Welcome to my blog/life. I have been wanting to start this for a long time but I feel this is a good time to invite my friends and family to a place where they can read updates about what is going on. People are always asking me to update them. I always have good intentions but it can be very overwhelming.
Once upon a time
The C word...no one ever wants to hear that word especially if it's you or a loved one. I never thought that I would ever have to deal with this since no one in my immediate family ever had it. After my mother in law was diagnosed I made a long overdue appointment for a mammogram. It showed a lump that the doc wanted to biopsy just to be safe but he assured me that it was nothing. In fact, he was to be on vacation for my follow up appt and said that he was so convinced that it was fine or he definately would be there. Thankfully, Greg came with me. While we were waiting for the doc, we overheard him say to someone that he wasn't my doc and didn't want to tell me the diagnosis. The next few weeks were a whirlwind. Yes, it was cancer but stage 0 DCIS. Ductal Carcinoma in Situ which means there are cancerous cells in the duct but have not spread to other parts of the breast. I didn't need chemo or radiation. A lumpectomy or mastectomy would take away the problem. I wish he had talked to me about having a double mastectomy but I don't think that was pushed back then and so a right mastectomy it was. At the same time, I talked to a plastic surgeon to arrange a reconstruction. It took a bit to recover and for the first year or so I was on edge wondering if it would return.
10 years later and I was excited to celebrate my 10 years when I found a lump on my left breast. I knew immediately what it was. I ignored it for a month hoping that it would go away but on 10/31/16 I was told that I had a 7.7 cm mass. Jumping back on the roller coaster, I needed another biopsy and pet scan to confirm the findings and to see what type of cancer they were dealing with. The findings showed that it was stage 3 which meant it was already in my lymph nodes. The pet scan confirmed that 3 lymph nodes were affected. The plan was to start chemo and radiation to try to shrink the tumor before another mastectomy. I started the weekly "red devil" treatment. By the third treatment my hair was falling out in clumps. I know that this can be very traumatic for some but I was ok. Lauren and Emily came with me for support. Afterwards, we went to Woman Supporting Woman to try on some wigs. It felt so good to be silly and laugh with my girls.
Unfortunately, the red devil wasn't doing its job so he stopped it early. I still had radiation and in May, I had my 2nd mastectomy along with 7 lymph nodes of which 3 were cancerous. After the surgery I was told that I had clear margins. Less than 7 months later a pet scan revealed that the cancer had metastatized to my liver, bones & chest.. It also showed the type of cancer I had which was er+ pr+ Her2-. Which means that it was estrogen driven and the most common. I started Verzenio, along with faslodex (2 huge needles in my butt) and that worked for 2+ years. The side effects were hard mostly stomach issues and fatigue but I was hopeful that everything would be fine.
Feb 2020 my CT scan showed "likely new liver lesions suggestive of disease progression" and vague nodules in my lungs and in my bones. I then started Xeloda and ending in Dec 2020. What I read and who I follow on the cancer websites many doctors don't base their treatment on the 2 cancer antigen levels. Mine have been spot on every time. When the markers go up I know that there is progression. This was the case with Xeloda. The side effects were hard - neuropathy in my hands and feet, hand and foot sores that made my extremities very painful, I was continually greasing them. When Xeloda stopped working in Nov 2020 a port was reinserted. I was so eager to get that out but should have waited.
I had a pet scan on Dec 1 which showed progression and revealed a mass in my liver that was10 x11cm which is pretty darn big,in addition to 4 other masses and 2 more in my lymph nodes. Dr. E showed me how large it was on the scan. . I got word that my Doc was leaving the practice which I was happy about since his communication and bedside manner was awful but where did that leave me? I heard there was a woman doctor that I tried to get into but she had too many patients as it was. My doctors last day was the end of Dec so I decided to check into Johns Hopkins. Dec 7, I had a consultation with a doc at Johns Hopkins. He was straight with me. He looked over my treatment plan and said that he would have prescribed all of the same meds. He said that there wasn't any reason to travel to Hopkins. He also said that my body has been through so much and so the treatments will become less effective. He also said that at this point I needed to choose between quality vs quantity of life. Between my poor pet scan and Hopkins consult I was pretty down. Wait...I guess I always knew this day would come but no one said that. I started to panic and felt like I wasn't going make it for the new year. So many things to look forward to! Brian and Laetitia were getting married, we have our bi annual trip to Mexico in a few weeks, I was taking the girls to see Mean Girls, and I wanted to see my 60th birthday. My doctor didn't advise me to take the trip, just in case, but all of the doctors and I decided to go and made the best decision. No, I couldn't keep up with everyone but it was ok. It really boosted my moral. Completely relaxing and enjoying my family and that's all that counts. Making memories.
When we got home I got to meet my new doctor since the other one left. You know how you don't realize what you don't have until you get it? Well, that was Dr. D. She actually sat with me and went over all of my blood work and genuinely listened and cared. She made a plan for treatment but couldn't get in the database to see if my hormone receptors have changed. If so, the treatment may change. I left the office and she called me! Wow, I was impressed. My other doc didn't even check into that because they indeed did change to HER 2+. She explained that even though this is more aggressive type of cancer, there were targeted treatments specifically fought the cancer cells. She was very excited to share this with me. Her treatment included 2 treatments together. In my cancer support blogs people have been on these combo for years. I was again very hopeful. Wait! get back on the roller coaster. Through my CEA (cancer blood work) and a pet/ct scan it showed that this miracle combination that so many people were on and continue living their lives, did not work for me. Dr. D came in very frustrated as well and kept saying, "I'm so sorry". I asked to see the scan and, of course, she would have shown me but she hesitated and knew immediately that the mass grew much more. We talked about other options but I wanted to go back on Doxil since it seemed to be working before. But...in chemo world I had maxed out. Which means I have a higher chance of developing a heart condition. I was willing to take that chance and so I have to go regularly to get an echocardiogram.
I had 2 treatments on Doxil but my blood works (CEA) levels rose again. I have my next appointment on Thursday, to discuss other options.
Whew, that was long and I'm sure that most of you tuned out but this not only was for you all to stay in touch and what was going on but, more importantly, it is for anyone who may or know someone going through this. And, of course, for myself, to look back and remember everything I've been through and as the Bible says in Philippians 4:13 I can do all things through Christ who strengthens me.
Thank you all for your love and prayers .
Love you mom💕💕
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