Seven Years by Mary Beth

April 29, 2013

Shortly after midnight on Saturday my daughter and her friend gave me this beautiful card case to hold my business cards.

042813-1_B

Sunday was my seven year anniversary as a Breast Cancer Survivor. On Friday, I ordered a cake for myself to celebrate this day.  I don’t really drink, I don’t do drugs and I have never smoked and I still got cancer… so yes I eat sugar.

042813-7_B

I asked my closest friend in California, (who was literally the first person to hear the news as the Doctor called me at work) to come over and celebrate with me.

The day started out a little later than I had planned, I was running late for church and the chapel that I attend is very small and difficult to sneak in late. I decided to go to the church that we belonged to when we first moved here (and during my treatment) as their mass starts 15 minutes later. This parish had been talking and planning and raising money to build a new church when we became members. I do believe things happen for a reason and as I sat in the church I became very reflective on the past 7 years. I sat in the old church and prayed to heal and survive when I was sick. Now 7 years later I sat in this new church and so thankful that I am still here.
Cancer changed my life forever, not all bad, but changed nonetheless. I am healed on the outside, but sometimes the emotional side still creeps up on me. A few months back I had a “touch-up” procedure done. Before I left work for the appointment I looked at myself in the mirror and thought outwardly, most people that I meet now, have no idea that I am a cancer survivor. My hair has grown in and they can’t tell that it is much thinner than before. My eyebrows and my eyelashes have grown back and my eyelashes hold mascara again. My scars are not visible when I am dressed. People cannot see the effects of the aromatase inhibitors. But as I lay on the table with the greatest leopard hospital gown on… the tears started streaming down my face. I was back 7 years ago as they wheeled me into the operating room to remove a part of my body. I have learned we must allow ourselves to honor these moments as part of the healing process too.

042813-4_B

Today the tears streamed down my face again, so many emotions. Happiness that I am still here, gratefulness for all of the people that supported, prayed and helped me. Sadness for many of the people that I met because of the cancer that are not here anymore. I wrote and delivered a note to another close friend at that time, who had helped me with the kids. Our lives have now taken us in different directions. I sent a thank you text to Lou for supporting me during my treatment. We were close to divorcing in 2006 and then I was diagnosed. We decided to stay together. We tried for another 5 years, but it just was not meant to be.
After honoring those few moments of tears and emotions I was off to enjoy my day. I walked my favorite island and visited my friend who is still recovering from a freak illness. He congratulated me and then asked “did you think you would be sitting here 7 years later?” “Honestly, I was not sure, but my Doctors were.” was my response. They told me it would be 12-18 months of hell and then I would have a greater risk driving on the freeways.

042813-6_B

I treated myself to one of my favorite childhood candies while relaxing for a pedicure.

042813-3_B

My friend and her daughter came over and we celebrated our friendship… and the girls ate CAKE!

042813-2_B

The only part missing in the day was seeing my Dante. This was his weekend with his Dad and his future Step-Mother. Other than that…
I am a survivor.
I am alive.
I have so many amazing people in my life that care about me.
It was a great day.

cross-posted at marybethvolpini


Healing so far so good (by Lyn)

November 22, 2011

I know I am not much of a blogger these days.  I even took my personal blog down while I work on a different one, but I am not finding the desire to work on it.  I kind of put myself out there to the world, cancer and personal warts and all, and am going through a phase of privacy.  I still want to share and support others, but I find that I have this deep need to be ‘normal’ for a short while.  I’ve been focusing on things like playdates and moms nights out, and going back to school for a different degree, etc.  I felt guilty for not keeping up with my cancer pals like I should, and then I remembered that no matter what, I will always belong to this community.  If we all lived in the same neighborhood, I guess my role would just change from a weekly meeting to dropping off food a couple times a month.

For an update, I’m 2.5 years out from my IBC diagnosis.  I had a double latissimus breast reconstruction in July and I had my last expansion last Monday.  The next step is healing and letting the radiated skin continue to change and heal, then we will do a fat injection.  Though I’m not a fan of surgery by now, I’m kind of looking forward to the removal of fat from my stomach and putting it in my boob.  Then it will be another 6 months after that I hear, when we will attempt the implant exchange.  I’m fine with taking the time to make sure it’s done as best as it can be.  I can see the visual changes in the tissue on my left side change weekly, and hopefully by the time the implants are in it will be supple enough to pass for a breast.  The good news is that I’m no longer calling it a ‘frankenboob’ which my plastic surgeon appreciates.  I’m taking pictures along the way and will publish a photo show at the end of it all.

