About Katie

Our dear Katie Kramer peacefully passed away on July 13th, 2014 from metastatic breast cancer….
Read more about this sad news here

 

• Siskin Children’s Institute: Get To Know Nate
• Dr. Kathryn Kramer

Feb 2013

Hi this is Katie and I have created this site with the intention to share thoughts and love with you all, in the time that I have left.  With the huge number of people in my life, it is getting harder for me to stay in touch, and keep you all updated.  I am hoping to be able to communicate with more of you through this website.

Given my difficult journey over the last few years and my need to spend time and energy coming to grips with my ever-changing situation, I have not reached out to all my friends and loved ones.  Some of you may be just finding out now about my current condition. I regret not being able to be in touch personally before this.  I find it difficult to tell the whole story to people, as it forces me to relive the experiences over and over again.  As the cancer is progressing, I want to spend my time living and talking about things that inspire me and make me laugh, reliving happy memories of what has been a blessed and privileged life. It is also important for me to express gratitude to those who have influenced my life, as well as finding a way to give back to others who may have experienced similar challenges.

Why I am telling this story

I am choosing to share this very personal experience in the hope that anyone who may be going through anything similar to this — will find comfort through hearing my story. In the last two years, just about everything I feared happened all at once. I was diagnosed with advanced stage breast cancer (which later became a terminal diagnosis), a contentious divorce (that was initiated by my husband), a custody dispute, an insurance company that rejected my claims for treatment, and the sudden passing of my father. And until I entered hospice, I did not feel I had support (for the myriad of issues) I was facing all at once. To be faced with this at 41 years old seemed insurmountable. There is a very big difference in handling a terminal diagnosis at the end of your life, as opposed to in the middle of it. It is my sincere hope that anyone going through similar circumstances will find light in the midst of the darkness.

My Journey

In 2011, at the age of 40, I was diagnosed and treated for what was thought to be Stage 3 breast cancer. The cancer was very aggressive. I experienced a series of treatments that included chemotherapy, a double mastectomy and radiation. The cancer was in my right breast and was estrogen, progesterone positive. My lymph nodes were also involved. It was decided I needed chemo first to shrink the lymph nodes (or to hopefully eliminate them prior to surgery).  They hoped this would decrease possible nerve damage that I could incur during the double mastectomy. I opted for the most aggressive treatment: six sessions every 3 weeks with dosages of Adriamycin, Cytoxan and Taxotere.

The medical team I managed to assemble in five days included a radiologist, a breast surgeon and a chemo therapist. Many of my friends and loved ones helped connect me to the right doctors and assisted me in making some of the scariest, life-altering decisions I had ever made. For that, I am very grateful.

While all this medical turmoil was taking place, several shocking developments happened around the same time. While I was undergoing chemotherapy my husband (unbeknownst to me), informed my family he was going to file for divorce.  A family friend interceded and convinced him to wait until the chemotherapy treatment was over before filing. He informed me of his intentions after my third chemo treatment. And then the other shoe dropped…

At the same time, the health care bills were coming back denied for reasons that the health insurance company did not have to disclose to me, but said my case was under investigation.  The Affordable Care Act, put in place months before I was diagnosed, saved my life.  Nevertheless, I still had to find an attorney willing to fight the insurance company to make sure that my treatment was covered. Mr. Jon Desenberg (a close family friend and retired attorney) helped me speak with two or three different attorneys who all said it was hopeless to take on an insurance company.  Thankfully, we found Wachler and Associates, who were willing to take my case, resolve this matter expediently and so that crisis was averted.

Even though my husband had stated that he had wanted to divorce me after chemo, the thought of simultaneously fighting with the insurance company, battling cancer, and going through a divorce seemed too much to undertake all at once.  However, all of that changed in July 2011, when a good friend encouraged me to check to see if my son’s passports were in the usual place, given the fact that my husband had already wire transferred the majority of our joint monies out of the country.  My friend was concerned that he was planning to take Nate and leave.  My husband, being a German citizen, meant Nate had dual citizenship. My worst fears were confirmed when I could not find either my husband’s or Nate’s passports.  It was at the urging of my brother (an attorney) that I file for divorce first in order to set injunctions in place that could prevent my husband from leaving the country with our son.  If they had left, I would have had no recourse. (Hague Convention)

Divorce proceedings began three months into my chemo regimen, and my husband was court ordered twice to pay me interim support, cover costs for Nate, and continue to keep me on his health insurance plan. The proceedings went into arbitration and none of the court orders were ever upheld.

I am still fighting to this day to maintain weekly contact with my son, while my husband continues to try and terminate my parental rights using my cancer diagnosis against me.

