Bayley is Blind

There, I said it, Bayley is blind and he doesn't have eyes anymore. It has been heartbreaking in every sense of the word. Since last spring he has not been himself; limping, tiring easily, not wanting to walk as far, etc. He started being tested for various things at the vet over the summer; lyme, tick borne illnesses, heart issues, arthritis. . . A few weeks before Christmas he got so much worse. He didn't want to eat, go outside or really move from the bed. Off to Angell Animal Medical Center ER. After many more tests it was determined he had contracted 2 tick borne illnesses. He started on antibiotics for that, but things went from bad to worse when he started bumping into things! The doctors determined he had glaucoma and the pressure in his eyes was sky high. He was in the ICU for 4 days while they tried to get it down with drops round the clock. He came home a few days before Christmas with a grim prognois for his vision; they did not think it would return. He came home weak and bumping into everything, including the Christmas tree. We gave him antibiotics for 4 weeks to battle the tick diseases, pain medicine and 6 different eye drops at different times throughout the day. High pressure in the eyes is painful. He did bounce back and was up to a mile a day walks in January. Last week we made the difficult decision to have his eyes removed, to prevent any further pain from the presure in the eyes; his vision was totally gone anyway. It is a week later and he is a trooper. He has that silly cone on, which is hard to get around in for a blind dog! And it distorts sound, so he is a little disoriented. But the past 2 day he has walked around the block and he is also eating well. I find it sad to look at his little face and see bruises where his eyes used to be. Slits that are swollen where he used to look at me. I know dogs have stronger sense of smell and hearing and he is adapting, but it is still heartbreaking for me. I pray for him to feel better.

Bayley_the_Wheaten

Bayley is our Soft Coated Wheaten Terrier, he is 4 already. The above title is his instagram handle, yes he has an insta! He is spoiled in every sense of the word. I tried not to spoil my kids, but this dog is spoiled. He is always on the couch or bed. He pretty much gets whatever he wants, treats, pets, rubs, birthday parties, playdates, etc. Of course he is well fed and gets lots of exercise, walks. Pretty much, "What Bayley wants, Bayley gets". In all serouisness, he is the best! I always thought I did not want a dog and I did not really enjoy them. But post cancer, I thought how bad can a dog be, it can't be worse then cancer. So in June 2017, we picked up Bayley in CT, all 5 pounds of him. He had piranha teeth as a puppy, and he was not afraid to use them. (his fangs) But he grew out of that and into a lovely dog. He has his moments, barking, killing rabbits, etc, but he is a love. He has helped me in so many ways and has made with my anxiety, PTSD from cancer easier than before. He has me laughing, walking, running around and petting him feeling better in moments. I thank God for Bayley as an addition to my family!

College Drop Off

We drove home in a hurricane today from Cornell; dropping Lizzy off for her sophomore year at Cornell! It was so nice this year, the only Covid restriction was to wear a mask indoors. (Much better than freshman year, "drop your child off at the curb with 2 suitcases and drive away.", they said.) This year, we were able to go in the bookstore, the coolest library, walk around campus, move her into her townhouse! I love the townhouse and the bustle of the students and parents on campus. Seeing everyone walking around and going into buildings was exciting. :) Then why do I feel like something is mising right now? Because I am home and one of my children is 6 hours away. I know she will have a great year; she has great roommates, boyfriend, friends, classes, clubs, a job; but this letting go is one of the hardest thing I have done. It's part of life, I know, but I miss her. And I feel guilty saying that because people in Afganistan are trying to get their families to safety, their lives depending on it! So I do feel thankful, I know I truly am. But maybe I'll still let a tear or two run down my cheek.

Covid-19

I want to start by start by remembering all who have died from this terrible virus and all who are sick and struggling. And also their families, and all our essential workers. My family and I are fortunate in that we have a homes, enough food, work from home jobs and our health. But sheltering in place is still such a change from regular life. I feel as if it makes mental health issues worse, for sure. I just feel sad all the time. I like looking forward to things, and there isn't much right now. I know it will get better, but it feels hard right now. I think it really hit me this week with schools closed until the end of the year, that graduation is cancelled. Maybe there will be something in August,but the whole thing has hit me hard. I am trying to be hopeful, but many days that is hard. Are others feeling like this?

