Well, after a bit of a hiatus, I am happy to circle back and give you a more inclusive update on what we have been up to over the last few months. First of all, I am very pleased to tell you that my follow up appointment with my doctor at the Bone Marrow Group regarding the results of my last scan went very well and the consensus is that everything looks great. The concern was that there was some “activity” seen on my PET scan where one of the liver lesions use to be and, as you can imagine, anything more than zero activity now is concerning. The short story is that some activity can be expected because of the body’s normal metabolic functions and, in my case, also because of the scar tissue that remains in that area and it’s associated healing. I will spare you all the gritty details and just say that although there are still areas of scar tissue where the original lesions were in the liver, they continue to decrease in size and are “tiny” according to my doctor. As my doctor pointed out, these things don’t get smaller and more active. By size alone, we are on the right track. So all of this translates into…Yippie!! It will be a fine day indeed when there is no activity and no scar tissue, but for now we will take that wonderful news and run with it.
I am also quite happy to tell you that my confinement period is over and I have officially launched back out into the “real world”, well sort of. This Swine Flu thing has cramped my style a bit but I have still been able to start doing some “normal” things again like grocery shopping, lunch with friends, etc. And I have had fun trying some new things like Pilates and Bikram Yoga. The whole “house arrest” phase actually went by rather quickly as I was busy reorganizing the house, taking my re-certification exam for the National Physician Assistant Boards and enjoying lots of down time with Neil. I was grateful that it was during the winter months as weather-wise it is a good time to be inside anyway. And as my last three-month confinement came to an end Spring arrived and it seemed that as the weather warmed and brightened, so did I. Is it me or is it really hard not to notice the parallels between the timing of the seasons and my experience over the last year? In October, “Harvest Season”, I had my bone marrow harvest. Over my birthday week in November, I had my first bone marrow transplant (which the doctors declare as your “new birth day”, a medical restart/rebirth of sorts). My second was over Christmas, and we all know who’s birthday that is, not to mention that it’s right before the start of a brand new year full of new beginnings. And the end of my “confinement”, or when I “got sprung”, was Spring. Then, comically, as the flowers and trees began to sprout, so did my hair! God certainly does have a good sense of humor.
I woke up one morning in February to find the cutest little row of eyelashes sprouting up from the edge of each eyelid and a soft downy fuzz on my head. Just about all of my eyelashes and eyebrows had fallen out after the last high dose chemo along with all the rest of my hair and I can assure you that it is not a very flattering look. I was actually impressed with how long I held on to my eyebrows and eyelashes as they had prepared me for losing them with the start of the initial regular chemo last year due to the high levels and types of drugs. For whatever reason, the little guys hung strong for all of that but when it came time for the high dose, they didn’t stand a chance. The “high dose” means they use the upper limits of what is “safe” and I assure you they do not mess around! Anyway, by the end of my second treatment I looked like Powder if you ever saw that movie. Although very low maintenance…NOT CUTE!
So, needless to say, I was very pleased to welcome the little guys back and I was actually quite impressed with how quickly everything remerged. It seemed that daily you could chart the progress and it was as if I had turned into a Chia Pet. I was relieved to see my normal color and texture come back as many people say their hair grows in curly and a different color. I had said back at the beginning of all this that I would be royally pissed off if I ended up with a blond afro when it grew back. Thankfully that is not the case and it has grown in as my natural brown straight hair and it is SO soft! It’s not uncommon for me to get “petted” by my mom and Neil. Another perk is that I now get a clean slate with “virgin hair” and will be trying out a bunch of fun new hairstyles as it grows out.
Apparently it looks better than I thought because I keep getting compliments on my “haircut” when I am out. Too funny. The first couple of times I thought they were kidding and almost asked them if they were on drugs as there has been no “styling” done to it yet, but then I realized that they just assumed it was purposeful. Well I wasn’t about to tell them any differently so I just said thank you and kept on truckin’. I think because it is so severe it catches peoples off guard and they just assume that I’m really gutsy for chopping it all off…Ha, little do they know! It’s actually quite surprising how many women come up to me and say “I wish I could wear my hair that short.” Well, to all of them I would say, you too can have a short easy “do”, I just wouldn’t recommend getting it this way.
So besides charting my hair growth we have been able to start enjoying some of the fun things we had to put on hold for the last year. Actually it was one year ago Wednesday that I had my hysterectomy…hard to believe. Needless to say, the fact that all of that is behind us now is more than enough to celebrate. Neil had some fun trips a couple of months ago and went to Pebble Beach to play golf and went skiing in Vail with some friends. As I mentioned in my last posting, I went with some girlfriends for a spa weekend and turned right around and met Neil down at the beach for our first trip of the year. We will head back down for Memorial Day with a big group and look forward to many laughs and reconnecting with some of our dearest friends after about an 8 month respite. I am also excited to report that there is a fun new car in my very near future as Neil ordered me a convertible to match my new “haircut”. For any of you that are into cars check out the newly restyled Z4 from BMW…she’s pretty!
Many of you have asked if I will be returning to work soon and what is next in store for me. I’ve chosen to take a year to figure all that out. This transition period has been, well, interesting. For me it has been both a relief to have all of the treatment behind me and ambiguous in that now I must redefine my whole life. It truly is a wonderful opportunity to be able to re-choose your life from the ground up but honestly it is overwhelming at times. For me the challenge isn’t in the choosing but in choosing knowing what I know. By having to confront and contemplate my own mortality during this it popped the bubble that we all tend to live in. We all know in theory that we won’t live forever, we hear stories in the news everyday and at some point it hits closer to home, but take it from someone who has been in both places — losing my younger sister 12 years ago and having walked this path, it is quite different when it’s you. As hard as it was to lose her, coming face to face with my own mortality was something else entirely.
Now all of that sounds pretty dark and sad but really it’s not because you find out what your made of, what’s really, really important to you, who’s really important to you and certainly what you believe. Things come into very sharp focus in that light so I count it as a blessing but I also know that it is going to take some time to let it settle in. I remember when Lauren, my younger sister, died I suddenly felt like I was 60 years old. I was in my early 20s at the time and in the middle of college and everything around me just didn’t fit anymore. It wasn’t different; I was different. And in time, it fit again, just in a new way. So I think that is where I am now. I’m fitting back in, just in a different way.
So our number one priority right now is having fun and living. Over the past year, and especially these last 8+months, Neil and I have grown closer in ways that I find hard to explain. We have both been through a lot and in doing it together there is a bond that I’m sure few know. There is a closeness now that makes everything else seem like a distraction. I stand in awe of the man who held my hand through this and I am humbled to be loved so much. He has anchored me when the waves just seemed to keep crashing and at times when I felt myself drifting away and even still as I chart a new course. As we have been able to venture out I find myself not caring what we do or where we go as long as we are together. We both find it hard to be apart for any significant amount of time and on most days Neil comes home for lunch just so we can spend time together. I am happiest and most grounded when I am with him. He makes everything seem right.
So we are off for some fun in the sun and I hope that all of you will enjoy many sunny days this summer. I will have my next set of scans at the end of June and I will keep everyone posted as we go. I don’t think I could ever adequately tell you how grateful I am for all of your prayers and how effective they have been. It is truly a privilege to have witnessed the power of prayer first hand in such an amazing way. You could never know how much your support has and does mean.
With love and gratitude,
–For those of you who want to take a look, I’ve put some updated photos on the website.