Tuesday, tuesday

The storm is long gone. We were out of power for 35 hours, but luckily had water so we could shower. We are inland, so we were rather lucky with the weather.  I felt awful during the storm, but survived. Nothing like having limited coping skills during a crisis, but we made it and all is safe and well. 

I am catching up on my rest and heading back to work tomorrow. Head is clear, energy has come back quite a bit since yesterday, and working on getting my attitude back.

FIL is not doing well and still in the hospital. 

Before the storm

Maybe it is the full moon. I am so sappy sad tonight and have been sitting here looking at old pictures from my childhood. So many pictures of the house. Missing my dad, the house, my hair, my old life. Not liking my scars, the pain, the numbness,  the side effects that I know are coming this weekend and some that will last for a couple of weeks. 

Last night my husband and I were tired from a long day at chemo and he was falling asleep on the couch. The phone rings at 9:00 P.M. His dad was being taken from the Assisted Living to the hospital. He has vascular dementia and has been in a residential setting for about 6 months. Often we get calls that he is going to the hospital for one reason or another and off my husband goes. I felt so bad for him last night though after spending his whole day in the hospital with me and then needs to go to the ER with his dad. 

FIL has pneumonia again. Last time we almost lost him, right now he is stable, but who knows. He doesn't know any or our names any longer. He doesn't read, watch TV, or do anything anymore. Just wants to eat and sleep. He was a civil engineer and a very active man. It is hard to see how much he has gone downhill, but there is nothing any of us can do. I was feeling guilty some last night  because I was more worried about my husband and the stress he is under care taking me, his dad, and his mom.

And the hurricane is coming. Sunday will be my hardest day with my chemo side effects. I can't be alone. My head gets too fuzzy and I can't even think. My mother in law could not be alone in a hurricane either. We could have had her come here, but I so need privacy during this time. God that sounds so selfish but it is true. I don't want anyone else seeing me like that.

My husband  reached out to his brother to come and help us out. He tries to come down on occasion and  help, but it can never be enough for all we need, especially now with me trying to recover. My brother in law stepped up to the occasion and is coming tomorrow to stay with her. She will be happier in the comfort of her own home and so will I. I am grateful we have my brother in law and that he was willing to come so my husband didn't feel torn once again between  me and his mother. My husband said he feels like he has two days off from care taking and it feels good to him. Even though he will be here waiting on me some when I am not passed out.

With all we have going on a hurricane is just making this life a whole lot more stressful! I am praying it will not be as bad as they say. We are getting automated calls from the power company already saying that if power goes out, it will be out for a few days! Yikes! No FB, Blogs, Words with Friends, e-mail.. I will go crazy!

All kidding aside.  I just want everyone to be safe and sound and get through this storm! Hope you are all prepared and I will be thinking and praying for you all.

The Experiment

I am so excited to hear that one of my favorite bloggers Kelle Hampton has a book coming out in April! I am so happy for her. http://www.kellehampton.com/2011/08/bloom.html Check it out! 

On another note, I am so happy today, because I figured out how to cut down my infusion time.   I always get hot flashes when I go to chemotherapy and then they have to stop the infusion run saline and it slows down the process. I believed the hot flashes were the normal ones I get all day every day, but they wanted to be sure it was not from the chemo so to be safe they had to follow the rules and stop it. 

When I get to the treatment room in the moring it is really cold in there. I always wrap myself up in a blanket and a shawl for my shouders and that keeps me warm. I started to wonder if that was making it too warm for my body once they started to flow the chemo. So today I did an experiment. I didn't wrap myself in the blanket. It was cold in the room, so I put the shawl which is lighter than the blanket over my chest. I was still chilly, but not cold so I put up with being a little chilly. 

They ran the chemo and for the first time I didn't have any hot flashes and they did not have to stop. I was home by 3:30 PM instead of 5:00PM! I really think not over heating my body helped me to not have the hot flashes!  It really pays off to pay attention to our bodies! I wish I figured it sooner, but glad I figured it out for today and for the next time!  I pass this on to others who might be experiencing the same thing I did.

Earthquake on Tuesday and getting ready for a Hurricane on Sunday. What is going on? 

