Nov 30, 2019
It’s been a week and a day since my surgery. I was looking at the clock yesterday and reflecting on where I was at those hours one week ago. I had thought about how I would feel the next day, 2 days later and a week later after surgery as a type of meditation. I had imagined how much better I would feel after the surgery. It is truly amazing how time flies no matter what you do or think. In complete certainty you will be in the future and all the anticipated bad things will be in the past. I have reflected on this type of thinking even in my University days when I wanted exams to be over. I would imagine how I would feel after the exams. I would acknowledge that I will have a memory of feeling the anticipation of the event and it would be in the past. Knowing this certainty would occur made it more bearable. There was always a promise for the greener pastures if we just stayed in the present and had hope for better in the future.
Here we are today, a week later and I am now living this dream, this imagination. I do feel better. I do have less anxiety. I went to the surgeon yesterday and found out the results of my pathology studies. Mostly positive news. They were able to take the tumour out with margins that had tested negative. It was larger than they expected measuring up to 4 cm at the largest part vs. 2.8 cm. The lymph node tested negative which was a huge relief. The tumour is positive for estrogen and progesterone but was HER negative. From what I am reading this type of breast cancer has a good prognosis. I was told I would need radiation. My understanding about the chemo was a bit more confusing. I heard that sometimes chemo is not necessary and 95% of women do well after without. There is however 5% of women who do not and for this risk we needed to do further DNA testing on the tumour to stratify my risk in the 5%. So the tumour has to be sent to one of two labs in either California and UK for this result which would be ordered by the medical oncologist. My friend Andrea, who was with me, heard that I would need chemo no matter what and that this test would just determine whether I would take it via pill form or IV form. I suppose even with someone with you, there will always be something missed or misunderstood. I will wait to meet with my medical oncologist and find out these answers. I am hoping for appointments this week.
The girls and family are also relieved with these results. I think overall it sounds positive which makes everyone feel better. I know it is gone but I also know there is a % chance of reoccurrence even after radiation. Radiation does take the % from 25% down to 5-10%. There are a lot of advances in radiation therapy and so I am hopeful this won’t be so hard on me or my energy levels. I have no idea about what the hormone drugs will be like. I am going to research other ways to reduce estrogen levels in my diet and body. For one, I have to lose weight. I have lost 25 lbs since last year and I will continue to work on this as a primary goal that I have control over. My eating diet has also changed. I am eating more nuts, cruciferous vegetables and drinking more green tea. All known positive results for preventing and reducing risk of cancers. This isn’t going to be easy, but I know my reasons why I have to do this work. I think if you don’t know your “why” then you will be good for a short while and go back to your old habits. My old habits weren’t bad either, but I obviously have to up my game further. I can’t compromise on just being a fit larger person. I now have to be a fit healthier weight person.
I have always been an active person. I have always maintained exercise and good eating. I have always just been a larger person in frame and weight. Even when I was running 3-4 times a week and doing other forms of activity I was I over 200lbs. I couldn’t lose weight. What I have to do this time is not only change up the type of foods that I eat most in the day, but also the amount of proteins and type of proteins. I also have to limit the carbs. I am not going to eliminate them but reduce them significantly.
I will continue to blog about this journey and hopefully others will speak out and find something in this experience that is helpful. I felt very alone as I didn’t know too many people directly having dealt with breast cancer. I had one friend who I spoke to early on but since her journey was known and mine was unknown, it was hard to understand where I fit into that experience. I knew of one other friend through church and I waited to connect. I am not sure why I took so long to reach out to her. I was scared to know if things were worse for her and then I would lose hope? I can’t explain it. I actually had a camp and church friend pass away suddenly from a tragic motorcycle accident the week that I found out about my cancer and I could barely get to the funeral home that week to pay respect. I didn’t go to the funeral as I just emotionally couldn’t manage the loss and my feelings of my own demise that ran through my head that week. I avoided everything on Facebook that reflected on a passed loved one. I didn’t want to read about cancer. I didn’t want to talk to anyone who had a worse experience and because I didn’t know what experience anyone had, I tried to look away. I almost isolated myself to protect my deep fear of the unknown. I am not sure this was the right thing to do. I am not sure who else I could have spoken to or reached out to. I didn’t know of any groups of women to talk to. Nothing was offered by the Dr. upon being given the initial information. I reflect back on how powerfully scared and alone and dark those weeks were. As I have started to speak to a few women now, I am hearing the same reflections indicating that it was the waiting at the beginning that was the hardest part. If anything could take that away, I wish for it to happen. If you could get that mammogram and the biopsy the same day with results in a few days, that would be ideal. If there was a support group or someone who could talk to you upon hearing this news right away in a manner that provided hope and support. This would be ideal. If the nurses in the hospital wouldn’t reflect on a Friday that they failed because it was Friday. If the hospital was warmer and more comfortable. If the Dr. delivered his news with less sadness and worry and more hope, these would all be powerful game changers in the life of a patient.
Cancer patients don’t need your certainty. They need your hope and compassion.
We always offer the risks but where are the lists of benefits. Why are medical teams always so versed on the risks but not on the benefits? These are just as important in a patient experience. The tables need to turn toward the patient’s overall needs and not on how we minimize risk to the health care providers. Those working with patient’s have to change their attitudes and remember how every interaction with a stressed worried and hypervigilant patient matter. Learning how to bring confidence to an interaction regardless of what is being done is so important. It is not about false hope but about finding the hope, finding the light in any situation.