CHRISTMAS EVE 2010

My Christmas Eve 2010 sure is a lot different than Christmas Eve 2009! I don't remember every detail of that day, but I do know that I was a patient in the hospital. I know that I was very ill and felt terrible. I know that I had no real freedom and was not able to drive or live in my own home - I could barely be alone at all. I had visitors during the day and at some point, my sister and I wrapped some presents (I should say "attempted" to wrap presents - it took a lot more energy than I actually had to do the little that I did). I also remember that my life seemed very bleak and it was very difficult to forsee any better future. I was sick and tired and I could not visualize a day when I would't be. I was barely eating or drinking and nothing tasted good. I remember watching Midnight Mass at the Vatican on the tiny television set in my room. I was alone and tired, but could't sleep. I remember that Nurse Rose would come by every so often to check on me or bring me medications. There was an altercation at the mass and someone tried to attack the Pope. I remember being in total disbelief and telling Nurse Rose about it when she came into my room later on - I wasn't sure if she actually believed me at the time. (The Nurses were all aware of the hallucinations that I sometimes had as a side effect of the steroids). I tried to stay awake to listen to the choir, hoping that the sounds of Christmas would somehow make me feel better. I dozed in and out until I finally turned off the television - it was more distracting than soothing. It is strange what memories "stick" and which ones don't. It is strange that these are the things that come to mind when I think of Christmas Eve last year.

So, a year later and I wake up in my own bed in my own home. No, I am only living there part-time, but I am still "living" there. I drove myself to my own house in my own car - yes, I have a valid driver's license again. Oddly enough, I woke up this morning feeling rather "down". I had so many hopes for this Christmas season and it seemed as if none of my hopes had been fulfilled. I felt tired - deep down tired. I got out of bed and drove my car to the food store and took care of a few errands and then went back home and back to bed. I was still deep down tired. When I woke up, I was sort of annoyed that I had "things" to do. I needed to get ready for a party. At that time, I didn't want to do anything - and I really didn't want to go to a party. It was too much "work" to get dressed and ready to go be social. All of a sudden, the party and the holiday felt like an obligation and not something fun. The feeling was making me more tired and more down. After a while, I did get dressed and ready for the party. My parents drove me there (I am still not really comfortable driving at night). That was another thng that had me down - I had achieved my goal to be able to drive again, but my driving is still limited. I want to be able to drive like I did before the brain surgery and chemotherapy treatments! Well, after arriving at the party, my spirits were lifted. People were laughing and talking and eating and drinking and so was I. Somewhere between getting in the car to go to the party and the first fifteen minutes of the party I went from seeing the glass as half empty to seeing the glass as half full. No, my health and life and circumstances are not all that I want them to be, but they sure are a lot better than they were a year ago. I wonder what myself of a year ago would have thought of myself today? A year ago, I was very down (with good reason), but I could not even see the possibility of attending a party, eating good food (and enjoying the taste of it), holding a nice conversation, being in a social setting without worrying about "catching something". This morning when I woke up I had forgotten the rule that I have been trying to live by - the rule of "one day at a time". I was looking too much at the big picture and too little at the segments of the journey. It is odd, I usually would say that I see things more clearly early in the day. That is not so today. Today, it took me until this late in the evening to really see how far I have come on this journey and just how much I have achieved. Yes, I will spend the remainder of this Christmas Eve celebrating the differences between last year and this year. So many good accomplishments - so many good things to look forward to. No, my recovery is not complete - it may never be. But I have moved forward on the path. And hopefully, each day, I will move a little more forward. That is all I can ask for. Yes, I am truly fortunate. And yes, now I realize that today was a really good day - full of love and friendship and achievements and accomplishments. Well, it sounds like the mass is starting and I am hoping to hear the choir sing a bit before going to bed. I will watch Christmas Eve mass from the Vatican on the television in my parent's living room. Comfortably on the sofa as my mother sleeps in the chair. No nurses will check on me or bring me medications. What a difference a year makes! Merry Christmas to all.

THINGS TO BE THANKFUL FOR - A YEAR LATER

On December 11, 2009, I rode in an ambulance and don't even remember it! Even knowing that surgery and another hospital stay is in my future, my December and beginning of the holiday season 2010 is WAY better than last years. As an odd coincidence, I spent part of today at Towson Town Center and I saw the Santa that I waited in line last year to have my picture taken with. I didn't bother this year - it was weird, I recognized him immediately and then the memories of what followed struck me. Yes, some memories are still buried, like the ambulance ride, but others - the needles, hallucinations, therapy, swallowing problems, learning to walk again, etc., yes, those memories are still fresh. But, today, instead of being admitted to the hospital, I woke up early, did some Christmas shopping, I had dinner with my parents, checked up on some friends on Face Book, chatted with my sister on the phone and am getting ready to climb into my very own bed in my own home. Yes, things are a lot better this year! Lots to be thankful for.

