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.

Always set up something to look forward to

I just returned from Europe having had an incredibly fun trip. Before I left, I had all sorts of deadlines and projects that needed doing before I felt ready and deserving of a vacation.  I hurried as much as I could to get all of my lists crossed off and I found a few things that were going to have to wait until I got back.

When it was time to pack, I accepted that I did all I could get done before I left and I prepared myself to go with a clear mind, so I could concentrate on having a great time.

Now that I am back I realize how great it was for me to get away from my usual routine. I feel refreshed and ready to return to take care of my lists, which sometimes can feel endless. Having something great to look forward to helps me to enjoy the tasks I have to do. This was particularly important for me when I went through primary treatment for breast cancer.

When I had to start chemo, before meeting my oncologist, I researched all the chemo drugs recommended for breast cancer and I picked all the ones that only caused hair thinning and asked my oncologist if I could get those medications. I said, “If I believe that these other medications are going to work for me would you give me this regimen instead”? My oncologist said that she would, yet she strongly recommended that I do “dose dense” for four cycles every two weeks infusing adriamiacin and cytoxin, followed by four rounds every two weeks of taxol. This regimen would take a total of four months and the other regimen was six months.

If I did the “dose dense” chemo that would make me lose my hair, I would start chemo in February and be finished in June. My Uncle was having his 75th birthday party in June, at a gorgeous villa in Italy that was rented for a whole week to come and celebrate his 75th birthday. Many family members and friends that I love were going to the party. When he found out that I had to do chemo he not only invited me to the party but he insisted on paying for me to fly first class (I am so lucky to have my Uncle Allan-everyone deserves an awesome uncle like mine).

If I did the regimen where I didn’t lose my hair I would miss the party. I wanted to go to the party so badly so I would have something to look forward to after all the chemo, so I decided to do the chemo that my oncologist chose based on my particular case.

Knowing I had the trip ahead made the chemo so much easier to bear. Chemo was extremely difficult though. I remember while in the middle of doing chemo how much I wanted to be in the moment while I still looked forward to the trip to Italy. I remember coming home one afternoon so tired from treatment that I had to take a nap before my drive to my oncologist for blood tests and more neupogen to boost my white cells.

I had the most vivid dream about my forthcoming trip. I picked up a family member that I hadn’t seen in years in New York and after riding in Central Park. I also stopped in Austria to pick up my good friend who was going to drive from Austria to the villa to meet me. Being that it was a dream I couldn’t believe how fast the trip was to get there. I woke up so peaceful thinking how great it is to be alive. There are good days and bad days with cancer and chemo, but this day was amazing. As I woke up, I laid in bed a while thinking of how excited I was about my trip.

I happily got out of bed, threw on my wig and didn’t even mind the traffic on the way home from my oncologist. I knew I was going to make it through the treatment and I would get to go on a wonderful vacation with family and friends.

It is so important to schedule time to get away. It doesn’t have to be expensive and even if you can only spare a short amount of time, getting away helps you see things differently and takes your mind to another place and time without your daily routine. You get to live in the moment before you go and certainly enjoy the time while you are away.

When I returned from Italy I started my radiation treatments. I felt so happy that I had a magical time away after a grueling chemotherapy regiment that caused me to lose fifteen pounds because I was so sick and nauseous from the treatment. Of course I lost my hair, eyebrows and eyelashes and was looking forward to them coming back. I also would go to radiation and lie on the table visualizing the beams of light killing cells including dangerous ones that tried to hide, and destroy them before they could get to other parts of my body.

I have returned from my trip with beaming enthusiasm for all the work ahead of me. There are stories to blog, new websites to launch, lectures to attend, webinars, news stories to share, SABCS, work with the National Breast Cancer Coalition Deadline 2020, delayed tax extension (Ok I am not looking forward to that), and work to see things improve for every cancer patient and loved ones. There is also time to appreciate and be so grateful for my incredible family, friends and fellow advocates, and acknowledge there is no place like home.