I received a call from the nurse at my NH oncologist. She said all of my tests were back and everything is normal. I should be doing the dance of joy, shouldn't I? Instead, I'm holding back on the dance...at least until I see the lab results myself. You see, I asked the nurse a few questions, specifically about my M-spike, a myeloma marker. The nurse told me she didn't see anything marked M-spike. Then I asked about my protein level. She said '6.something, all normal.' This is not the protein level I was asking about; if it were and those results were accurate, I would extremely unhappy. So I'll get back to my oncologist and get the results in my hand and then I'll be happy.
However, my primary care physician, who has been truly amazing - she calls every month to check in - called today and said my recovery has been 'phenomenal!' And I believe it has. I'm doing so much and I almost feel like my old self. Still, I need to be mindful of my activity. I worked out of the house 3 days this week and now I am very, very tired. Clearly, too much too soon. Lesson learned. But maybe I'll do a little dance of joy tonight anyway :-)
This Sunday I am off to Kripalu for a weeklong retreat for women with cancer. I will be there Sunday through Friday. I've never been to Kripalu for more than a few days, so this will be a new experience for me. I'm looking forward to connecting with other women, practicing yoga, and learning some strategies for when I feel anxious about having cancer. I'm also looking forward to being back in the Berkshires. The foliage should be spectacular! Full report when I return.
Friday, October 21, 2011
Tuesday, October 18, 2011
Eight weeks ago today
Eight weeks ago today, my stem cells were re-infused in me. Eight weeks ago! In some ways, it feels like yesterday and in other ways it feels a lifetime ago. One thing is certain - a stem cell transplant is not for the faint of heart. It was much more challenging than I understood it would be and I know that I am just starting to remember the 3 weeks in the hospital and the first 2 weeks at home. I don't remember much. I have little memory of visitors, conversations, or nurses (apparently I made 2 bracelets and gave them to the nurses who cared for me - no memory of that). I do remember some of the pain and I remember how tired I was and I remember walking around the unit, trying to get some exercise. I'm told while in the hospital I said to my sister Cindy that I had been watching cooking shows and had written down Thanksgiving recipes. If I had written down recipes, they are nowhere to be found!
And today, 8 weeks later, I went to an appointment with my NH oncologist. He was surprised to see how well I am doing. I told him I was out and about by myself, walking 15 - 20 miles a week, and working from home. He told me that some people are still in bed at week 8! I think I would never make being in bed for 8 weeks without totally losing my mind!
Now granted, I still get tired, my walking is not always aerobic, and I am only working 10 or so hours per week. I still suffer from indigestion, sleeping through the night is not happening, and my taste buds haven't fully returned. I still have a long road to recovery. I am mindful that I am only 8 weeks beyond the major trauma my body experienced.
However, how blessed I am! Really. To be as well as I am today, it is quite amazing to me, particularly after seeing my dr's surprise today. My prayers and your prayers continue to be answered. Yes, I am blessed.
Oh, and my test results from my CBC were mostly normal. There were 2 slightly low counts, but nothing to cause worry. Other tests results, more indicative of myeloma, will be ready at the end of the week. More on that when I have the results.
Tomorrow I make my way to my office at work. I'll stay there for a couple of hours. I know I'll be tired just getting ready and driving there, but it will feel good to be there. And I'll be without a scarf :-)
And today, 8 weeks later, I went to an appointment with my NH oncologist. He was surprised to see how well I am doing. I told him I was out and about by myself, walking 15 - 20 miles a week, and working from home. He told me that some people are still in bed at week 8! I think I would never make being in bed for 8 weeks without totally losing my mind!
Now granted, I still get tired, my walking is not always aerobic, and I am only working 10 or so hours per week. I still suffer from indigestion, sleeping through the night is not happening, and my taste buds haven't fully returned. I still have a long road to recovery. I am mindful that I am only 8 weeks beyond the major trauma my body experienced.
However, how blessed I am! Really. To be as well as I am today, it is quite amazing to me, particularly after seeing my dr's surprise today. My prayers and your prayers continue to be answered. Yes, I am blessed.
Oh, and my test results from my CBC were mostly normal. There were 2 slightly low counts, but nothing to cause worry. Other tests results, more indicative of myeloma, will be ready at the end of the week. More on that when I have the results.
Tomorrow I make my way to my office at work. I'll stay there for a couple of hours. I know I'll be tired just getting ready and driving there, but it will feel good to be there. And I'll be without a scarf :-)
Monday, October 10, 2011
What a difference a week makes!
I know my last blog entry had a few people concerned. It had been an emotional week. But that low week came and went, and this past week was quite different. It was a high week!
I'm working more regularly now from my home office. It is good to have my brain engaged again with work. And while I still occasionally have to search my brain for the right word, I think my cognitive engine is chugging less and roaring down the track more often. It feels good!
And I am exercising more now, too, by way of walking. This long weekend I clocked more than 13 miles on my pedometer. I need to continue to walk during the week, though. I don't want to return to my old habit of being a weekend warrior.
