Wednesday, July 6, 2011

The Long Hot Summer

It is nearing my fourth year from diagnosis and I am worrying again.  I am working at Living Beyond Breast Cancer organizing their Yoga on the Steps event, www.yogaonthesteps.org .  It is wonderful work and I love it.  The only thing is that I worry in the summer.  I worry about my health and getting enough rest, etc....

So that is my thought for today.  Until next time.... hope everyone is well.

Sunday, January 30, 2011

Jailbreak

Here is part two of the crazy hospital story. So I get the Benadryl and I am getting drowsy and then it is about 10:30. The IV is beeping just about every twenty minutes so I have been trying to walk around as much as possible to avoid staying in the room.


My husband, not the nurse or the assistant nurse, changed my bed linens because they were dirty. She shooed us away, telling us there were too many patients to tend to and she couldn’t help us with the sheets. The woman next to me, when she was coherent, informed me that she had had major abdominal surgery for a blockage and that she had E-coli. Of course, I wanted to stay as far away from that as possible.

So we settle in, hoping to get some rest. Then the nurse comes in to change the other patient’s sheets and to get her out of bed. I have no idea what time it is, only that it is late. The nurse proceeds to turn on the TV. I am agitated and tired but still trying to fall asleep. Then the beeping starts again. Over and over. It keeps going on for two hours every twenty minutes until my husband finally got the nurse and started yelling (which is completely out of character for him).

“When are you going to stop that IV from setting off the alarm? My wife’s recovery is being compromised because she can’t sleep. What are you going to do about it? He was glaring at the nurse.

“There isn’t anything we can do. The IV is in a funny spot on her elbow and we can’t move it because all of her veins are compromised.”

“Well my wife’s care is being compromised because of this. What are you going to do about it?” His face is turning red and he is pacing back and forth in the tiny space as the TV hums in the background. Now I have had it.

“I want you to call my doctor right now. I want to go home.” I blurt out to the nurse almost surprising myself. “I am not going to spend another night here without sleeping.”

She turned around and agreed to call the doctor. I couldn’t really believe that I had put my foot down like that but I was at my wits end. The TV was still on and it was 12:30. As crazy as it seemed, I felt like I was in the twilight zone and the longer I stayed the worse things were going to get.

The nurse finally contacted a resident who released me at 2:00 a.m. An orderly wheeled me to the parking garage where Mike had parked the car. At around 3:00 a.m. we arrived home to my startled parents and children (my mom and dad flew up that morning). I climbed into my bed, glad to be nestled between my own clean sheets. I was glad to be home.

Thursday, January 27, 2011

Guest Blogger

Just wanted to let everyone know that I was the guest blogger for Living Beyond Breast Cancer yesterday.  The web site is http://living/ beyondbc.wordpress.com Enjoy!

Wednesday, January 26, 2011

The Surgery

I am glad to say that the surgery went well (or so it seems so far) but the whole hospital experience was a nightmare. We arrived at the hospital on time on that snowy day and it ended up that my surgeon was three hours behind schedule. She didn’t actually start my procedure until 6p.m. and by the time I came out of recovery, my husband had been kicked out of the visitor waiting room because it was closed and had to wait for the doctor in the main lobby of the hospital. Then, to make matters worse, when he came up to see me in the recovery area, we were informed that there were no more hospital rooms available so I would have to spend the night in the “holding area” and he couldn’t stay with me because there wasn’t even a chair to sit on. So at about 1:30 a.m. he left me and went home.


Around 2 a.m., they miraculously found a room for me in the kidney transplant ward. I was wheeled into a dark hospital room. Was there someone breathing on the other side of the curtain? Everything was dark and silent where I couldn’t tell if there was anyone in the other bed or not. But the silence didn’t last long. After about twenty minutes, the patient in the other bed moved her arm and set off the alarm the alarm for her IV. The IV was in a precarious place on her elbow so that every time she moved a certain way the alarm would sound. This went on all night long about every twenty minutes. Even though I was on serious pain medication, the noise disrupted my sleep. It was a long and strange night as I drifted in and out of vivid dreams and the beeping of the IV machine came and went.

In the morning, the nurse came in to take my blood pressure and the doctor was two feet behind her. “74 over 36. Are you lightheaded?”

“Yes,” I said, “I feel a little bit dizzy.”

“We will come back to take it again in a half an hour, but we can’t release you today with your blood pressure so low.”

Great. Where was Mike? I was not feeling well and now my blood pressure was getting dangerously low. Beep, Beep, Beep, there went the IV again!

In a half an hour the nurse took my blood pressure again. Still very low. Another hour went by and she took it again. Still low. “You can’t go home tonight.” Came the definitive word from the resident. Where was Mike? As she wheeled the blood pressure cuff out of the room, Mike poked his head in. He looked way too refreshed. It was 10:30.

