In sickness and in health

It has been almost one week since round #2 of chemo. I am now on the upswing from the side effects and back to work after spending almost 3 full days in bed in a stupor. I was in a very foggy state of mind, very tight muscles from the shot they gave me to keep my blood counts up, and had some nausea that was manageable with crackers and eating regularly.  My tongue burns and everything tastes like metal. The hardest part is feeling so wiped out. I am only 1/3 of the way through this and I need to figure out how to get some energy into my system.  That will be my mission for the next time. And in spite of my complaining, I know it could always be much worse, so I am grateful.

My husband has been wonderful through out this ordeal. He has always been my rock but now I think there is new meaning to the words. 

Last Thursday after chemo it was time to get rid of my hair. I had reached the point of aggravation from it shedding all over and asked my husband to buzz it. We stood on the deck for awhile and we both ran our hands through my hair and watched it come out in clumps and then let the wind take it away for the birds. Then he got the buzzer and trimmed it very close so that I had just peach fuzz on my head. 

I handled it better than I thought I would. I had no tears and I while I was glad to have my bedroom mirror covered, I still looked in the mirrors in the rest of the house. Friday morning came and I got up and got ready for work with my wig. My husband was awesome. He usually goes to the gym first thing in the morning, but that morning he hung around waiting until I felt secure in my wig and then we went our separate ways. I thought it was so sensitive of him to hang around without my asking him to. 

So I got into my car and as I was pulling out of the driveway and turning my neck, I noticed that the wig cap underneath the wig was starting to roll up on my heard. "No, this could not be!" I thought to myself. "I am not even 5 minutes away from the house and I am having a wig fail!" The cap kept riding up and I knew that it was going to pop off my wig in about 2 seconds. So, I pulled over to the side of the road and pulled the wig off (hope no cell phone cameras caught me!) took off the cap and then threw the wig back on. It looked like a disaster now! I couldn't tell the front from the back! I was so frustrated and decide to just leave it and drive to work. I slipped in quietly and went into the bathroom and called a colleague for help with styling the wig. Everyone said that it looked nice, some couldn't tell it was a wig, others could tell because it is longer than my real hair. 

So mostly, the peach fuzz was OK. I went out on the deck with it, I let my son see me with it. So tonight I decided that I wanted my husband to finish the deed and make me completely bald. The remaining hair is achy and uncomfortable and it is still falling out all over even though it is so short. Time to be done with it. 

Tonight when I asked my husband to buzz it off, he hesitated a bit. I asked him if he was OK. To my surprise, his eyes filled up with tears and he said he would do it for me, but he didn't like doing it. I was so involved with how I was feeling that it never even occurred to me that he might be having a hard time. He said that he is OK with seeing me hairless, but seeing me bald just reminds him that I have cancer and the last couple of weeks when I was feeling so good after round #1 he was forgetting that I even had cancer. I was forgetting, too.

I so understood his feelings and I also why he tried to hide how upset buzzing my hair made him, but I am glad that he was able to share it. Because even though I have cancer we are in this together and I want him to be able to share with me. It is hard on the caregivers. I am the center of his attention. It isn't easy for a man to call up a male friend  or even a woman and talk about what he is going through. I have always been there for him to talk to and now it is about me and he feels like he can't.  We are best friends and I don't want that to change. I want him to tell me what he is feeling and get it out in the open, so I was grateful tonight when his tears showed me that he was hurting. 

We are learning to be more patient with one another than we have ever been. We will come out of this much stronger than we have ever been. Relationships are hard work, in sickness and in health. 

Ring them bells

Thursday was my second round of chemotherapy. It went a little smoother the second time around now that we knew the drill.

In the treatment room is a bell with a little poem on it that you get to ring when you are done with your treatments.

I was talking to a woman on Thursday who I met on my first round and she was told me it was her last treatment day. So I said to her, "Oh, you get to ring the bell today!" She said she wasn't sure she was going to do it. So I asked her why? She said that she didn't want to bother anyone.

In my head I thought it was so sad. That is something many of us women do. We can't bother people and have our own needs and desires. No, that is not for us. I have been there, I know how that works. Not self nurturing at all.

