On February 23, 2018 I was told I had cancer. The last year has been hard, changes in my vision will make the rest of my life a challenge, but along with the hard has come many, many blessings. I have learned and grown so much, and have had some incredibly sweet experiences in my relationships with others and in my relationship with God. Yesterday marked exactly one year ago that I had my surgery to remove the tumor. I had been thinking of writing a summary of my year ever since January, but kept putting it off. I gave myself the deadline of March 12, my main surgery date, and am only one day late:). It was much more emotional for me to go back through the information and compile my thoughts than I thought it would be.
2018 Brief Medical Summary
February 2: Surgery to open up my lacrimal sac which appeared to be clogged. This came after discovering a small lump on the side of my nose near my eye. I had been having watery eyes for about 7 years, but kept being told it was nothing. A biopsy of the tissue was taken and sent in for evaluation.
February 23: Informed I had a malignant tumor in my right lacrimal sac (squamous cell carcinoma). Immediately referred to UC Davis Medical Center
February 27-March 6: Multiple Appointments and scans at UC Davis in Sacramento
March 12: Surgery to remove the tumor–7+ hours in the operating room
Dr. Farwell, head of ENT at UC Davis went in through my nose and the corner of my eyelids to remove the tumor, surrounding tissues and nearby bone. A lot of bone was removed and titanium plates were put in my face and around my eye to rebuild the socket and reconstruct my face. They cut the muscles holding in the right eyeball and removed about 1/3 of my upper eyelid and ¼ of my lower eyelid. A large hole was left, so Dr. Tollefson, my plastic surgeon, cut a section of skin from my forehead, flipped it across my nose and sewed the end to cover the opening left after removing everything that needed to be taken out. The pedicle, or skin flap/graft went across my nose so the skin still had an active blood supply. The surgeons were thrilled with how well the surgery went and continue to be thrilled that I do not have double vision and that I have healed very well–truly a miracle! The margins were all clear! The pictures below show me a couple days after surgery. At this point I had not idea what it looked like under the bandage. The pic below that was week or so later at the office when my stitches were removed and I saw the pedicle (which I eventually named Lowly the Worm) for the first time.
April 4: Outpatient Surgery to divide the skin graft over my right eye. I don’t have any good pictures, I think I was still mostly using an eye patch in public at that point. He split the skin that was grafted to start reforming the nose-side area of the eyelids and he also thinned out the thick forehead skin.
May – June 12: Radiation Therapy at UC Davis. Daily, Monday-Friday. Pictures: I would get bolted down to the table every day with the head mask. Radiation was really hard on my skin, and it took many months to get it clear. The bottom picture is of me and another patient I met in the waiting room. We both finished our treatments on the same day. I treasure the relationships I made there, she especially was a great inspiration to me.
The staff in radiation was incredible! They were always so happy and upbeat. They worked in the basement with no windows and saw patients all day who were going through tough things, but they were always happy!
9 July: Outpatient Surgery to remove the pedicle from the skin graft. The picture below was taken about a month after at Aaron’s wedding. Lots of makeup, but that is about as far as my eye could open. It was so GREAT to say goodbye to Lowly the Worm!!
November 13: Outpatient surgery to further open up the skin graft to improve vision. The doctor kept the threads long and pulled away from the eye so I wouldn’t have any irritation from the ends of the stitches. My eye really opened up a lot more, and the swelling continues to improve.
Prognosis:
A malignant tumor in the lacrimal sac is extremely rare. There are only 300-500 recorded cases according to an article I read from November 2010. Because of that, statistics just aren’t very accurate. What statistics there are, show that this type of tumor is most likely to occur between the ages of 40-50 and is very aggressive. The mortality rate is about 38%. Of course the earlier it is detected, the better chance for survival. Thankfully it was caught fairly early and the cancer had not spread beyond the lacrimal sac. I have great hope for a long life!
After Effects:
I have to do nasal rinses daily for the remainder of my life. No big deal.
My eyesight is another story. I definitely had decreased vision for a while, but now feel that it has come back to similar to what it was before. Unfortunately, my ability to read or use my eyes to see details has decreased significantly. I don’t think the sight has changed so much, but since my eye doesn’t drain any longer, I almost always have tears sitting in my eye, which makes up close vision blurry-distance is fine for the most part. If I lay my head down, it will drain immediately, but then it becomes dry and irritated, causing major discomfort. The more drops I have in it, the better it feels, but the harder it is to read/see details. Ointment gives immediate relief, but it is very difficult to see and to remove later and seems to aggravate the pain the following day, so I use it sparingly. Screen time also increases the discomfort in my eye. I have a really cool one-eyed goggle that I can wear when it is really bothering me;). On the other hand, I have two eyes that both work!!
The other difficult side effect is dryness in my whole body. I have felt for years that I don’t assimilate water as I should, and have always had chronic dry lips, and heels, but now it is worse and I have to make a concerted effort to drink water all. the. time, which may seem like a small thing, but it is a burden, especially on busy days. I set a timer on my watch to remind me every half hour to drink water. Otherwise, I feel like I have pretty much gotten back to normal. I no longer need naps and my strength is returning.
The Good Part:
My experience with cancer has been quite a blessing in so many ways, and I want to share a few of the sweet experiences I have had. Below are a few excerpts from my Caring Bridge blog.
March 17: Amazing Foresight or Divine Direction?
In January 2018 I had the random thought that I should take a trip to Utah to visit my parents and kids. After some discussions on dates, I finally booked my tickets. It ended up being perfectly timed between finding out I had cancer, the pre-op appointments and the actual surgery. I couldn’t have hand-picked better days had I known what was going to happen. It was such a blessing to be able to go and spend time with my family, especially my kids who needed some comforting. As soon as I found out that removing the tumor would change my face, I said how sad I was that we hadn’t done a family picture at Christmas. Larry made arrangements to fly to Utah for one short day just so we could have pictures taken as a family.
