Living Life While Battling/Healing Cancer
I started this blog on July 1st while sitting in the Yonkers’ Boat House at a beautiful desk made for writing the ultimate novel. It overlooked Rainbow Lake in the Adirondaks. I had 180 degrees of the most tranquil views. As I sat at the desk and watched the raindrops falling, the view was absolutely breathtaking. The trees packed in like sardines lined almost every inch of the shore. The lush greenery was everywhere I looked and the lake was rippling as it slowly moved down wind. As I listened to the raindrops falling on the dock, I began to think about the rain healing my body, healing my cells, starting from the crown of my head and showering down through the rest of my body. Then of course I was interrupted by the family telling me rain or no rain we were hitting the lake and heading to the rope swing. We spent a week on Rainbow Lake and loved every minute. Thank you Chad and Kara for sharing your beautiful home with our family.
As I sit here today and think about these last almost 5 years I realize how so very blessed I am to be continuing my cancer journey. So many others have lost their lives to this nasty illness. Don’t get me wrong I do not wish this journey on anyone and I am ready to get off this crazy ride at anytime, the sooner, the better. The unknowing, the numerous doctor appointments, the scans, the labs, the surgeries, the choices, the financial cost, the burden on family and friends, the impact on your children, and I can’t forget the treatments and their side effects. But all that being said, I am alive today. I woke up this morning to the sun shining through the window, the aspen trees blowing in the wind and the warm snuggles of Buster. I am grateful for today.
As many of you know earlier this year I took a well needed chemo break. It started as a 3 month break and ended at about 6 months. Those six months of no treatments were so darn good. I almost felt like I was back to normal, of course anyone with cancer or who has had cancer knows there is no going back to your old normal once that cancer diagnosis is made. On May 31st, I went in for a scan and the results were not great. A new little lesion popped up in my liver and the nodules in my lungs had grown slightly bigger so it was back on the chemo train. Back to infusions every other week. Back to not drinking or touching cold things for 5-7 days after the infusion. Back to fending off nausea. Back to joint pain and headaches. Back to lots of rest during the chemo week.
Then on August 8th I started to have back pain. It seemed to be in a similar spot as the last time so I started texting my awesome urologist Dr. Chacko. She got me into the office bright and early on the 9th since I had an infusion scheduled that morning as well. They gave me a shot in the butt to take away some of the pain and scheduled surgery for that afternoon. The thought was that we needed to change out my stent and that the pain was from my left kidney backing up. Surgery went smooth and Thursday there was no more back pain. But then came Friday. The pain came back three-fold. I was home with Madi and we had just finished watching a show together when the pain started to build. About an hour later I was in excruciating pain and called my amazing friend Krista to come help. She literally dropped everything and came to the house. Dr. Chacko sent us to Pueblo Radiology for an ultrasound on my kidney, followed by an X-ray. Meanwhile the pain was growing and as we waited to be seen I was not sure if I was going to make it. As we finally walked down the hall for the test we ran into Kristen Cyr who immediately knew that something was wrong. As soon as she gave me a hug the tears started to flow. Seeing a friendly face and getting that hug helped me make it through the next hour, tests and waiting for results. The call came in from Dr. Chacko and the stent looked like it was in the right place so off to the ER I went. The wait at Cottage Hospital seemed like forever and of course when I went into the restroom I was called and didn’t come out quick enough so I lost my spot and the wait continued. We finally made it back to the triage nurse and she was amazing. She realized I was in a crazy amount of pain and as quickly as possible got the pain medicine on board.
I was moved to a room and luckily Dr. Anis, a wonderful Washington Elementary parent, was working. He ordered up a scan and we continued to wait. When he came in the room to report on the results I could tell that something new had popped up and that he was concerned. He told us that they found a 12 cm mass on my right ovary but they were not sure whether it was cancer or something else. The mass on my right ovary did not explain the excruciating pain in the left side of the my lower back so I was admitted to the hospital for further tests. I stayed in the hospital from Friday night till Sunday but there were no real answers other than this new mass. By Sunday the pain seemed to subside so they sent me home.
After meeting with Dr. Sekhon and Dr. Rodriguez at the Cancer Center and Dr. Lenz at USC it was decided that I would have surgery to remove my ovaries and tubes and possibly my uterus depending on what pathology said during the surgery. On September 11th, I headed to Cottage Hospital with my surgery partner Krista Kieding. We did not have to wait long before I was called back to be prepped for surgery. Prep was supposed to be quick and then Krista could join me while I waited to be whisked off to the OR. Unfortunately the prep was not quick. The first nurse tried to access my port and was unable to do so twice. For the second stick she brought in a second nurse to assist. We put on the first nurses favorite music and she went in for a second time to no avail. It was time for nurse number two to do her magic. She explained that she just finished her Reiki training and she was going to guide me through some breathing. We put on Reiki healing music and she went in for the stick, still no blood return, still no access. She called down to my amazing chemo nurses and asked for any tips and verified the needle size and then returned. Meanwhile I was texting Krista what was happening and felt like she might be able to help with the issue at hand through her Reiki healing, so I asked the nurse if she could come back and do some energy work on me, she said absolutely. The nurse said okay, one last time, she walked me through the breathing while Krista did energy work and voila, port was accessed and blood return happened. Phew, I was not sure what was going to happen if they could not get my port and I really did not want to find out. Soon there after, I was wheeled into the OR. The assisting nurse to my surgeon Dr. Rodriguez introduced herself as Heather and I could not help but think that she had been my nurse in the past but she said she assists Dr. Rodriguez and since I had never seen Dr. Rodriguez prior to this issue, that was not possible. Then we started talking and realized that she is a water polo parent that I have seen on deck many, many times but just did not know. It is such a small town! I felt even more at ease knowing that someone that knew me outside of this issue was in the room assisting with the surgery. A few hours later I was slowly waking up in the post op room. Soon after waking up Jon and Linda appeared ready to get my ass out of the hospital and back home. It was then that I learned the mass was in fact colon cancer, which on the one hand sucked but on the other at least it was not something new like uterine or ovarian cancer. Since it was not uterine or ovarian they left my uterus and I was discharged that evening. Bring on the immediate onset of menopause.
