A good day. Barry's first new chemo

I'm posting this blog on Saturday, but everything actually happened yesterday. Got that?

Barry went to his first new chemo treatment in the morning. Was only there for an hr. A lot less time than his other chemo treatments. He will go every Friday morning. Should be starting the new pill drug next week if it arrives next week from the drug company.

I now have a total of THREE radiation treatments. Oct. 5th is THE END OF TREATMENTS for me.

I went to the high school football in the evening. Let me tell you that I went to the game, never actually watched it. Talked all night with friends about everything. About our health, our kids and about the homecoming dance on Saturday night. I am so looking forward to seeing Tim all dressed up along with Annie for the dance. They are going with a total of 7 couples and also can't wait to see them. There were so many nice comments of everyone loving my new hair. They say I'm so in style and love the new color. Will have to post another picture of me on the blog soon. Can't wait to be able to spike it!

Approved by drug company!

Today is one of the good days. We had our building meeting today, usually held every other month. And at the end of the meeting I was recognized by the Executive V.P. Louise L. She started off by saying that she would like to recognize one of our workers. A person who always has a smile and who will be ending her treatment next Wednesday, Oct. 5. Can't remember every word she said but I was truly surprised. She is a one of a kind person, a truly caring boss who has seen me in some of my darkest moments. Her husband is also fighting this dreaded disease.
And then everyone applauded me as I got up and we hugged each other. What a special moment. Later in the afternoon I went to her office to thank her personally. She told me that of all things, that I inspire her. Can you believe that. Truly touched my heart. I explained to her that others have done the same for me including another woman at the bank called Linda E. Another breast cancer survivor.

When I went for my radiation today, I stopped to see our social worker Brenda. She motioned for me to come in to her office. She actually was on the phone with Barry. She had just got word from the maker of the drug thalidomide that we were approved for them to provide the drug to Barry! We are so grateful to Dr. Garrow, Brenda and Celgene (the maker of the drug) for giving Barry the opportunity to use this drug. We don't know if the drug will have positive outcome, but we need to try it. Barry's life is too precious not to have this opportunity.

I couldn't wait to go back to work and tell everyone the good news. After I told my dept., a new co-worker Cortney asked me some questions about my cancer and what chemo was all about. I eventually gave her one of my own calling cards that give my blog address. I told her that I have pictures of me receiving IV chemo. You see this is why I take pictures. If I can educate just one person that's great. Seeing something that one may only hear about is educating that person. Since I heard I had cancer I seem to want to tell everyone some part of my story. And when I have a chance, I try to tell smokers I know to please stop smoking. Often I tell them to come to a chemo treatment just to see the consequences. But I do realize, that I can't change people but I can still love them.

So as you can see, today is a bit brighter with this news.

This is the Amish home where Cousin Tim and I purchased fresh tomatoes a few weeks ago. I just love this area. 

Amish young'uns. You've got to love them. This is what living in Western Pennsylvania is all about. 

FIVE more boosts

And the countdown continues. Not that I haven't had any fun on my daily trips to radiation. Soon I won't have to go to work early and take shorter lunches. Wondering what I'll do with all my time...

SIX more boosts

And my personal journey will be done. It all started in March.

Barry was off tonight so we were able to see Tim play a winning soccer game.

Not much bloggin' for me tonight. Am a bit tired. Until tomorrow....

PS. Barry made the best american chop suey for dinner! Smelled and tasted so good.

Boost time for me now

Today I started with my boost radiations. I will be having a total of 8. So therefore, Oct. 5th will be my LAST ONE. Yeah. Already marked on my calendar.

Aileen: It was great seeing you today and meeting your hubby. Am glad the timing worked out that way. And as for the smile, how could I not smile when I see a good friend? I certainly have met a lot of good people these past 6 months.

I love my Sundays

Another nice day with temps in 70s. Can't complain about that.

Nothing new to report from this neck of the woods. I cut the back lawn and then took a mini nap. After the nap I took Tim to Dutch Isle for some hotdogs. Went with the intention of having ice cream but ended up just having food. For dessert, I'm enjoying the cupcakes I made on Friday. Going to make another batch this week for my radiation technicians.

I booked airline tickets for my Christmas getaway to see family on the Cape. Usually Tim goes by himself, but this time I'm joining him. I've had this planned since last year when I felt as if I needed to be there with him.

We're doing fine here. Barry even brought up the subject of where to go on vacation next year. I told him that this was positive thinking. We had such a great time in Phoenix last year and Timba has also mentioned another bike trip. Time will tell, at least we're looking to the future.

Hopefully will hear news from Dr. Garrow tomorrow that our insurance company will cover thalidomide or that the drug company will. Praying for that.

Barry's results are in..

Barry got a call yesterday from Dr. Garrow that he wanted to see both of us yesterday afternoon. Barry immediately called me. We went together at about 2:30 p.m. and were there for 2 hrs. Unknown to me, Barry actually has 2 tumors near the liver: one of them shrunk and the other grew in size. The largest tumor is 9 X 3 cm. and it was 6.3 X 3 cm. in April. The other tumor measures 3.5 X 3.6 cm. and it was 5.9 X 6.1 cm in April. Both tumors show dead cancer cells in the middle. The nodules near his lungs are about same size, small. Knowing this, our new plan of attack is to stop the flow of blood to the cancer by using the drug thalidomide which was used in the 50s but got banned later on due to birth defects. It is in pill form and is taken every day. It is now widely used as a cancer drug. We've been approved by the drug company to use it, but our insurance company has not authorized it. Next Monday, our doctor and social worker will work to appeal this decision with insurance company and also deal with the drug company for the supply. The monthly cost without insurance is $2,200.00. Dr. Garrow had done some research about Barry's rare lung cancer and has found a 52 year old man that did this treatment 4 years ago. He has actually talked to some people involved in that case. Barry has also decided to take a new chemo drug which will be given to him every Friday via IV, and that lasts only 1 hr. That'll be a breeze for him considering the other treatment was all day.
It was not the news we wanted to hear but are focused on the future right now. We continue to be strong and to walk forward. It does seem that God gives you what you can handle.

