Hello Dear Readers, as you know this is Breast Cancer Awareness Month. Last week I shared my (heavily edited) diary of the events leading up to my diagnosis and treatment plan. This time I will take you through much of my surgery, what I remember, and the weeks following. I hope that my story can make another person’s story a bit less scary.
I have been diagnosed with Breast Cancer. It is easier to say than I have cancer. Not sure why… ER+, PR+, HER- Invasive Ductal. Apparently, it is the most common kind. To me that translates to the most treatable. I have surgery September 1. I was given the choice of lumpectomy or mastectomy, since the tumor is small and was detected early. The outcome is statistically the same, at least that is my understanding. I chose lumpectomy, as it was the least invasive. This week has been a whirlwind of appointments to prepare for the surgery.
I get a notice in my email to watch a couple educational videos, explaining what will be happening. So, watch them I do. The first one was explaining mammograms. Been there, done that. Next. The surgery itself. Due to some past history, that wasn’t so easy for me, but I get through it.
Tuesday, I had double duty. I met with the Radiologist. I was there for an hour and a half, discussing my case, my potential treatment schedule and what to expect. I was nervous walking into the place, as I had been the caregiver for my mother during her, ultimately unsuccessful but valiant, battle with Lymphoma. Memories flooded, and I began to cry. My vitals reflected my inner turmoil, my BP was up to 159/90. I am on blood pressure medication. Earlier this year, BC (before cancer) I was keeping it around 110 or less. Not bad for an old, fat woman! I am sure it has been skyrocketing in AD (after diagnosis.) The time spent with Dr. X-ray was helpful. I am going to University Hospitals here in Ravenna. Everyone I have met is professional, kind and offers hope. He is positive that I will be fine. I might even be able to do fewer treatments! One week of daily radiation as opposed to the standard 3 weeks. That is en-couraging.
Then there was Wednesday. OUCH!!!! Back to the same torture chamber; I mean the treatment room, where my biopsy was done. This time, without my friend from high school. This time with different people. No Swag Bag. I was being mag chipped. Not sure why that wasn’t done during the biopsy. They put something in there then. Wasn’t that enough? So, now I have two chips in me. I’m sure I can pick up AM radio stations if I stand on a hill.
My girl, I call her Ooba/Her Ladyship, has had a lot of attention recently. None of it good. June 30, standard mammogram. July 11, diagnostic mammogram. A bit more uncomfortable than a regular mammogram, but still not too bad. July 14 Biopsy. That meant a looooong time with Ooba in a vice. That meant a needle going down in her, I can’t tell you how far, taking samples of the tumor, and placing a tiny chip there as a marker. That was not fun. To say that Ooba is a bit on the tender side is an understatement. I never felt any pain with the cancer, which is why I will loudly advocate for regular mammograms, but now she hurts. Oh my God, has the cancer spread? Has all of the mucking about in there upset it and damaged the tissue even more? This most recent procedure hurt more than the other times. I think it is because of all the rooting around. Also, I stupidly looked to my right, and see my breast in the vice, and a needle sticking out of it. Not what you want to see!
Can they numb Her Ladyship before putting it in the vice? Not sure why they wait to do it after I am pinned in, maybe so I won’t go running away screaming.
So, Wednesday night, spend the evening on the couch with my ice pack. Tylenol, because the other stuff thins the blood. Can’t take ibuprofen, aspirin or anything like that for a while. Tylenol it is. I was going to go to a session and play some music one last time before it all hits the fan, and do some recording for a local artist. That was a big Nope!
Thursday was my day for me. I scheduled a 90-minute massage to get my body ready. Massage makes (almost) everything better. Out for lunch, nice walk in my beautiful hometown. Friends and family are calling to wish me luck, let me know they are thinking of me, praying for me, sending me healing energy. I am thankful for that. After a while it gets hard to keep saying ‘I am sure I will be fine, thanks for your concern.’ However, I am sure I will be fine, after a bit. It’s just that bit that is making me nervous.
Friday will decide my immediate future. If it is encapsulated and they can get clean margins. If it hasn’t spread to the lymph node. If, if, if. They will have to take one, perhaps two, nodes for testing. I like those nodes and would love to keep them. But not if C is in there. If they have to take more, how will that affect my arm? Will it swell? Will it impede my music? I don’t think it will, but…
If all goes well, then I will meet my Oncologist and make a treatment plan with her/him. Then I will know more. Labor Day is a bust; we might as well pull the boat out. Halloween, not so much? Thanksgiving. Christmas? How long will I be on chemo? Dr. X-ray said I might be able to skip chemo in favor of hormone therapy. A girl can hope? It all comes down to tomorrow.
June 30 my life changed. BC I was invincible. Strong. The helper. Early 60s, but mostly healthy.
Now, it’s AD. I have cancer. I finally was able to admit it to myself.
Still, I am an optimist. Small, common, caught early, otherwise mostly healthy. I have insurance, not the best, but I have it. I have the time and resources to deal with C. I have no responsibilities to anyone other than myself. My husband is kind and supportive. My family and friends are kind and supportive. I am retired so I don’t need to worry about work. A few days of post-surgery discomfort, a few months of radiation and chemo and I will be as good as new. Well, I will see myself differently. I will have transitioned from patient to survivor. But I will survive.
Surgery: Hurry up and wait!
I am to report to the hospital September 1, promptly at 11:00am. Nothing to eat or drink from midnight. We get there, sign in and I commence pacing again. I am quickly taken back, get to change into another lovely, stylish gown, and shown to a bed to wait. And wait. And wait some more.