“Where have you been? It is 10:30.” I was furious. “”What have you been doing? Why didn’t you get up and come here early?”

“I slept until 9 and then made a couple of phone calls and came here. I got here as soon as I could.” I was beyond angry now, I think I was more incredulous at his lack of caring. What loving man would leave his wife alone in the hospital while he slept in and drank his coffee and  probably read the paper too? Well, mine of course. I wasn't surprised, really, so I tried to explain how the situation was going.

“My blood pressure is very low and I am lightheaded. The patient next to me has an IV that keeps setting off the alarm and I didn’t sleep much last night. I can’t go home tonight because the blood pressure is so low.”

“Okay, did the pressure go up at all?”

“No, it has been consistently  low.”

“Well I guess we are stuck here for now.”

So the day wore on and once they took me off of the pain medication my blood pressure improved. I still had to stay for the night so we tried to settle in. I ate a little bit of dinner and asked for Benadryl to help me sleep. Then came the evening hours and next; the jailbreak! More on that tomorrow.

Wednesday, January 12, 2011

My Little Lambs

I am heading to surgery in a couple of hours and I feel like I have finally calmed the nerves of the littlest Egan’s. They have been so full of worry and trepidation over the operation it has been difficult to keep my own anxiety at bay.


Before Christmas, Luke overheard me talking about the fibroid and the possibility of surgery. All of a sudden, he began sleeping more and feeling completely exhausted. Over the break, when we were visiting my parents, he confessed that he had heard us talking about me going to the hospital and he was convinced that I had cancer again. He was sure that I was lying about the tumor being benign. I put my ten year old (who is almost as big as me) in my lap to try to console him. I explained the procedure (kind of) and told him that truthfully I was just going to have some minor surgery and it wasn’t cancer.

“How do I know that I can trust you? You said the same thing the last time you had surgery and it was cancer. How do I know that you aren’t lying?” He cried, clearly agitated and scared.

“Luke, I know that when I had the last surgery we didn’t tell you it was cancer but that was because we were advised to tell you what you were capable of processing by the psychiatrist. In hind sight, we should have told you more because you understood more, but we didn’t want to worry you.” He seemed mollified and gave me a hug.

“I love you mommy.”

On the way home in the car, we decided we needed to tell Bridget about what was going to happen. She was merrily listening to songs on her I Touch and could hardly put it down to hear the conversation.

“Bridget and Luke,” I began, “Mommy is going to have surgery in a couple of weeks and I will have to go to the hospital for the night. Are you going to be okay with that?”

“I already know about it. I don’t need to hear it again.” Luke retorted.

“Who is going to take care of us?” Bridget inquired.

“Mrs. Wilson is going to watch you for the night.”

“How will we get to school?”

“She will take you on Thursday and Daddy will be home the next day to take you.”

“Okay.”

With that she put her headphones back on and returned to her music. I looked over at Mike and shrugged my shoulders in disbelief. It couldn’t be that easy and of course it wasn’t. As the time has drawn nearer and nearer new fears and old memories have arisen.

“You know mom, I love you so much but I am not sure that I should love you. First you make me love you by being the perfect mom and doing everything great, then you get surgery and cancer and I have to go to a new school and you are not there and now you are having surgery again. I almost think I would be better off if I didn’t love you so much.” Luke spouted after dinner the other night. Instead of being upset by the conversation, I couldn’t help but admire his ability to put his anxieties into words. I sent him downstairs for a session with the resident psychiatrist to watch some sports and talk it through. That seemed to work well, at least for the moment.

On the way to school the next morning, Bridget expressed her anxiety in more practical ways. “Mommy I am scared. What if daddy doesn’t know how to find my school? Will he be able to take care of me?” I assured her that daddy would in fact find her school; he has been there before and for a couple of days daddy will be able to take care of her.

As I sit her now and look out at the eight inches of snow on the ground I am thankful there was no school and my surgery is scheduled for the afternoon. What a blessing. We had an opportunity to watch a family movie last night and snuggle on the couch. I had one arm around each of my children as they proclaimed, “I love you mommy,” more than once. They are calm and their fears have been allayed. Now I just need to go and pack my bag.

Wednesday, January 5, 2011

Resolutions

It is time for New Year’s resolutions. Mine are pretty simple and straightforward. I have dedicated 2011 to listening to my heart and taking care of myself first, which, actually I think are one in the same. I often put others before me and as a result, I have felt compromised. I have decided that this year is my time; a time to make things different. It is my opportunity to make peace; with myself, my mother and my husband. As my yoga instructor succinctly put it, you can’t move forward until you find forgiveness. Without forgiveness you are stuck. I want to get unstuck this year and also be true to myself.