With surgery done, the next step was to wait for healing to occur and then head back in a month for another Pet Scan to reassess where the cancer is at and decide on the next course of action. I had my scan on Friday the 13th and met the doctor today for the results. The bad news is I still have cancer but the good news is it does not look like anything new has popped up. A few nodules and nodes have grown slightly but Dr. Sekhon was not surprised given the mass that we just pulled out and the fact I have been off of chemo. As of today the plan is to start back on chemo on November 1st. The new protocol will be combining a standard colon cancer protocol, Folfiri and Avastin with an HIV drug Maraviroc. Apparently, this drug was previously in a clinical trial for cancer but at the time they also found it to be an HIV drug and scrapped the cancer angle. Well, Dr. Lenz thinks the cancer angle is important and is now heading up a clinical trial at USC. Since Maraviroc is already FDA approved for HIV I can follow the trial protocols but do them in Santa Barbara as long as we can convince our insurance to allow me to use it off label. My doctors seem to think that we may have to fight for it but that it will work out. Hoping that this will be the magic bullet!
HAPPY 45th BIRTHDAY!
The amazing Linda Meyer organized the best birthday celebration. As many of you know I have been doing an intention setting dip with Krista Kieding and Suzie Powers on the first of each month. My birthday is September 1st and landed on a fun, fun Friday this year. We headed down to Leadbetter Beach and started the celebration out with some wonderful restorative yoga lead by the fabulous Jill Martin. If you have a chance to take a class from Jill I highly recommend it. Then everyone headed down to the ocean for an intention setting dip. After our dip we headed back up for a delicious lunch, fun conversations and an overall love fest. Thank you Linda and everyone that came it was a fantastic way to bring in 45.
THE FRIENDSHIP PADDLE 2017
10 days after surgery I had the opportunity to embark on my 5th Friendship Paddle. This year’s recipient was the beautiful, Genny Maxwell. The Monday before we were supposed to shove off I was not sure if I was going to make it. I was not recovering as quickly as I hoped and I sure did not want to do something that would set back recovery. However, I knew deep in my soul I needed the magic of the paddle. As the week went on I tried to rest and heal as much as possible and by Thursday I decided I was going. Once again Pamela offered up her boat/home for TEAM TSFC. (Serena, April, Kristie, Nicole, Cara, Brady and Me.) We were so excited to have Brady back with us for the adventure. We left Friday morning on September 22nd and headed out to sea with Pamela as our captain and Alan and Cooney as our amazing crew. It was a beautiful day. Our first stop was Prisoners Harbor. We explored sea caves and ventured on the island to find foxes. After our field trip to Prisoners we headed to smugglers to connect with the rest of the Friendship Paddle brigade. We anchored up, well to be honest, Pam, Alan and Cooney anchored us up and then took in the beauty of this magical event. We were soon visited by Jen Gamble in her dinghy. We hopped on and went for a wild ride as we made our way over to the rafted up boats for dinner, drinks, laughter, tears, hugs and more. As I sat back and watched Genny and Josh soak in all the love I was reminded of how very special the Friendship Paddle community is and how blessed my family is to be a part of it. After an absolute love fest of an evening we headed back to our cozy boat for cards, gratitude, chocolate and tequila, it’s a tradition.
The day of the paddle we were up before sunrise getting ready to shove off to our starting point. I covered my surgery incision site with some, hopefully, water proof coverings and prepared to hit the water with Cara for the start of the paddle. This year we did an ocean start. We circled up together and surrounded Genny and Josh with love and listened to Eric Fuller’s beautiful words. As I was in that circle I reflected on our loss of Michelle Grinsel and felt that although she was not right in front of us she was actually all around us, watching over us, spreading her light to each and every one of us. They begin each paddle by sending one person out to start for each of the prior beneficiaries. This year Ethan and I were lucky enough to be paddling for ourselves and I hope that we will continue to paddle for ourselves for many years to come. For those of you concerned about my paddling after surgery you should know that I did stay on my knees and when my body told me it was enough I headed back to the boat. With each stroke I focused on the healing energy that the ocean brings to me and shared that energy with Genny, Ethan and the many cancer fighters that I was taking along with me on this paddle. As we paddled in for the landing I watched Genny and Josh lead the way, heard the clapping and cheering, saw the smiles and tears and was of course accosted by Madi and Lucy as they swam out to meet us. It is hard to put the experience into words but it truly is extraordinary and one that I look forward to every year, where my heart, mind and soul are filled with magic. Thank you to everyone who donated to Genny and her family!
GALS GIVE BACK 2017
Mark your calendars for the evening of Thursday, December 7th. The incredible Gals Give Back ladies will be putting on a fabulous event at DUO to help raise some funds for me to go see Dr. Nazami in Newport Beach and offset the costs of the herbs, acupuncture and other alternative remedies. Dr. Nazami’s therapies are not covered by insurance and are costly but maybe he will be my magic bullet. I will keep you posted about how to purchase tickets.
I can’t thank you all enough for sticking by me and my family for almost 5 years. I hope you all know that your support, love, hugs, dinners, juices, and so much more are appreciated.
I will leave you with this quote I found today. It seems to embody by cancer journey.
“She Stood in the Storm and When the Wind Did Not Blow Her Way, She Adjusted Her Sails”
Hugs & Kisses