Various members of Team Ethel show up, talk to me, take notes, and leave. It was around four before my surgeon came in. Mind you, I am glad he takes his time with each and every patient, but my patience was wearing a bit thin. He leaves to scrub up. My favorite person in the world enters, the Anesthesiologist. I’m getting the good stuff. And I’m out.
I wake up, the recovery wing is very quiet and subdued. Ahh, most people have gone home. I am ravenous by this time, but I am limited on what I can eat due to the anesthesia. At least give me some coffee before I get a headache!
I am observed for a while, and then sent home with instructions, pain medication and phone numbers. The good news, they had clean margins and wouldn’t have to go back in and take more. The bad news, it had spread to the lymph node. Change of course coming up.
Honestly, it wasn’t bad. I didn’t take the strong stuff. I was able to get by with just Tylenol and ice. What bothered me more than anything was the adhesive from the bandages. I was turning red and itching wherever the bandages were. So, I gave the nurse a call. Aquaphor is a girl’s best friend. Another item in which to take out stock. A few days, and I am back to my life. Mostly.
What Is Next?
The waiting has been bothering me ever since this began. Phone call, test, wait. Procedure, wait. Wait, wait, wait. Anyhow, this time I could understand the wait. I had to heal from my surgery.
Conflicting Plans:
As is normal with this type of cancer, they sent a sample to the lab for testing. Those results will be used to guide my treatment from here. I don’t know exactly how they come up with this number, but my Oncotype Score came back at 23. My understanding is 25 and below means no chemo is necessary. The Radiologist calls me and gives me the news. I love that man! Went out to celebrate.
Since no chemo is called for, I go in to get ‘mapped’ for Radiology. They make forms for my torso so that I can lie in the exact same position every time I receive radiology. They also put three small permanent dots on me so they can be precise when administering the radiology. Yay, my first tattoo!
With this done, I meet my Oncologist. Uh-oh! Oncotype score is 23, so although low, it is borderline. He still recommends chemo, though only 4 rounds and a light dose. Says it will improve my odds of not recurring by 3-5% over 10 years. 3 to 5%? Really? I want to go through all that for 3 to 5%? As he sees I am still hesitant he says he will submit my case to the Tumor Board for review. He seemed certain of the outcome, as he had me make an appointment for the following Friday, the 13th. Not the day you want to start chemo!
So, my emotions have done the roller coaster thing. No chemo, yay! Chemo, Oh No! (not the real words I used…) More tears, all week.
The Tumor Board is apparently the local Cancer Specialists for the center. To me, it feels like I got a second, third and fourth opinion. That was Wednesday. The waiting, and preparing my mind for chemo again is killing me. Awaiting my fate to be proclaimed. On Thursday, the Radiologist calls. The Tumor Board said I didn’t need chemo. That is the second time this person has personally called me to tell me I don’t need chemo. I really love this person! Tears of relief flood out of me. Dr. X-ray must think that all I do is cry. It sure seems like it.
Radiology
I had been ‘mapped’ previously, met the Radiology Oncologist and staff, and was contacted to begin radiology toot sweet. I can do this. Since the cancer made it to my lymph nodes, I was given another choice: more surgery to take out bunches of them just to be sure, or increased area of radiation. I chose more radiation. I didn’t want to chance lymphodema, because, you know…violin.
I arrive, am shown where to change into another lovely hospital gown. Then the tech, Tim, comes back to escort me into the Room. He asks me if I want a blanket. If you have ever waited while wearing one of those lovely gowns, you know they can be a bit…breezy. YES, I WANT A BLANKET! Oooh, it’s WARM!
I am led to The Room. It looks like the bench from a cafeteria table, with a huge science-fiction-type -machine looming over top. Please, Bones, can I just have a tri-corder reading? It is sheeted, with the forms form my legs and arms made from my previous mapping session.
So I ‘assume the position.’ On my back, arms over my head, holding on the conveniently placed handles. Then, the tugging. They have to get me into exactly the right place, every time. Tug this way, tug that way. I hope they (Tim and Gem at this time) have a good massage therapist as my body takes a bit of effort to move. Then when I am in place, they re-cover Her Ladyship and go into an adjacent room. There is an intercom so I can be in constant contact with them. I close my eyes as the machine looms closer.
They have been so kind as to infer my listening preferences, probably due to my advanced age, so I am lying on my back, eyes closed, listening to classic rock. Not too bad, I can do this. However, this seems to be a bit of a lengthy session. 3 songs go by, 4, 5, even six. Now, my musician math says this is about 20 minutes, is it supposed to be this long? My body is aflame because I am not supposed to move. Gem comes out, explains to me that he is putting a mark on Her Ladyship for future reference. Not only do I have Tatties, I now have an X to mark the spot, covered by a clear sticker so it stays on. Gem goes back, more clicking and whirring. 4, 5 6 more songs go by…Now I don’t think I will ever be able to move again. Finally, after about 45 minutes, they come over the intercom and say I’m done. Stay still while they move the machine back, then I can get up. I need help just sitting up!
Anyhow, that was the worst of the sessions. All the other ones go quickly, the people are great, and I am doing well. Sessions are Monday through Friday, at the same time every day. It is becoming routine. I meet with the Radiologist and Nurse on Thursdays to check my progress. So far, so good. Her Ladyship is getting a bit pink, a little brown and leathery in a small place, no blisters. They give me cream to keep her happy.
On Tuesday, November 7th, I transitioned from Cancer Patient to Cancer Survivor. They have a small bell ringing ceremony for your last treatment. My husband, the friend from high school, the diagnosing doctor, the entire staff of the radiology (who weren’t with patients) all came to witness. With tears of relief and joy, I rang that bell! The sweetest music ever made.