The "hip" thing

If you have been following the Blog, you know that my hip/leg has been bothering me. I have seen several doctors and finally had an MRI and have now consulted with two different orthopaedic surgeons. Well - I don't like what either of them has had to say! SCREAM, SCREAM, SCREAM. Okay, I am done venting, now it is time to take some action. Of course, the two doctors don't say the same exact thing - but the bottom line with any treatment is that I need surgery! I know, believe me, the last thing in the world that I wanted to have to do anytime soon was go back to the hospital and have surgery - no way. Well, I don't think that I have a choice. I am going to weigh the options and procedures; decide between surgeons and hospitals; and formulate a time-line and plan. I hope to have some decisions made and a plan in motion early next week. Details to follow. As you can imagine, I have gone between shock and anger, but at least I know that it is not cancer. So, good news. Annoying news, but good news too.

LOST AND FOUND

If you have followed by Blog, you know that I spent last Christmas in the hospital and just prior to Christmas, I was very very sick. Well, I had tried to prepare for Christmas and bought some presents in advance,etc. I put those presents away and told my family where to find them to prepare for Christmas Day while I was in the hospital. Well, late Christmas Eve, my sister discovered that I did not have a present for Hannah (who was 9 at the time). We remembered buying it and I thought that it was in a gift bag, but no one could find it. Bonnie and my parents looked everywhere, but no present for Hannah. Well, it was too late to buy anything and I had some cute pencils and pad of paper and I had my sister wrap them so that I would have something to hand to Hannah when she visited me in the hospital on Christmas. I was totally upset and frustrated over the whole thing - probably much more than I should have been. Hannah took it all in stride and was not overly concerned. I promised to make it up to her after Christmas, and eventually I did. Well, as these things go - I have been trying to get some organization in my house and am cleaning out some closets, etc. Low and behold, I found Hannah's Christmas gifts! I was so excited and was just positive that they were somewhere in my house. Well, they were hidden under a shelf in a coset and could only be seen if you were on the floor and looking into the closet. (That is actually how I found the box - I was crawling on the floor with the closet open trying to find something that I had dropped and thought that it rolled into the closet!) I know, a totally wacky story, but sort of a full circle kind of thing. I had been so frazzled by the lost presents and now I know that they were here the whole time - just not findable. The really cute outfit that I bought for Hannah back then will not fit her now, but it is more the principal of it.

Good News; Interesting News & Not So Good News

GOOD NEWS FIRST: My most recent brain MRI is good. No new lesions or tumors found, no changes since the last one. So, very good news. I saw my current oncologist (Dr. Suman Rao) earlier in the week and everything is looking good.

INTERESTING NEWS: On October 26th (yes, my actual 50th birthday), I had an appointment at Mercy with my prior oncologist (Dr. David Riseberg) - you know, the one who treated me for the first round of lymphoma back in 1999/2000. I missed my yearly checkup last year - I was busy having brain surgery, etc.! Anyway, it was odd walking through those doors and seeing him again, especially after all that I have been through. He had been consulted immediately after the brain tumor was diagnosed as cancer (lymphoma). I did not know this (but probably should have), but a person can only have so much of certain kinds of chemotherapy treatments in a lifetime and I apparently had the maximum amount of "CHOP", already. That didn't really matter because CHOP does not work for brain cancer anyway. There are also some rules about how much radiaton a person can have in a lifetime, but I have not needed to figure that one out yet, since I chose not to have the whole brain radiation at this time. Dr. Rao and my primary care physician had also updated Dr. Riseberg on my status throughout my treatment protocol. So, when I walked in the door, Dr. Riseberg was very happy to see me - walking, talking and alive! He knew what I had been through and was very pleased to see me doing so well. We all know that where cancer is concerned, a person is never "out of the woods", but it sure did feel good to be feeling good that day. I know it sounds a bit odd at this point in my life, but I am an ELEVEN (11) year survivor of the first cancer! No one can take those eleven years away from me - not the good or the bad! I am now a ONE (1) year survivor of the second cancer! (HMM - maybe I need to play some number 1's in the lottery:) In the past, when I would have appointments with Dr. Riseberg, I would bring him some home made cookies or some Berger cookies or some Rhebs candy - something to share with his team - the team that pulled me through the first cancer. This year, in honor of my 50th birthday, I gave Dr. Riseberg a box filled with origami cranes. I made each of the cranes myself and told him that I hoped that they would bring him a little joy. As some of you know, the origami cranes mean a lot to me and I have given them to nurses and other hospital staff and as favors at my celebration. I will publish the origami story again by separate post, just in case you have forgotten or missed the story. A special thank you to all of the health care professionals who have given me these last eleven years.