My oncologist left the practice a while ago, and I finally met with a new one last week.  We’ll see how it goes, I know I don’t have to explain to you all how it is meeting a new doctor unfamiliar with you much less wondering if they are familiar with your disease.  Other than that, I’m good.  I find myself relieved the older my children get, my 6 year old son is in first grade and my daughter will be 5 on Valentines day.  Now that there is a small hope they will remember me if I die tomorrow, I relax a little.  Anyone play bunco?  I played that for the first time last month and it was fun!  See, that’s the type of thinking my brain goes to these days, I think I am serioused out.  the death of my mom from cancer followed by my own diagnosis a year later at age 30 followed by my marriage falling apart, I think I’m done.  I want to spout something wise, but I end up thinking ‘hey let’s make cookies and watch a good movie’ instead lol.  It’s a phase I know, but as someone who’s gone through a LOT of phases, I can’t say it’s any better or worse than a cancer focused one, it’s just different.  I wish you all lived closer so we could have a huge cancer warriors only bunco night complete with cookie exchange!  Then I could combine it all and feel somewhat normal again:)


Featured Charity: My Hope Chest (by Judy)

October 9, 2011

I recently had the honor of meeting the founder of My Hope Chest which is located in Seminole, FL. Alisa Savoretti, former Las Vegas showgirl, founded My Hope Chest to provide funding for breast cancer survivors who are uninsured, underinsured, or have somehow fallen through the cracks of a system that’s supposed to provide reconstruction if a woman has had a mastectomy.

Alisa was faced with this very dilemma herself in the Fall of 2003 when she had no insurance, had to have a mastectomy, and then was unable to take, as she says:

the final step in breast cancer treatment – restoring body, mind and spirit.

As someone who herself had a mastectomy and then, surprisingly, felt unwhole and ugly without one of my breasts, I underwent three surgeries and several procedures to reconstruct my left breast. I was still left with $4,000.00 that my husband and I have to pay to the hospital out-of-pocket. I appreciate what Alisa and her board do.

Alisa told me that everyone who works with My Hope Chest is a volunteer and the funds go to providing surgeries for women in need. She also told me that this calendar year, they were able to provide surgeries for six women. Remarkable for a small, grassroots organization!

Bravo, Alisa! While I know that reconstruction isn’t for everyone, I believe that women who want their breast(s) reconstucted should have that opportunity.

____________________________________________

Cross-posted to Just Enjoy Him.


Hmm…. a rambling update of sorts (by Lyn)

August 20, 2011

I just want to first comment on the recent posts from these lovely ladies.  I can relate on so many levels to it all though I am in a different phase currently.  There was a time when I was first diagnosed with IBC that I wanted to talk about death, all I could think about was life in a spiritual fashion because I didn’t know if I would beat it.  My mother had just passed away a year before from cancer and I watched the last breath leave her body, so the heavy thoughts of the seriousness of IBC weighed heavily on my heart.  Then I remembered HOPE, and my fighting spirit kicked in and I focused on beating it.  Not necessarily on living a well rounded life at the time, I was too scared for that I think, but I did have hope and I did feel like a warrior.  A lone warrior LOL.  My life quickly changed from average life working full-time with a 2 year old and 3 year old happily married to unemployed, very sick, and noone around me understood.  The people that were supposed to ‘get it’ turned into confused weak aliens and my new support system was a world of women online that I had no idea even existed and most of whom I still haven’t met in person.

I actually had to shut out family members who weren’t positive.  I simply said, if you can’t support me as much as some stranger I’ve never met, don’t talk to me at all.  Fear is a powerful thing, and when I’m scared I am sort of like a feral cat backed into a corner and if you’re not a friend you were an enemy.  Right?  No.  Necessary?  Possibly.  There’s a lot that I look back on and regret from the first year of my cancer diagnosis, but I have to be very gentle with myself because my support system wasn’t good.  We had no guideline or role model to show us what to do, how to help each other.  The growth I’ve experienced is that it isn’t their fault.  It wasn’t their fault.  The desire to support me was there, but it wasn’t coming in the way that I wanted or needed so I couldn’t see it.  Now that time has passed I have since found understanding and reconnected with said family members who were more than happy to come help me at my recent surgery.  I vowed this time, to recognize the intent behind people’s actions and go off of that.  I’ve learned to have understanding for others looking in at me from the outside.  I probably scare the shit out of them.  A 30 year old with 2 small kids going through everything we warriors do, and doing it independently and fiercely.  Yes, I’m sure looking back they saw me as pushing them away and their own fear stopped them from meeting me where I was, and my own desire for survival on my terms stopped me from including them in my battle.