March 3: Feelings of Peace
Two days before I found out I had cancer, I went to the Sacramento Temple with my mother-in-law. It was a normal day, and I didn’t really have anything special on my mind. While there, I had some overwhelming feelings of peace and love from God. I just felt really good and happy. The next day I got a phone call from the ENT clinic telling me I needed to come in and talk to the doctor. At that point I was pretty sure I would be told I had cancer. Because of the experience I had on Wednesday, I was at peace and I knew I was not alone.
Those feelings of peace continued to stay with me throughout my whole treatment and recovery. I also had plenty of moments of feeling sorry for myself, but I remember the feelings of peace much more.
April 2: God is aware of ME!!
One day I hadn’t slept well the night before, and then I overdid it, and so I was feeling weak, and I was bleeding more from the surgery site. I was exhausted and a bit emotional. We were in bed and I was kind of crying and telling Larry that I still need people’s prayers. I had felt such amazing strength from them to begin with–in a way I hadn’t thought possible. I told Larry, “I think since I have done so well, everyone has quit praying for me, and I still need their prayers.” Right as I vocalized that, I got a text from my sister with a simple note that said, “We’re still praying for you.” I found out the next day that she had already gone to bed and was asleep, but woke up, sent the text, did a couple of things, then went right back to sleep. It was such a sweet reminder to me that Heavenly Father is completely aware of me, and that I still have a ton of people praying for me. The next several days I had many messages from people telling me they were still praying for me. THANK YOU SO MUCH for your continued prayers!!!
April 27: Hope is Powerful!
I can’t sleep, and finally got out of bed to write this. It isn’t a worrisome, fretting lack of sleep, rather I am just filled with gratitude for the amazing blessings I have been given! Since all this cancer business started, I have been so incredibly blessed in countless ways. I have had medical miracles, and amazing healing. Every time I go to the doctor, they seem genuinely thrilled with how things have turned out and how I am healing. I have also been blessed with an outpouring of love and faith from hundreds of people. I am so blessed to have the support of so many people I love!
I will admit though, the last few weeks have been a bit more of a downer than what that last paragraph sounded like-I have felt some discouragement and fear…But tonight, I am filled with hope. Hope that everything will continue to go well. Hope that I will feel the peace that can only come from Christ. Hope that despite what the doctors say could happen from the radiation, I will actually respond well, and have great results despite the toll radiation will have on my body. I have hope that because of faith and prayers, Dr. Rao will know exactly how much radiation to give me, and precisely how to angle it so that I can keep my sight and not have excessive damage to my skin. The most important hope I feel is that no matter what happens, I can handle it! It is going to be okay, and I will be okay. I have the Lord on my side and by my side. I have great plans for things I am still going to accomplish in my life, and they will certainly be much easier to fulfill with two good eyes, but if I have to adapt to one good eye, that will be okay. Hope feels much better than fear and despair!
May 7 (After one week of radiation)- Look Forward
…Another thing that helped me get through the week was a thought from church last Sunday. The Sunday school lesson was about the children of Israel and how they kept looking back to Egypt, which made it hard for them to move forward towards the Promised Land. I suddenly had an ah-ha moment. The children of Israel kept looking back thinking that what they had in Egypt had been good, and maybe the best they could have, but the Lord had something way better ahead for them—a promised land! I realized it would be a big stumbling block for me if I kept thinking and “looking back” on the way my life used to be. I have to look forward and move forward and trust that the unknown future can be a blessing too.
As I was pondering this thought yet again this morning, I remembered something my brother wrote to me right after I let him know of my diagnosis. He had cancer years ago and it returned two more times. He barely survived the treatments and bone marrow transplant the last time, which were incredibly hard on his body. This is part of what he wrote to me: “I have learned…that my cancer experience has been a blessing in my spiritual life. I have had to learn to rely on our Father in Heaven and on his Son to get by. Even today, I have to rely on Their help for all aspects of my life…I have received the sweetest gifts via the enabling power of the atonement and through power from the Father. I am grateful for my trials and challenges, and I try to give thanks daily in my prayers.”
May 22- Blessings in Disguise
I learned something really awesome over the last week or so. After meeting with my oncologist and my plastic surgeon, I realized what a blessing I have been given. In a previous post I was lamenting a bit about my eye and how frustrated I am that it is not open more. At my last appointment, my doctor commented on how surprised he is that it is still swollen and hasn’t opened more. At the same appointment, he stressed how important it is going to be to keep it moist over the next several weeks so I don’t damage the retina. Radiation is incredibly drying, especially to my face, nose, eyes and mouth. I feel like I am drinking all day long, yet, I’m always thirsty.
After that appointment I got thinking more about what he said and am fully convinced that the droopy, swollen eyelids are a huge blessing and are protecting my eyeball. I used to work hard to keep the eye cleaned out so I could see better. Now I wash it sparingly so it stays closed and moist. I’ve wondered how many other “problems” I have had that are actually tender mercies and blessings in disguise.
March 12. 2019: Looking Back with Gratitude
As I reflect back to the events that happened over the last year, I am grateful! I am grateful that I had such wonderful care and that the cancer is gone. I am grateful for the outpouring of love I felt, and the power and strength that came from hundreds of people praying for me. I am grateful for my experiences! They have changed me in multiple ways and I like the ways I have changed. I have also learned that most people don’t care what I look like. In fact, it almost feels like more people talk to me now-or maybe it’s me who’s friendlier. I really am grateful for the many things I have learned and that have helped strengthen my knowledge of and relationship with God. I am blessed, incredibly blessed!
Family is Everything 