First thing I am doing is getting this large fibroid tumor removed. Sorry to be so blunt and forthright but I can’t really beat around the bush. It has to go. It is getting in the way and as much as I don’t like having surgery, I know that I will like it even less if it continues to grow.

Of course, my mother can’t be here for the surgery because she has to go to the Dominican Republic to bask in the sun. The cold weather is getting her down. It is getting me down too but I am not retired and can’t run to the sun on a whim. I guess I could be upset with her on the one hand and yes, I do find it hurtful, but she has her own demons to deal with and I can’t solve those issues for her. As my husband said, “I know it hurts that she isn’t more supportive but don’t underestimate what losing a mother to cancer when you are twenty can do to you.” So, in the spirit of a true yogi, I will overlook this flaw and try to be mindful of myself and my needs.

This is where the making peace with myself part comes in. We all make decisions in life and some have been good and others not so good. Nevertheless, I am going to trust myself this year and know that my decisions are good choices for me. That is hard. I called my mother and my husband to talk about when to schedule the surgery. Each had a particular time frame in mind. A time frame that was good for them. My husband wanted me to have the surgery before Christmas because it was convenient with work. My mother wanted me to have the surgery in February after her trip.

Neither of those times appealed to me. I wanted to enjoy Christmas to the fullest with my children and family and we have a trip to Florida scheduled for February. In the end, I did listen to my heart and I chose January 12th to have the procedure done. Now I am not going to have the support of either one of them as much but it is the time that works for me. The children are in school all day so I will have ample time to recuperate and there is really nothing going on.

This brings me to forgiving my husband. The last time I went through surgery and chemo he could have been more supportive. He tried, but he just didn’t really understand what I needed and truth be told, I am not sure that I knew what I needed. Now is the time to forgive and forget. With the upcoming procedure, I am more aware and have explained that I need him home for several days. He has responded by taking days off of work next week and agreeing to help with the children.

So, as the surgery approaches, I will listen to my heart and pray for a speedy recovery. I am sure that I will lose sight of my goals and forget ocasionally "to listen" but maybe, just maybe I will eventually get unstuck.

Tuesday, December 28, 2010

Making Memories

My dear friend Katie always takes loads of pictures of every family outing and vacation and declares with every snapshot, “We are making memories.” This year, I have taken her motto to heart as I have been busily making a Christmas of memories for my children. It is my knee jerk reaction to my friend’s recent cancer diagnosis and my brother in laws death. I think that I went a little overboard though.

It started with the weekend after Thanksgiving. My mom, dad, and my family went to see a staged production of “White Christmas.” We dressed up and went downtown on a Sunday night to see the spectacular musical. Bridget was mesmerized and I spent half the time looking at the joy in her face as the actors sang and danced for hours. Luke, of course, was more worried about the snacks that were available at intermission but he really enjoyed it too.

The next weekend we took the children downtown to see “The Dickens Village” and “The Light Show” at Macy’s. It is in the Old Wannamaker building in Philadelphia which is a gorgeous old department store. We shopped a little bit and then had dinner in a family restaurant.

Then I decided to have a big Christmas party. I hadn’t had a party since the children were very small and this year I decided it was time to open our house to all of our friends and neighbors in Philadelphia. I shopped and cooked for the days preceding the get together in order to be prepared. Then on Sunday afternoon we greeted about ninety of our closest friends for a few hours of merry making. It was a success and parents and children alike enjoyed the festivities.


I recuperated Monday and Tuesday we did our “family shopping night” which has always been a Christmas tradition. I was still a little tired and feeling that I had done pretty well at “making memories” but there was still more to come.


Thursday, I took Bridget to see “the Nutcracker” at the Academy of Music in Philadelphia. The building alone is stunning but then to have the entrancing ballet to delight us for two hours just made the day perfect. When I asked Bridget if she liked it she succinctly described the entire experience by saying, “It is beautiful Mommy.” She hugged me and kissed me repeatedly throughout the performance much to my delight.

Christmas Eve was spent with our friends at their home, a tradition that began when we moved to Philadelphia five years ago. Then Christmas arrived with the plethora of presents and both children declared that it was their best Christmas ever. I felt enormous satisfaction.

After morning coffee and clean up we hopped in the car and went to my husband’s family’s home for Christmas Day. We enjoyed a buffet dinner at my in law’s country club and then prepared to drive to my parent’s home in Virginia for yet another celebration.

Last night we had Christmas again with my mom and dad. We opened poppers and put on our crowns as we each recited our fortune embedded inside. The children sang, danced and read stories for us.

It was a wonderful Christmas and we made many memories this year. As I watched the children enjoy their holiday in so many ways I felt a sense of accomplishment. They will remember this Christmas always. The only problem I have now is repeating the performance next year and quite frankly, I am exhausted!!!