My New Normal
Excerpted from remarks made during 2018 Breaking News In Breast And Ovarian Cancer And What Should I Make Of It
Good evening. It is a great honor and also a great personal victory for me to be speaking to this wonderful group. When Sharsheret asked me to speak, I jumped at it. I was happy to be able to give back to such a wonderful organization. Generally I am a really private person, but I felt it was important to raise the awareness of breast and ovarian cancer. In addition if someone who unfortunately is going through cancer and can gain from my experience then somehow my pain wasn’t for naught. I hope that by sharing my story I can inspire others, just as so many have inspired me.
On November 24th 2014, my doctor told me the words that everyone dreads and nobody wants to hear. It was an ordinary Monday and I went for a routine mammogram, but it turned into a day that I will never forget. I was petrified. All I remember saying was that I do not want to lose my hair. I had thick, gorgeous, long auburn hair. The next few days were a blur. I do not think I was able to stop crying. When the doctors finally confirmed that indeed I did have breast cancer, I just sat there. My husband and siblings cried as well. I do not think a person can ever be prepared to hear the words that they have cancer. I was so young. When did I become so grown up to make such big decisions like a proper treatment plan and which doctors to use? How does a person know that they are making the right decisions? Unfortunately for me, the cancer was too advanced and chemo was a must.
The treatment plan was rough. There are not enough words to explain what chemo can do to a person, nor can one understand it unless they have been through it. I think the hardest part for me was not being able to take care of myself, my kids, and my house; not being able to remember things; and not being able to focus on simple tasks. In addition to all this was the realization of how little control I actually had over my situation. I made the decision not to tell people that I was sick. I did not want anyone’s pity or to be labelled and looked at differently. I told my siblings, a few close friends, and my work. I did not even tell my children, I felt they were too young.
One of the most difficult things for any woman who undergoes chemo is the inevitable losing of her hair. Hair is how a woman defines her appearance and then suddenly its gone. My fear about going through chemo was losing my hair. I was so attached to my hair and I didnt want to look sick. I heard about cold caps and I decided to do the research to find out more. I googled it and found that penguin cold caps is the one that is most used in the states and discussed with my oncologist. While some hospitals and doctors are not really for it, it is becoming more popular today. My oncologist explained to me that the risk were really low and he was comfortable with me using cold caps. For me the decision was easy, I was afraid to lose my hair, so I decided to go for it, not fully realizing all the details. Cold caps are caps that are -32 degrees and it freezes the scalp in order to prevent hair loss, although shedding and losing some hair still occurs. These cold caps are wrapped around the patients head during treatment and are changed around every 30 min, in order to make sure it stay at a freezing temperature, cold enough to freeze the scalp. The process starts 30 min before chemo and needs to continue for 4 hours after chemo making day at the hospital longer. There is another type of cold caps called the digni cap which works the same way as the regular cold caps except that it is attached to a machine and always keeps the cold temperature, so that a person don’t need to keep switching the cap.
There are also rules how to comb the hair and what to do with the hair, for example no heat to the hair (meaning no hot showers), only using a wide comb to brush the hair, and restrictions on when one can wash the hair. Cold caps must be started for the first treatment. Even though there is some hair loss with the cold caps, one still has has hair during chemo. Generally it works, unfortunately for some patients it doesn’t work.
Personally for me I was grateful that it worked even though I lost a decent amount of my hair, however it wasn’t noticeable to the outside. I still cried every time my hair shed, and my hair became dry and brittle as chemo dries a person’s body. But just the fact of having hair on my head, helped me emotionally get through my rough treatment plan, even though using cold caps meant my days at the hospital were longer and my hair was dry. It does cost but some insurances cover it and some hospitals pay for it as well.The hospital saw that it worked on me even though my chemo was extremely strong and now tell patients about cold caps and today they have a freezer and chairs for patients using cold caps. I have spoken to many other patients who used the cold caps, most were pretty happy with their decision. While others say its too complicated with all the restrictions and rules. However it’s really a personal decision.
It has been a little over 3 1/2 years since I was diagnosed, and I am thankful to G-d that I have finished my treatment. Of course, fear of recurrence is always in the back of my mind, but I am healthy today and very grateful for that.
They say g-d brings the healing before the illness and I can see how true this statement really is. My help and strength came from the most unexpected people. Sharsheret and the peer support network are on the top of the list.
My life will never go back to the way it was before cancer. But I believe that everything happens for a reason, and I have come to slowly accept and appreciate the new normal that I now have. There is no doubt that I have become stronger, and oddly enough more comfortable in my own skin. I am no longer afraid to need others, or to feel uncomfortable. And I’ve become less judgmental and critical as well – I’ve learned to see the good in things and appreciate the small wonders of everyday life. For myself, and for the thousands of other women who are facing cancer and other life threatening illnesses, I pray that G-d will continue to give us the strength that we need to fight and be healthy, so that we can give back to others who are so bravely fighting.
Sharsheret thank you for ensuring that no woman going through breast or ovarian cancer go through it alone.