So I told her that last month when I was there for my first round and another woman was having her last round, I was inspired and hopeful when she rang the bell. My friend smiled said she felt the same way. I was glad she had the same experience as me and wondered if that would help her to rethink it.

So I continued and said, "I cannot wait to ring that bell and you best be damn sure that I am going to ring it more than 3 times. I am ringing it once for every freaking round! "

We laughed, we chatted about other things for awhile and then I strolled back to my chair to rest.

I kept my eye on her all day wondering what she would decide to do when she left. And then at the end of the day, I saw her reading the poem on the bell with the nurse and I knew she changed her mind.

My husband and I got up and went over to watch and clap for her. She rang that bell way more than 3 times with a huge, happy smile on her face. The nurse was hugging her and handing her flowers.

She was able to walk out of there a free woman and we got to go back to our drips with a full and hopeful heart.

Good for you, survivor woman! I don't even think we ever exchanged names, but I know I won't forget you.

Home is where the heart is

My first birthday in the house I grew up in

We closed on the sale of the house where I grew up in today. I have been preparing myself for this day for awhile now. Many of you know that my husband and I almost bought the house ourselves, but then had second thoughts when we realized we were doing it for the wrong reasons.

So now that it is done, this is what I have to say: I am incredibly sad. I sob when I think about how I will never be able to go there again. It has so many memories of my dad (who passed away a year and a half ago) and I will miss going there and feeling his spirit in the house.

Yet, in some divine business deal I believe the family who is moving in is exactly who should be buying the house. They are an Italian family ( like us) and they are coming from the same city to the suburbs like my mom did when she moved there. They want to plant a garden where my dad has his garden in the backyard. And they wanted to keep the shed in back of the house that used to be a porch on the house so it is an original part of the house. At first the realtor said we should knock it down, but the buyer's wanted it, and I was so glad they were keeping it.

They are an older couple with children in middle school. This is their first home. The kids were so excited, they had their bedrooms all picked out. The girl looks like my niece. The mother loves to cook like my mom does and they said they have big family parties like we did gowning up.

All of this makes me incredibly happy and I sob tears of joy.

It is all good, but bitter sweet and I am letting all the feelings just come when they want to. It just reminds me how absolutely wonderful it is to love something so very much that I can be so moved.

I know that house will forever be in my heart. I know that because I dream about it all the time and I am aware that I always will be able to go back to the security of my childhood and the love of my family. I don't need the house to feel my dad's spirit, I learned that in my first chemotherapy. He was there for me and I can call on him anywhere.

I will just walk through this pain and also this joy because having the house sold is also a relief. It has been so expensive and difficult keeping it up. A new family will love it and make their own memories in it. A family I would have hand picked had I had the opportunity.

It is all good.

Shedding

It has been many years since I have hair long enough to wear a ponytail. My hair has been short now for about 36 years. But I do remember what it used to feel like to wear a ponytail all day and then take it down and how my hair would feel like it was aching as I tried to get it to flatten out.

That is how my hair dresser described the feeling of my hair when it would start falling out. She said I would feel that achy feeling like when you take out a ponytail. It started on Saturday when I woke up, my hair was aching and I had a some strands of my hair on my hand. I had noticed a few strands coming out when I was brushing my hair during the week, but not much. In the past two days, more has fallen out.

I wonder if I should just shave it all off now, but a part of me wants to wait to see how it will happen. Maybe there is a part of me that thinks I will be spared total baldness. After all when my husband asked the nurse if there was going to be hair loss, she said there would be some thinning out of my hair. I said, "Really, everything I read said that I would lose my hair completely with the chemo I am getting." Then the nurse said, "Yes, you will lose it all." I wondered why she wasn't upfront and honest about the inevitable? Why would she not want to prepare me instead of out and out misleading me?

So I am waiting to see how long this will continue with my hair coming out strand by strand. I noticed my legs are completely hairless already. So no shaving legs for a while. I like how soft and smooth they look and feel right now, so that will be something to enjoy.

I don't want to be shedding and making a mess at work, so I will try to keep on top of this and make the decision to shave my head before too much is falling out all over the place.

