Advocating for Oneself & Making Plans Anyway

The last two weeks have been an emotional rollercoaster, and yet I've been able to decide when to ride that ride (for the most part). Every three months I've had a CT scan of the chest, abdomen and pelvis to assess my body's response to the chemotherapy and it has been stable for so long that I expected it would continue to be the same.

But on August 15th, I learned that the breast cancer may be back in my breast (and that it never really went away?) and that the liver lesions are stable. The Radiologist's impression recommended an MRI of the breast and mammogram to confirm the suspicious findings. After the CT scan it was incredibly difficult to get the MRI of the breast scheduled (radiology decided to cancel it, having received a note from my cancer team that it wasn't necessary after all) and nearly impossible to get the right kind of mammogram scheduled. Why was it so hard for my cancer team to schedule the right mammogram?! And why did they decide to cancel the MRI without contacting me first?!

I was able to get the MRI of the breast back on the schedule after telling anyone who would listen that I had a new lump and a new pain in my chest wall. Then, on Thursday, August 25, on the day of the rescheduled MRI of the breast, radiology tried to call me to cancel the MRI and mammogram AGAIN because they still had that note from the prior week (and hadn't received an updated note to go ahead with my case even though the nurse practitioner I saw on the 23rd before chemotherapy agreed we should go ahead with the MRI and mammogram).

Not only was I dealing with a new pain in my breast (similar to when the diagnosis was initially made) but the medical imaging people were trying to tell me I didn't need the very test that I did actually in fact need! I told them gal calling me that she could not cancel the MRI (and mammogram), repeating my script about the new lump and chest wall pain. She agreed not to cancel the MRI and mammogram (and the MRI went ahead as scheduled last Thursday) but when I went in for the mammogram I discovered that it had been ordered as a screening mammogram instead of diagnostic with ultrasound. As a result, last Thursday I did not have the mammogram as scheduled; instead it has been scheduled for this Friday, September 2nd. I called the cancer center over and over until this got resolved. I called the breast center. I even called my primary care doctor. I advocated until I was able to get what I needed. Yes, it was exhausting. Yes, these last two weeks have been exhausting. But the last two weeks have also been invigorating and restorative because I was able to go up north with a girlfriend and stay on Lake Superior for a few days. We had a lovely time exploring the hiking trails and look out points, enjoying a fire right on the water, stargazing and venturing into Grand Marais. The sound of the lake still echos in my mind.

In fact, I was on my up north when I discovered the news from the CT scan (thanks to MyChart, the results are released immediately) and decided then and there that there wasn't anything I could do about the news except make plans anyway, live my life and have some fun. I decided not to worry about it until I had more information. So last week, when I received the breast MRI results, I decided that was a good time to worry, since I then had enough information on my hands to go full on freak out! After doing that for a few days, I decided that was enough worrying, and it was time to go back to making plans and living my life.

When I got home from my visit up north, I said to Fred, "We need to buy land up north near Grand Marais." His response surprised me. He immediately agreed, confessing he's been wanting to do just that, as part of our retirement plan. This past weekend we went up to Grand Marais together and looked at some land-and we found some! We put in a offer on a nice 5 acre plot just outside of town with a potential lake superior view from a second story (or a tree house). I'm making plans. I've decided again not to worry. I still don't have all the information and probably won't until next week. That reminds me, I should probably call the cancer center again and beg to fit into the doctor's schedule when my oncologist returns from wherever he's been. I never gave him permission to be away while all this was going down! How dare he?!

During all this, I'm thinking about ideas for a couple of workshops I'm planning to help facilitate in the near future. First I need to select the location and then set a date. I'm excited about this potential for land up north and about the potential to help others with my experiences on my quest for healing, health and wholeness. I'm finding that making plans is the one thing that helps me forget I even have cancer. It makes me feel normal again. Whatever normal is. My new normal is very fluid these days!

Stay tuned for more updates and thank you for your thoughts and prayers. Blessings to you!