It’s been 17 months today since our total gastrectomies. We’re both doing great and loving life more than ever! Last time we updated, I was about to undergo a prophylactic total mastectomy. As you may recall, Jessica wrote that I had several suspicious spots show up on a breast MRI in July. The doctors then ordered a mammogram and an ultrasound with biopsies. The mammogram didn’t pick up anything suspicious, but the ultrasound showed even more spots that the doctors were concerned with. All of the post op biopsies came back benign, so even though the doctors encouraged me to go ahead with the procedure as a precautionary measure, I wasn’t too worried that they would find anything in the pathology. On August 15th, my doctor called me with the pathology results. My right breast was completely clear and all pathology was benign; however, my left breast was a different story. She explained to me that everything was still in the precancerous stages, but that I had a couple of different issues that most likely would’ve turned into cancer. I had Multifocal Lobular Carcinoma in Situ (LCIS) and atypical lobular hyperplasia (ALH). I also had fibrocystic changes including stromal hyalinization, duct hyperplasia, apocrine metaplasia, and columnar cell change. Now, I’m not exactly sure what most of that means, but my doctor keep saying, “I’m just so glad we decided to go ahead and do the surgery when we did.” I am too! She couldn’t believe that none of this had been found in any post-op testing or biopsies. I was exactly 36 years and 3 months old at the time of my mastectomy. I didn’t even realize until after surgery that my beautiful mother had been diagnosed with the lobular breast cancer that took her life when she was 36 years and 3 months old. I can’t help but think she’s had a hand in this whole process. I can’t even begin to imagine how if would feel to be my very age and diagnosed with terminal cancer. Although she lived a very short life, she touched so many people and through her death, she has saved our lives and the lives of many family members.
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| Me & Jessica at my first post mastectomy check-up! |
I had my surgery on Aug. 9th and my recovery has gone amazingly well. I went back to work at about 3 ½ weeks post op and have had very little pain throughout the whole process. I had expanders placed during surgery and started the expansion process two weeks later. I’ve had five fills so far and they have all went well. There is some burning and tenderness for a few days following the fills, but nothing unbearable. I go once a week for expansion and they add about 60 cc’s of saline at each appointment. The exchange surgery is currently scheduled for Nov. 20th. I only plan to be off work this time for one week. Throughout our journey with CDH1, the diagnosis, the surgeries, and the recoveries, the one thing that has helped us the most is knowing there are others out there like us that we can call on when we have questions, concerns, or just need someone to talk to. We have made many stomachless friends and they have helped us so much along the way. One of those friends, Mary Lemusu, also has a blog called Mummy Without a Tummy. She lives half a world away in New Zealand, but we both had our mastectomies on the same day. We have checked in on each other regularly over the past couple of months and it has been so nice to be able to communicate with someone that understands exactly what you’re going through. If you’re just beginning your journey, I encourage you to reach out to others through online support groups, Facebook, the No Stomach for Cancer website, and other blogs to connect with others who carry the mutation. Although it is a rare mutation, these groups are full of others like us that are more than willing to offer support and guidance throughout your journey.
As always, thank you for your prayers and support. Please look for our next fundraiser to help support Parry Guilford’s research in November which is also stomach cancer awareness month. We plan to do another tshirt sale with a new design. We will post that information on our blog and on the Facebook pages soon. Also, we are so excited to speak at No Stomach for Cancer’s Night of Hope at City of Hope Cancer & Research Center in Los Angeles, CA in November. Please keep us in your prayers.Thanks for your continued support!
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