Hello all- Some days Radiation goes very smoothly and other days takes a long time and is proving to be a royal pain. I am about two weeks in and about four weeks to go. I had a tough week last week with frustration and disappointment but this week things have gone fine.
We went to San Diego two weekends ago which was a fun but long trip. We chose to drive home late on Sunday night and got in about 1:00 am. I had to pull myself out of bed on Monday morning to get to radiation by 8:00 am only to find out that the machine was down. No machine, no treatment. The therapists (the ones who run the machines) were not able to get the message to me in time to prevent me from traveling the hour up there to find out I was out of luck. I was so furious that of all days, I was exhausted and I drove all the way up there only to turn around and drive home and I did not even get a session of therapy under my belt. The more sessions I get, the closer I am to finishing. So I missed two days because of the machine and those days gets tacked onto the end of the therapy timetable.
Then on Thurs. the Dr. was moving and shifting my body so they got the perfect position that I laid in one position (with my arms over my head) for almost an hour. I was in so much pain that tears were running down my face by the end of it. I had to just lay still and take it because if I were to quit or move I would only have to repeat it tomorrow. So it was in my best interest to just get through it. On Friday it was better. As they were positioning me I would lower my arms to give them a rest and that worked better. I have to do what I can to make the experience work for me. I get mad at them, but they are only trying to give me the best result. So I understand what they are trying to do but I still am angry and I take it out on them in my head. Which makes no sense, it is not really their fault.
I am having a hard time shaking my anger. I am just so tired of everything and I find I am projecting it on people who are either unrelated or not responsible for my anger. It is unrealistic and really makes no sense but sometimes I need a person to blame for my problems. I can't blame cancer. It is fruitless.
So I am up at 6:00 and out the door by 7:00 for the radiation appt at 8:00. Sounds like a job, huh? I get through radiation for the day, it is about 10:00 am when I get home. If it is a good day, then I can get started on the rest of my day. If it is a bad day, then it really deflates me for the rest of the day. I feel lethargic and tired. I nap a lot now as they warned me that radiation tires you out. So far I am not seeing any side effects such as skin burns or redness. They say to expect it in the third or fourth week. So I am trying to stay ahead of it by moisturize my skin as much as possible. Both Monday and Tues were very smooth, in and out in 30 mins.
Good news, my Mother in law is back to help out. For the next three weeks, she will be able to take care of the kids and Brian can travel when he needs to knowing that I am taken care of. I think her visit will be better for him than for me, although it is good for me too. He tends to put the weight of the world on himself and just be knowing I am OK gives him the ability to go to work and do his job.
We had a great weekend in San Diego. We went to the pool and hot tub and I did not wear my wig. A big step for me. I feel like people immediately know I have cancer when they see the short hair but you know what, who cares, I won't see these people again and if they wondered, who cares, it is not my responsibility to fill them in. I wonder why I am so worried about hiding it still but I guess it just gets back to privacy. I don't want to be seen as a spectacle, my hair is just short not a big deal, right?. I am getting closer to "the big reveal". No wig. My hair is only about 1/2 inch long but I am thrilled. I colored it today to give it the appearance of more thickness. I think it looks pretty good, considering, but we will see if I have the guts to go out in public or not.
Paige continues to love her Monkey Business group. It is very natural for her to tell people all about it. "I am going to my club. It is for kids who's Mommy's or Daddy's have Cancer." Very matter of fact, which is good. It is a part of her life, she should embrace it. She seems to be handling everything so well. One issue I did not address with Paige is the fact that you could die from cancer. I just figured why go there if I don't need to right now, but in the group they covered that topic and I cringed a bit because I wasn't sure how she would handle it. Come to find out she is fearful of that but she is as hopeful as I am. Hope is important.
I wanted to mention again how wonderful it is to get cards and messages from friends and family almost a year into this ordeal. I hear from Brian's side of the family a lot which is so nice. Thank you for all your thoughts and prayers. I have reconnected with so many people that I sometimes have a hard time keeping up with responses so if I am slow, I am sorry. It is a wonderful problem to have, too many people to respond to. I love talking with everyone, please don't feel put off, I couldn't do it without you all.
Britt
Sunday, March 22, 2009
Friday, March 6, 2009
Quick Update
Hi everyone, sorry to leave you with such a downer entry last time. Like I said, it has been a crazy week. Just wanted to give a quick update that I had radiation again last night and things went very smoothly. The therapists were very good with me walking me through what to expect and it took about 30 mins. It's all good. I am doing much better.
Britt
Britt
Tuesday, March 3, 2009
Crazy Week
I was to start Radiation this week but things got a little crazy. I was in good spirits going into this week though I was tired because Brian had to travel this weekend and all week, giving me limited down time in dealing with the kids. I arranged to have Stephanie babysit on Tues but without knowing when I would be going back on Weds I reluctant to set other arrangements.
