If you are interested in knowing more about my “feelings”, this might be the post for you. If details and information that help create the best path forward, you might skip this one and no offense. Hey, no one will ever know you didn’t read it - haha!
I had been laying in bed for hours unable to sleep thinking about a million of my fears and the list of things that needed to get done, but just seems to keep growing. I kept writing this more personal post in my head, afraid I will forget this detail or that. Finally, at 5:30 I decided maybe a quiet house was exactly what I needed, and I should just listen to my body and get out of bed. So coffee is brewing and the house is silent.
In general I am a positive person; I truly believe the correct outlook matters. While I do not create vision boards, I store one in my mind. I know what I want for myself and my family and am always working to make those things happen. I believe in the power of prayer, positive thinking, good vibes and overall happiness. I am even fond of my new crystals from a very dear friend. We all get one shot at this. We might as well enjoy the ride. I guess I am also a fighter. I am not afraid of hard work and operate well and can stay clear headed under pressure. All of these things are helping pave the path I am about to follow.
Now for some of the harder realities as of late. Some days have been hard. A few of them are really hard. The girls have seen me and held me while I cry more than I could have ever wished. For the most part though, I spend my day being positive and advocating for myself. I just told Jeremy last night during our 10 minutes alone before bed that the last few weeks have just been so rough and exhausting. He kind of chuckled and sweetly reminded me it has been EIGHT days, not the weeks or months I am feeling. I kind of took a deep breath but more of a deep sigh and Jeremy asked, “why the sigh?” I said I was just trying to take a deep breath and re-center. He made me realize I have been sighing, kind of a feeling of negativity vs. a true deep breath that feels cleansing and centering. (I can thank my dad for those “deep sighs”. He is a professional. Maybe I will give him some breathing tips next time I see him. Not that he really needs it.) For the most part, I am strong and pretty happy during the day. I still laugh with friends and always appreciate quick wit and a good joke. I have not gotten much work done but am trying to attend meetings to see my colleagues faces. I do not {usually} feel overwhelmed by the insane amount of information coming at me constantly from doctors and nurses regarding my body, my options, and my decisions. Nights are the hardest part for me, and I think like many out there that is when all the worries in your world like to creep in and disrupt our much needed sleep. Well, that has gotten exponentially more difficult. I have tried a few sleeping aids and need to circle back with my doctor, but part of me also feels like my body and mind do need to be allowed the time and space to experience those feelings, and honestly I just don’t allow it during daylight hours for the most part.
I know it is probably a silly analogy, but I remember after having my first child I told so many of my friends, “Man, there is so much that no one tells you about the actual labor and delivery process.” I am feeling similarly with cancer. Man, there is so much no one tells you about what to expect. I told Jeremy I want us to look back but I bet I have logged more minutes on my phone in the last 8 days than last year total. It can be exhausting, but every call is important. Whether it is with part of my established care team, one of the teams I am fighting to take my case, or a dear family member or friend. I try to call my mom whenever I get a chance, she needs it, and I do my best to support that.
First off, in all my naiveté I didn’t realize I was just going to receive a phone call with the news - “Hey, you have cancer. A doctor will contact you in the next 30 minutes.” I think I believed maybe I would either get negative biopsy results or something along the lines of “ma’am, we need to investigate further”. Maybe that is from the years working with my dad. I cannot tell you how many initial reports we have written that start out “further investigation is required”. Sometimes I guess cancer doesn’t work that way. We spent like 2.5 hours on the phone with “nurse navigators” that first day. They were already explaining radiation, chemo, hormone inhibitors, surgical options. My head was swimming. It did not feel real. I think waking up that next morning might have been one of the hardest moments for Jeremy and myself. You open your eyes and then it hits you. Shit. This is not a dream. I have cancer and A LOT of work to do.
My mother had texted me late the night of my diagnosis that our dear family friend, Phil had already contacted doctors and surgeons all over the country. I honestly didn’t know if I even believed her. It seems so surreal and I hadn’t even had a diagnosis for 12 hours. The next morning I called Phil and it was all true. He had spent the evening reaching out to some of the best places for treatment in the country and simply asked me what I wanted to do. He gave me an amazing pep talk about staying clear heading, listening to myself and my body and that these were all going to be my decisions. He said he knew being “selfish” wasn’t my strong suit but that needed to change immediately. I had to come first. Period. I didn’t even know I needed that talk, but he is amazing and helped the spinning stop and straightened the path before me.
People have already been doing some of the most kind and heartfelt things for us. It is overwhelming. I prefer to be on the other end helping and loving those around me. The list is already so long. I am swimming, not knowing how to even show proper gratitude and worried about how I will ever have enough time to “repay” all the generosity, love and support we are receiving.