Oh, the things that now occupy my mind now.

Weekends are good

Yesterday was a nice normal day. Usually I drive out of town and have my session with my mind/body therapist. She was out of state this weekend, so I had a Saturday off! The sessions are an hour and a half, and I drive an 80 minute round trip to get there, so it takes most of my Sat. afternoon. It is worth every second of it, but it is nice to have a day off!

My husband has been away for the weekend and my son came over yesterday to visit and brought his dog over to so I could play with him. We decided to go for some lunch and wanted to try out Sonic. They opened one up around here months ago, but we never went. The traffic and lines over there were out of control for months. It has slowed down a bit now and since it was later in the afternoon, we took a ride over there.

For those of you you are not familiar with Sonic, it is just another fast food place, with a gimmick. You drive into a stall and order your food through a speaker. When your food is ready, the girls skate to the car in roller blades and bring you your food. You sit in your car and eat.

I thought of Sonic for two reasons, one I had never been there I wanted to at least try it once, and my son had the dog and I didn't want to leave him behind. The dog sat in the backseat and snacked on baby carrots while we ate junk food. What is wrong with that picture?

Later in the day I met a friend for dinner. We talked all night long, and I barely talked about cancer, I am trying not to do that to my friends. It was fun!

Today I will pick up my mom and we will go visit dad's grave, shop, and go out to lunch.

My husband will be back late today, so we will celebrate Father's Day with him tomorrow.

Detour

When I had my chemo, I had some issues that made the oncologist recommend that I see my GI doctor which I did on Thursday. He wants me to have a colonoscopy to rule out colon cancer. That is the LAST thing I want to do or wanted to hear. And then I thought, so what if I did have colon cancer, then what? I am already on chemo. The doctor explained how I would have to be treated in between the treatments for breast cancer.

I could not listen to him and I told him so. I guess I was being rude, but I really, really, could not handle it. The way he was going on like some robot. In that moment I felt like I wanted to give up on everything. My attitude sucked and I didn't want to work on it. I was feeling scared.

He said he was going to speak to my oncologist and get back to me.

The rest of the visit did not go well. The doctor said some inappropriate and creepy things to me. I think he was trying to humiliate me. By the time I left, I could not look him in the eye because he sickened me. And I could not speak, I felt traumatized.

The last words he said was, "Don't worry, we will get you through this." Well, HE WON'T BE GETTING ME THROUGH ANYTHING! I will NOT be going back to him and I will tell him exactly why.

When I was driving home from the appointment, I wondered what my husband or my friends would say. Right then and there I decided what they said or thought didn't matter. I felt awful and I would not be returning to that practice. But as it stands my husband and the 2 other friends I told thought it was very disturbing and unprofessional as well.

I am sorry I can't share. Too disgusting to write.

Today I am back to myself, I will do what ever i need to do to look after myself and get well. I always need time to let bad news or disappointment sink in and then I can rally.

I am going to be very busy looking for a new doctor.

Hair today

This week I am scheduled for a full week of work. No treatment until next week. I am feeling completely back to normal and it feels so awesome!

The next thing I am preparing for is losing my hair. I picked up my wig on Saturday and it is in my room waiting for when I need it.

From what people say and what I read, I know many people find it difficult to deal with the hair loss. I have not had it on my mind too much. I am preparing for it, but I haven't spent a good deal of time worrying or dreading it. With that said, I have no idea how it will feel when I actually lose it all. I am curious now to see how I will react.

My dresser is directly in front of my bed with a huge mirror. When I sit up in bed, the first thing I see is myself in the mirror. I know that maybe I won't want to see a bald me first thing in the morning, so I have been taping up all my get well cards on the mirror. So when I wake up and sit up in bed, I see the cards of good wishes first thing. This will work just fine when my hair is gone.

When I went wig shopping I was thinking of getting a different hair color for fun or getting 2 wigs, one my natural gray and then one color. But when I went to try on the wigs, I realized that I wanted the gray one and only that one. I decided I didn't enjoy a new look. When she put the gray wig on me and I looked just like myself, I got a bit choked up. It felt so right and comfortable. I think I have enough changes going on in my life right now on so many levels, that all I wanted was a wig that would keep me looking like me.

