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!

My Heart is Walking Around Outside My Body

"Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body." Elizabeth Stone I relate to this often! Having kids in so rewarding, but can be very challenging when your kids are hurting. Lizzy recently got fitted for a back brace for Scoliosis. We found out back in October that she had it, and she received the brace in the beginning of January. She has been doing remarkably well! I, on the other hand, have had a hard time. Just finding out in the beginning was difficult. Now that she has it, and I am the one who has to pull the 3 straps tighter around her as she says "Ow", I find it even harder and it makes me sad. She has started sleeping in it and is almost up to the 18 recommended hours a day. It will probably be a year to a year and a half that she has to wear it, but it is hard to see your child in discomfort. I know there are kids with so much worse things, but it still is hard for me. But I am proud of her for how brave she has been and how good she has been about wearing it!

Hot Chocolate

Frankie had a session with his O&M teacher today. Cold as it was, they bundled up and walked from Starbuck's, crossed at the crosswalk, (using his cane) and walked to Dunkin' Donuts. They came back to meet Lizzy and I at Starbuck's to order hot chocolate. Frankie used his monocular to look at the menu boards; first finding "tea" and then "hot chocolate". I was struck by a few things. First, he was able to read the words on the menu, yea!! Second, he needs the monocular to see the menu. I just had never thought about him going into Starbuck's when he is older and having trouble seeing the menu. Of course, it should be obvious to me, but I just never thought about it. Sometimes there is just so much to think about it is overwhelming! He did enjoy his hot chocolate as he gulped it down.

Happy Graduation Lizzy!

Wow, today was a big day! It started out this morning in Frankie's 1st grade class, with a slide show of their year, popcorn and awards for each child. Of course it was set to music, which always makes me tear up. What a great year he has had with Mrs. G., especially learning to read!! For the awards, Frankie got "best listener"; he is such a good, easy going kid! In the afternoon, we attended Lizzy's moving up ceremony from 5th grade to middle school!! Time flies so fast! They sang some beautiful songs, each of the 3 5th grade teachers spoke and the certificates were given out. A slide show capped off the event, more tears for me. : ) To see the pics of them in kindergarten and now, how much they have grown. Lizzy has grown into a young lady who is smart, kind and loving! It was a wonderful ceremony and day, topped off soon with dinner out to celebrate!