Needless to say I have learned a lot about myself and about others since my diagnosis.  Life, the meaning of life, the ‘right’ way of life is something I think about all the time.  I have yet to find a place where I am comfortable just being.  It seems like I keep pushing through pain to find the space where there is no more pain and it won’t come.  Sometimes I ask myself why me, why now, why not.  Lately I’ve been looking to the future a lot, praying a lot, begging the universe for some release.  Then I remember that I have the power to focus on hope, healing, and happiness.

I’m not talking about my cancer with the last paragraph.  I haven’t said as much on my blog, but I found out that my husband- who I truly love with all my heart well before cancer- was cheating on me when I was battling for my life.  I found out this year, and it’s been like getting a cancer diagnosis all over again.  Actually I would prefer chemo some days.  So while at first I shut him out, I’ve been allowing him to talk to me and to listen and then I talk.  It just feels like pain.  Healing, sure.  Cleansing, sure.  But pain, more unnecessary pain that I don’t think I deserve and that makes me angry, which makes me frustrated, which makes me sad because I can’t control it.  More and more I learn about myself and at the same time about others’ limitations.  He has stepped up to the plate at taking my punishiment and wrath and making it right but will it ever be enough?  I don’t know.  I can’t say, I can’t control how I feel.  I would give anything to be nonchalant and flippant and not care.  I would trade anything for that.  But I’m stuck here in the pit of I give a shit and also, responsible for what happens next.  Do I want to risk getting IBC again and not have him in my life- this man who I love and is remorseful- or is it – do I want to risk getting IBC again and be still married to a man who betrayed me when I needed him the most.  Or is it, do I take yet another leap of faith and trust (but verify!) that this person has grown himself, found his own love, and will never hurt me again and jump in with the hope that IBC will not come knocking on my door again but if it does my marriage will not be an issue of it.

I don’t know.  It’s too much, it’s overwhelming.  The gift and the curse of cancer is that we know how precious life is.  How much time can I waste on anger or hurt- even when it hurts so much all the time?  That becomes the question.  I imagine that if I was a normal 32 year old without cancer or parents gone, and everything was fine I would walk away with my head high and my hair flapping in the wind giving him the middle finger for not seeing how awesome I am, not caring what he might have been going through or what led to it.  But now… now I know unfortunately that life is bigger than me.  It’s not all about me, even when it should be.  Ah well… that’s my rant.

Physical update, I had a double latissimus breast reconstruction 4 weeks ago.  Last weekend I ended up with a bacterial infection and almost got admitted again.  Every day this week I have had to go into the plastic surgeon’s to have my back drain tube wound opened and drained and packed because it was fluid that collected there that caused it.

My left cancer side ‘frankenboob’ is not doing well.  It’s failing and the surgeon says we have to do another surgery in a few weeks when I’m better this time taking fat and skin from my stomach.  Hopefully it goes better this round.

I am NED still according to the pathology reports from the samples the surgeon sent when he did the reconstruction.  So I have that to be thankful for, and I am.  It is possibly one of the main things that keeps all the pain balanced, the physical pain and the emotional pain… that no matter what I’m still for now NED and still have a chance to see my kids grow up.  Anyone else sometimes feel like, is this really my life?  I know I do, but thanks to cancer, I’m thankful for most of it and the parts I don’t like I have hope I’ll figure that out in time.


It Can Happen to You

February 8, 2011

My dog Sophie sat under the kitchen table for years, with great, unflagging optimism. I would marvel at her evergreen hopefulness, as she would lie belly-down on the hardwood floor, looking up with patient brown eyes at the underside of the table on which that night’s dinner lay. Years of evidence to the contrary, she would wait perfectly still for that magical moment when the pork chops would levitate from the table, hang in the air for a few seconds, then drop to the floor with a juicy thud. Sophie’s eyes said it all: “It could happen.”

Then one day, it did happen.

My mom had come to San Francisco and wanted to go shopping at Union Square. She put a pot roast in the oven, turned the heat to low, and said it would be fine for a couple hours. Long story short, we spent more time than planned downtown. When we got back to my flat on Cesar Chavez street, I ran up the stairs to try on my new shoes while Mom ran up to check on her pot roast, which by now had been roasting for six hours.

“I think it’ll be ok,” she said, placing her smoking, ruined dinner on the table. Sophie took her position underneath and waited.

As Mom muscled through the hard crust of what now looked like a hockey puck, the entire “roast” flew off the serving platter. Sophie sprang. In what seemed like a slow motion slam dunk, she caught the “roast” in her jaws before it even hit the floor.

Victory comes to dogs who wait. Not often, but it is a possibility.

Which, finally, leads me to a point. And that point is that you can go through a mastectomy, chemotherapy, radiation and reconstruction and still find love. I know because it happened to me.