When my niece walked in to see me, she didn't even know that I had a wig on. That is how perfect the color and the style is to my own hair.

The stylist was wonderful. She was very knowledgeable and so kind. She was involved with the passing of a bill in our state that allows insurance coverage for wigs for medical hair loss a few years back. An activist and stylist!

I feel like everyone on my team is so special.

Happiness Runs

I went back to work this afternoon after taking off Monday and this morning to rest up after the chemo.

It felt so good to be back at the office working on my computer, answering calls, and doing what I
do. People were happy to see me and I felt like I was home.

My co-worker who put off her mammogram for 5 years went on Friday and everything was good! I thought she was brave to go and get it done! I loved seeing her happy face this morning, free of all that stress she was holding onto about her health.

As I walked around the building today and I listened to the scuttlebutt in the background, I heard people going on grumbling about this or that. Of course, I remember being like that when I didn't have my hands full with cancer. I want to stop and tell them to enjoy their life and to stop with the grumblings. But I keep walking and I hope that when this is behind me that I don't start falling back into old grumbling habits.

Happiness takes work on a daily basis and I so need to remember that!

My Hero

My therapist taught me some breathing techniques to do during chemo to help me pull in divine light through my body and flush the toxins from my system. I don't find that easy, but I was willing to give it a chance as I want to do anything I can to heal myself.

When they started putting the Benadryl into my I.V., I really had a hard time staying awake. I got very woozy so I just put on on my trusty sleep mask and turned on my iPod and tried to relax. I could not even concentrate on the breathing techniques, but I didn't want to lose the light. So I kept visualizing the bright white light running through my body.

All of a sudden, I saw my dad. He was popping up out of the heavens dressed in a shirt that I remember him in when I was a kid. He was filled with the light and dove right into the top of my scalp and swooped his way down my body and came out from my feet with his hands straight out in front of him pushing all the cancer cells out of my body.

I thought he was just like Superman. So then I visualized him diving in with a Superman Costume and flying all around me protecting me. It was a very comforting image. My dad protecting me, healing me, coming to my rescue.

My dad, my hero.

It is all good

So I had my first infusion today. 5 left to go! I was there from 9:30 A.M. to 5:00 P.M. It went pretty well. We learned the drill and met some really great people. I had some issues with hot flashes so they would stop the IV and then let me cool down with same saline solution. They also had to stop once and change to a longer needle in my port because I was feeling heat in the port. But these were minor glitches.

We had cell phone service so I could call my family and keep my mom updated. Mostly I rested and listened to music on my iPod. My husband stayed next to me and read the paper and his nook, and we had lunch together.

I saw a lady with a really cute hat and I asked her where she got it. Come to find out I had the catalog with me that she ordered from. So I sat with her and she showed me all the things she had ordered and loved and some stuff that was not so hot. It was so nice to have some assistance with that type of thing. So much to chose from!

Although it was a long day I had scheduled to go to the hospital's Art Therapy class tonight. So after kemo we went home and my husband cooked dinner and then drove me back to the hospital for a 6:00 P.M. class.

I am on steroids and they are reeving me up! I have a lot of energy and was so excited to go to the class. One more day of the steroids and then the nurse said I will crash. Oh well!

I love art, but I was never good at it in school, so always backed away from it, but it is something that I thought would be a good creative out lit for me during this recovery period that would be different than my Saturday morning therapy and the mind/body work. (Sometime I will post about that but it hasn't felt right just yet.)

I have a two fold story about the Art class. First my picture. I can't draw for crap. So we were supposed to set an intention for what we wanted to get out of the class. I said I was interested in art therapy because I had a weekend with an art therapist in Graduate school and I realized how much I enjoyed the activities and I learned a lot about my self. In hind sight I saw that art classes from my public school days did nothing but stifle any artistic ability I may have had!

