniker keeps cracking me up. Shows how humor can really help you get through a tough spot. Fred and Frieda, you two are one of a kind!

I love Winston Churchill's saying on the matter:

"When you are going through hell, keep going."

Posted by: Leslie | April 29, 2008 12:48 PM

I definitely echo the comments about sharing the information with the family and not keeping things secret. My parents did that all the time. There was the time that my dad had a seizure and they didn't tell my sister cause she had finals at school - so she found out by someone blurting it out after a few minutes home.

I had no idea what the doctors had said to my mom, and she kept acting like it was no big deal, and I was young, and my sisters and I were shocked when she passed away. I guess she didn't want to worry us or whatever, but we were adults and she should have had the confidence in us to know that we could handle it. I was in grad school with the diagnosis, then moved here, but all along, she kept not making a big deal of it - so I didn't really think much about it. Perhaps I would have done different things (although, I did travel to see the fam monthly at some points).

Posted by: atlmom | April 29, 2008 12:58 PM

Well, I just spent 10 minutes on the phone with Ms. Luddite helping her turn on the computer, open a browser, going to the Washpo homepage, finding the "Columns & Blogs" section, finding OB and then opening up your kind comments.

Since AF dau is home, she may even attempt posting a comment (almost) by herself!

Posted by: Fred | April 29, 2008 1:00 PM

Frieda and Fred - you are in my thoughts and prayers. I'm an off and on lurker here, but I have always enjoyed reading your posts and hearing about your family.

My mom just finished chemo for lymphoma, so I guess I'm a (late) 20-something dealing with a sick parent from afar. It just plain sucks. For the first few months, right before her diagnosis and thereafter, I just plain cried every day in the car on the way home. The people who remembered (and still remember) to ask about her on a regular basis really helped. I can't exactly explain how, but they did.

I wish I could pass along a happy end to this story, but we just don't know yet. They are, apparently, unable to tell from a scan which parts are remaining cancer and which parts are scar tissue/inflammation. Her oncologist has started making noises about a bone marrow transplant and more chemo, but she doesn't want any more chemo. It's more heartbreaking than I can describe to hear your parent say they don't want to do any more treatments, even if this one didn't work. All I can do is hope.

And Fred - your list of rejected column names is missing a great one - Thanks for the Mammaries!

Posted by: law_bela | April 29, 2008 1:13 PM

Thank you for sharing. All I can say is to urge you and your children to get tested for the BRAC gene mutation. There are things you can do prevention wise to spare your daughters this fate. In fact, your son may be a carrier as well. this runs in my family, both breast and ovarian. My sister is beinning the genetic test process now and I will follow. I am not sure what I will do with this information but I need to know. Knowing this enables me to get siginficantly more aggressive screening from my insurance. Just finsihed the the book "Pretty is what changes" and was blown away. I highly recommend it anyone family struggling with ovarian and breast cancer, especially in young women. Good luck to you!

Posted by: Get Tested! | April 29, 2008 1:17 PM

Best wishes to you and your family. An inspirational story. My father is a vocal cord cancer survivor. He had said after his diagnosis that he didn't care if he lost his voice, as long as he survived. Well, both have happened. He lives in NC, and my sister and I traded visits with him to help him through the surgery. He has a very good, strong will to live and is independent today. The will to fight and live is probably about as effective as the medical treatment itself.

Posted by: Ree | April 29, 2008 1:17 PM

My best wishes to you Frieda!

Breast cancer doesn't run in my family, but every other cancer seems to. I've also lost several aunts-by-marriage through breast cancer, and a former housemate's mother is now eight years cancer-free.

Thoughts for the next generations...

Having lost three out of four grandparents to various cancers, the last time I checked statistics (13 years ago when Grandma died) my overall cancer risk was estimated at 50%. So, I stopped checking the statistics, and just paid attention to the risk-minimizing things I could do - healthy diet, regular exercise, the really basic stuff. After that, it's up to the universe, or God/Allah/higher power/Goddess/whatever-you-want-to-call-it.

I mostly try to live as if I'll be going like the other grandmother, getting sleepier and sleepier for 10 months after celebrating her 100th birthday with 400 or so of her closest relatives, and finally passing quietly at home with her daughters and a couple of the local grandchildren with her at the end. That will give me another 52 years to try and learn to get along with all those darned relatives.

Us next generation folks should stay focused on life in the here-and-now, I think. Worrying about the future won't change anything, and worry causes stress, and stress can increase cancer risks. To paraphrase Bobby McFarin: "Don't worry, be healthy."

Posted by: Sue | April 29, 2008 1:45 PM

Best wishes on your health and take care!

I wanted to echo others' comments about keeping health details secret from older children. When I was in first grade and my mom had breast cancer, I was terrified, and telling me everything that was going on probably would have made this worse. However, when I was studying abroad junior year of college and my parents didn't tell me how seriously my grandmother's ovarian cancer had become and how far it had spread until I had to come home early, I felt betrayed and totally caught off guard. They didn't want me to worry and they didn't want to spoil my time abroad, but it ended up making everything so much worse and harder for me. I made it back to the US in time to spend the last 5 days with my grandmother (she was so strong-willed I truly believe she waited for me), but three years later I still feel guilty that I didn't know to call her more often or send her more letters while I was away. If I'd been informed of her progress (or lack thereof) continuously I wouldn't have felt as hurt and shocked at the end.

And on the legacy of cancer...I'm 24 now, and I know someday I will get cancer because of my family history (my mother, paternal grandmother, and her twin sister all had breast cancer, and my maternal grandfather had lung cancer). But that doesn't really scare me so much as it could, because I know I will catch it early and before it has progressed too far. My mother has been in remission 17 years and counting; I only hope I can be as strong of a survivor as she is.