A whole lot of shaking going on

I was at work today and my co-worker was on the phone with a colleague in PA. All of a sudden everything in her office started shaking and she realized they were having an earthquake and she quickly hung up the phone. Then we heard the reports from many of our family and friends who felt the quake here in CT! My sister said her chair was rocking, water coolers were shaking, stuff on walls shaking, a friend at the shore said her beach chair moved with her sitting in it. Buildings were evacuated.

I didn't feel a thing and I am very glad of that! We never have quakes here so this was big excitement for everyone. Fortunately, no injuries or property damage! 

I thought some of my blogger friends might have felt it as well since it originated in VA. Anyone feel it?

I am gearing up for round #5 of chemo on Thursday. Second to the last!  I can not wait to be going to the last one in September. Even though I will still have 13 infusions after the chemo, the side effects of the Herceptin on its' own should be much more manageable. And my infusion time will go from 7 hours to 90 minutes!

I hope anyone landing on this blog will see that cancer treatment does not have to be so harsh. When they say attitude is everything, it is really true! I have been doing so well because I decided to get better not bitter. I catch my thoughts and if I start to feel afraid or down, I start saying positive affirmations and and take my energy up so I will not spiral down!  I still have my moments. Sometimes while doing something very insignificant like putting jelly on toast, it will hit me that I am a cancer patient and I start to cry in utter disbelief.  Then it is over as soon as it began and I eat my toast. No burying the feelings. Just feeling them as they come and letting them go so I can carry on. I make the most of my days. No ruining them with bitterness or fear. 

Coworkers stop me to ask how I am and they always say to me, " I see you smiling, your spirits are up!" There is every reason right now for my spirits to be up... I have a chance at a cure! And I am working on it, baby!

Another update

It has been a great week for me. I took it off to have some time at home when I was feeling good to get some things done around the house and catch up with some friends. 

I went to lunch with one friend and other friend and I saw the movie, The Help. We both read the book and loved it and felt they did a great job with the movie. Very enjoyable and well acted. Today the husband and I went to lunch.

I had a burst of energy this week and I made a point to deal with some unsightly clutter that was taking over in our extra rooms. It feels so good to get clutter out of the way. I have one big box to bring to Goodwill and another box of books to donate elsewhere. What a wonderful feeling to be up and doing something productive around here! It may seem like a small thing, but it brought me so much happiness!

I have had another interesting situation rise up with a friend who is also a cancer survivor who complained to another friend that she wants to be closer to me and support me, but I wasn't letting her. Sigh. I have not pushed anyone away and I have reached out when I needed it, so I was surprised to hear this.

I have another friend who I am even closer with and she is also a  cancer survivor and I hadn't heard a word from her all summer. We connected only because I ran into her at the store and then we made a date to have lunch. I wondered if we had  not run into one another if I would have heard from her?  

She did say at one point that my cancer and the cancer of another person she knows was bringing back her own experiences. Maybe it is making her upset to be around us, so I tried to down play my cancer.

Oh well, things can get complicated with friends so I will see what happens.

My blood count has stayed normal this whole time. My hair is even growing back in! I have a little Afro going on and I even see hair on my legs coming back.  That is very surprising after 4 rounds of chemo and 2 more to go. I suppose it all could change during the next 2 rounds, so we will see. It is all an adventure to see what goes on with the hair!

And for all who say I am not complaining enough, I will complain about a nasty hemorrhoid that has been driving me crazy for a couple of weeks! LOL! An annoying side effect. But I am not letting it get me down!

Checking in

It has been a week since treatment 4. I was home for 3 days and went back to work on Thursday. It always feels so good to go back to work. It means that I am clear headed and feel motivated! When I am recovering from chemo, I always have a little fear that I won't get past the side effects ever again. So when I feel good enough to go back to work  it is a wonderful feeling and a good marker for me.

I am still dealing with some annoying and  painful side effects as the chemo does a job on my digestive system, but when I feel clear headed I can handle the rest of the issues easier. I hope to be almost back to normal by the end of the week. 

So sorry for the anxiety ridden last post.  When I shared some of those issues from the blog post with a friend, she said that now I sounded more normal and that up until last week, she thought I was acting too much like a saint she was worried about me. She said she has been waiting for the dam to burst. She actually said that she thought too much positivity was not a good thing. 

