The feedback received from my first column – My Sister Has What?!?! – has been a great comfort to me and my family.  While I doubt that anyone welcomes the opportunity to join the world of cancer, the support among patients and caregivers is all that I had heard it was.  Thus, I begin by saying a heartfelt thank you to those who have reached out.

As I write this, Team Beat the H*ll Outta Multiple Myeloma (BTHO MM) marks five weeks since my sister Deana’s multiple myeloma diagnosis.  The reality of our new life has yet to fully sink in.

I confess – I love a plan, love a schedule, love a checklist.  My immediate reaction to Deana's diagnosis was to create said items. It has been a challenge to accept that multiple myeloma does not intend to adhere to my need for these.

In the spirit of full disclosure, in addition to my love of plans, schedules, and checklists, it may not come as a surprise that I prefer situations in which I have control.  Once again, multiple myeloma does not intend to cooperate.

After we left the oncologist's office late in the afternoon of April 29, it had been my intention to take Deana to the Myeloma Institute for Research and Therapy (MIRT) in Little Rock, Arkansas, the following Tuesday.  We would return to UPMC, her local treatment center, on Monday, May 9, in the event we did not stay in Little Rock for treatment. However, when we walked out of the doctor's office, messages awaited me from MIRT indicating that Deana's insurance would not allow us to pursue this course of action.  Already, things were not going as planned.

Given that the hematologist and oncologist were both insistent that treatment needed to begin quickly, I hung up with MIRT and dialed UPMC with lightning speed.  (Technically, I just pressed a button or two on my Blackberry.)  My declaration to the receptionist was that we needed an appointment for Monday, May 2, and thankfully there was availability at 11:30 a.m.  We were feeling good about Plan B, which would now be the plan.

The next several days were spent creating a notebook above all others.  Deana's binder is so large, it came with two sets of rings and a shoulder strap.

Templates were created for doctor visits, a medication log, and even thank you notes that need to be written.  Each is printed on a different color of paper and features an inspirational quote at the bottom of the page.  Matching dividers separate these sections, and there are other sections for items such as lab results.  This project took me the better part of a weekend to complete, but when we returned to UPMC, we were prepared!

In discussing the situation with our youngest sister, Darrie, the evening before the UPMC appointment, I suggested it would be great if we could begin treatment as part of that appointment.  Darrie told me there was no way that was going to happen and suggested that I cease using my "executive" approach.  She assured me that the world of medicine does not work this way!

As we met with Deana's oncologist to discuss treatment, we agreed that four rounds of Revlimid (lenalidomide), Velcade (bortezomib), plus dexamethasone (Decadron), “RVD,” would be the first step, after which time the bone marrow analysis would be repeated to see where Deana's levels were.  The hope was, and remains, that she'd be in a place where stem cells could be harvested and then we'd prepare for a stem cell transplant to take place, likely in early November.  The only possible adjustment to this plan was the addition of Aredia (pamidronate).  I could get behind that.  One more drug did not, and still does not, concern me in this context.  The plan was in place.

The doctor asked when we'd like to get started, so I responded, "How about today?"  He raised his eyes and confirmed, "Today?"  I repeated, "Yes, today."  He checked with the nurse, returned to us and said, "Two o’clock."  The plans were coming together, and we had forward progress – I was thrilled!

Nurse Shelley came in to review the schedule with us, and she won my heart when she gave us a color-coded calendar, making it easy for Deana to follow which drugs she'd have on a particular day.  Nurse Shelley was going to be a great addition to our team.

We went across the hall for Deana's first Velcade treatment, at which time we were given a notebook – a plain, white binder with white paper and white dividers.  There were some templates on the order of those I had created (why hadn't I thought to search the Internet for these??) but the inspirational quotes, which I have deemed critical, were not included.  I do think I could give the creator of this binder a few helpful pointers.

Since walking out of the hospital that afternoon, we've been in a veritable whirlwind.  Writing anything in ink is not a good idea!  The plan is adjusted all the time.

One day Deana had a bit of a sniffle, and thus, the next time she went in for Velcade, she told me that she was getting some other drug to address that. When I talked to her after the appointment, she mentioned that she will be getting that drug monthly.  This was not part of the plan we discussed!  We did not cover "what do we do if Deana gets a cold while in treatment?"  How did I miss this?

In moments like these, I feel the miles between us and wish that I were there with her in person.  She was tired and could't remember the name of the drug, I was driving and couldn't write it down, and when we talked next I forgot to revisit the topic. It can be difficult to serve as Captain of Team BTHO MM from several states away.

Yesterday, I came to learn that the plan may change again.  The doctor thinks he may check Deana's bone marrow at the end of round 3 instead of round 4.  Time to readjust.  I wonder, is this a good sign?

Keeping Deana thinking positively is job number one.  Keeping Deana thinking positively when things keep shifting is a yeoman's task.  Our team gets focused, and then has to refocus – again and again.  And it is only week five.

Five weeks ago, in the course of a few sentences, our lives were forever changed.

How will we cope with all these unknown factors and changes in plans?

How will we each make peace with multiple myeloma, which in so many ways is beyond our control?

For now, we do what the plan for the day indicates we are to do, and we continue to hope it will all work out as planned.

And we thank everyone who is with us on this journey.  No one fights alone.