I get to the appt but start later than anticipated and I was worried about picking Paige up at school on time. I had alternative plans but when you are on your back in a machine laying perfectly still, I can't exactly get on my cell phone at that moment. I was told this day was simply a "dry run" of the radiation plan they developed. They want to be sure that the computer is programmed correctly and all the steps and measurements were correct before turning on the dangerous radiation. But I was required to lay still for a full hour. You try it, see if you can lay perfectly still for even 5 minutes. It is really hard. So I am laying on the gurney with camera-like machines hoovering over me. Every couple minutes they move and shift around me, shifting and clicking as they settle in the new position. All the Technicians are in the other room through a lead door that protects them from the radiation. Lucky me, I am all by myself in there with no one for company but a large intimidating machine.
So at some point about 20 mins in I must have dozed off and then the machine moved to it's next position and I woke up with an involuntary start. I knew I had moved quite a bit but I didn't know what that meant. "Did it mean I we had to start over?" "Did I mess some thing up?" "Did anyone see me move?" "Hello out there?"
I thought someone might come over the speaker and say some thing, like, "We saw you move, it's no big deal, just keep going." The Techs said they could see and hear me if I needed anything so I called out "Hello?", no response, I started to feel stupid, trying not to move but letting out a weak "hello" for the second time. No one was responding or giving me any instructions. Then I got scared. "Is anyone even there", "Are they out to lunch?" I yelled for a third time and still nothing. Then a single tear rolls down my face and then I knew it, Oh GOD, I am having a panic attack. My mind was racing, "Get me out of here!" I had one other panic attack in an MRI machine shortly after my diagnosis. Once I started to cry I started to feel really sorry for myself. Like if I was looking down and watching this from above, I would feel really sorry for that girl. Kind of a weird concept, but by now my breathing was elevated and I am not supposed to change my breathing too much. I knew the test was blown. FINALLY the techs rushed into the room to save me. "Where were they, why didn't they come or respond to me?" Turns out the lead door that seals me in to the room swings open so slowly because it is so thick and heavy
All in all it was a horrible experience and guess what!....I had to go back the next day to finish the dry run. I was able to pull myself together to drive home but I decided in that time that I needed Brian's mother to come back out again to help me. The stress of daycare arrangements, scheduling and caring for the kids along with Radiation and other DR appts is going to be really hard. So for all my friends and family who were encouraging me, I am going to accept help. Gram had offered and is happy to come out for a three week visit and help with the kids. Thank god for my family. Poor Brian, felt so helpless, being in North Carolina at the time. It seems like every time I have a major problem he is away trying to do his job. Of course, the reason I don't have as many problems when he is around is probably because...he is around. He alleviates that stress for me and remembers things that I don't remember from the Dr's. He was so upset he canceled his travel for next week so I will have help until Brian's Mom get into town.
So last night (at 7:00PM) I had to finish the test dry run. I was less stressed this time. I had the kids with my friend Sarah, and I listened to music before hand and OH Yeah, I took a anti-anxiety pill too, to take the edge off. HAHA Love my medication. I talked to the Dr and asked that the techs communicate with me through out the whole test so I know how long I have to go, just to let me know someone is there. They were all really nice and sorry that I struggled the day before. I got through it fine. With thirty mins on the gurney, I was done. Thank God.
It seems that my plan is pretty complicated because they are trying to radiate these tough locations such as the spot in the middle of my chest between my ribs. This requires a lot of maneuvering. Where most patients only have a couple mins of radiation, I will more likely have about 30 mins. My friend who just finished radiation, she only had 2 and half minutes but of course "I'm special", I have 30 mins. The Tech last night said that he has not seen such a complex plan. I am not sure if that is good or bad. This whole process really caught me off guard. I know I have a complex case but why do I need to add drama to the situation??? I am sure this kind of thing has happened before, I know a lot of people who have had panic attacks and also attacks in MRI's machines etc. So I am not embarrassed but I want to work to avoid it next time.
Like I said it has been a crazy week, in the midst of all this, I joined a new a support group aimed to help kids. It is called Monkey Business and the kids, ages 2-15 meet in one room and the parents meet in another all talking about how to help the kids deal with Cancer in their family. I think Paige has handled the whole thing wonderfully so she really saw this as a play date kind of thing because they made crafts and read books, etc. I get to this meeting all annoyed at the scheduling issues and the driving I will be doing over the next 6 weeks. We sit down to meet everyone and hear their stories. As we go around the room, a man starts to tell us his story and I am so sorry tell you all this, but this poor man is basically dying of prostate cancer......It was so hard to hear his story because he has very little hope. What do you say? He has two children and they are scared and devastated. In that one moment, for me, it all came flooding back for me. Why was I going through all this? There is a reason, a good reason. I plan on living....I have plenty of hope and that is why I do this. I do it because I want to live a long life and don't plan on this thing coming back.
That meeting put it all back in perspective. I am the lucky one. I am going to be OK and with some hard work I will get my life back. Sooner than later too. So off I go to Radiation with a new sense of purpose.
