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Monday, November 28, 2011

Burn baby burn

I woke up around 3:00 A.M. in the morning due to the stinging from the burn under my arm. I was laying there trying to get back to sleep and I was feeling frustrated that the pain was keeping me awake. I was dreading going back to treatment today, thinking that it would be all down hill now. 

To my surprise, the technician told me that today was the last day they had to treat the entire breast and that one of the burned areas would no longer be treated so it would start healing. There is a possibility that the area under my arm might not need any more treatment either, but she won't know until tomorrow. 

For the next 7 days, they will only treat one area. It will be more concentrated, so I imagine the same thing could happen. I don't know. It isn't like they tell you unless you ask and well I just didn't. I will wait and see what happens. One day at a time. I have some gel pads that the nurse gave me for the burned areas and I am hoping that helps and that I will sleep better tonight. 

So it is a bump in the road. The nurse said I am doing well, if all I have is the skin problems. She was impressed with how much energy I had over the weekend.

And for some very strange reason the scale read exactly what it did when I got weighed last Wednesday. That could not be possible with all I ate this weekend. I was wondering if some sympathetic nurse messed with the scale so all the patients would feel good today. lol


Sunday, November 27, 2011

Thanksgiving wrap up

A couple of days before Thanksgiving a friend called to see how I was doing with my treatments and was just absolutely astounded that I was hosting Thanksgiving dinner. She said that it was too big a meal to get on the table while I was undergoing radiation. I knew that I could very well handle it because I enjoy doing it,  my husband was going to help me, and most of all I had energy!  I am burned and blistered, but when I have things to do, it takes my mind off of how I am feeling.  My knees are a problem, but I was taking my meds and pacing myself so I knew I would be able to pull it off. I also gave myself silent permission that if I did need to excuse myself and take a nap, I would.

It really was the least stressful Thanksgiving I have ever put on. I just decided to relax and just do what I could. I did not go crazy over preparing and I asked people for help when I needed it. So simple, but in the past I made it so hard for myself.

I made an 18 pound turkey, a sour cream pumpkin pie, corn bread casserole, green bean casserole and stuffing. My husband made the mashed sweet potatoes and my MIL brought creamed onions. I also bought a small dutch apple pie and my DIL made cream cheese brownies. DIL also brought an artichoke dip for an appetizer. Everything was delicious. 

The next day we were invited to visit my younger son's new apartment and meet his girlfriend's parents and brothers and have dinner with them. My son moved to RI in May the day before my lumpectomy. I haven't had the time to visit him up there since. So he was very excited we were coming. We had a wonderful dinner with all of them and got along so well. 

I had given my son the dining room set from my mother's house. His new apartment had a huge dining room and he was the only one who could really use it.  It made me feel good sitting there thinking about all the Sunday dinners and birthday parties we had around that table and yet sad at the same time. Looking around the table at all new faces sitting there was an odd feeling. Someday those people will be my son's in-laws and I thought to myself that we were starting a new tradition with new family around the table.

We spent the night at a hotel and I had a chance to soak my legs in the hotel hot tub and it felt so wonderful to my aching joints. 

Today, we spent the afternoon at a 40th wedding anniversary party for my cousin. It was a surprise party and boy, were they surprised! I love a good surprise! It was great to see my cousins and family and we enjoyed an Italian buffet with a rum cake for dessert. When we were kids my grandmother always ordered rum cakes for parties and none of us had eaten a rum cake in years. It was nice to have it once again as it brought back good memories for all of us. 

I enjoyed having a four day break from the hospital! I was hoping my burns would have healed more than they did with the break and I am a bit nervous about how much worse 8 more sessions will make them. But like everything else that goes along with the cancer, I have no control and can only do my best managing the side effects as they arise. 

What I feel is very unjust though is that Monday is weigh-in day in the radiation center.  I think it would be heartless of them to make us get on the scale after Thanksgiving weekend.!

Wednesday, November 23, 2011

Thanksgiving

So this woman has hair! It is coming in pretty slowly, but it is coming in! I am not sure how long I want it to be before I can ditch the wig, but with the fall/winter weather hair this short makes me feel very cold. If it were summer, it would be a different story. 

I never completely lost my hair. My husband gave me a buzz cut soon after it started to fall out and I thought the rest of it would fall out as time went on. Everyone said it would, but to me it seemed to be growing a little bit. More fell out as I got further along with treatment, but I was never completely bald. 

I am now on my 5th week of radiation. Treatments have been going well. I do have some burning and blistering on my skin, but no infections. Compared to what they see, it isn't too bad. After today's treatment I will have a nice break over Thanksgiving. I get to stay away from the hospital for 4 straight days!  The break will give my skin a chance to heal a bit and then I go back on Monday and have 8 more days of radiation! There is light at the end of the tunnel! 

I am having Thanksgiving at my house tomorrow. It will be a small crowd. Me and my husband and sons and daughter in law, and MIL and BIL. Just the 7 of us. I am having a hard time with my knees so I am doing as much as I can sitting down. The husband did all the cleaning and he is helping me cook. The kids will do all the clean up. It is hard for me to not do it all because on some level, I enjoy it. But I am finding my stress level is way down not worrying about all I have to get done. 

