The Battle We Didn’t Choose – My Wife’s Fight with Breast Cancer

Hi Everyone! There’s a beautiful love story between Angelo Merendino and his wife Jen. Angelo is an extremely talented photographer. He was also an incredible husband to his wife Jen who got metastatic breast cancer. He photographed her as she lived with this disease all the while loving and caring for her in such a special way. He has a web site that you will find fascinating at: http://mywifesfightwithbreastcancer.com/, where you can read and find out much more about this beautiful story as well as see some incredible photography.

Angelo Merendino’s Book is Now Available for Sale!

The Battle We Didn’t Choose – My Wife’s Fight with Breast Cancer

The Battle We Didn't Choose - my wife's fight with breast cancer

Angelo Merendino writes:

I am proud to announce that our story is now available in digital book format! Aside from taking care of Jennifer, putting this book together has been the biggest challenge of my life. More than a story about loss, this is a story about love and life. Above all else I have realized that this book is a love letter from me to Jen.

The book includes many photographs that have not been shown anywhere, as well as a Resources section, audio narrations and videos. It is available in English, Italian, Spanish, French, German and Russian. (Note that if you are hoping to view the book on an iPad, be aware that audio and visual elements will not function. I am currently waiting for approval from Apple on the full-featured, iPad-specific eBook. Please check my website again soon for details on this release.)

Fifty percent of the net profits of all book sales will be donated to The Love You Share*, a non-profit organization I am starting in honor of Jennifer. The mission of The Love You Share is to provide financial assistance to cancer patients in need while they are receiving treatment for cancer. The hope is that by sending a gift card from a local grocery delivery service and reimbursing patients for transportation costs to and from hospital and doctor appointments, The Love You Share will be able to make life easier, even if only for a short time, for someone who is fighting for her life.

Available in English, Italian, Spanish, French, German and Russian.

*The Love You Share has applied to the Internal Revenue Service for 501(c)(3) tax-exempt status.  Donations to The Love You Share are not currently tax-deductible while its application is pending. If The Love You Share receives tax-exempt status, donations received while its application was pending may be treated as tax-deductible contributions retroactive to the date of its formation.

To Buy this Great Book

clickhere

 

Survival – A Widow’s Journal

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In Survival, A Widow’s Journal, Muriel Kagan Zager describes her experiences following the loss of her husband, Victor, after 56 years of marriage. Her reactions to her new status and the unexpected reactions of others to her situation provide an insight into what new realities she faced.  She discovered that some people she thought would be there for her were not; and some she little knew became life-lines for her.

Psychologists and therapists in the field have praised the work; many feeling that it should be used as a text for students learning about mourning. Widows and others going through the loss of a loved one have been helped through Muriel Kagan Zager’s journey.

I am so proud of my mother who wrote Survival, A Widow’s Journal. She is a journalist who specializes as a correspondent in the Middle East and an accomplished author. She has published four novels and she just published her fifth book call Survival – A Widow’s Journal. The book is based on a true story about my father who died of pancreatic cancer on June 6, 2008. I think that anyone who has lost a loved one to cancer or any other reason will really be helped by her book. Many of you will also will enjoy reading it because  she tells her story with wonderful grace. She’s a fantastic writer.

My mom let my sister and I read it before it was published and I also have read different parts of it again throughout this week. The book just came out a week ago. I want to tell you a little about my father, Victor, and his experience with cancer. He had kidney cancer aka renal cell cancer 15 years before he died of pancreatic cancer. The kidney cancer was caught early enough and they were able to take the damaged kidney from the cancer out surgically, and he required no further treatment besides the usual follow ups.

In early 2008 he was more tired than usual and his regular MD thought he had sinus infections and kept giving him antibiotics. He traveled with my mom for business and pleasure all over the world. Ten days before his diagnosis he felt horrible and his stomach got very bloated. He spent Memorial Day weekend at home in terrible pain and would not let my mom take him to the hospital. He didn’t want to bother his MD.

Finally when the holiday was over he had an MRI and it was discovered that he had metastatic cancer all over his body. If you read my mom’s book there is much more detail about what happened. We managed to get him on a medical plane to Nashville where most of the family including his grandchildren were able to see him at the hospital the last five days of his life. We later determined that he had pancreatic cancer.

I was happy that my dad lived out his last six months not knowing how sick he was and able to just enjoy his life. We had wonderful moments during his life as well as while he was in the hospital.

