Ever Better

I saw Dr Levine Monday, 12/10, and the news was good.  He was pleased with the results of my blood tests, and they took out the PICC line.  The net result will be that I was able to take a shower Wednesday without wrapping my right arm in saran wrap covered by a newspaper plastic bag held in place by athletic tape.  They also infused me with Zometa, the drug that promotes bone density.  I will continue to get the Zometa monthly, which is roughly when I will see Dr Levine.  Other than that, there was no mention of any maintenance drugs.  Whew!

Needless to say, we had lots of questions.  Would I be able to attend plays on 12/23 and 12/30?  The danger is infection from another audience member who has a cold or the flu.  The risk/reward evaluation: give the tickets away to a friend.  They pointed out that I am now on Day 41 after receiving my stem cells.  Earlier they said I had to maintain the special neutropenic diet (a diet designed for someone with no immune system) for 30 days.  How much can that diet be relaxed?  I can now eat fruits (apples, pears) that don’t have thick skins, as long as I wash them and cut off areas that washing doesn’t really clean.  Would Barbie & I be able to go to Barbados in February on a warm weather vacation?  Yes, but buy trip insurance, as a pandemic of flu would make the plane ride a ticket to disaster.  As it is, if things look OK, and we do go, I should plan to wear a mask and gloves on the plane.  Can I attend a Christmas Party organized by a group of friends?  Yes, but if anybody there is ill, plan to keep a mask on, and leave at the earliest opportunity.  People will understand, and don’t push it.  It isn’t worth it.

Since the last blog post (11/26) I have been at home, trying to get back to a normal life.  Until last Thursday (12/6) I was on Vancomycin, an antibiotic to make sure I had no remains of the blood infection that laid me low on days 8, 9, & 10 of the transplant.  I got to infuse myself twice a day through a PICC line.  A visiting nurse would replace the PICC line dressing at least once a week, and take any blood samples the doctors required.  Thus I was not required to come into Beth Israel for any appointments.  Here is a picture of Jean Chaisson getting ready to change the dressing at our kitchen table.  

The PICC line starts at the dressing on the inside of my right arm.  It goes along a series of veins to the superior vena cava, the vein right above your heart.  Needless to say, with such a straight shot right to your core, they were extra careful that the line remain clean and not a source of infection.

Here is the IV nurse after she took out the PICC line Monday. 

The removal was really quite quick.  She cleaned the place where the line went in.  Then she told me to hold my breath.  Then with one steady motion, she pulled it out, 42 centimeters of narrow tubing.  She put a gauze pad soaked in antibiotic cream covering the hole where the line went into my arm underneath a clear bandage.  I was to replace all that with a Band-aid after 24 hours.  Then I can shower!

I am to check with my back doctor before taking any more bike rides outside.  I am allowed to ride the bike on a stationary setup in the barn, but the concern for riding on the roads is about big bumps.  If I go over a pothole or a protrusion in the pavement, it could send a shock up the seat into my back.  Since my bones may still need time to become strong, I should refrain from such activities until the back doctor says they are OK.  So I have an appointment to see the back doctor 12/28.

Friday, 11/30, we had John & Patty Selin over for dessert.  John was diagnosed with Multiple Myeloma in 2004.  He was given less than a year to live when he was first diagnosed.  He had more severe bone damage than I had, and he lost 4” in height, compared to my loss of just 3”.  Just like me, his diagnosis took a long time.  He had a stem cell transplant at Brigham & Women’s Hospital, just down the street from Beth Israel.  My room looked north.  John’s room looked south.  We had LOTS to talk about.  John & Patty had come over for a visit in September, before my stem cell transplant.  John had told me what to expect, but he held back on some of the more daunting details.  Now we were free to talk things over in gory detail.  Some things have relaxed in the 8 years since John had his transplant.  He was on a neutropenic diet for 3 months, whereas I was only on it for 1 month.  All of John’s visitors had to wear masks and gloves, where my visitors were allowed to come in without masks, assuming they were not sick.  John was lucky enough to avoid any infections after the transplant, but most of his bones had lesions from the Multiple Myeloma.  We had lots of things in common, but each of our stories was unique.  Pattie was the communicator to a bevy of friends.  She didn’t have blogging available to her, so she wrote emails about twice a week.  Makes me appreciate the blog!

I am hoping this is effectively the end of the story.  Getting better from here on in should be pretty boring.  Unless I come down with an infection or injure myself in some silly way, there really should not be anything interesting to talk about.  Yes, I will have minor milestones as Barbie & I decide that returning to such-and-such an activity is OK, but there should really not be very much drama associated with those events.  I do hope to speak at church with other people who have undergone stem cell transplants, and I will certainly post the text of any such event.  But I sure hope this is my last major post.  I have enjoyed sharing the “adventure” of MM with all of you.  I sincerely hope you never have to get on a first name basis with a disease like Multiple Myeloma.  I appreciate everyone who has followed the blog and provided an audience for my ramblings.  Knowing that you were out there listening/reading provided me motivation to get my experiences down on paper.  Thanks for giving back the positive vibes that I felt coming from you.  Whether they were prayers or understanding & encouragement, I had an image of you pulling with me, and it helped.