I want to thank all my blogger friends for hanging in here with me. I appreciate the time you take out of your busy day to read my blog and comment. I get so much from your support and kind words and so enjoy reading your blogs as well.

I have much to be grateful for this Thanksgiving and everyday. I wish you all a very Happy Thanksgiving with all of your loved ones.



Saturday, November 12, 2011

More of the same

 A few years ago, I had knee surgery, but it was clear that I needed a complete knee replacement in the near future. My doctor didn't recommend it for me because I am under 60 years old and he said if I had it early than that I would need it again by the time I am 80.  So for the past few years I have been in pain with my both knees and they have gotten progressively worse. At this time I am in more pain than I have ever been and medicine is not really helping much. At times it is excruciating. I believe this severe pain is a side effect from the chemotherapy on my joints, exacerbated by the fact that I have gained weight during the chemo, and that my joints were inflamed to begin with.

So while I am feeling pretty good post chemo and during this radiation period, the pain in my joints and stiff muscles have affected my mood this week. My quality of life is suffering. I think I am going to have to take yet more time off from work to see the orthopedica doctor. I can not do appointments after work because I go straight to the hospital for radiation. Maybe a cortisone shot would help hold me over until treatment is done. One knee is so sore that I can't kneel on it and I have difficulty bending my leg.

I did go to the massage therapist and she gave me some things to do at home to help my muscles stay loose but that is only helping minimally at this point. 

Friday did me in. I was all over the campus touring, then to a hotel for a professional development that I was in charge of.  So I keep running back and forth to the front desk for this or that.  Then walking around the hosptial for treatment and an appointment with my surgeon. By the time I left her office I was taking baby steps because it hurt so much to move.

I see my surgeon every three months. She is vivacious, warm, and so upbeat. Her energy is infectious and I feel good just having a brief encounter with her. She said that I am healing beautifully. She also said that it was "too bad that I couldn't whip it out once in a while and show people because it would be good advertising for her." When I was leaving, she gave me a big hug, like she always does. And while we were embracing she whispered into my ear, "I am so glad that your hemorrhoids went away."  LOL  




Friday, November 11, 2011

Here and there updates

Radiation Update

I am on my third week of radiation treatment. I fell easily into the routine of running out of work at the end of the day and getting myself to the hospital for treatment. Now that I am used to the routine, the treatment doesn't seem to take as long. I think I am there a total of 15-20 minutes, and I get the beam for about 5 minutes. This week I have sunburn under my breast and it is very annoying. While they give me cream to  minimize the burning, they don't give you anything to apply that will sooth it. Bummer.

The man before me at radiation finished his treatment yesterday. As he came out of the treatment room and into the waiting room, he wished me luck. Then he turned to me and the technicians and spread his arms wide  and said, "There is nothing else left to say." So much is unspoken in these situations. But the silence is powerful.

Art Therapy

I am still attending Art therapy at the hospital. In fact they interviewed me for their hospital newsletter. I don't think it is out yet and I am anxious to read it.

Last night the therapist had us  trace a whole body on our paper. Then we had to chose colors or images that represented our pain and put them on the painful part of the body. After that we had to pick a color to go over it that would create healing. 

There were only 2 of us in class last night and we went right to work. When we were done we talked about the process. I picked the color brown to represent the pain, because the pain is shitty. When I looked at the drawing and saw the visual of how much pain I am in, I was taken aback. No wonder I have been dragging myself around all week. Then I picked the color purple as the healing color and colored in the whole body, front and back in purple. I picked purple because it is the color of spirituality, the balance of mind, body, spirit.

Then the woman next to me talked about her work. It was so ironic that our bodies were almost exactly the same. We used the same colors for pain and both used purple for the healing.  She added orange around the edges to symbolize the light radiating from her. 

After she spoke the therapist noticed that all three of us were wearing purple tops, purple, our healing color. It gave me the chills when she said that. 

Healing chills. 




Sunday, November 6, 2011

Secrets

I have been reading the Post Secret blog for a few years now. ( http://www.postsecret.com/) It is a blog that people send their secrets to, things that they have never told anyone else, and they are posted on this website. It is an anonymous catharsis for many who want to relieve themselves the burden of carrying around a secret.The website took off and there are now Post Secret books and an App for the iPhone and iPad.

I look forward to Sunday mornings when Frank Warren posts the new secrets on the web.  I find so many of them very poignant and inspiring as well as very sad at times.  Frank has taken Post Secret on the road speaking at college campuses all around the country. I have been keeping my eye on his schedule for a few years and he finally came to CT on Friday night. 

I was very happy that the college had power and that the event had not been canceled!  It seemed like a great presentation to attend after such a crazy week with no power.

