Sunday, March 29, 2009

Radiation Week 3

Amoret flew home Sunday morning and all I could think was how nice it would be to have some time to myself, but it would only be the afternoon since my mom, sister, niece and nephew were diving down to visit. Becky had mentioned on Friday how she looks forward to the weekends now since they are days off radiation, which I hadn't really thought of but they sure do make a difference a couple days to recuperate and sleep in.
My mom called me after they had left home the second time to let me know that Wyatt was sick and could not handle the car ride down state. Sad, I really wanted to see the little guy. So it turned out to be a ladies trip. I spent most of Sunday cleaning, preping and decorating a bit more in my apartment. Being home bound has also created a little Suzie homemaker in me, I enjoy cooking meals and baking these days. Its even more fun to do it for other people who are use to cooking for me.
When my family arrived I noticed they all sounded like they had a cold, oh yeah! I am suppose to stay healthy through radiation, stay away from people that are sick, tough to do when your drivers are sick. My family filled my apartment up and we had fun talking and watching tv.
Monday morning I combed my hair and noticed that more hair was coming out than usual, yippie! hair loss on the left side of my head. And more fell out while washing it, kinda depressing but signaling to me that my radiation is working. I haven't hunted for the bald spots though cause I don't want to see them and the burnt skin. Monday at radiation I noticed Becky was looking stronger yet and walking better. I again got x-rays done for the doctors and enjoyed the fireworks. I tried working after radiation and actually got a bit done, while my family went out shopping.
On Tuesday the nurse said he needed to get my vitals before I saw the doctor and then only made me get on the scale. Apparently my only important vital is my weight and I got rid of my scale so I didn't have to know what I weighed. I always thought of vitals as your heart rate and blood pressure, not your weight. Well fyi, my weight has not changed since starting radiation, which is what they want. My ear ache was gone and the doctor acted surprised when I told her I notice hair loss, but she is the one who told me to expect hair loss.
After radiation my Aunt Marlene and cousin Joanne came up to have lunch with my family. We went to Olive Garden and I ate tons of salad and bread sticks, what makes their salad so delicious anyways? I know their bread sticks are tasty from the garlic butter on them. After lunch my older sister and I went shopping, yeap more shopping, and had fun shopping together again.
On Wednesday we had an appointment with a geneticist after my radiation. The geneticist appointment was set up since I am the third person in my family diagnosed with cancer and there are several other members in my extended family that have or had cancer. I felt that there must be something doctors can test for to see if we have a gene mutation that causes us to be more susceptible to having cancer. We ended up waiting about an hour past my scheduled appointment time to see the doctor and he was very confident that there was something in the Blumhardt side of my family that allowed so many cancers occurrences to happen.
The doctor performed a physical on me and then spoke with my mom, sister and I about what syndromes/ gene mutations they were going to test us for. He said that even if those tests came back with no mutations he would still keep my family in mind as far as future studies as to what causes cancers to develop. Early cancer detection has been one of my biggest concerns even before I was diagnosed, because oddly I knew I would get cancer one day, just not at 26. The geneticist said that if a family is diagnosed with a cancer syndrome any offspring or members who have not had cancer will be checked for the gene mutation. If they test positive they will have yearly screenings for cancer, where there blood is checked and they have a full body CT scan or MRI to check for tumor growth. This oddly seems like the appropriate way to handle a family that is cancer prone. Some people may say why would I want to know if I am going to get cancer one day, that would only make me worry even more. But to me early detection is a crucial aspect to surviving cancer. I really starting to think that I need to look into what types of advocacy groups are out there for early cancer detection in families with a history of cancer.
My mom and sister stayed through Wednesday and we decided to celebrate their trip by having ice cream for dinner and it was fun. On Thursday morning I was sad to see them leaving but at the same time knew that some alone time would give me time to relax after all the company. Thursday I had my second MRI for the research trial and then just made it to my radiation on time. The rest of the day I worked and enjoyed my empty home and alone time. I found that I need alone time regularly and can not always have people around me trying to take care of me. I am fully capable of taking care of myself, except for the need to have someone to drive me places, which I have tons of family around offering to do.
Friday I had my 14th radiation treatment, only 16 more to go! Oddly it is more exciting counting them down rather than up, it must be the feeling of completion. Becky and I exchanged numbers so we could talk outside of radiation since our appointments seem to be on time leaving us with very little time to talk.
I tried to work on Friday, but again the network wouldn't allow me to connect and I wasn't going to let it frustrate me so I did other things around my apartment. My cousin Mark's band was having another concert and I naturally made sure I had the energy to go and see him play. He did so well, singing and playing the guitar. He amazed me with how talented he is. Afterwards my cousin Carolyn and her boyfriend wanted to play a game they recently bought, Things, which is hilarious with the right group of people. I think I might have to get it to play with my friends.
I again have enjoyed another weekend of sleeping in, cleaning, relaxing and watching movies. Oh and of course updating my blog for hours. I am going to try and update this thing a bit more often so I don't have to spend a full day remembering what I have done and then type it up.
Thanks for reading these long posts.

