Saturday, December 24, 2011

"Isn't there anyone who knows what Christmas is all about?"

Linus:  "Sure, Charlie Brown.  I can tell you what Christmas is all about."

"And there were in the same country shepherds abiding in the field, keeping watch over their flock by night.  And lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them, and they were sore afraid.  And the angel said unto them, 'Fear not, for behold, I bring unto you good tidings of great joy, which shall be to all people.  For unto you is born this day in the City of David a Savior, which is Christ the Lord.  And this shall be a sign unto you:  Ye shall find the babe wrapped in swaddling clothes lying in a manager.'  And suddenly there was with the angel a multitude of the heavenly host, praising God, and saying, 'Glory to God in the highest, and on earth peace, good will toward men."

"That's what Christmas is all about, Charlie Brown."

Wishing you, my dear friends, a joyous, peaceful Christmas, filled with many blessings.  Merry Christmas!

Wednesday, December 21, 2011

ER - I really didn't miss you

I suppose it was inevitable - a trip to the ER.  In the spring it seemed like I was in the ER or at the hospital on a regular basis.  I haven't thought about the hospital since my transplant, so you can imagine that the ER was far removed from my thinking.  And yet there I was last night for 4 1/2 hours.  Mask on, in an isolated room, listening to the doctor say, "You may have to stay overnight."  And I had only a half-full pocketbook.

I've been fighting a cold, head congestion and some lethargy for more than a week.  I did not go into work all of last week, though I did manage some work hours at home.  I thought a week of being at home would snap me back into good shape.  Alas, it did not.  So before I went to the oncologist for my regular lab work this Monday, I reported my symptoms.  The triage nurse scheduled an appointment for me with a PA, just to make sure I was doing all that I should be doing to recover from the cold.  The PA gave me a quick check and sent me on my way with a Z-Pak prescription.  Now keep in mind this is the same PA who didn't give me a prescription when I had that nasty infection in the spring.  And what happened then?  A trip to the ER and then a hospital stay that was ugly. Ugly indeed.  (Remember the nasty language blog?) I'm thinking the PA decided to prescribe a drug that could possibly ward off any illness that was lurking in my body but at the same time would not be overly potent.  And what happened this time?  The very next day - or evening, rather - I had a temperature of 101 and my oncologist insisted that I go to the ER for a complete assessment.  He said my immuno-suppressed system with a temp of 101 needed prompt attention.  Needless to say, this particular PA has 2 strikes against her.

After I had a good cry for myself, I prepared for a trip to the ER.  My son checked some items in my bag and refilled supplies where needed, I grabbed my iPad, Joe arrived home, and off we went.

Now I can't recall if I mentioned that I had my port removed a few weeks ago.  As I laid on the ER bed while a nurse inserted an IV, I wondered why I had done such a thing! (I believe the port being a potential source of infection in my diabetic body is why!)   How much easier, though, it would be to have labs drawn from my port rather than my arm!  And, yes, they had to use both arms.

A CBC was drawn, as were several culture bottles, and chest x-rays were taken.  Everything was normal.  An hour-long drip of a more powerful antibiotic was given and back home we headed, new prescription in hand.

Having cancer isn't easy and it sure isn't a whole lot of fun, not for me and not for those who love and support me.  But, as I wrote so long ago, it's our 'new normal.'  I've been so fortunate and so blessed to have experienced such a successful post-transplant recovery.  I think at times we forget that I have cancer - and in many ways that is a good thing.  Last night, though, was a reminder that this 'new normal' is going to include the occasional trips to the ER and overnights in the hospital.  My sister sent me a text last night that said, "Don't be getting yourself crazy about this fever.  You'll get a new antibiotic and it'll be fine.  Love you!!"  And she's right.  If I get myself crazy every time something goes awry, (for instance, getting crazy as I tried to pull from my brain the memory of how to spell 'awry'), I am going to have a long, frazzled life ahead of me.  A trip to the ER, an IV.... just detours in the road and not dead ends.  Even the momentary loss of my spelling prowess is just a detour; after all, I still knew how to use a dictionary and thesaurus to find my way to the word I couldn't remember how to spell.

Saturday, December 17, 2011

Hope

Today was a full day at Dana Farber for the Multiple Myeloma Patient Symposium. We were there from 8am - 3:30pm. It was a lot of sitting! About 300 people attended and we were divided into 2 groups with the speakers spending a portion of the day with each group. And what wonderful speakers - doctors and nurses - we had! I am so fortunate to live in an area with so many hospitals and researchers focused on multiple myeloma. Represented today were Dana Farber, of course, Beth Israel Deaconness Hospital, and Mass General, sharing their research as well as that of their partners and colleagues in the US, France, Italy, and Spain.