Update

Hello blogworld! Time passes so quickly. Frankie is in 8th grade and Lizzy is a senior and applying to colleges. I am going to revamp the blog a bit and post about us. :) Frankie enjoys swimming, violin, robotics, game design and videoing our Wheaten Terrier, Bayley. (More about him in another post). Lizzy plays her violin in 2 orchestras, runs cross country and track and is the captain of her science team. I can't believe she is applying to colleges, we may know where she is going before Christmas! I am working as a librarian and John is busy with his software management job and business travel.

Zometa

Interesting title . . . I went to my oncologist yesterday for my 3 month blood work and checkup. Everything’s fine. So why am I anxious now? Zometa. A new infusion drug I need, to prevent reoccurrence and help with bone loss. It is given as an infusion every 6 months for 2 years. So it’s only 4 times and it’s a 15 minute infusuon. Doesn’t sound too bad, right? But after years of cancer treatment and surgeries, it sounds bad to me. It comes with side effects, most people get flu like symptoms for 2 days after. I can deal with it, I just really don’t want to!

Wow!

Wow! I don't update too much! Life is better now than it has been for the past 2 years. I would love to get back into blogging again. I can't say that it won't vear towards cancer, but I can talk about other things too. :) Some days are hard still and some are easier, but overall days are better. Nights, on the other hand, are hard. It is hard to not sleep night after night after night. But hopefully moving in the right direction there too. The kids are doing well and getting so much older; independent, happy, busy, active. John and I are enjoying every minute with them, as busy as the weekends get! And Bayley, our 3rd child/ dog is a handful, but sweet and lovable. I think since I am past the most intense part of the cancer storm, I will be able to write again. Stay tuned!

Poem

Cancer is like a rainstorm; sleet, downpour, snow, hail and drizzle. Never knowing the next place it will take you. Unexpected, shocking, the pit in the bottom of your stomach that makes you feel sick. The feeling that you are always going to be in pain and always have to worry. Fear, uneasiness, dread, queasiness, sinking feeling. When will I feel better? When I do feel physically better, when will the turmoil and fearful emotions go away? Will I be the same? Will I look the same? I will have a new normal to get used to. Life will be different as a cancer survivor, good days and bad days. I guess I will get used to that with time. Moving forward, volunteering and helping other cancer patients. Survivor, warrior, kicking cancer to the curb.

The C Word

I was diagnosed with stage 3 breast cancer back in August. I haven't felt an overwhelming need to write about it until now. I had a lumpectomy and all my lymph nodes under my arm removed in September. The recovery was longer than I thought and the results came back that the margins were not clean. Since it had spread to the lymph nodes, I needed chemo, which I started in October. Every other Thursday for 8 rounds. I felt some side effects, but got through it and had good weeks "in between". I had a re-incision surgery in February to get the rest of the cancer, but again margins were not clean. So two and a half weeks ago I had a mastectomy. I'm not going to lie, it has been hard. I was scared going into it, not fun thinking about losing a breast, a part of your body. The surgery went well and I woke up in some pain, but helped with pain meds. The two drains under my arm were painful and getting out of bed took a lot out of me. Now, two weeks later, I have much less pain; more soreness and heaviness in my breast. There is a tissue expander there, which will eventually be swapped for an implant, (it doesn't end). The one drain that is left still hurts and tugs the wrong way and prevents me from doing much with my arm. So I just sit here and am bored most of the time. I feel hurt, frustrated and emotionally drained. This mastectomy and recovery has been the hardest part! I really just want to get my life back. It is such a process; the reconstruction surgery happening sometime next winter. People say that they learn so much from having cancer, I haven't learned a thing, except that it sucks! I've had enough other things in my life, that I don't need anymore life lessons. I feel very deeply for others and try to care for them. I want to be better and enjoy life and help other people again. I still have radiation, reconstruction surgery and ovary removal surgery to go. And 3 medications with all kinds of side effects! I think after radiation, I will feel a little more done and can hopefully enjoy the summer. I dream of the beach and pool and relaxing! Thank for listening. A few resources I have found helpful: www.dana-farber.org/zakim

NOAH Bowl-a-thon 2014!

What a great bowl-a-thon this year! We had 10 families with albinism come, and many of our family and friends; over 90 people all together, our biggest turn out to date. We were also privileged to have the president of NOAH, Mike McGowan, attend, as well. Everyone enjoyed a full 3 hours of bowling, pizza, desserts and arcade games. It was wonderful to meet so many new families and see old friends. I also enjoyed introducing the families to each other, and seeing everyone's joy! Frankie loves the bowl-a-thon each year and was happy to get to know everyone! Thank you to all who supported us!