My father was an amazing man.  I am so grateful for the time I had with him and I am so lucky that I have grown up with such special parents and siblings, and my mom continues to bring me joy every day!

I urge all of you to check out my moms book. Below is a great review written by someone very special to my mom and me.

“What does it take to face the death of your husband of 50 years?  Can you be strong enough to survive and re-enter the world?  Muriel Kagan Zager has written the most honest and passionate love story in “SURVIVAL, A Widow’s Journal.”  As you hear the pulse of Muriel’s heart in every honest sentence, you will also feel the agony, the loneliness and the finality of the death of Victor, her spouse.  There is no smoothing over the misery, the heartbreak and the predestination of “who will live and who will die,” and when.  There are many books written about the wonder of life, but this is a passionate story about love, loneliness and survival.  “SURVIVAL” is worth reading for anyone who has faced a future of uncertainty.”

To Order the book and peak inside click here to go to amazon.com.

Happy New Year – Flying Home

I am sitting on a plane with wifi and reading other breast cancer blogs which I did during a wonderful holiday with my family. They have me thinking a lot. My need to write today has to do with the fact that as I take this flight home I am flooded with memories and feelings of my past flights going back to California when I was living closer to my family on the southeast coast. I flew many times on this flight to California running to my friends especially my very close friend Li who went through chemo with me and had stage IV MBC , while on the east coast my brother was going through stage IV esophageal cancer. His health climbed faster downhill then my friend because of the stage at which he discovered his cancer.

I have been so happy working away at being a patient advocate and doing everything I can to make a difference and I am reading different things and all I can say is this may sound crazy but for me it was so much easier being the patient in jeopardy going through my primary chemo at an earlier stage than having to watch my brother and best friend go down their line of chemo drugs and disease progression. I ask myself over and over why it wasn’t me and why it was them as I stood by and they let me in fearlessly clinging to the joy they could find in life and wanting to have as much quality of time in life with them.

After I had breast cancer twice in California I decided to move closer to be with my family, because I just was drained from all the constant treatment and I missed my family. Little did I know seven months later my father would find out that he had pancreatic cancer and luckily I had moved close to the family and was able to be with him, since he died 10 days from finding out his diagnosis. I think in some ways he was better off not knowing that he was so sick until the end.

Being with my brother and my best friend as they went down their line of drugs was just as special, yet at the same time I have so much guilt that it wasn’t me. I luckily rented a room in California so I could fly back and forth and keep my medical Doctors in California.

gene-technology-7830After my brother died I moved back to California as everything shifted and luckily I had been at the right place …at the right time…while my friend got close to the end. I am on another flight knowing this cycle will not stop. A very close friend has Stage III – IV lung cancer and is such an inspiration. I have a few more friends who are going through Stage IV breast cancer. I have stepped in cancerland and there is no turning back. I am not Stage IV and for that I should be grateful and (don’t get me wrong) I am but it’s hitting me as I return to my home. I am saddened by the sheer loss of things around me.

At the same time, I refuse to keep complaining and continue forward with all of my advocacy work to make a difference…It’s just that I am in a moment where I feel like that rat on the ferris wheel as more people get bad news. Yet my father, my brother and my best friend all gracefully lived in the moment as much as they could to hold on to joyous days of life while they knew they were going to be taken away from their disease. I asked my brother if he was scared and he said he wasn’t….Life…death…he just accepted to his fate and made the most of what he had. I asked my best friend and she said she wasn’t scared either. To her she was looking forward to seeing people when she died.

With these things happening around me I can’t help asking myself why them? At the same time I refuse to push myself in to the dreaded corner of anger and resentment at fate and get a grip knowing I must be smart enough to make the most of whatever time I have. In the back of my mind one of the bloggers was angry because they are stage IV and they were sick of hearing they should live in the moment. I think the reason she was angry is the word “SHOULD”. Instead we all COULD try to live in the moment.  If we don’t and we can’t make the most of out time while we are here, then why bother fighting to live. This is it. Take it or leave it. I have to try to make the most of my moments no matter how little control I have over what Stage of disease or peril I or my closest friends are in. At the same time, I am not trying to pat myself on the back as much as be grateful I have the ability to make a difference and while I believe I have NED (no evidence of disease) make the best of it. My father made the best of his life and had no idea how sick he was. I think he was better off not knowing until the end.

