Memories and Milestones - 6 and 16

It is October again!  Where has the time gone?  When I was going through treatments or feeling poorly, time went by so slowly.  Now, it seems to be just flying by! So, today, I had my annual checkup with Dr. Riseberg - my first oncologist.  It has been 16 years since I was first diagnosed with Non-Hodgkins Lymphoma.  WOW.  I probably don't really need to go to Mercy to see him each year, but I just feel better knowing that I am following up.  I didn't see Dr. Rao this month, I now only go in February, but the 16th would have been 6 years since being diagnosed with the CNS Lymphoma.  WOW, again.  After my appointment at Mercy today, I walked up to Charles Street and went to a few local places.  Walking around downtown makes me feel alive and a part of the City that I live in.  It felt good to "shop local".  I bought some nuts from The Peanut Shoppe on Lexington Street - I used to go there with Grandma Rose.  I bought a very expensive brownie from the Poupon Cafe - it is a sister company to Patisserie Poupon that is near my office on Pratt Street - there is a cheese cake memory that goes along with the place, so it was all sort of nostalgic for me.  I also went to a new store called Streets Market & Cafe and bought a couple of clementines.  I used to go to that area when I worked at Hopkins Plaza, but back then it was a Super Fresh.  It felt good to walk around downtown.  I also walked through the rose garden outside of Mercy Medical Center and looked at a statue that I had never really noticed before.  All good stuff. Even the shuttle bus ride to and from Mercy was enjoyable.  All in all, a great day and some good memories and milestones!

National Cancer Survivors Day 2015

So, today is National Cancer Survivors Day.  The National Cancer Survivors Day Foundation defines a survivor as "anyone living with a history of cancer from the moment of diagnosis through the remainder of life".  So, yes, I am a cancer survivor!  I guess that I have know about this special day for years, but it never really meant a lot to me until the last five or so years.  I am not sure why - I think that after recovering from the first cancer, I just tried to forget about the cancer stuff and be "normal" again.  And then, lucky for me, it was years before the second cancer reared it's ugly head (no pun intended, since it was brain cancer).

Off and on these last few years, I have been involved in Cancer Survivor Day functions at one of the two hospitals where I was treated (Mercy and Franklin Square).  A few years ago, Franklin Square had a real nice event that I attended and there were various activities and a photo booth and I had a nice photo of myself taken with Rev. Cheri - it was a good time.  Last year, mom joined me at an event at Mercy Hospital.  There was a guest speaker and some health care professionals spoke and all the survivors that attended were given a bag of goodies and treated to some refreshments.  Today, I had planned to attend this years event at Mercy Hospital, but my day got complicated and I never made it to the event.  At first I was really sad and disappointed that I could not attend, but then I thought about the reason that I missed it and I was really happy.  So, here is the story of what I did today:

I decided to stop by the St. Anthony's Festival in Little Italy as soon as it opened today at 11:00 am.  I like the festival and did not make it there yesterday, so today was the last chance.  It was a beautiful day, the weather was cool for this time and year and the sun was shining.  My plan was to stay at the festival for about an hour, walk around, play a few wheels, donate some money to a good cause, maybe have something to eat - at least some fried dough - and then head home.  There was plenty of time to get to the event at Mercy Hospital at 2:30 pm.  When I got to the festival, the minute I walked down Exeter Street and saw the first wheel, I ran into an old family friend and she ran over to hug me and tell me how happy she was to see me.   And then came the big question, "Is there any way that you can stay and help - we have an extra wheel and no volunteer is here to run it yet"?  Sure I said, all the time thinking that I would hang out for an hour and be on my way.  Well, I was manning the "Italian Food Basket" wheel and before I knew it, a few hours had flown by.  I couldn't believe it, between spinning the wheel and engaging with the crowd and handing out prizes and collecting the money, I had not realized how quickly the day was going.  I had not even stopped to eat or drink.  Well, I did finally take a break and had some great food and a much needed lemonade (and yes, I ate the fried dough that I had wanted all along), but they still were short handed, so I had a big decision to make.  Do I stay and man the wheel or do I leave to make the Cancer Survivors Day event at Mercy?  It was a tough decision, but in the end, I realized that the decision was easy - I needed to stay, because what I was doing was exactly what Cancer Survivors Day is all about  - I was LIVING.  I was doing a normal activity and I was enjoying life.   Isn't this what I survived for???  In those few moments of reflection, I realized that I had been standing in a small booth, handling money, talking to strangers, using my arms to spin a wheel, handing out food baskets, and all without even thinking of any ailment or disability.   I inwardly shouted "I AM A CANCER SURVIVOR AND I AM ALIVE"!  I know, it would have been far more dramatic if I had shouted it out to the world, but I kept it to myself.  At that point, I knew that I was making the right decision.  Yes, I would have enjoyed the speaker and I would have enjoyed being with others who had been on a journey much like the one that I had, but mostly I know that I enjoyed leading a normal life thanks to being a cancer survivor.