The kids are all handling it differently. My oldest Emma, 11 (but she will definitely remind you 12 in March), has been so strong and positive. I am definitely a little fearful she is just pushing the fear and questions aside but we continue to talk to her about everything. She is channeling her mind elsewhere. She decided she wants to open an online store and spent hours planning an elaborate virtual birthday party. Lane at 9 is wise beyond her years and has asked some truly deep and thoughtful questions. She is having a much harder time. She needs Jeremy and myself and our time now more than ever. She isn’t getting enough of it, but I also don’t know there is such a thing at the moment. She hugs me and cries often and has already taken one “mental health day”. But let's be honest, I think she can swing that in 4th grade. Halle, at only 4, is the wildcard. We knew when we told the kids they would all react differently. To be honest, Emma and Lane have handled this pretty closely to what I expected. Jeremy warned me that Halle would likely say some weird stuff when we told them both due to her age and understanding and because she is sort of a nutjob in all the best ways. Her first words after the girls started to react were “It is going to be really sad when Mommy dies.” Well, I can assure you we all kinda laughed but my stomach also dropped. We tried to explain things better and she settled on it being sad they had to cut off Mommy’s boobies, but did tell me she would still love me even if it looked weird. She also does not understand all the appointments. Yesterday we left the house at 6:45am and except to stop in for a bathroom break, I was not home until after lunch. Then it was straight back to emails with doctors, nurses, advocates and phone calls with the same. Finally around 2pm she told me I had been working too hard and that I needed to just do all that work later. I got the picture and she needed a nap anyhow, so I sat with her so she could fall asleep.
I mentioned in my last post that I am hopeful I will see a team of doctors at Stanford next Tuesday, and while I am awaiting the confirmation from the surgeon who has come highly recommended, I have had all my contacts assure me he plans to see me. So that is great news. Who doesn’t love a day in Palo Alto? Maybe I will get lucky and have a long enough break for an outdoor lunch in Palo Alto!
My contact at UCSF both emailed and texted with me last night, and he also said he is advocating for me and going to do his best to help secure the appointments I need.
I have so many healthcare provider apps on my phone now it is silly.
And while it has not been confirmed, I do believe I have found the right team at PAMF based on the recommendations mentioned in the last post. I also indicated in the post yesterday that the two oncologists had vastly different opinions. The first one I spoke to was via FaceTime because she is away at a medical conference and the second was in person. The first was the one that was a strong proponent for chemo first. The second said based on all the evidence and how responsive my type of cancer/tumor is to chemo, she definitely felt like surgery first (her preference within 10 days) was best. To be honest, yesterday was one of the hardest days. Having two extremely intelligent (one Harvard/Stanford, other Yale/Stanford) oncologists tell me completely opposite things was more than unsettling. Everyone tells you that they will lay out the options but YOU have to make the decision. I felt lost. How am I supposed to make this decision when these extremely capable professionals do not agree? Up until that point, everyone had said surgery first, but that oncologist came to me highly recommended and I just didn’t know how to dismiss her professional opinion. Finally, last night I received a message from the first oncologist who had spoken with the surgeon and came back and said they were in complete agreement for my case and all consider surgery first is the final answer. I literally wanted to celebrate. The weight that was removed was amazing. In that email, she told me that Dr. Runi has blocked the schedule for surgery on February 26th. All that being said, this does mean I need to make final decisions regarding my team fast.
The last appointment I had yesterday was for the pelvic ultrasound. They did find a small fibroid and cyst. The first recommendation was follow up in a few months. She said this is very normal and would explain the issues I have been having. Everything else looked great but given that the best treatment is birth control (more hormones) which is NOT AN OPTION and my current situation, we are going to do a biopsy out of an abundance of caution just to ensure there are no abnormal cells. Awaiting getting that scheduled, lucky me.
Today is a new day. I have now had a cup of coffee and it is time to figure out what I can accomplish. Currently, no doctor appointments today. Very much appreciated after the 3 appointments and 3 “procedures” yesterday. I know that could change and if it does, that is also okay! As I stated yesterday, we left the house at 6:45am for the first appointment, I was home for a bit in the afternoon but the last appointment didn’t end until close to 6pm. I have some actual work to get done, still need to talk to HR and figure out my leave, finish Halle’s preschool registration and I have a swim team meeting tonight. My friends have been great at helping me dole out some of my volunteer responsibilities, but for all of you that do a lot of volunteer work know there are many jobs and projects you cannot just walk away from. Much like we are transferring projects and knowledge at Stanford, I need to do the same with the volunteer positions. And will continue some of my real and volunteer work throughout.