It’s not the analogy of “I could get hit by a bus” at any time before my friends who are in Stage IV cancerland know the bus is coming as much as why waste time getting so upset that I bring a harsher depression on myself as I have enough of that from all the hormones that have been stripped from me to theoretically keep me NED. The truth of the matter is I can wallow in anger and resentment or forge ahead with optimism and lack of fear for what is happening inside my body and live my best life. That is truly the only way I can make sense of all that is surrounding me.

Honestly I am proud of how I talked myself out of wallowing in self pity as I return to California after a wonderful holiday with my family. I am also thrilled that I have this wonderful machine and social media to help make the most of this flight as I plan to return to all the enormous tasks I have facing me and get back to my routine while I know there is so much work ahead of me to make a difference in Breast Cancer Land. And whether you are healthy, having health issues, in cancerland, affected by cancerland or just reading this because you care about me and what I have to say…thank you for letting me use this platform to express what is happening around me.

Meanwhile it’s a new year. Make the most of it, love yourself and try to enjoy everything around you no matter where your body or mind is at. This also includes what your loved ones are going through. That is the only way all of us can live our best lives and appreciate so much of what we have.

Celebrating the Extra Ordinary: The Good and the Bad

I took this video of Shelby to continue to show the joy she brings me.  I was going to post it yesterday when I discovered she had ear infections in both ears even though she had just been to the vet a few days before.

The right ear is also deeply infected and requires ear drops that she does not like when I put them in. They are analyzing the problem from sections of the infections.  She is home with me resting now.

They shaved her hair off of her ear while she was sedated, and her vet said that the hair will grow back and cover the missing part of her ear. I also took the photo of her resting on the bed with her bandage on.

I am sad for Shelby and I keep thinking how upset Li would be. At least I am comforted knowing Li would not blame me for what happened to Shelby. My friend was so great about unconditionally excepting who I am. That is what true friendship and having a great family is. I am lucky i have friends and family that I love unconditionally and that unconditionally love me.

Shelby is so pretty when she sleeps. She is quiet and peaceful and she has been such a trooper through all of this. For this I am so grateful. Shelby sleeps with optimism and brings light in to my world.

Thanks again to Marie’s award-winning blog  Journeying Beyond Breast Cancer “Celebrating the Ordinary” challenge was really inspiring and I thoroughly enjoyed so many other blogs out there that participated.

My Fearless Friend Li Bailey

I first met Li in February 2005 at a conference table with a great breast cancer support group. The group was for early stage breast cancer and everyone in the group that day were all in the middle of chemotherapy while I was about to start my first round of adriamiacin and cytoxin. I had to do chemo because they found the cancer in my first lymph node. I had no problem undergoing a surgical lumpectomy, sentinel node biopsy, or axillary dissection, but when I heard I needed to do chemotherapy and I would lose my hair, I knew I needed some help.

It was ironic that in November my hair stylist of several years chopped my hair very short when I asked her for a little trim. I was furious that my long hair was gone, so I went and got hair extensions until my hair grew longer again. I told the group I had extensions and Li picked up immediately that I was not going to do well losing my hair.

IMG_3127_2The next time I saw Li was in my oncologist’s office when I was about to leave.  As I looked up from my papers she came out into the waiting room. I saw her and immediately gave her a huge hug and realized she went to the same office with a different oncologist.

Since she was alone I asked her how she was getting home and she said she was going to call a cab. Li lived in Santa Monica near the oncology office and managed to get around by bus, friend’s rides or taxis. I offered her a ride in my car parked far away. As we walked she was getting out of breath, because her red cells were very low from the chemo, but I kept telling her we were close to the car.

We started calling each other and found that we had a lot in common. I had a graphics arts background with a degree in architecture and she had worked as a designer at the Smithsonian. She left her job taking a very early pension and after seeing the Pentagon in flames from her apartment window on 911. She moved back to California where she and her ex-husband had lived before she went to DC.

The day my hair fell out we spent the day on the phone talking for hours. She was so supportive since she knew this was something I was not comfortable with at all. From that day forward we spoke with each other practically every day, and it was so comforting for both of us going through chemo together. Her regimen was adriamyacin every 3 weeks for 6 rounds totaling 18 weeks of treatment. Mine was “dose-dense” adriamyacin and cytoxin every two weeks for four weeks, followed with taxol every two weeks for four weeks totaling 16 weeks of chemo.

We talked about breast cancer and chemobrain plus our lives, side effects, research and managing to get through treatment, and we thought we knew a lot about breast cancer. We went out for meals together and one of our favorite places to eat was a Chinese restaurant run by a family we called “Lucy’s”, since Lucy always served us while her mother was in the kitchen. We both had terrible stomach issues during chemo. I had trouble keeping any food down and her food just seemed to run out of her little body.