After I got home and recalled the events of the day and the missed event at Mercy, I thought of some of the things that I wished for when I was in treatment or too weak to walk or function or when my blood counts were so low that I could not be around people or outside or do anything.  I remember seeing Ron Matz do an interview on the news about the St. Anthony Festival in Little Italy while I was sitting in a hospital bed receiving chemotherapy and I remember thinking, that I wished that I could be outside and at the festival and oh how I wished that I could eat some spaghetti sauce (not eating tomato sauce is really tough on someone Italian when going through cancer treatments!).  I remember reading in the paper that volunteers were making ravioli for a fundraiser and I wished that I could be one of those volunteers.  I remember hearing that my friends were out and about at nice restaurants or cookouts and wishing that I could be out and about as well.  And here I was, today, out and about, eating tomato sauce, engaging with people on the streets of Little Italy and I never once thought about having cancer and being sick.  I only thought about attending an event.  WOW - Life really is good, and it is good to remember that - especially when you are a cancer survivor.

My final thoughts of the day go out to a couple of friends that I know who are currently battling cancer, one being my age and one not too much older.  You both fit the definition of survivor at this point, but I am sure that it does not mean much to you as you go through treatments and deal with all the side effects and look in the mirror and see a person that is not quite you looking back.  I don't have any magic pill to offer or a crystal ball to tell your future, but I do want to offer you my encouragement during your struggles.  My wish for both of you is that one day, Cancer Survivors Day will find you with too many choices of how you spend your day!

This one is out of order! GOOD NEWS - I CAN DRINK PLAIN WATER AGAIN!

As some of you know, one of the lingering side effects to the Major Setback was that my throat was swollen/iritated (or something) and I had swallowing problems. (A lot of people who have strokes and or in ursing homes have this problem).

FIVE YEARS!

It has been five years since the brain cancer diagnosis!  Just saying it out loud is rather amazing - there were moments that I never dreamed that I would be here in five years.  It is easy now to take it all for granted, the bad memories have begun to fade.  The treatments and surgeries and recoveries are mostly distant memories now.  Even my check-ups are only once every six months.  I have come a long way!  I guess that the biggest reminder is that I do not live that life that I used to live.  The hardest thing for me still is that I never was able to go back to work.  I am a bit disappointed in myself on that account, sometimes I feel as if I did not try hard enough.  I am also disappointed in the way that I now spend my days.  I don't feel that I have accomplished much in the last five years, aside from getting well that is, and I did work very hard to get well.  My days are very busy, but not as meaningful and purposeful as they used to be when I worked.  I have done some volunteer work off and on.  I enjoy volunteering, but I have not found something that engages me yet.  Again, maybe I have not tried hard enough to find more fulfilling volunteer work. When I can, I try to be helpful to my family and friends.  I help out with school pick-up for my sister's youngest daughter once a week and sometimes I help her out with other things that she does not have time for.  For a while during the summer, I was making "big salad" lunches for her kids on the day that I did summer school pick-up.  That was kind of fun.  I have also become the queen of chicken salad - I seem to always be making it for someone!  I also help my parents with rides to appointments and paperwork and cooking dinners, etc.  One of the "blessings" of my illness and the time on my hands has been that I have been able to "be there" for my parents when they need me.  They are not getting any younger and both of them have had a lot more health issues these last years.  I am fortunate to have the time to devote to them when they need it.  I have also been able to drive a friend or two to a doctor appointment when needed.  I am not fond of highway driving, but I can do it, so it makes me feel good when I can help out my friends and family with needed transportation.