So I just picked up my brush and started painting colors. I just let my intuition pick out the colors. When I was finished I remembered that a long time ago I learned about colors. Purple is the spirit center, yellow heart center, Red for courage, Black - I used it as despair tonight, but I am not sure that is what I learned about it. I am looking high and low for my notes, but can't find them. This class was 26 years ago. LOL>

Anyways, when it was my turn to share, I said that I realized that I made the colors of the different centers that I have been moving through since my diagnosis. I explained what each color meant. I decided that since my portions were just about the same, (it doesn't quite look like that in the photo, but I think that was due to the angle) that I had been spending just about an equal amount of time in each one, not stuck in any one in particular center. So I was OK with my picture. The other patient and the social worker thought I was making the German Flag! LOL!! I had no idea what the colors of the German flag were!

During the art work time we shared a lot of feelings about the diagnosis, taking care of ourselves, and other things going on in our lives. It was a nice intimate setting and I know I will enjoy going there and will work on not being so self conscious about my art skills. I told the art therapist that I love words and quotes and visual art work and she said she would work on getting some of those type of projects for us to do!

So that was the work at the class, but there was something much more profound that happened during that class.

I was surprised that there was only one other patient there, they told me that they had another member but she passed away a couple of weeks ago. They were speaking so highly of her and missed her so much. Come to find out I realized they were talking about a woman who was the mother of my son's friend. I never met her, but had been praying for her because my son would come home and talk about his friend A. and how hard it was for her with a dying mother. It broke my heart and then a few months later, I was diagnosed. I know that scared my son because A. mom had breast cancer as well.

I also told them how A. had asked my son if my husband would play a favorite song in her mom's memory on his radio show and my husband did a beautiful set of songs for her and the whole family (aunts, uncles, cousins) sat around the radio to listen to my husband's show. The dad told my son that it was beautiful and it helped them to get ready for the upcoming services. While I was telling them the story of A. and my son, and my husband and the music. We all had healing chills up and down our spines. The art therapist turned to me and said that it was meant to be that I was joining the group. I felt the same way. It is a small world and we are connected to others in ways we don't really know.

My day started with a dozen white roses from my husband. When I got home there was a beautiful flower arrangement waiting for me on the front stoop from my son and his girlfriend in RI.

It has been a long day, a day that I have been dreading, but there were so many great moments today. Moments of inspiration, love, connection, and feelings... a whole hell of a lot of them! It was a good day. I met some new wonderful people. I found a new place to belong.

It's all good.

Kemo eve

Thank you for all the comments. I am not pissy, you all made me laugh!

There were two times when I felt brave. Both times were when I was asking the oncologists about some alternative treatments that were not scientifically based. To my surprise one doctor allowed the treatment in conjunction with the chemo, but you have to get the drug from Germany and it is expensive. The other doctor not so much a believer, but he was very respectful to me. No eye rolling! :-) It is always a little scary to go out on a limb and ask something outside of the standard practice and I was nervous about it, but I did it.

Last night was the first time I didn't sleep well. I didn't want to go to bed and stayed up until 11:30 P.M. on a work night! Unheard of for me! But it was also so humid in the house so that didn't help! So tonight I am so tired that I am hoping I will sleep very well. Then all I have to do tomorrow is get up, put one foot in front of the other, and show up at the hospital. I will put myself in their hands with my inquisitive nature of course!

Today a coworker came up to me and told me that she had her last mammogram 5 years ago and they had some concerns and had her go for a biopsy. They didn't find anything. But she has been afraid to go back all of these years. She told me that I was her inspiration for making the appointment to go because I have been walking around work so strong. I am happy that I can inspire women and I am so praying everything will turn out fine for her.

DREAM

I had a great dream the other night. It was sort of like a movie you know when you see someone sleeping and then their spirit leaves their body and walks away. Well I was sound asleep in my bed and had that experience of getting up and walking away from my body. I thought I heard my youngest son (age 26 living in RI) come home. He walked in my room, it was dark in there. I said," why aren't you in RI?" He said he came home to see me and when he came closer to me and hugged me, he turned into the little boy he was at around 10 years old. He had his young boyish voice and longer blond hair. It was the coolest dream ever to sort of go back in time like that! I didn't even remember the dream the next morning, only later in the day when he called me, the dream came back to me! He thought it was pretty cool, too!