Radiation Week 2

Cory left Sunday morning to head back up to Houghton to finish school and my Aunt Marlene arrived on Sunday evening to stay with me and drive me to radiation for 3 days. This was the start of my string of guests, that I thought would be fun. My Aunt Marlene is herself a breast cancer survivor and was her husband's care giver while he fought lung cancer that metastasized to his spine and brain, so I knew she would have a bright, strong attitude towards what I am going through. We ended up talking all evening and looked at the clock and it was 10:30, my new old lady bed time thanks to radiation tuckering me out. My aunt and I had made plans to get my sewing machine running so I could make a couple duvet covers and she could teach me how to make button holes. Again my skills of planning taking over.
So Monday morning we got up and were ready to head out to treatment a little early, so we went. I ended up getting in before the patient before me since they hadn't checked in yet, note to self earlier is better. I had a couple x-rays before treatment to recheck alignment and treatment, which is a Monday regular since I see my oncologist on Tuesdays. I walked out of radiation after less than 20 minutes and surprised my aunt, she thought it would be a bit longer since we got there early.
We then headed home and figured out what all I needed for my sewing machine, then went shopping for a couple hours. We had a lot of fun walking through the crafts store looking at things neither of us needed. We came home and she started working on my sewing machine and I did actual work for a couple hours. We got the two duvets sewn together by ~10 pm and then headed off to bed.
On Tuesday we got to U of M early and I talked with another young girl, Becky, whom I had seen on Monday and the prior week. Becky has a tumor growing on her hip that is pushing on her sciatic nerve which is incredibly painful and makes it difficult for her to walk and sit up right. Becky has an amazing attitude towards her situation though, she leans/lays on her right side when sitting and nicknamed it Cleopatra-ing. We figured out that we both had radiation at the same time and in fact had started on the same day, so we would be seeing each other daily. Radiation was quick again since my oncologist was out of the hospital that day.
My Aunt Marlene spent the rest of the afternoon sewing button holes and I tried to work. I had some work that needed to be done and naturally I couldn't connect to my work's network. I tried for 4 hours and was completely frustrated when it finally connected at 5 pm, when everyone else left work. Throughout the afternoon my Aunt and I fixed a couple pairs of pants and made plans to go out to dinner with my Aunt Terese and Uncle Mike. So by the time I was finally able to work it was time to head out for dinner. This was the first thing that showed me how easily frustrated I get these days, I didn't even want to work anymore that day.
On Wednesday radiation was running late so I was able to talk to Becky more. When I saw the young child come out of my treatment room sedated and on a gurney I completely understood why it was late. It was hard to see such a young child being put through radiation, but I know it is helping them fight their cancer. After radiation I stopped at the nurse's desk to discuss an ear ache I had been having all week and wanted to make sure it wasn't radiation burns, which it wasn't and it went away by the weekend.
I then went into work, since I hadn't been able to successfully work the day before and found out that the entire network was slow yesterday. I was surprised when I was immediately approached with problems, shows me I am still needed at work and made me want to work more from home.
