Life is ever changing and full of challenges. With each of these we have got to make changes to our lives and more importantly, grow as an individual. They are life lessons. They are free for the taking. If we just let them slip on by? we let opportunity slip on by. So I say, do what you have to do. Mourn if that is the appropriate reaction. Get angry if that is the appropriate reaction. Barter with God, or whatever spiritual being you are in touch with, if that is the appropriate reaction. But by all means, react!
The past 6 months have been very trying for a myriad of reasons. Life has been throwing some tricky obstacles into my path. While I don’t profess to have dealt with all of them in the best way, I will learn from them. However, I have to tackle the most pressing problem first, and that is a cancer diagnosis.
In the middle of November I noticed a rather large lump on my left breast. Sad to say, I am not diligent in ‘self checks’, and I’d missed my yearly Mammogram last year as I was dealing with 2 knee surgeries, a fall that resulted in a broken wrist and 5″ gash in the back of my head. I have no idea how long said lump was there. 2 years? A year? Months? Don’t know. We’ll never know. However I called the doctor right away. Mammogram and Ultra Sound and a biopsy. I got the phone call that it was cancer not just a cyst as I’d hoped.
I had reached out to a few people at this time. It is very hard for me to ask for help, but I realized with everything else that was going on at the time I couldn’t keep doing it all on my own. And so, My Support Peeps as I call them, were born. They have helped me so much in moral support, love, listening to me, offering help and going to doctor appointments with me. I am very grateful to have them in my life. I also realize now, just how vital it is, to have someone with you at the doctor’s office. Most especially in cases like this. The amount of information that is given in each session is simply overwhelming. There is no way that I could take it all in, or write everything down. Invaluable, don’t hesitate to bring someone with you when you visit a doctor. None of the doctors that I have seen has had a problem with this at all, in fact, they encourage it. They understand.
Within days of getting the diagnosis, I saw a surgeon, he found a few lymph nodes on the opposite side to be inflamed as well, which led to another Ultra Sound and another biopsy. Thankfully, they were just ‘angry’ lymph nodes and nothing suspicious. Surgery was scheduled for Christmas weekend. I went through a fairly new procedure to aide the surgeon. A Radio Frequency chip was placed inside the tumor. I was the first person to get this done at Gaver’s Breast Center. There was an audience to watch it being done and they were all quite giddy over it. They were really excited about it. I on the other hand, was not as excited to have a room full of people watching while I lay there exposed. However it wouldn’t be long before my modesty (mostly) vanished. There is always a room full of people it seems, and I am constantly showing my breasts and digital pictures being taken of my breasts. Geesh! I am ready for Mardi Gras ha ha. Anyway, this chip helps to guide the surgeon to the exact outline and immediate surrounding area of the tumor. This helps them to be precise in taking out the entire tumor and immediate surrounding tissue – as opposed to the ‘olden days’, when they just cut and hoped they got it all. At least that is my understanding of the whole procedure.
On December 21, 2017 I had out patient surgery to do a Sentinel Node Biopsy and remove the tumor. It was explained that a dye is injected under the nipple, it then travels to the lymph node(s), and pools in the node(s) that cancer would travel to. Up to 3 nodes would be removed, (6 were taken) whichever ones the dye pooled in, and sent to the lab for a biopsy. I went home and had a follow up appointment for a 2 weeks later.
The doctor said the surgery went well, my margins were negative, but that there was an LVI – Lymphovascular Invasion in the left and right margins. The blood vessels involved, which there were many in the right margin, only showed up under a microscope, they were not visible to the naked eye. He said that he really wasn’t sure what that meant at this point and had not seen this specifically before. I didn’t quite understand it all. Negative margins, positive margins, which was it? I trusted the doctor, his credentials and experience are amazing and quite extensive.
He explained that he wanted to confer with other doctors and 2 experts in the field before making a conclusion as to additional surgery to remove more of the breast. Wow.. Ok, that sounds great and I’m so glad he is the type of doctor to do this. He called me a few days later, telling me they felt there was no need to do any further surgery. However the test results were not back yet, it usually took about 2 weeks, probably the holidays had slowed things down. I just assumed he meant, the pathology report. My next step was to see a Medical Oncologist.
