Maintenance Mode

Quick update on the stomach bug. Cassie was awarded the gold star of domination as she was the single soldier combating Ocean and Iris's ralphing, while wounded herself by the same bug. Fortunately this battle lasted only 24 hours. I think Cassie is still a little depleted from her heroic effort that successfully kept the ever-so-happy Ruby and me safe from the invading stomach bug that waged war on our household.

Monday marks the end of my first 21 day cycle of maintenance which kicks off 7 days rest. At this point I am down to two side effects: (1) neurothapy (2) fatigue. They both present more as the day progresses, but are manageable, especially in comparison to the side effects that hit me when I started this treatment journey back in October 2009 (re: 12 days of projectile vomit).

I have had enough energy to shovel the affects of Snowmaggedon, and on a more enjoyable note, take Ocean ice skating for his first time this season. He dominated the ice and I am so thankful that we are able to share in these experiences; especially the hot chocolate! Ocean has also decided his favorite wintertime activity is throwing snowballs at Daddy. Good thing he throws like a 4 year old.

Much love to the Myeloma community and everyone following this crazy journey. -Phil

4 months later...

Today marks 4 months since I started chemotherapy in preparation for a stem cell transplant or two where I will be using my own cells. Just to recap, here's a list of what my body has endured over this time:

• 6 Doxil Infusions
• 23 Velcade Infusions
• 76 25mg doses of Revlimid
• 30 20mg doses of Dexamethasone
• 16 10mg does of Dexammethasone

I don't have any earth shattering wisdom quite yet, but jotted below are some quick thoughts on what I have found helpful over the last four months:

• Lean on the MM blog-o-sphere: Connect with folks who are blogging about their MM experience. These people have been an amazing network of support for us and I hope one day to meet them all in person.
• Add to the Conversation: Start blogging your journey or that of your loved one who has MM. This has helped me connect with myself, family and friends all awhile leaving a trail of information for others to be enlightened, inspired and hopefully converted to Michigan Football fans. And if you need help setting up a blog, just send me a comment.
• Side Effects: Know what they are, but understand that they will not last forever. A couple of my side effects took me to the ER/Urgent Care 3 times in my first two cycles! Four cycles later there has been no signs of these issues.
• Worse may be better: The worse I have felt, the better response my cancer was having to the drugs. Try to find the good in the worst of circumstances.....or just laugh.
• Partner with your Doctor: We are all in this together, especially the patient and the medical staff. I think having a team environment in this journey is critical. I wish this disease had a start and finish date, but we're not there yet. Therefore, we all need to push forward together.

Four months from now I hope to have dominated my first stem cell transplant with no signs of M-protein. I also hope to have been able to sit back and relax for the first time in my entire life. We'll see....