Tuesday, December 28, 2010

It's all fun and games 'til someone has sepsis.

It all started on Christmas Eve, naturally. We were at Phil's parents' house about 90 minutes away from home and Phil woke up feeling not so hot. His mom noticed and asked me what she could give him for pain. When I asked what kind of pain, he said he was achy.


We'd all passed around a yucky cold the week before but felt like we were on the upswing so this achy-breaky turn of events was certainly news to me. Our P.A. had given Phil a prescription for a Z-Pak the day before, just in case he got worse over the holiday. Realizing this qualified as worse, I gave the prescription to his sister and her boyfriend to get filled at the pharmacy and also had them get a thermometer so we could take his temp.

By the time they got back Phil was fading fast. He was on the couch under blankets, flushed and lethargic. His temperature was 103.9. I called our clinic in Ann Arbor which was closed because of the holiday, but spoke to the nurse on call who told me, in no uncertain terms, to go directly to the ER. So we did.

While there, Phil's fever got up to 104.3 and his resting heart rate was 97. (It's normally about 60.) His breathing was labored, as if he were jogging, but he was just lying there. The ER doctor called our clinic back in Ann Arbor and they agreed that Phil should immediately have IV antibiotics and be put on an ambulance back to U of M. After speaking with Phil's mom, we all agreed this was the best plan. Phil's sisters came to the ER to bring him food and sit with him while I took Ruby back to the house, packed up the kids and all our belongings with the help of Phil's parents and all my brothers-in-law, and the kids and I headed back home sans Phil.

Phil, his mom and sisters at the ER in Midland

Phil was admitted to U of M at about 6pm on Christmas Eve. I got home with the kids shortly after that and my parents came over to hang out with Ocean and Iris while Ruby and I headed to the hospital. By the time she and I got there Phil felt a little better thanks to the fluids and antibiotics but he was definitely still feverish at about 103. We were told he had an infection that was overwhelming his body. Diagnosis: Sepsis. But they were going to run blood cultures to find the source of the infection and he would probably have to be in the hospital for a few days pending the results.

The next morning, Christmas, I took all the kids to my parents' house to open gifts. Phil Skyped in from the hospital so he was able to watch the kids open their gifts. I then left Ocean and Iris there and Ruby and I went back up to the 8th floor at UMHS to hang out with Phil. His fever had come down quite a bit but he was also taking Tylenol for a headache so it was hard to tell if the fever had broken or if the Tylenol was masking it. Phil's parents, sister and sister's boyfriend had also driven down to spend the afternoon with him. He had a flu culture done which came back positive. They did a chest x-ray and we're waiting for those results.

On Sunday my mom came over to watch the big kids so Ruby and I could go back to the hospital. Phil was definitely looking much better and felt better too. He was off the Tylenol and his fever was gone. We walked the halls a little bit and Ruby smiled at all the passers-by as she is famous for. That evening the doctor told us Phil's x-ray came back showing pneumonia, primarily in his right lung. They put him on some big-gun antibiotics that night.

Feeling much better.

Yesterday, Monday, the doctor was confident enough in Phil's recovery to send him home on an oral antibiotic. We were out of there by 2:00.

All of Phil's chemo is currently on hold until he's better. He feels about 70% today. He still sounds pretty bad but better than he's sounded for the last week.

There are a hundred lessons we learned through this experience. I do not have the bandwidth to recount them all right now. The one I will share is probably the most obvious: If you don't feel well, call your doctor. Immediately. Things can go from zero to sepsis in a matter of hours, especially in the immune-compromised patient. We didn't realize how terrifying things were until it had settled down a little. We're not dwelling on it, but lesson learned.

(Another thing I learned is that sputum is possibly the most disgusting-sounding word in the English language with an equally disgusting definition.)

Christmas was not as we expected or envisioned for 2010 but we were able to experience the true meaning of it this year: Grace and mercy.

We're looking forward to a lighter, brighter 2011 for all of us. Cheers!

Wednesday, December 22, 2010

Resourceful Wednesday: When you need an advocate.

This organization was recommended to me when we were going 'round and 'round with our insurance company and the billing department at the hospital. It's pretty common for billing mistakes to happen when you're at the hospital more often than you aren't, so it's nice to know the Patient Advocate Foundation is there to assist those of us who may need the help when we aren't making any headway. And that's not all they do. From their FAQ section:

"Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability."

Best of all, their services are free, made possible by donations.

I hope you all have a Merry Christmas, filled with love and light.

Monday, December 20, 2010

Myeloma Mondays #34: Pam from West Orange, NJ

***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story! -Phil

Where were you born and raised?

  • Short Hills, NJ

Where do you currently live?

  • West Orange, NJ

When were you diagnosed and how old were you?

  • Diagnosed March 1, 2010, age 48.

Did you know what MM was prior to diagnosis?

  • No, but knew anything ending in “oma” is bad.

Is there anyone else your in family with MM?

  • No

What led to your diagnosis?

  • Exhaustion, bloody noses, anemia.

How many times were you referred before actually being diagnosed?

  • Just once.

Where have you received treatment?

  • Chemo: West Orange, NJ
  • Stem cell transplant and follow-up: Hackensack, NJ

Explain your treatment history:

  • 3/20/10: Started RVD
  • 6/9/10: Completed 4 cycles of RVD
  • 7/27/10: Autologous stem cell transplant
  • 12/9/10: Was told I'm in "stringent complete remission"!!!