I got a call a few days later from the Oncologist’s office, they said that my OncoType DX test wasn’t back yet, but should be by Friday and an appointment was made. My what test? The pathology you mean? The gal said no, the pathology had been back for weeks, the OncoType DX that was ordered on January 5 . Who ordered it? Why wasn’t it ordered until January 5? Now I was really confused. I had thought all this time we were waiting on the pathology, which I thought it rather odd that it could take 2 weeks but what did I know? Unfortunately, the 2 weeks came and went, quite a few times!
The Oncologist explained the OncoType DX test to me. It is a genomic test that analyzes the activity of a group of genes that affects how a cancer is likely to behave and respond to treatment. 21 different genes are tested. In other words, it is rather important in the grand scheme of things. It is especially helpful in deciding on and determining, treatment and how effective Chemotherapy would be. A Recurrence Score is assigned to the cancer. There are 3 ranges of results. The lowest meaning risk of recurrence is low, the benefit of Chemotherapy is likely to be small and won’t outweigh the risk of side effects. The middle score means intermediate risk of recurrence, but it is unclear what the benefits of Chemotherapy will be. The third, high risk for recurrence and benefits of Chemotherapy outweigh the risks of side effects. My hope of course was to be in the first category! Hopefully the results would be back soon.
In the mean time, he talked about while my margins were clear, there were a large quantity of the blood vessels that have cancerous cells (the LVI). Again, my margins are clear or are they not? I still don’t quite understand this part. The tumor was a High Grade tumor, the cancer is fast growing and aggressive, the cells are dividing very quickly, it had spread to other areas of the breast, but had not metastasized. So, the cancer is, Stage 2 (mostly because of the size, 3.0 cm) , Estrogen-Receptor Positive, Invasive Ductal Carcinoma. It is Type 3 meaning there is a high chance that cancer will return, or spread, elsewhere in my body. I thought cancer only travelled by way of the lymph nodes and since it had not gone there, I was “safe”. Since it is in the blood vessels, it can, and could be, travelling anywhere.
He discussed my options for types/combinations of treatment. The duration of treatment and how it worked. He gave me some printed information on it. Based on all of this, and my age, he felt that Chemotherapy followed by Radiation and then Endocrine Therapy was my best choice for the best outcome. He told me were it his mother, as he is often asked, this is what he would tell her to do.
I was very overwhelmed! He said let’s meet in a week, the test surely would be back, and it would give me time to ingest all the information and have questions for him. Sounded like a great plan to me. Oh and might I add, as with the surgeon, I told him, that whatever was going to be done? It all had to be over with by May 17 because I was leaving for Italy! He, like the surgeon, assured me that Italy would be an option. Even if I had to start Chemo, I would be able to go, if we had to, we would stop for 2 weeks.
My next appointment came and went – no test results. It was postponed another week and again, no results. However the doctor wanted to see me. He explained again how the different therapies worked, presented statistics on my type of cancer. He’d done a test they do in Europe as the OncoType is cost prohibitive there. The results were in line with what he suggested on my first visit. He really didn’t think my OncoType would come back in the lower range based on everything he knew so far.
He told me that I needed to decide over the weekend. We needed to get started hopefully the following week. He said it was my decision to make and no matter my decision, he was behind me 100%. I had known all along that Radiation would be part of my therapy because of the partial mastectomy. But now, what I was really deciding was if I would do Chemo or not. I had 2 days to decide.