I had a very supportive boyfriend through it all. He waited for two years for the glorious outcome of my reconstruction. But unlike Sophie’s prize pot roast, the outcome wasn’t so good, so he split. “What a dog,” my friends exclaimed. Not so. I got a lot out of that relationship, and it slowly and painfully led me to my current one.

I won’t detail all the bad Match.com dates that came between the two. That’s for another post. What I will detail is that during that time I waited with great hope and optimism for that one man who would see beyond my physical and emotional scars and see something else. Fear, sometimes. Resilience, maybe. Unflagging optimism, for sure.

That relentless optimism and a wholesome faith in my God, led me to my man. A list of adjectives cannot begin to describe his goodness, but I can’t resist: Bighearted, honest, compassionate, generous, patient, understanding, forgiving, funny, uncomplicated, complicated, deep, basic, true. We got engaged in Kauai on January 12. He just wags my tail.

For all you girls out there wondering how you’re gonna find love after cancer, remember this: It does happen. And it can happen to you.


A milestone by Lyn

July 9, 2010

Well  I made it.  I finished my year of Herceptin last week.  I knew the day would come, but I almost can’t believe it.  I see my oncologist again in 3 months, and I admit I am looking forward to the break.  Even better, I am getting my port out in 2 weeks.  I can’t wait for that either.  As for what is next, they tell me I am cancer free, but you all know how that goes, and how fearful it is to worry about a recurrance.  But I am going to be positive, and try to be a bit more spontaneous in the coming year.  I have been tied down to doctor appointments and check ups and physical therapy and recovering, that it is all I have been able to think about, but now I am going to attempt thinking past IBC and the possible recurrance. 

Another big decision, dh and I decided recently to put my reconstruction on hold until my daughter is in kindergarten.  She is 3, so about 2 years.  My skin is so damaged from twice a day radiation that implants are not an option at this time anyway, so the only way to be reconstructed is with the TRAM or DIEP and that is such a huge surgery and recovery.  It’s not sensible with 2 very young children and noone to help out while I am recovering.  Part of me is nervous about the decision, but even more I am relieved because I don’t think I am up for such a large surgery so soon after the last one. 

If you are Her-2 positive, ask your doctors about joining the Neratinib Trial.  It was presented to me, and I have decided not to do it.  But I think it will be very beneficial and help us combat cancer.  My decision was a personal one, but I fully support the trial and believe it will help extend our lives even further.


Clergygirl Itches, Fights Temporary Insanity

December 14, 2009

Thanks all who were praying today. I’m doing well. Digger indentation is gone and overall I can see a positive difference. The only hang-up I’ve had is itching. Once again I had an allergic reaction to the anesthesia and as I came out of my groggy slumber it became uncontrollable. The nurse and doctor tried to do as much as they could and were very patient and good to me. I don’t know if you’ve ever experienced itching to that extent….all over your body…but let me tell you….the word insanity comes to mind. I become a very different person….a crazed person. I told Jeremy….when it is at it’s worst….I feel like yelling like a crazy lady and grabbing my nurse and begging her to help me. It really is not fun. It has now happened to me three times. After my mastectomies, then reconstruction, and now today. This time it came on quicker and was probably the worst I’ve experienced. I wanted to rip the bandages off and itch everywhere like crazy. I would have invited anyone in the area to itch with me…..lol. What a funny picture that would be.  Everyone picking a spot and itching. But it would be downright gross. But Jeremy will scratch for me. What a good hubby he is! So the Benadryl only helped slightly so they got some hydrocortisone cream and we caked it all over. Finally, some relief. They decided then that I should stay the night. Much of the itching is gone thankfully. I’m on some sort of prescription and we rotate the prescription meds with the Benadryl every few hours and it keeps the itching under control, so now I can rest some.

On a good note. Before I went in to surgery Dr. D used his marker to plan out his strategy. On the sides where it pooches a bit under my armpit he suggested lipo’ing the area and asked if it was ok. Is it ok?  Is it ok?  He could do lipo on me anytime, anywhere! I would never not say yes to lipo anywhere but my breasts….lol! So he lipo’d my back fat and the sides of my hips a bit and after a tough cancer journey he gives me perks like this. He is genuinely a very kind man and a great surgeon. I am so grateful to have a surgeon who I really trust and who is helping me feel better about my disfigured body.

And if I sound super chatty and happy in this post, I am….lol.  Thanks to a little magic pill called norco I am feel’in real good….lol!  I’m just hoping I don’t come back and read this and realize how loopy I was.  Because then I get embarrassed by my misspelled words and sentences that don’t make sense….lol!  I have a good excuse:)