Aside from working, the other thing from my before brain cancer life that I truly miss is the enjoyment of reading.  I always loved to read and could lose myself in a book for days.  I would sometimes have "lost" weekends because I was so involved in a book that I would read the whole thing between Friday night after work until Sunday night when I had to go to bed again so that I could get up for work the next morning.  I have been trying to read more.  I mostly read the newspaper and magazines, but I have been trying to read more books.  I find that the shorter, less involved ones are best.  I have read a few books for teens and they seem to go well.  I can't get through mysteries or any of the fantasy literature stuff that I used to love so much - I lose track of the characters and the twists and turns of the plots too easily.  I recently read a humorous biography which kept me interested.  My former physical therapist gave me a used NOOK and it has encouraged me to read more.  I have always loved reading cook books and recipes and that I still do all the time.  It is one of my favorite past times.    

I find great enjoyment in cooking and baking - both have always been passions of mine.  I recently baked the "survivor" cookies that I baked last year for my friend who survived breast cancer.  I also decorated some Halloween cupcakes, just because I wanted to.  A few weeks ago I was on a quick bread binge - pumpkin bread and pumpkin muffins and banana bread all in the same week.  I seem to make the spaghetti sauce for the family much more than I ever used to (mom's is still better) and when I can think of something new or interesting to cook for, I'll try it out on mom and dad.

I started this blog post this evening because I couldn't sleep and that reminded me of all the times when I was sick that I was up in the wee hours.  I am fortunate that most of the time now, I do sleep very well.  Not certain what is keeping me up tonight, but maybe I just needed to put some of my thoughts on paper.  I will end this post with my hope for future posts.  I hope that I have more accomplishments and less disappointments to post about.  I hope to continue reading, more and more.  I hope to find more fulfilling ways to spend my time and I hope to be able to post many more milestones.

I end this post the way I began it, FIVE YEARS!      

FOUR YEARS!!!

For the last few days, I kept thinking that I was forgetting something important, but just wasn't certain what it was.  October is always a busy month and this one seems to be flying by already.  Although still recovering from left shoulder replacement surgery, I am feeling fairly well and have been keeping very busy.  Earlier today, I had dinner with my parents, my sister and two of her children.  After getting home, I baked some ribbon shaped cookies and decorated them in pink to give to a friend that is a breast cancer survivor.  As I was heading to bed, something was nagging me, but I wasn't sure what.  I looked at my calendar to see if I had missed something and all of a sudden, it dawned on me - this is the week - four years ago - that I went to the ER and found out that I had CNS Lymphoma.  FOUR YEARS AGO!  Part of me feels as if it happened yesterday and part of me feels as if it is some distant memory, as if in a bad dream.  I think that I would have realized what week it was over the weekend, if Bonnie and I had gone to the Catoctin Colorfest.  We didn't go because the weather was so rainy and we were sure that it would be very muddy.  Bonnie and I were at the Catoctin Colorfest in October, 2009 - we had a good day, but Bonnie kept mentioning that I was running into people.  When we got home, I fell getting out of the car, but we laughed it off - just Debbie being clumsy.  Little did we know.  When I look back at those next few days, I can see the signs - the extreme headaches that didn't go away  being totally agitated and short tempered.  I was extremely busy at work and had a huge deadline looming, so I just didn't see the warning signs.  I blamed it on too little sleep.  There were real signs my last day in the office.  I was livid with the commute when I walked into the office.  The car next to me was edging towards me and I almost hit a curb trying to avoid it.  I remember complaining about it when I got into the office.  The headache just wouldn't go away, but I had work to do and kept doing it.  Late in the afternoon, schooners were sighted in the Harbor.  I went to Kevin's office to look out the window at them.  Right then I decided that I needed a closer look and went outside and walked over to the Harbor.  While watching the schooners, I sent a text message to my friend who worked near there to see if he had seen the schooners  I also took some photos on my cell phone and sent them to my nephew.  I then walked back to my office, crossing major roads, navigating security doors and elevators and went back to my office to work some more.  I have recounted the "rest of the story" so many times that I don't want to repeat it here.  After various events, I wound up in the ER at Franklin Square Hospital.  I thought that I had a vision problem, but instead, I had a brain tumor.  In retrospect, that day was probably one of the worst days of my life.  A lot has happened in the the last four years.  I have lived through some horrible experiences, but I have also lived through some fabulous experiences.  The part of all of this that I will hold close to me as I climb into bed tonight is that through it all, I lived.  I am a fortunate woman.

Another Surgery Tomorow

Well, the other shoulder has gotten worse and now I need to have it taken care of.  Tomorrow morning I will have surgery at St. Josephs Medical Center/University of Maryland (or whatever it is called now) to do a total shoulder replacement on my left shoulder.  It has been just about 1-1/2 years since I had the right one done and have known all along that I would need this surgery.  If it is like the last one, the worst part is all the physical therapy.  Also, I am not looking forward to not being able to drive again!!! My only hope is that this one will go quicker since it is my left shoulder.

