I work for a half day on Friday's because that's what I choose to do. Normalcy is good in a situation like this for everyone, or at least I feel it is for me. Too much time on your hands sitting around thinking is NOT good for me, but, I am getting off course.
After 4th period, I pack my computer and huge Vera Bradley bag up with papers and my laptop and head home. I eat a light lunch- some yogurt and a few pieces that were left from a Rotisserie chicken-sipped on some ginger lemon tea and waited for Mom to honk the horn of her car once she arrived. You aren't allowed to drive to and from treatments due to all the medication they fill you with.
My appointment was at 1 pm. We got checked in and I was called back. First, they take your vitals-weight (God forbid if you lose a few pounds! They do not like that!) blood pressure, temperature, and oxygen level. Then they seat you and access my port. Can you believe I forgot to put on my emblem cream (numbing cream) until Mom and I were driving across the Bayfront!? What am I thinking?! So they also sprayed me with some numbing spray and put that needle right into my chest, no problem. Well no problem for them anyway! I felt the pinch for a few minutes, but eventually it went away. Note to self: every Friday, apply numbing cream to port access at least 90 minutes before apointment!!!
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| After over five hours of treatment, we are still hanging in there! |
The room is set up to allow the patients to visit with one another. Sometimes this is a good thing; other times, not so much. Last week I sat near a woman who has a Facebook page. We became "friends" so I can follow her journey. She is also an ovarian cancer patient. I can't tell you how long it has been since I sat next to someone who has this as well. She was across the room and I gave her a friendly wave.
This week, I was seatedt next to an elderly man who was very sick. He has esophogeal cancer and could barely speak, which was a good thing because he kept making that hawking up a loogie sound and spitting into tissues. Believe it or not, I am a squeemish person-even with all I've been through. Poor Mom had a chair near him. I only had to look at her once and knew she was thinking the same thing I was. Poor guy, and EW! At one point, I was going to quietly ask my nurse if I could move, but I didn't want to hurt his feelings, so I just angled myself the other way.
Then his family came in. They had to be asked to leave because only one guest is allowed back there at a time. The daughter that stayed with him was very chatty and her phone was going off like crazy with a variety of tunes which caused her to dance and sing. The poor thing had no teeth, but was as happy as a clam! She told me her life story-had a child at a young age and her child made her a grandma already. She showed me pictures of her fiance' and how she had cut 11 inches off of her hair (that was very greasy-poor thing) when his mom had lung cancer. Like I said, Mom and I heard her life story. We must just have those faces that make people want to divulge their stories. This woman was 32 years old. Yes, she told us how old she was. She doesn't know a think about us though! At about 3:30, he was finally finished and I could work on writing thank yous that I am very behind on!
Then another elderly gentleman was seated next to me on my right. He and his wife were very
Some people come in and put earplugs in and listen to music. I do that sometimes. Others ask for headphones to listen to the tvs that are all over the room. I just read the captions if I watch tv. They have those turned on. Other times I just PRAY! I try to envision all kinds of things when they are actually giving me the chemo drugs. I picture Jesus with his hands spread out waving his hand across me and removing the tumors or touching me gently on the shoulder and healing me. I also envision the Scubbing Bubbles guy. My borther in law, Scott sent me well wishes when I started and a picture of those guys from the commercial! Do any of you remember that product? I believe it's still on the market.
This week they added Avastin to my list of chemos to receive. It is a drug that strangles the blood cells that feed the cancer tumors. So I also envisioned some red guys strangling the bad cancer cells at one point! I couldn't have Avastin the first two weeks because of my lung surgery. Avastin slows the process of wound healing down. You bruise easier and it can cause neuropathy in your hands and feet. Those are just the major side effects. That was the last drug I received that took 90 minutes because I hadn't had it for over two years. It's not the chemo that takes the longest. They give me two anti nausea drugs first that each take at least 20 minutes, then Decadron (the EVIL STEROID) then Benadryll, (only 12.5 mg of that because I get so jittery I may jump out of my skin! I learned that the hard way after they gave me 50 mg back in the beginning of this journey, five years ago) and finally Taxol and Avastin. Mom and I were the last ones there. The poor nurses had to stay until 6:15 pm because it took longer than they estimated with the Avastin for the first time. So after over 5 hours of sitting. we were finally FREE!!!!
