Out of the Hospital and Recovering at my parent's house

Yeah - I was discharged from Franklin Square Hospital Center yesterday afternoon. I was a little apprehensive about leaving, but mostly very happy to get out of there. The time in the hospital was good - I think that the pain medicine cocktail really helped. I had some good visitors and great conversations - everything from "what is going on over the holiday weekend" to "what is important to you and your life". After getting home, I felt a little bit of pain and did have a rough night - bo sleep was happening on Franklin Square Drive last night. I woke up feeling well and stronger. The therapist visited early in the morning, so I completed the tough exercises and well before lunch. Mom made a nice lunch and then we relaxed. It is good to be home. Good to be recovering.

On another subject, I recently read the obituary of Nick Charles, a sports anchor for CNN. I remembered him from his days in the 70's on WJZ TV. He had lots of curly dark hair. Apparently Nick was battling cancer and was told that he didn't have long to live. When asked about his plans, he said that he had a "series of short-term goals that really sustain me". I liked that. I think that many of us, when asked what we would want if we were going to die, would think in terms of a "bucket list" and if asked what we wanted in our last days of life would think of grandiose trips and adventures. Anyone who has been ill for a while, and hasn't felt well and is maybe financially depleted, knows that sky diving and trips to India to visit the Taj Mahal or climbing Mt. Everest are really far fetched and most likely unobtainable dreams. I am not against "big dreams", but I am a more practical sort of person. The idea of "short-term goals" really impressed me. We are all able to wish for something and to accomplish something in the near future. It is a more practical and meaningful desire. Things like being able to celebrate the next birthday or be part of a special moment in a loved one's life. We can all think of something in the short term time frame that we would like to be a part of or experience - a sunset or sunrise; the sound of the waves crashing against the beach; the laughter of a good friend; s'mores eaten by the fire pit; a really exciting game of Pictionary; or a conversation about something meaningful. I think that since my most recent illness in 2009, I have lived a little more "one day at a time". I needed to live that way during the tough treatment schedule, just to get through the day and not to have my hopes dashed over and over again when I wasn't released from the hospital when I wanted to be or not to be well when I wanted to be or not to be able to attend some festivity when I really wanted to attend it. It is funny now that I can put all of that in perspective. I don't know when I will die - it could be tomorrow or in 40 years. What I do know is that life is a series of days and moments and that we can not rush through them to get to the next one. We have to live and relish each and every one of them - the good, bad and in-between. All those moments and days and years are full of the experiences that make up our lives. They are all part of our short term goals accomplished. And I hope and believe that those short term goals will sustain me.

Enjoying the last few minutes of life before surgery!

Heading to surgery for the left hip. Looks like a beautiful day. I took my anti-bacterial shower and I am packed and ready to go. Just wish that I could have a cup of coffee!!! Be in touch soon.

Off to Hip Surgery in the Morning - Left Hip this time!

Hello Followers:
I am very sorry that I have not posted in a while - I have been in denial about surgery again and also trying to cram as much stuff in prior to surgery and doing it all while not feeling quite so good. I really shouldn't complain - I am in a lot better shape than a lot of other people I know - and some of them don't even have major illnesses! :)
If you have been around me at all lately, you know that I am not happy to be having hip replacement surgery again. I have done by best not to think about it - I was not happy about it the first time and am even less happy this time around. Okay - I will stop all of my whining and leave you with some thoughts, comments, and general musings.

First, I would like to mention that lots of friends have called and sent cards and notes and met me for dinner and lunch and just had great conversations. A big thank you to all of you - it is great to have such a wonderful support network. I don't know how I would continue without all of the the love, friendship and support that has been bestowed upon me.

Second, I have been organizing things at my house - I have so many half-done projects going on. I can't seem to finish anything! Prior to getting sick in October of 2009, I was working on archiving some old black and white and childhood photographs and organizing them in chronological order. Well, needless to say, all that stuff is now in a dozen boxes in various stages of incompletness all over my basement. My immediate task was to just get all the photos and photo stuff all in one place. And, I did - sort of. It is not 100%, but it is fairly close. I now have four or five, nice see-through plastic bins, filled and labeled. So, I feel good that I actually accomplished something that I have been working on for a long time. In the process, I found some photographs that made me really think - some made me laugh and some made me cry and some just befuddled me - I had no clue who some of the people in the photographs are or what on earth was going on in some of them! I will have plenty of stories about some of my findings after I return from surgery and have a bit more time to gather my thoughts.