But back to the topic of work. Tomorrow is a big day. It's my first professional appearance since the beginning of August. I have a 3 hour meeting to attend and there has been a lot for me to think about in preparing for it. Germs, of course, are high on the list. What if someone in the meeting has a cold? Do I pop on the mask? Leave? I am prepared to do either. Shaking hands? Hmmm. I've got the hand sanitizer in the pocketbook just in case, but I probably will just decline a hand shake or a hug from my colleagues. What to wear? Not much fits now that I am down 15 lbs. I did manage, however, to find an oldie but goodie Ann Taylor suit in my closet that hasn't fit in awhile and now fits. Whew! Good thing I didn't give that away! But the head? What to do with my somewhat bald head? Scarf or no scarf? After much fretting about it and talking with others, I decided on no scarf. I have teeny tiny hair on my head, so I am not actually bald (pretty close, though!), and I think the scarf makes me look like I'm sick. No scarf! And the final consideration - can I last the entire 3 hour meeting after driving 30 minutes to get to the meeting, never mind the fussing to get up early, appropriately dressed, and out of the house on time? I guess I'll find out tomorrow.
Onward and upward!
I'm working more regularly now from my home office. It is good to have my brain engaged again with work. And while I still occasionally have to search my brain for the right word, I think my cognitive engine is chugging less and roaring down the track more often. It feels good!
And I am exercising more now, too, by way of walking. This long weekend I clocked more than 13 miles on my pedometer. I need to continue to walk during the week, though. I don't want to return to my old habit of being a weekend warrior.
But back to the topic of work. Tomorrow is a big day. It's my first professional appearance since the beginning of August. I have a 3 hour meeting to attend and there has been a lot for me to think about in preparing for it. Germs, of course, are high on the list. What if someone in the meeting has a cold? Do I pop on the mask? Leave? I am prepared to do either. Shaking hands? Hmmm. I've got the hand sanitizer in the pocketbook just in case, but I probably will just decline a hand shake or a hug from my colleagues. What to wear? Not much fits now that I am down 15 lbs. I did manage, however, to find an oldie but goodie Ann Taylor suit in my closet that hasn't fit in awhile and now fits. Whew! Good thing I didn't give that away! But the head? What to do with my somewhat bald head? Scarf or no scarf? After much fretting about it and talking with others, I decided on no scarf. I have teeny tiny hair on my head, so I am not actually bald (pretty close, though!), and I think the scarf makes me look like I'm sick. No scarf! And the final consideration - can I last the entire 3 hour meeting after driving 30 minutes to get to the meeting, never mind the fussing to get up early, appropriately dressed, and out of the house on time? I guess I'll find out tomorrow.
Onward and upward!
Sunday, October 2, 2011
The ride
The Mind Eraser. The Great Chase. Two Face: The Flip Side. These roller coasters could all be renamed: Erasing Susan's Mind, Susan's Great Chase, Two Face: SUSAN and susan. One moment I'm up at the very top, the next moment I'm careening downward, usually into a puddle of tears. One expects to go up and down on a roller coaster. For me, the harrowing downward track comes without notice. It's exasperating and exhausting.
More and more often these days I feel very good. I feel energized and happy and ready to 'get back to normal.' It's on those good days that I am most surprised when tears come. Maybe it's because I realize there is no 'getting back to normal.' I am changed, I am different, I am...I have cancer. Why and how can I still, still, after all these months be stunned - yes, stunned! - that I have cancer?? It aggravates me that I have these erased-mind moments.
I haven't always been quick to tears (though my family and friends may disagree), but it has become more so as I've aged. I'm emotional, yes, but terribly sentimental. I had family visitors yesterday and I thought I would lose it when they arrived and then again when they left. And my dad returned to Florida today - that was a good long cry, with sporadic outbursts during the morning.
Is this extra tearfulness related to having cancer? I don't know. My guess is yes.
When I last saw Dr. A, he told me to live my life and don't think any ailment or lousy day means the myeloma has reared its nasty head again. Easy to say, hard to live. I am anxious for my next check-up. It will be here in NH. I won't return to Dana-Farber until November and then every 3 months thereafter. In between, I'll see my NH oncologist monthly. This change is because my check-up at D-F was very good and my blood counts continue to show the positive impact of the stem cell transplant. Dr. A feels that I am ready to be released from his weekly care. All good news.
So what's with the tears, you ask?
You see, I'm on this new ride, not the Mind Eraser, the Great Chase, or Two Face: the Flip Side. I've taken my seat, tightly buckled my seat belt and secured my harness. I'm on the ride of my life and there is nothing quite like a roller coaster to test one's mettle.
More and more often these days I feel very good. I feel energized and happy and ready to 'get back to normal.' It's on those good days that I am most surprised when tears come. Maybe it's because I realize there is no 'getting back to normal.' I am changed, I am different, I am...I have cancer. Why and how can I still, still, after all these months be stunned - yes, stunned! - that I have cancer?? It aggravates me that I have these erased-mind moments.
I haven't always been quick to tears (though my family and friends may disagree), but it has become more so as I've aged. I'm emotional, yes, but terribly sentimental. I had family visitors yesterday and I thought I would lose it when they arrived and then again when they left. And my dad returned to Florida today - that was a good long cry, with sporadic outbursts during the morning.
Is this extra tearfulness related to having cancer? I don't know. My guess is yes.
When I last saw Dr. A, he told me to live my life and don't think any ailment or lousy day means the myeloma has reared its nasty head again. Easy to say, hard to live. I am anxious for my next check-up. It will be here in NH. I won't return to Dana-Farber until November and then every 3 months thereafter. In between, I'll see my NH oncologist monthly. This change is because my check-up at D-F was very good and my blood counts continue to show the positive impact of the stem cell transplant. Dr. A feels that I am ready to be released from his weekly care. All good news.
So what's with the tears, you ask?
You see, I'm on this new ride, not the Mind Eraser, the Great Chase, or Two Face: the Flip Side. I've taken my seat, tightly buckled my seat belt and secured my harness. I'm on the ride of my life and there is nothing quite like a roller coaster to test one's mettle.
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