On Wednesday night my friend Amoret was flying in to visit for the weekend, so Gary was going to pick her up from the airport and I went to dinner at their house. On the way home Amoret called me to say that her flight was delayed 2 hours due to weather. Well there was not bad weather at either spot so we were confused, but what can you do. So I had dinner with Cynthia and Gary while waiting for Amoret's updates on her flight. It ended up that her flight got canceled and she was re-booked through Minneapolis to Detroit and arrived after 1 am. She started drinking before she got to the airport which made all this tough for her to handle. She kept whining to me about how tired she was and how much this sucked. I didn't know what to tell her besides we can't control the airlines. I ended up waiting at Cynthia's until it was time to pick her up. Gary and I drove down to pick her up and she was so drunk and upset that she wasn't excited to see me. We started the drive back to my house and she just fell asleep. I was getting pretty ticked off by this, cause I had started to get the fatigue from radiation this week and was still awake. We got to my apartment and both went to bed.
On Thursday morning Amoret took me to radiation and went back into the patient waiting area with me. We then had to see the doctor and I couldn't help but notice the green denture Tupperware and wanted to snag a couple, but didn't have my purse to put them in. After treatment all I could think was that I wanted to nap for a couple hours before we did anything else. We ended up napping and watching movies most of the afternoon and then went out to Red Lobster for dinner. So delicious, I decided I like lobster and their muffins kick ass. Afterwards we went to the craft store so I could replace one side of her Bronco's fleece blanket that was tearing. We were suppose to watch Survivors and Grey's Anatomy like we use to, but Survivor was not on thanks to march madness, booo. So I ended up fixing her blanket and watching a movie.
On Friday we of course got up and went to radiation, which again went right on time. I also noticed Becky was sitting up, she was seeing the first signs of her radiation shrinking her tumor. She also said she forgot to take her pain killers that morning, what a huge step. In some way that upset me, cause she is seeing the results an I know I won't get to see the results except through my MRIs. The little things really do make a big difference when you are fighting cancer. On top of this I started getting annoyed with having to give directions to everybody that was driving me, probably more so from not being able to drive them around in my town. I think not being able to drive has been the toughest restraint from my cancer, but hey only 2 months and I can drive again!
I've noticed that my friends are not fully capable of understanding where all my frustration comes from and that my out bursts just need to happen and I need to get through them. I wouldn't expect them to be able to understand what I am going through, but it would be nice if they didn't blow right back up at me. A lot of times I just think how unfair it is that I am just getting started with my adult life and just barely got to enjoy it before having to fight through cancer. What 26 year old needs to start worrying about fighting to live? Sometimes this completely consumes my thoughts and makes me want to encourage doctors to pay attention to patients whose families have cancer in them for a more thorough screening at each physical.
Amoret and I continued to have a fun weekend, with shopping, eating out, watching movies and I even made her an amazing hemp necklace and lanyard. She found a beautiful glass pendant and I was able to make a beautiful necklace with it. Each time I go bead shopping I think how much I want to learn how to make glass beads, another project for when I can drive. We also went to REI, always a dangerous store, to pick up biking needs for myself and I was reminded how much I wanted to find a good indoor rock climbing wall so I can climb again. There is so much I want to do again these days, which is so much like the person I was before this tumor took over my energy.