I was a bit taken aback about being told I was acting like a saint. So many people have been telling me that they are proud of me for how I am handling this and that I am so positive. To be honest, I feel that everyone is watching me and judging me. So what if I was having a more difficult time coping, would they not be proud of me? It is weird to hear some of the comments people say to me. 

I assured my friend that the dam breaks all the time. That is why I go to art therapy once a week and see my mind/body energy healer once a week. I think that is why I can appear so "saintly" when I see my friends and family.  I don't know how people expect me to behave, but I am just behaving the way I am. My friend said she would feel better if I said the F word a bit.  I said the F word a lot in the beginning when I was smashing dishes in my back yard. I have moved on.

Another person close to me said that she could not bear to see me suffering. I had to tell her that I would not say that I was suffering. I have been damn lucky that the side effects have not been worse. I see people at treatment that are suffering and I know the difference.  So I have to comfort her and encourage her to let go of that suffering story so she can feel better. It gets exhausting trying to comfort people who think they are comforting me.

I am taking this coming week off from work. I plan to  visit with friends and do some fun stuff! 

Resurfacing

Yesterday was one of my recovery days from Friday's chemo. I had hired a housekeeper to come and help us out and she canceled on Saturday when I was feeling better and came on Tuesday when I was feeling like death warmed over. She saw how I didn't feel well and she did the basics then left early. I was so glad to see her go so I could just relax and sleep. That is all I can do, sleep and let the foggy brained feelings pass.

My husband was gone all of Tuesday and stayed overnight with his mom as she was coming home from the rehab. He had to grocery shop for her, get her house ready, deal with newly found termites in her house, deal with water leaking into the house from a backed up gutter, and other stuff. Once again he was torn between leaving me alone after chemo and being with her. But I knew I would be OK and my son is close by if I needed anything. I could have had someone stay here, but I would rather ask when I am really in need. It is not easy for people during a work week to come and stay over. 

My  son stopped by after work and he took me to the drug store because I needed yet another medication for yet another issue that came up. He visited for awhile and we got to catch up. Even 5 minutes of seeing either one of my kids is the best medicine that I could possibly ask for. 

When my son was leaving he patted me on the head - on my new  peach fuzz head. It was just so sweet and my heart melted. I am so glad that both my sons are handling all of this so well. They are not afraid to talk about things and allow me to talk when I need to. I love that they are not uncomfortable seeing me with no hair and just treat me normal, just like the mom I have always been.

Share, feel, breathe, heal

This was one of the tougher weeks I have had since my diagnosis. On Wednesday, I became ill with pain and some other symptoms that led me right to the doctor's office by early afternoon. After the check up he put me on antibiotics for a slight UTI, but he thought that it might more likely be a kidney stone and sent me for x-rays. It was the day before my 4th round of chemo, so we needed to have some answers. 

I called my oncologist and they canceled my chemo for the next day. At first I was so disappointed. I was all psyched up to go and when they rescheduled me for next week, I realized how it was going to mess up my work schedule and then put me out another week for finishing up. I know setbacks come with the territory, but I was not planning for any!  :-)

I spent Wednesday with pain that waxed and waned and was pretty uncomfortable and worried about how long it would take to pass a kidney stone and how painful I have heard that can be. But in my gut, I didn't think I had a stone. I was convinced it was a UTI. And I was RIGHT!  X-ray did not show signs of anything and once on the antibiotic and a strong dose of Ibuprofen, I was good as new the next day.

But with chemo canceled, I just went to work as usual. The oncology department called me at 9:30 A.M. and said that the oncologist wanted me to come in for the chemo as planned since I did not have a temp and was on antibiotics. It sort of threw me that they called. I had work piled up on my desk to get through, I hadn't  packed all our  "chemo gear", I didn't even know if my husband was around to come with me, I had to find my boss and tell her I had to leave. I hadn't taken the rest of my steroids because they canceled me. I could feel my blood pressure go up, yet I wanted to go and get back on my schedule. So I started to rush around to get everything organized so I could go.

I call them back to tell them I am going to come. Then they said they would call me back to make sure my meds were there. I am running around trying to tie up loose ends, calling my husband telling him what to pack for me and just acting like a nut. All the while I am thinking... this is not a good way to go into chemo. I don't want to be a harried mess going into it, but I don't want to wait until next week either. 