Later in Jan 2012, I discovered that my husband had been having an affair that I believe began prior to my diagnosis.  Without my knowledge, my husband began cohabiting with her sometime in the late fall of 2012, ignoring the Friend of the Courts recommendation to shield Nate from such situations.

With all these difficult things happening to me at once, intuitively, I began to ask some questions and do some research.  I discovered that 20% of married men leave their wives after they are diagnosed with cancer. (link)  I also learned breast cancer is one of the only diseases that does not have a law preventing the courts from discriminating against women just for having breast cancer (as it relates to losing custody).  Click here to view the most famous scenario regarding custody and breast cancer about a North Carolina mom who lost custody of her children due largely in part to her cancer diagnosis.  Thankfully this was overturned before she passed. (link)

I asked myself the same questions over and over. Why would my husband leave me at the time I needed him most? Could the court system potentially use my cancer against me as a reason for denying joint custody? Why wasn’t there a law protecting women with a cancer diagnosis from losing their children?  Why could I find no specific support group for younger women diagnosed with metastatic cancer and the myriad of problems that come with it?  Why was very little money for cancer research going to women with a stage 4 diagnosis? (link)  These are some of the questions I was asking but could find no answers.

In June 2012, I was devastated to learn that I had cancer in my hip bone.  While I was preparing to run a 5K that was to take place on my 42nd birthday to celebrate the health, remission, and renewed stamina I had felt …. I had been experiencing some pain in my hip and numbness in my right foot.  I assumed the pain was from running or neuropathy from chemo, but one day the pain was so severe I was unable to put weight on my leg.  Bone cancer was found to have progressed into my right hip.  The doctors compared my original CT scans from April 2011 which showed a small lesion in my iliac crest.  The new CT scan showed only a fragment of that area of bone was still existing, with multiple lesions in it. Additionally, the cancer had invaded the muscles surrounding that area.  In reality, I was already stage 4 before ever even beginning my treatment for breast cancer.  Thereafter, I had radiation treatment to zap that area of cancer and try to alleviate the pain, which was partially successful.

At this point, I was now classified as having Stage 4 Metastatic Breast Cancer, with very little hope of long term survival.  Further evaluation over the coming months revealed that chemotherapy could only prolong my life by a few months.  I also learned that my particular cancer was rare, and that it actually contained several types of cancer receptors requiring the use of multiple and simultaneous chemo treatments.  After getting several chemo treatments and experiencing severe pain as a side effect, I chose not to have further chemotherapy but instead to focus on the quality of the time I have left.

It has been an incredibly difficult emotional and physical roller coaster ride for me and all those around me.  After going through all the various treatments in 2011 and then having high hopes of being cancer free in early 2012, it was shocking and demoralizing for me to go running one day, thinking I was cancer free, and be told just a few days later that I now had metastatic breast cancer.

To further complicate my medical situation, my long and difficult divorce proceeding and custody dispute, which began in 2011, has turned into a protracted nightmare, creating untold suffering and is still not completely resolved.  I have often said my divorce has been more painful than my cancer.

Through this journey, I have found moments of peace and have tried to find deeper meaning in the midst what feels like chaos.  A favorite quote of mine that sums up the spiritual journey I have been on is noted at the header of the site:

“Acceptance of the unacceptable is the greatest source of grace in this world.” ― Eckhart Tolle

I am currently receiving home hospice care which has been incredibly helpful.  The weekly visits from the nurse assist with my pain management.  In addition to that I also receive weekly visits from the hospice social worker, who has been an amazing support to me, my family and friends.  I relish the regular visits with my son.  I am so grateful to my friends and the amazing support team we have created to ensure that his visits are full of teachable moments, fun and joy.  We are still creating special memories together and spending quality times that he will look back on fondly. Check out the galleries to see some of our fun activities and adventures.

For a lasting impact for others, I began in Nov 2012 creating artwork to give to family members. As my mobility was more limited, I began to search for ways that I could provide something to express my gratitude and love.  With the support of my father’s entrepreneurial drive, this small endeavor grew into a project to give back to cancer patients to provide something concrete to help them through radiation treatments. Please visit our Project Give-Back Details page to learn more.

Between the joyous visits with Nate, spending time with family and friends, creating new artwork and Project Give-Back, I have been a very busy girl.

I would love to hear from other cancer patients, or anyone whom has overcome challenges, big or small.  Please feel free to comment below, or anywhere on the site, and tell me a little about yourself.  I hope that sharing my story can help others out there, feeling like I felt at times, and that maybe some of the lessons I have learned can help others too, through this site and my regular postings.

Love, Katie

Feb 2013

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Our dear Katie Kramer peacefully passed away on July 13th, 2014….  read more about this sad news here