Saturday, March 28, 2009

Radiation Week 1

Cory's spring break coincided with my first week of radiation and he volunteered to drive me to my appointments, so I was anxiously waiting to hear when he was getting to my house on Friday. When he got there it was so nice to see him and get hugs and kisses from him. It always amazes me how we can go weeks with out seeing one another and yet all the love is still there when we meet up again. That is one of the most special things about him, no matter how long its been since we've seen each other or talked, out love is just as strong. He calms me and relaxes me when I am with him. He keeps my head in check and makes sure I know that just cause I have cancer does not put on a pedestal above everyone else. Which sounds mean, but I honestly need to be reminded that I am still a normal person who is fighting something and other people could be fighting something too. Somehow Cory is the person that I look to when I am in need and is able to help me through anything. He arrived Friday night and spent his break between my place and his parents.
I went to work on Monday to distract myself from my first radiation appointment on Tuesday. My nerves were so worked up that I needed a distraction. On the way to work Cynthia reminded me of the plans we had made to eat dinner at this orange restaurant that had been opened months ago and caught my attention with its bright orange paint and ice cream sign. It turned out to be a hamburger place and we never stopped and had talked about doing so the day before I started radiation. So Cory, Cynthia, Gary, and I went out to dinner at this cute 50s style diner all decorated orange. They actually had good greasy food and Gary wanted to be dropped off there to eat breakfast during the week, the mans a sucker for greasy foods. Cory and I spent the rest of the night cuddling and watching a movie.
My first radiation appointment was on Tuesday, March 10th, and my schedule is to have radiation 5 days a week for 6 weeks, meaning I will get my last treatment on a Monday. Cory and I went out to breakfast before my first treatment and then drove over to Ann Arbor, about 30 minutes, pretty much in silence since I was nervous about what was to come. I had no clue what to talk about besides the fact that I was scared about all this stuff going on inside my head.
Walking into the radiation waiting room is odd, since most patients there either older or appear sick. And I walk in as this healthy young girl with her healthy young boyfriend which makes me feel out of place. I went on back to the patient waiting room and sat waiting to be called in. I was nervous the whole time. I ended up helping another patients husband figure out her cell phone and told him if I couldn't help my boyfriend could, but he was out in the waiting room. When I came out Cory told me the guy had told him that I helped him fix his cell phone. I asked Cory how he knew which person in the waiting room was my boyfriend and he said we stand out in there. What a shock, we stand out that much in there!
The first treatment was the longest of them all, since they had to mark the set up points, take x-rays and confirm the points locations. Then I received my first dose of radiation and ended up receiving 4 spots where radiation is delivered. During the entire treatment my eyes are closed so I won't freak out about being locked down. Since my eyes were shut and the lights were dim I could see light in my head while the radiation was being delivered. I texted my friend Rettke about them and he dubbed them fireworks, from the neurons being fired in my head, and I liked it so much that I started considering my radiation treatments firework shows.
After my first treatment I meet with the scheduler and picked out times for the rest of my appointments. The first week the times fluctuated due to openings and the other 5 weeks my appointments were scheduled for the morning. Lastly I was to visit with the doctor and was told to wait in the waiting area for a room to open up. I patiently waited for a half hour then checked back with them and they said to try again on Thursday, since my oncologist was so backed up. So we went home and I worked the rest of the afternoon.
My appointments went well the rest of the week and I noticed that my morning appointment was closer to on time than either of my afternoon appointments. I also got to see my oncologist on Thursday and all was fine only had mild headaches in the evenings thus far and ibuprofen took care of those. I was even capable of going into work on Thursday. I didn't really even start to feel exhausted from the radiation.
The one thing that I did notice during this week is just how irritable and frustrated I am getting from worrying about my cancer and also from my medication. I am such a planner these days that when I plan something and it doesn't turn out how I planned it I don't know how to express my emotions and they just come out as angry or upset. Which is not what I am feeling, but rather disappointment in myself for not being able to make things go according to my plans. I have never been one to be so stuck to plans and am trying to teach myself to relax about planning things and just let them happen as they do. This is damn near impossible though when you are confronting cancer.

Radiation Preparation

So I pretty much suck at updating this thing. But hey I am trying to think up a way to get my thoughts on here more often.