Finally they call me back, "Lena, we never ordered your treatment meds since they canceled you. We are sorry, but we can't take you today, can you come tomorrow?" I was relieved, I felt my blood pressure go down, and going on Friday still kept me on my weekly schedule! So I was happy about that. But then I remembered I needed my steroids if I was going to be going on Friday and I had to run home and get them to take them. This whole fiasco took about an hour with all the calls and running back home. It all worked out, but I sure wish they had checked out the medicine situation before they called me and got me in a tizzy! 

And while all of this was going on, my husband was at the ER with my mother in law who was also not feeling well. He was with her all day long until she was admitted and feeling torn once again that he was not with me At one point I thought I would  have to ask someone from work to take me to the doctor, but by the time I had my appointment I was able to drive. 

Treatment day was a little more intense for me than usual.There was a younger woman next to me and everything was going wrong for her and it was her first day. They could not use her port for some reason, and they had a lot of trouble getting her veins, she was snapping at them for hurting her. She had the curtains pulled all around her and would not talk to anyone. When we were leaving she was gone, I never saw or heard her leave, neither one of us did.

I said to the nurse that I was feeling bad for that patient because she had a hard day and that she was all alone. The nurse said the woman's husband had been there and then could not handle it and he left her.
That made me feel so much worse for her.

The nurse said the woman didn't want to come back. I wish I could have talked to her and helped her, but obviously she didn't want to talk to anyone because she was so shut down. I don't blame her. So  awful when
the first day of chemo sucks so bad.  I kept feeling so grateful that my first day went so well, so that I was not afraid to go back.

On the other side of me were some serious sick patients with a lot of side effects and  not so good prognosis. Harder day when sitting with people who are not doing well. I tried to just listen to my music and
drown out the stories. It is awful to not want to hear, but it is hard sometimes, and I heard lots anyways and tried to be supportive and yet protective of myself and my needs.

I was very anxious when I got home. I realized that I was just dealing with all this stuff being thrown at me and yet had not processed it all. Being sick on top of cancer threw me, my mother law had been doing so well, now back in hospital (since discharged and OK!), worrying about my husband handling all this care-taking, being around and trying to be supportive to some very seriously ill people. I used to be hospice volunteer, so I have the skills to work with people, but it is different now being in the middle of my own recovery. It all got to me and I realized that I don't know what normal is anymore and it made me sad. 

Luckily, a friend called right when I was feeling so anxious that I wondered if I needed to go to the ER. Once I started to talk and tell her about the last 3 days, I felt the anxiety start to leave me, I calmed down, relaxed and felt like a normal person again. I had to feel the feelings of the past three days, not just try to run through the days like a bull in a china shop. 

Share, feel, breathe,  heal. That is how it works best for me. I slept like a baby last night. 

Sing a song

My husband and I decided at the last  minute to take the weekend and go to Vermont. We love going up there and decided while all the elders were stable, it was a good weekend to get away. 

We left right after work on Friday. Saturday and Sunday were just perfect weather days and it was so awesome to be up there. On Saturday afternoon we went to see a play called "Souvenir." It was the story of Florence Foster Jenkins. It was a very funny and poignant play and my husband and I both enjoyed it so much!

Here is the YouTube of the real Jenkins: http://www.youtube.com/watch?v=OBOuRlgoU2A&feature=related  She was a woman of wealth who was convinced she was a great singer. She sure wasn't, but developed a following anyway. She had her passion for singing and somehow what she heard herself sing was not what the public heard.

She reminded me of myself in a way. I LOVE to sing, but can not carry a tune. lol - I found myself thinking during the play that I wish I was like her and didn't know I sound awful. She got so much joy singing to her friends and even went to Carnegie Hall. But the audiences were not kind at Carnegie and that was her last concert because she died a month later. Some say she died of a  broken heart, but others dispute it. 

But oh, she had 12 years of singing her heart out and she made people happy even if it was not in the way she intended.

There were only 2 cast members. The piano player and the actress who played Jenkins. They were both fantastic! We saw the play at Weston Theater Other Place at the Rod and Gun Club. A very small (75 seats maybe) theater. We sat in the front row so that made it even more exciting! 

The next morning we went to breakfast and saw the actors in the restaurant so I had a chance to tell them both how great they were and how much we enjoyed the show! 

So if the play ever comes to your area, check it out!