Blame it on Steroids and Hallmark

I was told by a very dear friend that I understate the side effects of my chemotherapy. Perhaps it is unfair of me to do that for those of you out there dealing with the same treatment or facing it in the future. So, in full disclosure, I will list everything that I’m dealing with today on Revlimid:

1. I have a headache, but it is not a bad one.
2. The edema has been hard to control for about 10 days now; my feet get fat at night and my legs look like giant bratwursts.
3. I am hoarse from the dexamethasone (steroid) I took on the weekend, but it will go away in a day or two.
4. Vision in my right eye is a little blurry from the steroids, but not too bad.
5. I always feel hungry, although I am not. Definitely blame it on the steroids.
6. My hair is barely growing at all, but at least it is still on my head.
7. I have bruises from the daily Alixtra injections (to prevent blood clots).
8. I draw the line on gastrointestinal issues. These are best left to the imagination, or you can read all about it in the literature.

All in all, Revlimid is relatively easy for me to take. I have many more side effects from the steroids than from Revlimid. For me, Revlimid definitely has been much better than Velcade, considering the esophageal pain and GI issues that I had with it.

I cannot believe that September is nearly over. One month more, and all the leaves will be on the ground, waiting for us to rake them away. My computer calendar says there are 94 days left in the year! You know what that means if you have to buy Christmas presents. Only 87 shopping days left. In the spirit of living life Day by Day, I’m going to try very hard to enjoy shopping for presents this year. But so often I find I’m getting something for the bus driver and nothing for people that I’m closest to, simply because we’re all so overwhelmed by the number of gifts we feel we have to buy. That is so stupid. Anyway, it is too soon to be thinking about Christmas, but I blame it on Hallmark.

As for books, I’m just finishing up the Peter Mayle trilogy: A Year in Provence, Tojours Provence, and Encore Provence. If you’ve never read these before, I highly recommend them for truly enjoyable armchair travel and many hilarious stories. They are a great diversion from fat feet, but they do nothing to calm my appetite, as Mayle often describes wonderful food and wines. These books are not to be missed by anyone with the slightest interest in Provence or even anthropology.

Enjoy your breezy autumn day!  ; )

What Lies Around the Bend

I love summer. But in two days we must say goodbye to the long, hot summer of 2010. I will remember it for many reasons, not all of them particularly good. However, I want to remember the sunny days, not the drought; the warmth of the sun, not the 90+ degrees that made my car an inferno; and the wonderful summer al fresco dinners given by our friends, not the stressful summer of chemo, side effects, and doctor appointments.

As we enter autumn, I find that I’m growing more apprehensive about my upcoming challenge, namely the stem cell transplant. I was ready to rock n' roll in the spring, but now, ummmm, I’m not so keen about it, although I will definitely go through with it. However......It can be dangerous. It will definitely make me very sick. I will lose all of my hair. It will cause my family to be inconvenienced at the least, and turned upside down at the worst. And it may not work completely, too. Did I mention that before? It is true. I may go through the whole thing and find out that I have to go back on chemo again. In fact, I’m just going to expect it, so that I won’t be devastated by news of an incomplete result. But I have to take the chance, because it is the best way to kill the amyloid factory and get a complete remission of disease.

As any English student learns, seasons are often used as metaphors for different stages of life. Spring is childhood, summer is adolescence, fall is adulthood, and winter represents old age. For my medical challenges, spring was the time of discovery of the disease, summer has represented the “easy” treatment, fall will be the “serious” work, and finally, winter represents the time to rest and restore my health. (If the transplant gets postponed till winter, then I’ll have to rethink my metaphors!) Autumn may be beautiful, but for me it is becoming a time for trepidation, to wonder what lies around the bend.

However, I will look to Cheryl (see her blog at Cheryl's Amyloid Adventures ), whom I mentioned in my blog a few months ago, for a role model. At day +80 past her transplant, she biked 12 miles! She is active and feeling stronger. I can only hope to do so well, and I will try to be as positive and determined as she has been. Cheryl is a real example of the power of positive thinking. I hope that I can follow her lead.

A Jerseylicious Day

I hope you all had as wonderful of a Labor Day as we did here in South Jersey. The weather was fantastic; that is, once that pesky hurricane blew out of town! The hurricane never really got too close, just close enough to cause rain showers in Atlantic City on Friday and gusty winds all day Saturday. But the skies were blue and the temperature was blissfully under 90 degrees, for once. This summer has surely set a record for most days over 90 degrees, and our air conditioner has run nonstop since June.

I saw Dr. Porter on Tuesday, and he said things are going as best as he could possibly hope for at this point. That is very good news, indeed. My light chains are in proper ratio and within normal limits, and that blood test was taken before I started Revlimid, so he is hoping for continued good results. (They took 10 !! tubes of blood that day, so there should be further numbers soon.) Dr. Porter said he won’t stop the Revlimid therapy until my numbers plateau, assuming there are no unmanageable side effects, so it is possible that I won’t be going through transplant for several more months.

The transplant keeps getting pushed back further and further, which has its pros and cons. Pushing back means the date is getting closer to Christmas, which would be a terrible time to be in the hospital. But I simply can’t pay any attention to the calendar; I have to pay attention to my treatment and progress. Thus far, my progress is very good, and I’m very thankful. So what is the “pro” to pushing back my transplant? Just that I’m not doing it right now. I’m not exactly in a rush, for obvious reasons!

So, eat a tomato, have yourself a Jerseylicious day, and be glad for where you are right now.  ; )