I wasn’t up to calling everyone about my diagnosis, so some people heard by email. This may not have been the best way to tell people but telling them one at a time was so grueling, I just couldn’t do that with everyone. So instead, I tried to manage the flow of information through emails, and to word the emails so they weren’t too abrupt. For example:
I'm sorry if this email is abrupt or startling. I just kept hoping it would all turn out to be nothing, but it isn't.
In July I had an unreadable mammogram, which led to an MRI and an ultrasound, and then a core needle biopsy on both breasts. This biopsy showed precancerous tissue in my left breast, although my right side is still benign. So this Monday I had a surgical biopsy to remove the precancerous tissue and determine if my DCIS was back.
The DCIS is not back, but I do have an invasive breast cancer in my left breast, probably stage 1, but we won't know until the lymph nodes come out during the mastectomy. Because I had this breast treated with radiation before, I can't have breast-conserving surgery again, so I have to get the whole thing removed. MG and I are almost decided that I will get reconstruction, and that I will probably do the right side as well, just to avoid having to go through all of this again on that side later. The risk is pretty high, now that I've had two separate kinds of breast cancer on the left.
We won't know about chemo until the lymph nodes are tested, but my surgeon thinks that because I am so young, it will probably be recommended. We are still wondering if we should get a second opinion or not. I haven't talked to my oncologist yet; we have to see what she says. I've only known this since about 9am this morning. Thank God MG was home when she called.
As you can imagine, emails like this led to more emails, and to phone calls and more phone calls. It was exhausting. Perhaps you already know how difficult it is, telling people who love you that you have cancer, dealing with their reactions. Some people are very good at not letting you see how upset they are about your diagnosis; instead, they comfort you. But other people are not able to consider how their reactions can make you feel worse, and you end up having to take care of them when you are exhausted and in shock.
A friend suggested we use the Caring Bridge website, which hosted free blogs through which patients can share updates with family and friends. People could read the blog when they wanted an update, and I wouldn’t have to repeat the same difficult information over and over. This was one of the best things I did for myself during treatment. Caring Bridge allowed you to make the blog private and password-protected or public, whichever ou preferred. Setup was easy; within hours of learning about it, I had a blog set up and ready to go. Then I emailed my friends and family the link and password information. In addition to giving me a way to share information, the blog also allowed people to leave comments in response to my entries. The bulk of the next few chapters include portions of these blog entries and guestbook responses.
People began leaving notes immediately. I needed their encouragement and was grateful to have it. Here are some of the comments they left; just the beginning of the loving support that they would wrap around MG and me in the following months:
Sunday, December 2, 2007
“Thanks for setting up this webpage. It's a great way for us to let you know you are in our thoughts and prayers. Plus we get to stay updated without calling you every day! Stay strong and optimistic. You have so many people on your side!”
“I am in shock over this news but walking alongside a friend at work who has gone through similar experiences, I have watched her heal, problem-free, with also an unexpected sense of renewal. My family and I will always expect the same for you. You were made strong for many reasons...maybe this is one of them. You are in our thoughts every day.”
As you read my story you will see that, as much as I tried to lock down a plan for surgeries and treatment, this plan was in a constant state of flux. As much as we patients might want to have control over all of this, we do not. Our cancer journey is dictated by any number of things: How long does it take to get test results? How soon can our new doctors fit us into their schedules? What other surgeries are already in our surgeons’ schedules? What are the schedules for the operating rooms the hospital? How long does it take to get the insurance company’s approval? And so on.
Another thing you will notice in my story, and perhaps in your own, is that while we may have specific ideas about what we deserve in terms of treatment, our doctors may not agree with us, or our insurance company may not think it should be covered. And what insurance will cover is not always clear, nor is their message always consistent. This can be confusing and frustrating. In my case, I wanted very much to get a second opinion on my course of treatment, since this was my second breast cancer, and I wanted to get that second opinion at a regional cancer center. Ultimately, the only second opinion my insurance company would cover was that of another local oncologist. You will see mention of this issue in several of my blog entries.
Blog: Monday, December 3, 2007
Wow... that's really all I can say... all of your notes in the guest book were so moving.
I went to my local AA meeting today, as I am nervous about being on any type of narcotic. I got great reminders about the importance of faith; in God, in my support network, and in my doctors.
I do have faith in all of you, in my doctors, and also in God. When I choose to remember that, and to remember to be grateful for all that I have in my life, I forget to be afraid, so it's pretty clear where my focus needs to be.
I have done my homework in finding out what my coverage is for the surgeries, hospital stay, second opinions, etc. and I must say, THANK GOD I have good health insurance. We will still have to come up with some cash, but my coverage is very comprehensive. I am reminded, as I was when I got the final bill for treatment 5 years ago, that cancer is a very expensive disease to treat. It can make or break you financially, I believe, for life, if you don't have good insurance. So, we are very fortunate.
Blog: Tuesday, December 4, 2007
… all your emails and posts in the guestbook have been great, and I am taking you all with me to see my surgeon today. I'll let you know what we find out during that appointment.
I loved how this blog helped me stay in touch with my family and friends while I was dealing with all of this. During my first cancer, MG and I, with the help of our immediate families, pretty much dealt with everything on our own. But this second cancer was so much scarier, and we needed more support and more help this time.
Guestbook: Tuesday, December 4, 2007
“Thanks so much for setting this up so everyone can keep posted on your progress (which will be amazing of course) and let you know that you're both in our thoughts. We're sending SoCal sunshine-y streams of positive energy your way. Stay strong.“
“I want to let you know you are in my thoughts and prayers. Maria, you are a fighter - I mean that in the most endearing way, so I know this will be just another bump in the road for you - a tough one to get through but I know you're up for the fight (you always were and are). Please keep me posted. MG, take good care of her.”
None of my friends or family had been through a bilateral mastectomy or reconstruction, so they were not able to tell me anything about it. My Mom had gone through a unilateral radical mastectomy for her breast cancer, but wore a prosthetic, so she couldn’t offer much either, even if she would talk about her experience, which she would not. Fourteen years later, this is still true. The folks who were my friends and family back then have thankfully still never been through this experience.
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