We became extremely close because we were experiencing the same “trauma” at the same time. We would lose ourselves in conversations and never missed a Saturday to get together. We could both talk without our wigs on and I laughed when she made fun of me for holding on to whatever strands of hair would stay on my head. Truthfully, I did look a little  bizarre with 20 stands of knotted up blonde hair and probably should have just had my head shaved!

She also helped me through the crying jags since my hormones were going crazy. When one of my front crowns kept falling out, she made me laugh at myself being bald and toothless as I would call the dentist to glue the tooth in one more time till I finished treatment and could take care of the tooth properly.

We both needed surgeries and we never missed being the person to go with each other for surgeries. Li also got a dog named Shelby who is part shih-tzu and part maltese. Li had moved from a studio to a one bedroom so she could have more room and be able to take care of Shelby. She bought puppy gates and it was so much fun to visit her with Shelby, who I fell in love with from the day I saw her fitting in the palms of Li’s hands.

When Li had some cysts that she was not sure were cancerous she had an oophorectomy. Fortunately they were not cancer. She woke up crying which was so unusual for her. I think her mind knew that her female plumbing was missing and her tears were her hormones and her mind realizing that her breast and her ovaries etc. were missing.

In February 2007, I had a recurrence in the same breast, which my breast surgeon said had to have a mastectomy. I had finished treatment a year and a quarter earlier and had several biopsies that were false alarms in both breasts. My breast surgeon handed me business cards of plastic surgeons that he worked with.

The first surgeon saw me right away and it turned out he did Li’s reconstruction when she had her mastectomy and her results were awful. He wanted to do a Diep Flap (taking the tissue from my tummy and putting it in my breast). He also wanted $30,000.00 dollars over my co pays with my insurance to do the procedure.  I ended up picking the plastic surgeon that accepted my insurance, but that decision left me with many extra surgeries because I had a radiated breast that caused multiple surgical failures.

Like every other surgery, when I had the bilateral mastectomy surgery,  Li was with me. I encouraged her to go back to the first surgeon and get him to fix her botched job. She had her surgery after mine and when I went to talk to her doctor the first thing he said to me was “It’s very hard for a woman to lose her breasts”. I could not believe he didn’t recognize that I was in his office only two months before Li’s surgery. I said “Tell me about it . I have had a bilateral mastectomy with reconstruction”.  The next thing he said was that Li’s insurance probably wouldn’t pay for her stay that night. I explained she had a pre-approval letter and let him know that I saw him for a consult making him have to say he remembered me even though he didn’t. Awkward!

I knew how organized Li was with her paperwork, so when I went to her hospital room after speaking with her surgeon. Li pointed me to the paper with the pre-approval from her insurance. I called her insurance right from the hospital to make sure they were covering her hospital stay for the night. The plastic surgeon was wrong.

The next morning, Li had trouble breathing and she felt very out of sorts. We called the nurse who got hold of her Doctor. He said “When I did the surgery I may have kind of sort of nicked her lung”. I asked him, “In what percentage of patients does this occur”? He replied, “only her”.  I asked what they were going to do about it and he told me they would do a surgical procedure right in her hospital room by surgically placing a large tube in her side to build her collapsing lung back up. I couldn’t resist asking, “Are you sure her insurance will cover her to stay at the hospital longer after the procedure”? Of course the answer was yes, and I am so glad Li knew to get approval to stay overnight for her procedure, because if she had gone home and her lung collapsed I don’t want to think about how that would have gone down.

I stayed with my friend Li to hold her hand as long as I could while they prepped her for the surgery. They told me I had to leave the room while they did the surgery or I might faint. They don’t know me. I am very good in hospitals and I can handle blood and surgery.

When I needed my tissue expanders out and got my first implants, Li was with me. That surgery eventually failed.  After my recurrence I was very beaten down and I really wanted to spend some time with my family living in Tennessee. I ended up selling my LA condo and moved part-time to Nashville so I could be closer to them. But I kept my doctors and especially my oncologist in LA. I was lucky that another great friend in the group of 8 women breast cancer survivors (that now met at each other’s houses), rented a room to me in LA, so I could travel back and forth.