Also, a good friend took me to dinner at P.F. Changs the other night - yummy dinner and great conversation. Nice to be out and about, especially knowing that I won't be out and about much for a while after tomorrow. Anyway, I brought along a couple of photos from my scavenger hunt and we laughed and reminisced and had a good time. Wow - I had some big hair in the 90's! After dinner, the waitress brought the check and fortune cookies and my fortune cookie contained the following fortune, "Look forward to great fortune and a new lease on life!". So - is that appropriate or what????

There have been a couple of other luncheons and dinners and great conversations these past few weeks, but I will have to save some of the stories for another time. I will leave with this though, as I was packing my suitcase to go to the hospital, I was feeling a bit down. I just don't want to have another surgery and be in therapy again. And, in the background, I could hear, Gloria Gaynor's "I Will Survive" playing on the radio and it really gave me a boost and cheered me up. Oddly enough, the next song was "Moon Shadow" by Cat Stevens. Needless to say, I have now turned the radio off - I have felt like a moon shadow has been following me for a long time now and don't need any reminders!

Don't worry - "I Will Survive" is the song that is still playing in my head. I'll be in touch real soon!

PRAYER SHAWL BLESSING CEREMONY

I believe that I mentioned in this Blog before the prayer shawl that was given to me from the Pastoral Care Team at Franklin Square Hospital Center during one of my many stays at the hospital for in-patient chemotherapy, etc. The prayer shawl was given to me at a very difficult time in my recovery and it was very meaningful to me, but I didn't know a lot about the prayer shawl ministry and volunteers until today. Rev. Cherie Smith called last week to invite me to speak as a "prayer shawl receiver" at the 6th Annual Prayer Shawl Ministry Blessing and Celebration that was held today at the hospital. She explained to me that there were approximately 100 women (and one or two men) who knitted and/or crocheted prayer shawls and donated them to the pastoral care staff to distribute to those in need of healing at the hospital. The event was a small thank you to the volunteers and she expected about 50 people to attend. Most of the attendees were the actual makers of the prayer shawls, but there were some others from the pastoral care team there, as well as a couple of Pastors and Ministers from the community. Apparently, some of the shawl makers are nurses and others that are associated with the hospital, but many of them are from community churches and senior centers or just talented people who have been touched by tragedy and use their talent to give back to the community. Over 3,000 shawls have been distributed to the Franklin Square Hospital Community since the beginning of the prayer shawl ministry. The shawls are made and delivered to the pastoral care team and usually distributed by pastoral care, so most of the volunteers never know where their shawls go or to whom. Rev. Cherie wanted me to speak about the shawl that was given to me so that the volunteers would have a deeper uderstanding of it's physical and spiritual importance to a recipient. I was honored to share my story, but I was more honored to hear from the various volunteers and how meaningful their work is to them. The stories were truly inspirational and so were the volunteers. Most of them pray for the receiver of the shawl as they make it - yes, they pray for a person that they do not know and that may not even be ill yet! One of the volunteers told me that she had crocheted 100 shawls herself. She liked to use bold colors to keep her interest and make the needlework go faster. Another volunteer said that she listened to a tape of the rosary being prayed in her parish as she knitted - that way, extra prayers went into each stitch. Some women made them in their spare time and others made them as part of prayer groups or knitting clubs. One of the women offered to teach me how to make one, but I would have to join the class as the Senior Center and pay the admittance fee - I'm not sure if I am eligible to join the Senior Center or not, but I may just check it out! :) It was a delightful day - there was so much positive energy in the room. What an incredible group of people and very special ministry.

Special Moment Between Strangers

I had a doctor's appointment at Mercy Hospital today - inconveniently, right in the middle of the day. I made some lunch plans since I would be downtown, but the morning was rainy and dreary, so I cancelled the lunch plans and had to force myself to drive to the appointment. I did not want to go and I did not want to be at Mercy. Just walking through the doors can sometimes bring back a flood of bad memories - the first cancer, the first chemotherapy, the weight loss, the needles, the being sick, etc. etc. I know, lots of positive things happened and I did recover, but it is hard to forget all the bad stuff.