Wow… talk about an agonizing weekend. So much information to wrap my head around. So much I didn’t understand. So many questions I still had, yet didn’t really know how to ask. Were some of them important in my decision or just something I wanted to know for myself? It’s the weekend, how was I going to ask any of these questions? I went back and forth many times in my decision. I prayed about it. I talked with some of my Support Peeps. I vented, I rambled. I looked things up on line despite knowing that I shouldn’t. 1 of the drugs I’d be on, could interfere with Cognitive function. Whoa! I don’t think I can afford for any of that to be worse. Chemo is nasty right? Did I really want to go through all of that? What about the amount of time I might miss from work being sick? The doctor showed me statistical percentages. 1) Radiation only; 2)Radiation & Endocrine Therapy; 3) Chemo, Radiation and ET. My odds of the cancer returning elsewhere were reduced by 13% if went with choice 3 as opposed to choice 2. That wasn’t very much. Not to mention, no one really knows. No one can say for sure. Would it be stupid to not do Chemo? Would I be in my right mind not to? In the end, I decided that it wasn’t right for me. Quality of life, over quantity of life, is more important to me. I felt good with my decision and I was quite positive about this whole cancer thing. So far I didn’t have reason not to be.
I spoke with the Oncologist about what specifically I was concerned with and that I didn’t want chemo. He told me it was a reasonable decision and that I’d be contacted by the Radiology Oncologist for an appointment. The OncoType DX was no longer necessary as I’d made my choice.
They called, I was told it would be about a 2-1/2 hour appointment with the Radiation Oncologist. Say what?!? What in the world would take so long? I’d be getting a lot of information that day and meeting with different people involved with all of this. One of my Peeps offered to go with me.
It was finally brought to my attention that Blue Cross was not authorizing the OncoType DX test. The day before my appointment with the Radiology Oncologist, I got a letter from Blue Cross stating that since chemo was not an option, and the test had been done previously, they would not approve it again . None of this made any sense at all, but at this point, it really didn’t matter. Except of course, it was very frustrating and I wondered where they got their information from.
My appointment was 3 hours 15 minutes long! Overwhelmed? Ha! That doesn’t even begin to explain it. Not even close! Thank goodness Richard was with me. He diligently took notes and asked questions. He helped me answer questions when I struggled to get anything out of my brain. I had been sent a 9 page form electronically to complete before my appointment. Very in depth, specific medical questions. I had included a full page of the Neurological problems I have relating specifically to Cognitive Function.
The first thing the doctor said to me was, ‘I’m not sure how I feel about treating you.’ She explained that she was very concerned that I was basing my decision (of no Chemo) without having a full understanding of my situation or having been presented with all of the information. She said especially given my telling her (in my list ) that I have trouble processing information and problem solving. She asked who my Neurologist was and when I said I didn’t have one, (mine of 32 years retired) her response was, “well, you WILL get one because who is going to treat you during this if something happened, which it well could?” Not having a Neurologist through all of this was not an option as far as she was concerned. She asked me a few questions about what kind of doctor I would want, called in one of the, as they call them, Healthcare Team Members, and told her to make some calls right now and find me some choices for a Neurologist. I have an appointment with a specialist in Multiple Sclerosis.
My initial reaction to all of this was a very negative one. Who did she think she was? What does she know about me? I didn’t need to get another doctor right now, I have enough going on. I was very comfortable with my decision to not do Chemo. How dare she question it? (all of this was internal, I didn’t say any of it out loud.) She then brought up the OncoType test. Oh please, there’s that damn test again! I’d had it with that whole mess. I told her about the letter I got and she was livid. She was so angry, asking where in the heck they got their information from, she showed me the reports from the surgeon and Medical Oncologist stating that the results would be needed to determine the use of chemotherapy, why in the world would they say chemo was not an option? why do they think the test had been done previously? did I have cancer before this? that they obviously had me mixed up with someone else. She was SO angry. She asked to see the letter, grabbed it out of my hand and said she was calling Blue Cross right now.
She came back in about 10 minutes and said they didn’t want to even talk to her since she was not the ordering doctor, but told them, that was NOT an option. They would talk to her and they would do this test, that it was needed and Chemo was an option. She said she would stay on them and get back to me the next day. Well, OK then. Maybe I misjudged her? Nothing held back, take charge, genuinely concerned, you know you’re in good hands, kind of doctor. She was funny on top of it, and very easy to talk to as I would discover over the course of the appointment. The kind of doctor you want in your corner, Doc Z as I call her.
She apologized for her outburst and then explained to me why this test was so important and why it was especially important for her treatment for me. There were different ways in which she would treat me based on this test. She explained a little how the radiation worked and how/where it would be used.