I wondered if we would be the oldest people there since it was held at a college campus. Although we did see some adults who were older, my husband and I were by far the oldest ones attending. I took that to mean that we are just cool old people. lol

My husband does not follow Post Secret but agreed to come along. He didn't know what to expect at all and he was pleasantly surprised. He enjoyed the presentation as  much as I did. 
Frank Warren is an excellent speaker and shared quite a bit about his own life and how he started the project. He shared some secrets that he could not put into his books due to copyright or content. 

At the end of the presentation, they had microphones set up and people could line up and publicly share their secrets with the audience. It was very emotional. One in particular was from a college freshman who was a blond blue eyed beauty who did very well in school. The other students who envious of her brains and looks. She was attending the event with her mom. Her secret was that she has thoughts of self harm and has razor blades hidden in her room. She was very nervous telling her secret and she was crying. 

Maybe standing in the twilight lit auditorium filled with compassionate energy gave her the courage to finally let go of her secret. I wasn't sure because she was crying and her voice cracked at the end, but it sounded like she was telling her mom for the first time. 

Frank Warren does a great job of making people not feel so alone and creating community. I was very impressed with him. At the end of the event, my husband said he felt like he had just gone to church. I felt exactly the same way. I felt connected to everyone there even though we were all strangers. There was a powerful healing energy from the audience to the people who had the courage to share their pain.

Post Secrets resonates with so many, that is why it has become such a phenomena.And maybe it is no coincidence that the secrets are posted on  a Sunday.






Saturday, November 5, 2011

Black out

We just got through 5 1/2 days with no power due to the freak snow storm on Oct. 29. Our power went out on Saturday at 4:15  P.M. and came back on Thursday night. 

Since the trees still had leaves on them the snow made the branches so heavy that the trees and branches were crashing down everywhere in our state.

Our wires are underground so we have rarely lost power in our neighborhood in the past. During the tropical storm Irene we were out for 36 hours, but it was August and it was warm so it wasn't that big an adjustment.

So I expected that this time around, power would be back soon and all would be well. I was very wrong. On Sunday we ventured out and could not believe what we saw. Downed trees and power lines everywhere. Power was out all over town and all the towns adjoining us. That means all traffic lights OUT! Driving was harrowing as some people would drive right through the intersections.

Many gas stations were out of power and closed. So the ones that were open had gas lines longer than I have ever seen before. The cars were lined up right in the streets causing all kinds of traffic jams and heated tempers. 

Many local restaurants were also closed so it was difficult to find places to get food and when we found places open, the lines were very long.

My 90 year old MIL was home alone. When we got to her house we found that she was managing very well with the fireplace and wood stove going. She is a very independent woman and never left anything entirely up to her  husband, so she knew how to light the stove and build a fire. She was able to make coffee and heat up food on the wood stove, so she seemed to be doing better than expected.  

When we visited again on Monday, the wood stove  did not seem to be functioning properly. The house was a bit smokey. MIL insisted the stove was fine and just a little smokey when it was first lit. To make a long story short, my husband ended up turning it off because it did not seem to be getting better and told my MIL that it was unsafe and that we would take her to dinner for a hot meal. She was not happy that her stove was turned off and refused going out to dinner because it was Halloween and she wanted to be home for the trick or treaters. Well, no parent in their right mind would be sending out kids with no street lights to home and power lines down everywhere, but she insisted on staying home. So we decided to bring her a meal from a local restaurant.

We went back to the house later with her meal and she had turned the stove back on again and the entire house was filled with smoke and she was denying that anything was wrong with the stove. It scared the shit out of me to see her in potential danger. 

We called my BIL and he came the next day and took her back to his house out of state so she could be safe and warm. And better still we did not have to worry about her since we had to worry about ourselves. 

I found that sleeping with pajamas, bathrobe, socks, a blanket and 2 quilts we stayed quite comfortably warm during the night. But during the day we could not wait to get out of the house. 

The whole week was exhausting on every level. 

My 86 year old mother lives in Sr. housing. They had a generator for the community room so the residents were down there during the daytime staying warm and cooking food. The management held Bingo and card games to keep them occupied in the evenings, but they all had to return to apartments with no heat. All of my family had lost power so no one could reach out to my mom and take her in and keep her warm at night. When our power finally came back on on Thursday, we went right over there and picked her up and took her home to our house. I hated not being able to help her sooner.

During the day we spent time driving all over creation. It was too cold in our house to stay here so we had to make a plan of where to go to get warm. I started to think about the homeless people and how they have to live like that everyday when the shelters close in the mornings and they get sent out to the streets again. Had the temperatures dropped we would have ended up in a shelter ourselves since everyone was out of power (except for the folks with generators)and no one could take us in. It was a humbling thought.

This situation has caused a great deal of anger across our state since it has taken so long for the power company to restore power. Many homes are still without power today. We had to wait for crews from Canada and Missouri to come and help our electric company. Seems our state didn't pay the out of state workers for their help with storm Irene so they refused to send help at first.

There have been many storm related deaths in our state. People dying from carbon monoxide poisoning from poorly vented generators, bringing gas grills into the house, and some traffic related incidents as well.

Today most of my family has power. MIL back at home with power, and my mom in her apartment with power. I have never been as happy to cook, vacuum, and do laundry as I am today!