So, what have I been doing leading up to the surgery.  Well, with all the record high temperatures, I have been sweltering.  Aside from that,  I have been mostly cleaning my house, catching up on my gardening and doing paperwork - I needed to get done everything that needs two hand to accomplish!  I won't be able to make origami or crochet for quite a while.  I did get to have lunch/dinner with a few friends in the last few weeks and of course, and it is always fun to catch up with friends over a meal.   I also made some chicken salad for my family.  Sometimes I think that "chicken salad maker" is all that my family thinks that I do anymore!  :)  I will miss cooking and baking during my recovery - it is difficult to cook or bake with one arm.  Although, in all this heat, I have not been cooking or baking much.  Hopefully, I will be able to type with one hand, so I will give everyone an update in a few days!



 

Sometimes Dreams Do Come True - Cataract Surgery at 52

I was a bit shocked last month when the opthamologist told me that the cataracts that he had been monitoring had gotten bad and that I needed cataract surgeries on both eyes.  I wanted to sream, I could not believe that I needed another surgery and really couldn't believe that at 52, I had cataracts.  I have never wanted any sort of eye surgery.  I would not even have my vision corrected all these years of ever worsening vision - bifocals and transition lenses.  I was not happy, but not wanting to drag it out all summer (and some concerns about health insurance), I scheduled the surgeries for May 1st and May 15th and they are both now over.  I have been through some really rough surgeries, but for some reason, the eye surgery was freaking me out.  I never had my vision corrected, even though I had super terrible vision since I was in 3rd grade, because I never wanted anyone to touch my eyes.  The brain cancer was super upsetting because it affected my vision - I think that the vision issue was harder to deal with than the brain cancer itself.  Unless you are missing peripheral vision (or wearing an eye patch or some other obstruction to vision), you have no idea how much less your vision is.  It has been almost 4 years since losing my left peripheral vision and I still walk into things (Read on to hear about most recent crash later in this blog:).  Well, although scary, both cataract surgeries went fine.  The first one seemed really easy and the second one was more difficult and a bit more painful.  Although in the grand scheme of things, cataract surgery was not painful at all.  The needle for the IV was probably the most painful parts.  The constant eye drops are stinging and uncomfortable, but not really painful.  After each surgery, my face did look a bit bruised and there were some dark circles under my eyes.  Because of my terrible near sightedness, the two weeks between the first and second surgery were rather difficult.  With one eye seeing well and the other eye barely seeing at all, it was a real mess.  Driving and reading were somewhat impossible.  Distance views were okay - I could watch tv, etc.  Computer work, reading and anything with detail was almost impossible.  I lived the two weeks with weird arrangements of one eye closed while wearing glasses to be able to read with the other eye then removing the glasses to cover the other eye to see distances with the newly operated on eye, etc.  It was a wacky way to see!  But, the end result is that I can not see very well with both eyes, well EXCEPT for the reading part.  After spending every day since third grade wearing super thick glasses (and mostly hating every minute of it), I now only need glasses to read or view things close up.  It is an awesome feeling to wake up in the morning and be able to see the clock without reaching for my glasses!  It is also really great to be in the shower and reach for the shampoo or soap or anything and know exactly what it is and where it was sitting instead of guessing and feeling around to find something.  More than once, I have washed my hair with liquid soap because the bottle was the same shape and size as the shampoo bottle.  I had not realized how, over the years, I have gone through my morning rituals partially with memorization - I knew where things were, so I knew where to reach for them.  Without my glasses, I could only see large shapes without details, so staying in hotel rooms or other people's houses was always a bit disconcerting.  It is hard to explain to someone who has always had good vision.  Waking up that first morning after the second eye surgery was very strange.  Without moving, I could see everything in the room - without reaching for my glasses, I knew what time it was.  I can finally get rid of that super giant clock in my bedroom.  It was a great feeling.  When I was little and would dream, I would always dream of myself without glasses.  I guess in a weird way, one of my dreams has come true.  I know that the on and off of the reading glasses is going to take some getting used to, and we all know that I am not big on change, but I believe that this is going to be a very positive change in my life.  I guess that I can't say "no" glasses, but I can say "no, all the time" glasses!  Dreams sometimes do come true!