I was listening to the birthdates. You see, to ensure you are getting the correct medication, they tell you the name of the drug and you tell them your last name and birthdate. Yesterday, I heard from 1930-1953. I was the youngest one in there yesterday afternoon.
When I got home, I ate a small meal and then went to bed. I fell asleep around 8:30pm and slept until a little after 2 am. Then I got up to use the bathroom and could feel the steroids kicking in. After I did my double flush with the toilet seat down (I am considered toxic for the next 3 days), I decided to go downstairs and have a cup of tea.
On that toxic note, I must give more kudos to Rob. All of my clothes for the next three days have to be washed separately; anything you sweat in or that touches your body. So I make a big pile on our bathroom floor and wash them after the third day. I also strip the bed and change sheets. He will even throw these things in the wash for me on his way to watch tv. He still sleeps cuddled up with me and says he doesn't care if I am toxic or not! Now that is true love! He also said he doesn't plan on getting ovarian cancer! LOL I hope he never gets any kind of cancer. It's more about being exposed to the chemo I am sweating out-and I am drenched when I wake up those first few nights after a treatment. There are many times Rob will help me change into another night shirt because I am literaly soaked. Then you get cold! Anyway, if he is exposed to these cancer drugs they may not be as potent for him if he were to ever need them. He says he doesn't care. I love that guy!
Today I will stay up and watch movies, work on school work, ATTEMPT to nap, and just rest. I will be shakey and weak. I get a beautiful red rash on my face and neck from the steroids that usually lasts most of the weekend. I will have lower stomach cramps that will keep me running to the bathroom. I will drink G2 Gatorade for the electrolytes that my nurse says I need because the treatment dehydrates me and I will get charlie horses in places you can't even imagine: stomach, ankles, toes, neck, etc. . . The nurse also said eat lots of protein, so my good, health crazed friend Elaine recommended Stoneyfield Organic vanilla yogurt. It is AWESOME! It's like a little treat. I haven't been drinking/eating milk products other than an occasional piece of cheese here and there for over two years.. I switched to almond milk after reading about the anti inflammatory effects and the hormone danger it can cause. But once a day, I think a little yogurt will be fine.
On Sunday I may make a short trip to the store with Rob and after that I will try to nap because I will be shaky and exhausted. I should go to church, but I don't always go after treatments. I take a big enough risk going back to school on Monday when my immune system is down, but it does bother me that I am not consistent. So I make sure I pray more that day or read the Bible. Danielle, Corey, and Wrigley usually come and visit on Sunday afternoon, too. I look forward to that. The boys are in and out with work. I run into Zach, usually in the kitchen! He's been working like a beast double shifts lately since someone was fired for not showing up. Our society has not done a very good job on teaching this latest generation about fulfilling commitments and that you must go to work on a consistent basis. I think we instilled that in our kids, though. They are hard workers. (Sorry for getting off track again!) I will see Andrew this week finally. He has had hockey games the past few weekends. He has been scoring like crazy. They played Alleghany, Pitt Bradford, and one other team. He scored 12 goals and had 9 assists in three games! Woot woot!! So proud of him!
Donovan will be happy to see him this weekend! So Sundays are basicall for family.
Monday is rough. I haven't slept or ate much during the weekend and usually still have lower stomach cramps. I ALMOST made it through the entire work day last Monday. My lunch group, however, said I looked exhausted and Mr. Ludwig came to the rescue. He took most of my Advisory and Mrs. Valone took a few. Mr. Krahe graciously said to let him know if I needed anything. I came home and slept for over six hours! Tuesdays are somewhat rough too, but more manageable. Wednesday was tough this past week. My lower stomach was still bothering me. Thursday seems to be the best day only to start over again on Friday. So that is my week in a nutshell. Mr. Fritts and the his staff next to my classroom are so generous and have told me to let them know if I need to make a bathroom run or anything-they will keep an eye on my class. With everyone's help, we are making it work! I am blessed!