I will be in the car a lot so I am getting a earpiece headset so I can talk on my cell hands-free. So maybe you will be hearing from me as I pass the time in the car. =)
Love you guys
I get to the appt but start later than anticipated and I was worried about picking Paige up at school on time. I had alternative plans but when you are on your back in a machine laying perfectly still, I can't exactly get on my cell phone at that moment. I was told this day was simply a "dry run" of the radiation plan they developed. They want to be sure that the computer is programmed correctly and all the steps and measurements were correct before turning on the dangerous radiation. But I was required to lay still for a full hour. You try it, see if you can lay perfectly still for even 5 minutes. It is really hard. So I am laying on the gurney with camera-like machines hoovering over me. Every couple minutes they move and shift around me, shifting and clicking as they settle in the new position. All the Technicians are in the other room through a lead door that protects them from the radiation. Lucky me, I am all by myself in there with no one for company but a large intimidating machine.
So at some point about 20 mins in I must have dozed off and then the machine moved to it's next position and I woke up with an involuntary start. I knew I had moved quite a bit but I didn't know what that meant. "Did it mean I we had to start over?" "Did I mess some thing up?" "Did anyone see me move?" "Hello out there?"
I thought someone might come over the speaker and say some thing, like, "We saw you move, it's no big deal, just keep going." The Techs said they could see and hear me if I needed anything so I called out "Hello?", no response, I started to feel stupid, trying not to move but letting out a weak "hello" for the second time. No one was responding or giving me any instructions. Then I got scared. "Is anyone even there", "Are they out to lunch?" I yelled for a third time and still nothing. Then a single tear rolls down my face and then I knew it, Oh GOD, I am having a panic attack. My mind was racing, "Get me out of here!" I had one other panic attack in an MRI machine shortly after my diagnosis. Once I started to cry I started to feel really sorry for myself. Like if I was looking down and watching this from above, I would feel really sorry for that girl. Kind of a weird concept, but by now my breathing was elevated and I am not supposed to change my breathing too much. I knew the test was blown. FINALLY the techs rushed into the room to save me. "Where were they, why didn't they come or respond to me?" Turns out the lead door that seals me in to the room swings open so slowly because it is so thick and heavy
All in all it was a horrible experience and guess what!....I had to go back the next day to finish the dry run. I was able to pull myself together to drive home but I decided in that time that I needed Brian's mother to come back out again to help me. The stress of daycare arrangements, scheduling and caring for the kids along with Radiation and other DR appts is going to be really hard. So for all my friends and family who were encouraging me, I am going to accept help. Gram had offered and is happy to come out for a three week visit and help with the kids. Thank god for my family. Poor Brian, felt so helpless, being in North Carolina at the time. It seems like every time I have a major problem he is away trying to do his job. Of course, the reason I don't have as many problems when he is around is probably because...he is around. He alleviates that stress for me and remembers things that I don't remember from the Dr's. He was so upset he canceled his travel for next week so I will have help until Brian's Mom get into town.
So last night (at 7:00PM) I had to finish the test dry run. I was less stressed this time. I had the kids with my friend Sarah, and I listened to music before hand and OH Yeah, I took a anti-anxiety pill too, to take the edge off. HAHA Love my medication. I talked to the Dr and asked that the techs communicate with me through out the whole test so I know how long I have to go, just to let me know someone is there. They were all really nice and sorry that I struggled the day before. I got through it fine. With thirty mins on the gurney, I was done. Thank God.
It seems that my plan is pretty complicated because they are trying to radiate these tough locations such as the spot in the middle of my chest between my ribs. This requires a lot of maneuvering. Where most patients only have a couple mins of radiation, I will more likely have about 30 mins. My friend who just finished radiation, she only had 2 and half minutes but of course "I'm special", I have 30 mins. The Tech last night said that he has not seen such a complex plan. I am not sure if that is good or bad. This whole process really caught me off guard. I know I have a complex case but why do I need to add drama to the situation??? I am sure this kind of thing has happened before, I know a lot of people who have had panic attacks and also attacks in MRI's machines etc. So I am not embarrassed but I want to work to avoid it next time.
Like I said it has been a crazy week, in the midst of all this, I joined a new a support group aimed to help kids. It is called Monkey Business and the kids, ages 2-15 meet in one room and the parents meet in another all talking about how to help the kids deal with Cancer in their family. I think Paige has handled the whole thing wonderfully so she really saw this as a play date kind of thing because they made crafts and read books, etc. I get to this meeting all annoyed at the scheduling issues and the driving I will be doing over the next 6 weeks. We sit down to meet everyone and hear their stories. As we go around the room, a man starts to tell us his story and I am so sorry tell you all this, but this poor man is basically dying of prostate cancer......It was so hard to hear his story because he has very little hope. What do you say? He has two children and they are scared and devastated. In that one moment, for me, it all came flooding back for me. Why was I going through all this? There is a reason, a good reason. I plan on living....I have plenty of hope and that is why I do this. I do it because I want to live a long life and don't plan on this thing coming back.
That meeting put it all back in perspective. I am the lucky one. I am going to be OK and with some hard work I will get my life back. Sooner than later too. So off I go to Radiation with a new sense of purpose.
I will be in the car a lot so I am getting a earpiece headset so I can talk on my cell hands-free. So maybe you will be hearing from me as I pass the time in the car. =)
Love you guys
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