So where did I last leave off, mid-February, hmmmm so much has gone on but what was first. I guess it would be my radiation set-up appointment on February 17th. I meet with the resident and radiation nurse and we talked about radiation side affects and methods to combat them. The common side affects are hair loss and skin burns at the sites of radiation entrance and exit, as well as headaches, nausea, tiredness and perhaps effects on my speech. To combat the hair loss and skin burns I was told to only wash my hair twice a week with a sensitive, fragrance free shampoo and conditioner, like baby shampoo.
Well with long hair I thought this could be bad or a mess. And starting thinking I would have to cut my hair off. Research was done on this and I kept my hair. I actually found an earth science shampoo and conditioner that are pH balanced and fragrance free that are working wonderfully, along with a shower cap worn on the off days.
As far as headaches and nausea went they could give me steroids or pills to combat those. Advil works on my headaches when taken right after my treatment and I did not get the nausea. The tiredness would slowly build up and has, but sleep solves that problem. I also have not noticed any speech issues.
Then I was walked through the radiation treatment area and had a thermoplastic mold of my face made, so my head would be locked in place for each treatment to hit the same spots. Naturally I had to ask what the thermoplastic type was and the techs couldn't tell me, but gave me its consumer name.
I was a bit leary of having to wear a mask locking my head down since I am mildly claustrophobic. However, the plastic is a mesh and they cut eye holes and a mouth hole so it wouldn't be as bad. During the set up they performed a CT scan to allow the doctors and physicists to set up my treatment plan. I didn't freak out during the CT scans, which were longer than my treatment would be so we guessed I would be able to handle treatment drug free.
Next I meet with a clinical trial coordinator to sign up for an MRI study throughout and post radiation to track the effects of radiation to the brain. This study requires an MRI just prior to radiation, 3 weeks into radiation, the last week of radiation, a month after and then several more following. It also requires a neuro-behavioral test and a quality of life questionnaire. Which were all to be completed the following week.
We scheduled the MRI and tests for the following Tuesday. I worked the rest of the week and relaxed all weekend, which was really nice. I cleaned and organized my apartment more and watched movies. Just exactly what I wanted to do. Slowly but surely I am getting more moved into my apartment and making it feel more like my home. I also did my taxes, argh! they are so frustrating, but I did them and am proud to say I figure that beast out. My friend Scottie stopped by on Sunday and we went out to lunch and caught up just like we used to, it was really nice.
The whole week several people were trying to figure out what the neuro-behavioral test would be like and nobody had any idea. So I kinda let that curiosity build up and was surprised to find out it was just like the Nintendo DS game Brain Age, which disappointed me cause it was so easy. I didn't think it was really a test more of a game. Everyone was surprised when I told them what it was. The quality of life questionnaire was equally as easy. My MRI was performed on the research machine, which is nicer and slightly quieter (still need ear plugs though). The MRI took about an hour and a half and was used to set up my IMRT (intensity modulated radiation therapy) treatment plan. I was told my radiation would start 2 weeks later, March 10th, how excited could a girl get to be irradiated?!
I worked 3 days that week and was planning on sleeping in when my boss called me at 7:30 am on Friday and said that he needed me at work since we had a fire and I was needed to solve the issues the fire caused. I got a good adrenaline rush and before I knew it was 12:30 and Cynthia was telling me to stop working and eat (what a good mom!). My boss was very appreciative of me coming into work and I very much enjoyed feeling needed there still. It was very fun since I was able to go out into the mill and see people that I hadn't seen in months.
We left work early that day and I continued on with my busy day going to dinner with my Aunt Terese, Uncle Mike, Carolyn and her housemate Katharine. We then went and saw Mark's band play and he sounded so good. I was very impressed with how well they did. Following the concert Katherine gave my Aunt Terese and I massages, which felt absolutely wonderful and relaxed me for bed.
Scottie had called me during the week and asked if I wanted to attend the Outdoorama with him on Saturday and all I could think was seeing him 2 weekends in a row would be fun. We walked around the Outdoorama for a couple hours Saturday morning talking and looking at trip fliers and boats, eating wild game sausage and talking. It was a lot of fun. Saturday night I went to Hell, Mi, with my Uncle Mike and Carolyn to listen to a family friend play in a bar band. It was really odd sitting in a bar and not ordering a drink, which I am slowly getting use to. We were out until almost 1 am.
On Sunday my cousin Carolyn and I went ice skating, which I was slightly concerned about falling and hitting my head, but none the less I went. I have been skating for 20 some years and figured it would be just like riding a bike. So I went out there and had fun skating laps and doing cross overs and stopping with out using the wall. It was a fun trip. My cousin and I then went out to dinner and talked a bunch.
Through all this I was just doing as much as I could in expectation of the radiation wearing me out.
The following week I worked and dealt with needless apartment problems, like not having full electricity for 2 days. It sure is a blast living on my own, but hey why not learn everything all at one time is my new perspective.