So, I navigate downtown traffic in the rain and then navigate the parking garage, which is a nightmare on a good day. The walk from the parking garage through the hospital and to the doctor's office was longer than I remembered and I was feeling kind of exhausted by the time I arrived. Well, I walked in the door and the waiting room was absolutely packed - not a good sign. While signing in, I noticed that there were a lot of other patient's files and paperwork on the receptionist's desk, so things did not appear to be moving quickly. While registering, I realized that I had not seen this doctor since before the second cancer and then it all came flooding back. I had an appointment with her the week that I had the brain surgery and had called her office from my hospital bed to cancel the appointment. They called me and sent me a letter, but since this was just an annual check-up kind of appointment, I did not go out of my way to follow up and now it had been over two years since m last visit. I had to fill out all the "new" cancer information on the forms and wrote "cns lymphoma" under the current health section on the forms and had to briefly describe all the new treatments, surgeries and medications - there was not enough room on the form and I had to use the back of one of the pages. As I paid the co-pay I could see the receptionist flipping through the form with a big frown on her face as she attached it to my file. As I waited my turn, I began to get sort of angry. I didn't want to be there and I didn't want to wait. I didn't like the frown on the receptionist's face and I didn't like her attitude when I asked if the doctor was running "on-time". About 10 minutes after my appointment time, I was called back to the examining room. At this point I was a little bit annoyed and couldn't wait to get the exam over with and get out of there. Well, the assistant who took me to the examining room was very pleasant and had a big bright smile. She flipped through my paperwork and suddenly her smile faded. She said, "wow - you sure have been through a lot since the last time you were here". She said it with such concern, that I immediately made light of it and joked - "yeah - you wouldn't think that having a check-up would make me nervous - not after all the other stuff I've been through". Then she asked if I still had the CNS Lymphoma or if it was gone. I thought that it was an odd question, but I didn't mind answering. I said that yes, as far as I was concerned it was gone. I continued to tell her that I was having some bone issues an had just had replacement hip surgery, but that was a side effect and not the cancer itself. She proceeded to tell me that her 24 year old brother had CNS Lymphoma and that I was the only other person that she had ever met with it. She asked if I minded and then proceeded to ask me the usual questions - how did you discover it; what were your symptoms; how were you treated, etc. I gave the short version of the headache and peripheral vision loss and then the brain surgery and high dose methotrexate chemotherapy treatments. She interrupted briefly to say that her brother had some in-patient chemotherapy as well and that he even had the kind that they "poured right into a catheter in his head". She asked if I had that and I said no, I was lucky to not need that kind, but that I had heard that it was one of the available treatments. I tried to wind down the conversation with saying that I had spent almost a year in treatment and that I recently had the hip surgery that was a result of the steroids. She said that I looked wonderful and she could not believe how well that I looked and appeared to be doing. I was about to complain about the other hip needing surgery when her eyes started to tear up. It took a minute, but it dawned on me then that her brother had lost his battle with CNS Lymphoma. So I gently asked about him and she told me that he had fought hard, but that he didn't make it and that I was the first person that she had ever met that had it and lived. She was now crying and I was welling up and she took a yellow "Live Strong" bracelet off of her wrist and handed it to me. She said, "please take this, it would mean a lot to me". I didn't want to take it, but couldn't refuse her. As I was putting on the bracelet, she told me that she would say some extra prayers for me - the joyful kind of prayers because she knew that I would be well. I thanked her and just then, remembered that for some reason, I am not sure why, before I left the house for the appointment, I made an origami crane and that it was in my purse. So, I grabbed my purse and said, please take this crane, I made it myself and it would make me happy for you to have it. Just then, the doctor walked in the room and said, "why haven't you changed into a gown yet?" She stood there for a second and then seemed to realize that something was going on of a personal nature, so she left the room and said that she would be back in a few minutes and I'll give "the two of you" time to be ready. Well, it was weird, until the doctor had walked into that room, I had totally forgotten why I was there or what kind of day I was having. I had totally forgotten "me" at all. Anyway, my new friend, I don't even know her name, walked out of the room and thanked me for the crane and reminded me that she would be praying for me.