Speaking of being blessed, my hairdresser is something else. Carrie Kuhn set up a program on Facebbok called Mealtrain. Anyone can go on it to sign up and bring us dinner. It has been so nice these past two weeks. I come home and nap. When I get up the guys have a beautiful meal ready for them. If I have an appetite, I will eat a little. Otherewise, I stick to soup. I cannot tell you how helpful this has been. It's been overwhelming how helpful the community, our friends, and our family have been. Again, we are blessed. Thank you so much, Carrie-oh, and if you need a great hair cut or coloring, nails done, eyebrows waxed, call Polished Hair Design! They are excellent and come highly recommended! Carrie even cut my wig 5 years ago to fit my hair style. I 'll be visiting her again with the same request soon.
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| Posters and cards my students made when I was having surgery |
Thank you to the Courtyard Winery and allowing us to hold the 2nd Annual Ovarian Cancer Awareness Fundraiser there! A very special thank you to my parents,who supplied snacks each day and went out from 3-6 pm six days in a row dressed in their teal garb. They made sure everyone knew what was going on and if they would like to make a donation! You can tell she worked for Hamot in their philanthropy department! We sold 632 bottles of wine and had many donations earning $1170!!! Thank you to those who also sent donations directly to the fund. We also sold some of Susan Evans' book. I am so proud of their hard work and for all that came out to support this cause. Although it is not recognized as much like other cancers, we are doing our best to get the word out.
My colleagues have also been just amazing!!! The Junior High Builders Club is beginning a Yankee Candle Sale starting Monday that will run for two weeks. Some of the proceeds will be going to the Ovarian Cancer Foundation too. Then, Lacey and Trisha, our school psychologists, approached me and a senior high group is going to do a tshirt sale and awareness assembly on ovarian cancer at the end of November. The shirts will say "Chase Cancer Away." If you are interested in ordering a shirt, I will hopefully be able to post it on FB. Finally, I even saw a dress down day that the district will have for the teachers where the money collected will go to that foundation I am so fond of. Again, I am truly blessed!! The Harbor Creek School District is GREAT!!!
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| More beautiful gifts that have been sent. |
On a more solemn note, I noticed for the first time yesterday after washing my hair that it is starting to fall out. I have felt how dry it was getting, but when I was combing it gently with a pck, it was coming out quite a bit and I had hair all over my shirt. I think I will be going wig shopping sometime this week after school. . . THANK YOU to all of those colleagues and administrators who gave a monetary donation toward it. Pam Chodubski, senior high principal, started that up. She wants to make sure I still look good and I am truly thankful for everyone's generosity. Another blessing. I need to make a tshirt that says THANK YOU on it and just walk around every day wearing it!
I do have a few friends and family that have stayed completely away. I have not seen or heard from them once. I guess when someone is sick, you don't always know what to say, and I understand that. Maybe they think the end is in sight. If they do, then they should stay away because I don't need negative Nellies around. I have my own doubting moments and I do not want anyone else filling my head with sad thoughts. Maybe they are just busy with life in general. It's hard to say, I guess. I have plenty that have surrounded me to not take too much thought on that but it has definitely been noticed. :(
Lastly, even though the chemo drugs have been making me more down and causing me to really fight negative thoughts out of my head lately, I need to remind myself that God is in my corner and his work has been showing me this daily through the people that have surrounded themselves around me, Rob, and our family. It's hard to face a disease they don't have a cure for. It's hard to have it come back for the fifth time. It's hard to watch friends who have lost their battle before me. So many questions go through my mind. I do have those moments. . .
Everyone tells me how strong I am, but I am human; I am weak too. Some people tell me that is Satan working on me when I have those negative thoughts. I am not a follower of Satan, believe me! I think it's more about the fear of the unknown. Then I remember my doctor telling me, "No one knows when it is their time. I could walk out of here and get hit by a car." She is right. None of us know when it is our time. We have to trust in God and believe it will be a better place where we will live for an eternity in peace. So I will continue to work hard at thinking positive thoughts this month.
November 10th my CA 125 will be drawn. After a day or two of waiting I will get an idea if this concoction is working. I think I'll focus on that. My mantra for the next several weeks will be: I am loved. I am strong. I am in remission. I am healed. Then I will include the rest of you in my daily prayers as usual.
Until next time,
Sue
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| Ginger really helps to calm a stomach! Thank you Kathy! |
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| Courtyard Winery fundraiser |
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| Corey's work people from Nova Care sent this. I am blessed. |
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