NOT SO GOOD NEWS: Well, some of you know that I have been complaining about hip/leg pain for the last two months or so. It was initially thought to be bursitis and was treated with steroids, but it didn't seem to help. Actually, the pain has worsened and I am beginning to limp. So, I had a hip MRI the other day and the results are a little worrisome. The good news is that it is NOT cancer. I have an appointment with an orthopedic doctor early next week and will know more after that. It annoys me to even think of having yet another health problem - especially now that I am just beginning to get some normalcy back in my life! Yes, I am very very annoyed. But, as I have learned over and over again during my various health issues - I will take one day at a time. I can't do anything about this problem until I have all the facts and when I do, I will take the appropriate action. Please keep me in your thoughts and prayers. Update to follow next week.

Reflections on Turning 50

Yes, I turned 50 on October 26, 2010. If you had asked me 20 years ago, what turning 50 would be like, I would have had a very different answer than the one that I have today. Back then, I might have said that 50 was old. Not now. Now I think that 50 is just a little bit past young and way way before old. Twenty years ago, I would have thought that at 50, I would know everything and have my life well planned and organized. Not now. No, I sure don't feel wise and my life is chaotic and there is no such thing as organization. But, today, I say, turning 50 is absolutely wonderful! It sure feels good to be alive and it sure feels good to feel well enough to celebrate. I, more so than some others, know that there are no guarantees of being alive from one birthday to another. And, I know that there is no guarantee that I will celebrate 51 or 60 or 100, and there is no guarantee that I won't either! I guess that is what we call "the uncertainties of life". I have been very fortunate in that respect. There have been quite a few "uncertainties of life" in my life. Some more uncertain than others. There have been more than a few times in my life that celebrating another birthday wasn't a "sure thing". Not just the major illnesses (non-hodgkins lymphoma; brain lymphoma; and the platelette eating infection and coma), but there were at least three other "near death experiences" from my childhood: (i) the time that I had a cyst on my ear drum that almost burst - when my mother got me to the hospital, they admitted me for surgery immediately and told her that she didn't even have time to wait for my father to get there before they started surgery; and (ii) the time that I stepped on a broken needle and it was in my foot for months until forming a giant lump and when a doctor finally removed it, he told me that he couldn't believe that it hadn't caused blood poisoning which would have caused me to die; and (iii) the time that I thought that I was drowning while camping and swimming in a lake (or some other such body of water) with the girl scouts. I probably was not really drowning, but it sure did feel like it. (FYI: Barbie pulled me to safety and I lost a shoe, but continued the camping trip and I had a great story to tell and retell for years afterwards!) I am sure that we can all remember a few "near misses" from our past - those times when a car "almost" hit us or that we were "almost" run over by a car or "almost" hit right in the head by a speeding baseball. Yes, I have seen my share of near misses and mighty close to death moments, but thanks to medical professionals (and Barbie) I am here and I am alive and I am just over 50 years old. Yes, I am thankful for every moment of these last five decades - the good moments and the bad ones. it sure does feel wonderful to be 50 - I just wish that I was a little wiser and a bit more organized!

No Whole Brain Radiation

Hi - sorry that I have not updated the Blog lately - let's just say, that life has gotten in the way. And, for the most part, that is a very good thing! Life in itself is a good thing. It is nice to be alive. "Having a life" is a good thing as well. It is nice to be back to some "normal" activities. But, as we all know, even the normal activities can be time consuming and stressful. For those who have not been updated, I have been rather busy - house floods, dear friend's wedding and reception, out-of-town guests, celebration, and lots and lots of doctor's and therapy appointments.

A lot of people have been asking, and I am sorry that it took me so long to let you know my decision, but after the consultation with the Radiation Oncologist, I wanted to consult with my Oncologist. Then, of course, the Oncologist sent me to see a Neurologist. So, eventhough my decision did not change, I wanted to be certain of my decision before broadcasting it to everyone. I have decided NOT to have whole brain radiation. It was a tough decision. So many risks involved on both sides. At this time, with the cancer gone, I am not willing to take the risks of having the radiation.

I will give you more updates later. But for now, know that all things on the cancer front seem to be going well - I will be having another brain MRI in late November.

For now "Go Ravens" and keep sending the positive thoughts and prayers!