Posted by: annacadie | April 29, 2008 2:01 PM

Frieda and Fred: My thoughts and prayers are with you and your family as you keep on plugging along.

Esp. now that I know that Fred went to UCLA.

Posted by: kate07 | April 29, 2008 2:06 PM

My husband suggested that I go blogging today instead of shopping. So, instead of searching for ways to boost the econcomy, I found a way to boost my faith. In others.

What an inspiring gift of hope to be found on the OB battleground of despair! It is so beautiful to see the heartfelt responses to this incredible guest. The trials endured by this family and the obvious strength in their commitment is a honour to witness.

Thank you, Fred and Frieda, for opening your hearts to all. God Bless you and your family along your journey.

Posted by: spalady | April 29, 2008 2:12 PM

My grandmother got breast cancer when I was 11 and died from it. As the baby of the family, no one really told me much of anything, I just knew "cancer" was involved that it meant my mom had to take a lot of time off to take my grandmother to treatements and that meant she had to work a lot of overtime and weekends so we had to be pretty much on our own for awhile. Unfortunately, my grandmother died a year or so after the initial diagnosis.

And then my father got prostate cancer when I was 19 and chose not to get treatement and died a few months after his diagnosis. We were estranged and I chose not to see him before he died. People were worried about me regretting that, but I didn't. I made my peace over us long before that.

And then my mother got breast cancer three years ago when I was 26. It was very early and very small, but it was now my turn to be there and take her to the hospital and home and other doctors appointments. I postponed my move to Texas to make sure things were solid.

It is a regular worry of mine over what I should do if something serious happens again- and I'm here and she's there.

Does anyone NOT get cancer anymore?

Posted by: Liz D | April 29, 2008 2:14 PM

Frieda, thank you so much for your guest column today--it is wonderful to hear from you and to know that you are definitely on the up-swing, both physically and emotionally. We have been praying for you and Fred and we will continue to do so.

Fred, you are a riot--your list is really funny, and AB's additions are a scream, along with the one from law_bela [although I might change that one to "Tanks for the Mammaries" >:)] I particularly like number 6--I picture you holding Frieda's hands in yours as you stand on a tropical beach at sunset.....

Posted by: Lynne | April 29, 2008 2:18 PM

Get Tested and others,

I have a lot more to say on the testing and other comments. (Leslie cut over 400 words from the blog!) But right now, the Creepy Van is broken and I need it to get home.

If you want to check back later today or tomorrow, I will post some more serious stuff about cancer. We also may get a posting from Frieda directly!!!!

BTW, did y'all see the Songster's hilarious song about Dustbunnies late yesterday?

Posted by: Fred | April 29, 2008 3:10 PM

kate07,

You know I pray for the USC Trojans every night! To lose!

Posted by: Fred | April 29, 2008 3:12 PM

BTW, did y'all see the Songster's hilarious song about Dustbunnies late yesterday?
-------------------------------------------
I just went back and read the song and about lost it right here in cubicle land. I was a sappy teenager when that sappy song came out, and I played it over and over until I know my parents were ready to break the record (or my record player) because of the agony of hearing it incessantly. The updated version is really funny. I wish I were that clever!

Posted by: Lynne | April 29, 2008 3:28 PM

Thank you Frieda for your wonderful story.
I always think of my grandmother dying to young when I make my annual exam and then I have been good (so far) about getting an annual mamogram.

Cancer has not touched my parents or my generation yet. I just am reminded to live every day to the most full extent, hug DD and tell her I love her.

Posted by: shdd | April 29, 2008 3:37 PM

Fred,

Perhaps I'll stop praying that the Trojans win. Sounds like our respective prayers are canceling each other out!

Posted by: kate07 | April 29, 2008 5:37 PM

"All I can say is to urge you and your children to get tested for the BRAC gene mutation..." from Get Tested

From a medical standpoint, this is the only course of action to be followed. But life is just not that simple. As Frieda noted in her blog, there are complex legal and insurance issues, among others, that make this recommendation maybe not so clear cut.

From "WWW.Cancer.Gov"

"Genetic discrimination occurs when people are treated differently by their insurance company or employer because they have a gene alteration that increases their risk of a disease, such as cancer...A person with a positive result may be denied coverage for medical expenses related to their genetic condition, dropped from their current health plan, or unable to qualify for new insurance. Some insurers view the affected individual as a potential cancer patient whose medical treatment would be costly to the insurance company..."

As of today, there is no nation-wide law that prohibits discrimination in insurance or employment due to a positive result on a genetic test. Congress has been fiddle fumbling around some 13 years trying to pass a law. Finally, last week the Senate passed HR 493, `Genetic Information Nondiscrimination Act of 2008'.

The House is to consider it this week and the president has already indicated that he will sign it.

This should give us all much more comfort of mind when we are working to protect the health of our children and their children.

Posted by: Fred | April 30, 2008 8:38 AM

President George W. Bush signs H.R. 493, the Genetic Information Nondiscrimination Act of 2008, Wednesday, May 21, 2008, in the Oval Office. The Genetic Information Nondiscrimination Act would prevent health insurers from canceling, denying, refusing to renew, or changing the terms or premiums of coverage based solely on a genetic predisposition toward a specific disease. The legislation also bars employers from using individuals' genetic information when making hiring, firing, promotion, and other employment-related decisions. White House photo by Eric Draper

Posted by: Fred | May 28, 2008 10:39 AM

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