In February 2009, I flew to LA  for the monthly group meeting and hung out with Li for most of the time like we always did when I came to LA. We would go together to doctor appointments, restaurants, meetings and I also would bring my computer over and get work done while she did her work since she had wifi. She looked the healthiest I had ever seen her. She had gained some weight and her hair looked so beautiful and healthy. I told her how awesome she looked and we were so glad we made it through all that treatment. Li mentioned the last time she saw her oncologist she was told that it was a great sign that she was 4 1/2 years out with her pathology.

She was supposed to have her appointment with her oncologist when I was there and we were going to go together, but her oncologist had to change it, so Li changed the appointment for her birthday on February 19th. Li told me she had a small rash on her breast that she thought her bra must have caused. We both ate very well as we were enjoying the fact that our stomachs were returning to a new normal.

I returned to Tennessee and I called her later in the day on February 19th to wish her a Happy Birthday, assuming her oncology appointment went well since she looked so healthy. Li was a mess. She said that her doctor sent her to her breast surgeon for an immediate biopsy and the look on her doctor’s face made her feel like this was extremely serious. It was. The rash was skin legions from Metastatic Breast Cancer (MBC) and she also had it in her bones. She was Stage IV and had to start chemo again right away.

I ended up moving back to LA permanently in July 2011. I was very glad that I could be with Li so much during the last seven months of her life.

Li’s strength, courage and determination throughout her treatment were amazing. I felt awful especially thinking back to the day when we were going through primary treatment and she was going to have what I thought was  her last chemo the next day. We were together in front of our favorite restaurant “Lucy’s” in Santa Monica. Li’s red cells were awful so she had to sit down on a bench. I said to her “Li this is the last chemo you will ever have to do again in your life”. Sadly I was wrong.

Li worked very hard putting her affairs in order before the cancer traveled too far for her to have treatment anymore. As soon as she was sick with MBC she asked me if I would take care of her dog Shelby. I said, “of course” yet I hoped she was around for a very long time to enjoy the joy that Shelby brings. I remember when she was getting close to the end and I asked her if she was afraid. She said, “I’m not afraid of death but it’s the indignity of all of it that bothers me.” I knew that losing her mobility and not being able to do things for herself plus ending up thin, bald, and with a huge stomach from her liver metastasis building up fluid was no picnic. Luckily we found the most wonderful caretaker, Cora, who Li and I adored. She was such a comfort to Li constantly cleaning and making Li’s home beautiful plus running any errands Li needed done.

A few days before she died the caretaker Cora, Li and I had dinner. Li sat up in her hospital bed that we had in her room at home while Cora and I sat in chairs surrounding her. I said, “Li remember when we first went through chemo and we thought we knew so much about breast cancer? Boy were we wrong”. Li and I just laughed. We were trying to be normal having dinner, but truthfully there was nothing normal about anything that was going on. Li was getting more tired and going from moments of extreme clarity to moments of disorientation and confusion.

The last night of her life I came to join Li for dinner and she was particularly tired and didn’t feel like eating. I held her hand for some time while she went in and out of sleep. She said to me “I always love when you come by for dinner”. I told her that I loved her and was so grateful for our friendship, which I said at the end of so many of our conversations. She said she loved me too and went back to sleep.

She died that night and I received the call from another great friend who had also been by Li’s side through this daunting process. Li donated her body to science and did not want a funeral. When they came to get her body for UCLA, I was so impressed by how dignified they wrapped her up in a beautiful white sheet.

Since I promised her I would take care of her dog Shelby, I took Shelby and all of her things back to my home that day.  I miss my friend a lot. Thanks to her incredible gift of Shelby I feel Li’s presence every day.

Li’s death from MBC along with the friends I know who have cancer that has metastasized has made me determined to make an impact on seeing that we have an end to this disease.

I know that 1 in 8 women will get breast cancer in their lifetime and 109 women in the US die a day from breast cancer. (I haven’t forgotten that there are also men that get breast cancer too). This means one death every 14 minutes. With each person there is an important story.

I feel guilty sometimes that it wasn’t me instead of Li. It still could be me. That’s what is so cruel about the disease. We think we know so much more about the disease, but when it comes to the loss of lives we haven’t made much progress. True we can keep someone alive longer with chemotherapy drugs, but eventually cruel cancer figures out a way to outsmart the drugs so they no longer work.

My fearless friend Li, was not just another statistic. We had an incredible bond as a result of breast cancer and we cemented our friendship with being supportive of each other as breast cancer was always with us.

I know her spirit lives on through the memories of her.  I especially get comfort every day from Shelby. I am truly lucky that I got to know Li and I treasure the time that we got to spend together.