Over the course of the appointment, I saw an Oncology Nurse that explained how chemo works, the side effects, the process etc. There seemed to be a flurry of people in and out ending with the doctor coming back in for an actual exam. More digital photos too! She ended with telling me someone would get back to me the following day with those test results.
I wasn’t really sure how I felt when we left the office. Richard asked me and I said I was OK. But over the next few hours, and over night, as things sank in, I really went down hill. I think it was a combination of everything that I’d been dealing with for the past few months. My having decided to forgo Chemo, only to now, be put back in the situation that my decision was not over, I was going to have to go through that process all over depending on what the test would show, all of this just being way more than I could handle. I hit rock bottom. I can’t really explain how I felt now other than I knew it was a very, very dark place. By morning it was worse if that was possible. I didn’t care about anything. I was lost. I felt helpless. I was defeated. I knew that the slightest thing would send me crashing over the edge. A coworker asked how I could be at work. Honestly, I didn’t know what I was doing there either. I was just going through the motions. I was incapable of making even the most mundane decision at that point. One of my Peeps asked if I wanted to go to dinner that week and I told her I couldn’t begin to say yes or no. I had nothing left to process something even that simple.
About 10:00 A.M. I got a phone call from the surgeon’s office telling me she got a call from the Lab and they would do the test. Ah ha! Doc Z had lit a fire under them! It would be about a week however for the paperwork to be reversed. It wasn’t even 30 minutes later that she called back, telling me the test was done, the Pathologist had just called, and she was sending the results to Doc. Z. Ok, so a really BIG fire had been lit! Obviously they had in fact done the test already, they just wouldn’t release the results without authorization from Blue Cross (Doc Z had suspected as much in my appointment). Either way, it was done. Now, was I happy? I wasn’t sure. I had already agonized over this decision. I didn’t want to go through Chemo. This damn test could very well make me question all of that once again. That overwhelming feeling of dread and hopelessness came crashing back
I didn’t have much time to contemplate any of this because 10 minutes later Doc Z was on the phone. She said she had good news for me. The test was back and my score was in the middle group. This made her much more comfortable in treating me without Chemo, although, she still recommended it. I broke down. I couldn’t help it. It was instant relief. We spoke for about 10 minutes and when I hung up I was a different person. I was so grateful to her for going to bat and fighting for me the way she did. She told me that was her job to take care of me. I said no, that wasn’t what all doctors would do. She told me I’d get a call shortly from scheduling. Yay, finally something is going to start happening. I’d begun to wonder as so much time had gone by. I began to wonder if I should even care about any of it. All this talk of ‘invasive’, ‘fast growing’, ‘aggressive’, ‘spreading’; it couldn’t be that bad since there didn’t seem to be any hurry in doing anything about it.
2 months to the day, I started my Radiation Therapy. I go Monday through Friday for 4 weeks before work. After that, I will return to the Medical Oncologist and the Endocrine Therapy will be the next step. Italy is safe! Although, I will be dealing with the possibility of extreme exhaustion as one of the side effects. I’m told it will be throughout the course of Radiation and possibly into the following months.
I am, and will be, doing some Rehabilitation for my left arm and breast that involves the muscles, range of motion, working on the scar tissue and keeping a watch for lymphedema. I started going to the gym a week before treatment in order to build up strength that in theory, will help with the exhaustion. I remain very positive as I have been since the beginning. It has made me look at my life differently. It has made me question “my path” if you will. I have my Support Peeps. I am in great hands with my doctors. I will be stronger for this. I will learn that taking what life gives me and making the best of it, is a valuable tool. I am constantly learning new things about all of this. Doesn’t mean I’m not going to complain along the way, however, hopefully I will be positive more often than negative.
The reason for the picture at the top of the page? When I am at the ocean, I am at peace. It makes me feel alive. It is my Happy Place. It is my Healthy Place. I am at peace with Cancer. I know there will be trials, I know there may be difficult times ahead. I have told each doctor the same thing; MS has tried numerous times to take me down and so far, it has not been able to. This? This Cancer thing? It is just a small bump in the road. I got this!