I did not post last night because I had a lot on my mind. In about 2 months Barry will be tested again. Tim knows what is happening and is handling like I expected him to. As I've said before, We Are Survivors, not complainers.

Tim was in a local homecoming parade this morning. Allowed me to see some friends. It was great to watch the parade with Jody and her parents. While I was waiting for Tim I finally met Linda, one of my new bloggers. One of her daughters always tells me she loves my Tim. So many good kids in this town. Truly a great place to live.

The three of us went to the Golden Corral restaurant for lunch. And boy was it good. Loved them smashed potatoes. It just opened this week. It was Barry's second time there this week. It's a place you can go for a good meal, not be rushed, and get in and out quickly. Geez, I should work there! Food was nice and fresh.

These are just a few of my Radiation Angels. They have so many wonderful employees there. All very caring. 

This is my pillow that I lay my head down on, with my hands over my head. They are reusable. Actually work like a foodsaver. Sucks the air right out, and to reuse: just open up the valve. Hard as a rock. 

The machine is hard to describe. Some radiation is given at this angle, and then the machine tilts to go beneath me. 

In the background, are lots of pillows for other cancer patients. 

I wanted to show you what the machine looks like. This was taken after my treatment, I'm posing. Notice my "pillow" that was molded so that my position is always the same. 

Another monitor view of me. 

This is a monitor view as I am being prepared for radiation. When I am being treated, all leave the room except for me. 

Barry had PET/CT scan this morning. Was there for a couple of hours. So that is out of the way. Then he treated himself to Golden Corral restaurant which just opened this week.

I brought my camera to my treatment today. A woman who gets radiation after me asked why I had camera. She couldn't understand why I would take pictures. I explained that this is part of my life. Told her that I also took pictures of my last chemo treatment. So many people only know these words, and have no knowledge of what it is or what the machine can look like. It is therapy for me and also a chance to educate others. These are not the best days of my life, but they are part of my life. I will take more pictures next week as I want a clearer picture of the "monster" machine.

Happy Anniversary, Mom and Dad!

Lots of emotions

This week Barry's been feeling pain beneath his right ribs, area that caused discomfort in the beginning. For some reason, he always seemed to have minimum pain the week he would be getting chemo. And this would be the third week. I called the cancer center to get word to Dr. Garrow. Since the doctor was at the hospital, I told the nurse his symptoms. The pain has been increasing each day for him.

When he went for his blood work today, he was given prescription for pain along with a steroid. By afternoon, the pain had subsided and he was going to hold off on the meds. He is scheduled for the PET scan at 9 a.m. tomorrow followed by the CT scan. It will take about 4 days for the results to be given to Dr. Garrow.

When I went for my 27th rad today, I was told that tomorrow would be my last rad that will cover the whole right breast area. I will not have radiation Friday. After my treatment I was given another CT scan so that the dosimetrist can properly plan where the "boost" will be given. This is essential. If the planning goes on schedule, I will have my first boost on Monday. These rads are direct hits on the scar/tumor area and last only seconds. I will know later how many days it will cover. Probably less than a week.

As I log off I ask that everyone who reads my blog to send positive thoughts and prayers our way. Tomorrow will probably be the start of a few anxious days. I have to believe that it's all in God's hands.

What is a dosimetrist? Answer to follow...

Sorry I didn't post yesterday.....Becky commented to me at soccer game this p.m.

After my daily dose of radiation today (I believe it was my 26th rad), I met with a dosimetrist and my radiation oncologist. Now you may say, what is a dosimetrist? Because that's what I said. Here is the definition:

___________________________


The medical dosimetrist is a member of the radiation oncology treatment and planning team. Dosimetrists have the expertise to measure and generate radiation dose distributions and calculations under the direct supervision of the radiation physicist and the radiation oncologist.

Dosimetrist
The main duties include:

performing computations to deliver a prescribed dose to a defined tumor volume
supervising and/or assisting in the preparation of beam modifying devices and treatment aids necessary to carry out the planned treatment
supervising the therapists in the implementation of the treatment plan
assisting the radiation physicist in quality assurance and radiation protection programs when necessary
assisting in brachytherapy implants, including calculation of doses
Dosimetrists may be involved in clinical research for the development and implementation of new techniques. They must have good communications skills to relay information between the oncologist, physics department, and the treating therapists. Some teaching of dosimetry to students is necessary. The dosimetrists must stay current on continuing change in the profession.

____________________________

Basically both of them marked up my breast like a road map with a permanent blue marker (which then marked up my bra..). And this is the area that will be "boosted" with radiation starting this Friday. I have to avoid soap and creams on this area, don't want the markings to disappear. Each day they will reinforce them. It is the area of my incision and where the cancer was removed. I'm not sure how many rads will be given to me, perhaps about 5 treatments. So, I'm on the home stretch.

I went to work quite pleased in knowing this. But at the same time I was excited for myself, my thoughts are with Barry. Hard to be truly excited for myself with the uncertainty of Barry's condition. Mixed emotions for sure. As always, the uncertainty/waiting is the worst part. I continue to look forward and have faith that it will all work out.

After work I was able to see Tim play soccer. He's grown so much this year: physically and emotionally. Like last night's game, he got a goal and an assist. I'm very proud of him.