I'm somewhat overwhelmed with the considerable research presented today. Much of it was quite technical, but it was mostly presented in terms that we patients and families could understand. Are all diseases studied in such depth? I wonder. It seems to me that I haven't been exposed to as much research in type 1 diabetes. Is it that I am just so accustomed to having diabetes that I no longer seek information on new developments? It could be. Though I receive regular updates from the American Diabetes Association, I haven't done much further investigation since I looked into moving to my insulin pump 3 years ago. Still, it seems that much progress has been made in MM in the 9 months that I've had this disease.

In addition to learning about the current research in MM, I walked away from today's symposium with 2 things: awareness and hope.

Awareness of the steps I need to take to support my good health: eating an anti-inflammatory diet, drinking at least 2 quarts of fluid daily, exploring complementary medicine, and exercising each and every day. (don't ask me about my daily walking - it's gone by the way side - but will restart tomorrow!).

And hope. Truly tremendous hope.  The developments in treatment and the progress in research give me hope that in the future I will receive more effective medication, experience fewer side effects, and ultimately live a life where multiple myeloma abides as quietly in my life as does diabetes.

Friday, December 16, 2011

'Tis the season...

...for gathering with friends and family, searching for the perfect Christmas tree, decorating, shopping....and getting colds. Yes, I have my first cold of the season, the first since my transplant. To be honest, I can't really tell if it is a cold or if my maintenance dose of Revlimid is just kicking in. I feel tired and have a stuffy head and can't seem to shake myself into the holiday spirit. Maybe it's because there is no snow and the weather is very mild for December in NH. Whatever the reason, I'm here at the oncologist for a visit and my first infusion of Zometa, a bone strengthening drug.

Overall, I have felt well. I've felt strong and healthy. It's been a bit hectic, though. Thanksgiving was a wonderful time for me, but it took me several days to recover. It was the busiest I've been since my transplant. Still, I was so glad to celebrate the holiday at home as is tradition. It was one more sign that I am returning to good health and a good reminder that I need to continue to be mindful that I still am in recovery mode. It led me to cancel my annual Christmas cookie bake-a-thon that I've held the past few years with family and friends. It's disappointing, but we'll resume next year!

I am 16 days into my 21 day cycle of Revlimid, the pill that I take daily to keep my multiple myeloma at bay. I am on less than half the dose I was taking during the spring. One thing I can count on with Revlimid is a tingly face. Remember that??? Doesn't seem to matter how low the dose is, my face is tingly.

I wrote the above 3 days ago, meaning to get back to it.  I didn't think it would take me this long!  But since then...

....the Dr. stopped my Revlimid and will start me again after Christmas - too much of a tingly face is not a good thing
....I had a bit of a response to the Zometa - some body aches and a sore jawbone (Zometa, for some reason, is not kind to the jaw)
....I was home from work the entire week with a cold - the rest has made all the difference and I feel so much better!
....and, last but not least, my lab results were excellent!

I'm glad to be off the Revlimid until the 26th.  The tingly face really was bothersome this week.   Even today I still have some tingles.  I know from my experience on chemo that drugs need to be slowly introduced to my system.  My body just rejects being bombarded with such powerful drugs.  When I start up again, I'll stay on the same dose but for a 14 day cycle.  I hope it makes a positive difference.

Tomorrow I'll be at Dana Farber for the Multiple Myeloma Patient Education Symposium.  It will be a full day with the DF team of doctors, nurses and social workers sharing the latest research on MM.  I plan to come away from it with good understanding of what is needed to keep me healthy and strong for many years to come!

Thursday, December 1, 2011

December 1, 2011

Today is a great day!  It marks the 100th day post-transplant!  I made it!!

It's hard to believe just 100 days ago I was in the hospital, pretty well medicated, lying in bed while the chaplain blessed my stem cells.  And here I am today, slowly but surely returning to a good level of activity - walking, working, eating well (maybe a bit too much!), and feeling good about my progress.  Sure, I do still get tired and I do still worry and I do realize that I am still in my infancy as far as recovery goes and I still do have a mask and gloves in my pocketbook (just in case), but each day brings about a stronger me.  I am grateful for the many blessing that have come my way in 100 days.

There's still a long way to go, but for now let's celebrate!!