I finally put the gown on and had the examination and almost ran from the doctor's office afterwards - I needed to get out of there. As I was walking towards the parking garage and digging for my keys, I noticed the bracelet on my wrist. I stopped dead in my tracks. I knew then that there was a purpose in me being at Mercy today and I changed directions and walked to the Chapel. The Chapel is in the old part of the hopsital and I was in the new part, so I knew that it would be a long walk, but I just knew that I needed to go there. The Chapel at Mercy has been a place of refuge for me in the past. It has also been a place of great comfort. I stopped there and spent a few minutes reflecting on the personal encounter that I had just been a part of. I also thought of the incredible journey my life has been and continues to be. I thought how each of us has a story to tell and each of us has our own journey and how strange it is when two strangers can share a common bond for a few moments and that bond can be so meaningful. Even if just for a few moments.

Before leaving the Chapel, I said a prayer for the doctor's assistant and her brother who was not as fortunate as I. I said a prayer for another friend who is struggling with cancer and was recently being treated at Mercy. And then, I thanked God for allowing me to realize my good fortune and allowing me to continue on my journey.

When I finally arrived at my car in the garage, I looked at my watch. I was shocked to see that so little time had passed, but at the same time, I realized that so much had taken place in that short amount of time.

Sometimes, even the dreary days can be glorious.

A Special Thank You

I am not certain how many people still follow my Blog, but for those that do, thank you. I had hoped to shut it down long ago - as soon as I recovered from the brain surgery; and then again, as soon as I recovered from the bacterial infection and coma; and then again as soon as I recovered from all the chemotherapy treatments; and then again, as soon as I recovered from the side effects of the chemotherapy treatments; and as soon as I got my driver's license back; and again, as soon as I was recovered from the hip surgery ...
The "as soon as" can go on and on. As with my recovery - it just keeps going on and on. I sort of consider myself "a work in progress" on this road to recovery. I guess that each of us is "a work in progress" for many things. I guess that sometimes I forget that everyone's life is full of little blips, and big blips, and roads to recovery for various things, as well as illnesses. We are all "works in progress". I guess that I just sometimes forget that. My focus has been so "focused on me" that I have sometimes lost site of the bigger picture. I am just one tiny part of a giant world. It makes me think of the book "A Wrinkle In Time". I will have to go back and re-read it. But the basic story line is about how something so small can affect so much - how one abnormality can cause total catastrophe for many. My illness is much like that. It does not only affect me, but it affects my family and friends and co-workers and doctors and therapists and friends of friends and on and on. As does everyone's life.
The reason that I am thinking about these things is that a realization hit me today. I thought to myself that people must be really tired of me being sick and asking about me and my various illnesses. I feel as if I have been the focus of so many thoughts and prayers for so long, that people must be getting sick and tired of even hearing my name. The odd thing is that just as I was thinking about myself, I thought of a friend of mine that has been struggling with cancer and it's many trials and tribulations for much longer than I have. That person's family and friends and co-workers must have the same "sickness fatigue" that my family and friends and co-workers must have. It is totally understandable.
After thinking about it for a while, I also came to the realization of just how fortunate I am. So many people - so many friends and family and co-workers and friends of friends and medical professionals have made me a part of their thoughts and prayers on a regular basis for a very long time. And they continue to do so! It is really amazing if you think about the connections that each of us has to each other (Sort of like the "six degrees of Kevin Bacon" thing. It is truly amazing that with all the things that people have to do each day and all the different people that they are connected to in so many ways, that so many people still take the time and effort to check on me and ask about me and think about me and pray for me. WOW! Just thinking about it makes me shiver a little.
So, a very special thank you for all the people in the universe who are somehow connected to me and my continuing road to recovery. A special thank you to all of those that somehow fit into the "six degrees of Debbie Sullivan". A special thank you for all your thoughts and prayers and communications - no matter how big or small. It is truly an honor to know that I am connected to so many people, even in a very small way. The universe seems just a little bit smaller to me tonight. Thank you.