Why did you or your doctor choose a specific treatment?

  • I’m young and healthy (except for MM), so I went for the transplant despite my fears.

What has been the side effects of the different treatments?

  • Dex was the hardest to take—made me feel like I was jumping out of my skin. Long hot baths, calming music, and yoga helped. Revlimid gave me a mild rash once, but it went away with cortisone cream and never came back. Velcade caused some burning/ tingling and cramping in my calves, which went away about 6 months after I stopped treatment.
  • During the transplant I was tired and nauseous. The diarrhea was a drag. So was the metallic taste in my mouth that made everything taste terrible. These things were all tough, but not excruciating—and they passed.

What has been the hardest thing about your MM journey?

  • Fear of the unknown.

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

  • You are stronger than you know. This journey is hard, but bearable. The love and support of your family and friends will help pull you through.
  • Oh, and DON’T read all the scary statistics about MM—most of them are out of date and probably don’t apply to you.

How have you been able to stay positive and encouraged in your MM journey?

  • I try to surround myself with people, things, and activities that create positive energy. Exercising—even if it’s just a slow walk—is good for body and soul. When things are hard, I tell myself, “this too shall pass.” I laugh as much as I can.

After being diagnosed... What perspective was changed the most?

  • I try to live in the moment—the past is gone forever, the future is uncertain.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

  • No.

What MM sites or blogs had you found good information from after diagnosis?

  • MM for Dummies has been SO inspiring and helpful! I dip in and out of many of the links on this blog. BMT Infonet was great for transplant info.

Friday, December 17, 2010

Physical Friday - Back to it

Working out sucks. Doesn't it? I would rather just enjoy thinking about how one day I will be conquering triathlons and maybe a marathon or two just to show MM who's boss. It's hard to get into that rhythm after having been out of the game for a while. It doesn't help that I am in the worst shape of my life and significant progress seems like an up hill battle that pails in comparison to dominating Myeloma. So it is easy to not even bother with this hill; something I did for the last couple of weeks.

Coach Carr would always remind us that each day you are either getting better or getting worse. What you did yesterday and what you plan to do in the new year means nothing for today. So winning is all about what you accomplish today.

Today was different....I was a Victor. I took one step up the hill. It wasn't huge, but it was in the right direction. I think sometimes I focus too much on how big a step I am taking rather than realizing that I am on the hill and heading up. So it's about having a lot of grace in this journey.

To dominate MM, it's critical that we keep our bodies in the best physical condition. We already have a lot of strikes against us with a disease that compromises the immune system and aggressive chemotherapy that also lowers the immune system, and for those of us who have transplanted once or twice, our years of built up resistance and immunity has been taken from us.

I encourage everyone to take a step in the right direction Today. Don't focus on how big of a step or how big of a hill you have to climb. Pick up your knee, lean forward and dominate that first step. Tomorrow, hit the repeat button, but let's not get too far ahead of ourselves.

Wednesday, December 15, 2010

Resourceful Wednesday: Food, glorious food!

When Phil was first diagnosed we remained in a state of shock for weeks. Ocean was 2 and Iris was 9 months old. I was obviously overwhelmed and the prospect of preparing dinner was enough to send me over the edge. We shared our news with a few close friends and immediately we had dinners being brought to our house. That was only the beginning of Meals-a-Plenty '08/'09/'10. I'm so thankful for my community!

With a cancer diagnosis there's so much to consider and take care of, and sometimes the mundane daily tasks are what can take a huge toll on us emotionally. If you have people who have offered to help, let them! Meals are an easy way for your friends, family and neighbors to offer practical help when they want to help but aren't sure how. And consider using these free tools to keep it all organized:

Lotsa Helping Hands allows a designated person to keep track of the patient's or family's needs. From meals to yard work to childcare, this scheduler will ensure that everyone is on the same page.

is meant for new moms, but we used it to simplify our meal scheduling. It's really easy to use and doesn't require an administrator.

Google calendars are also helpful for keeping track of those things that need to get done and can easily be shared with everyone who wants to be involved.

Am I missing any good sites for keeping your team organized and on the same page?

Have a happy hump day, homies.

Tuesday, December 14, 2010

Southern Pearls Rock Cancer Kicker, Dominate MM

Riley is not only fighting cancer like a girl, she is DOMINATING! Last Friday she hosted the first ever Cancer Kicker event in the south (Rock Hill, SC) and by the looks of all the pictures on Facebook, everyone had a blast.

This was third and final Cancer Kicker Event this year. I cannot tell you how thankful and I am for the folks who stepped up to the plate to grow awareness for Multiple Myeloma and raise funds so that one day everyone will get an opportunity at the game winning kick!

You can keep up with Riley and her continued efforts to dominate MM by going to the Southern Pearls Cancer Kicker Fan Page on Facebook.

P.S. Many Thanks to all that showed up last Friday and to McHale's for hosting the 1st Southern Pearls Cancer Kicker Event!

Monday, December 13, 2010

Submit your MM Story Today!

This year we have collected 34 Myeloma Monday stories of people of all ages, race and all over the globe. These stories are bedrocks of hope for us who are taking on Multiple Myeloma. Most of them provide encouragement and are filled with wisdom and experience in dealing with this disease.

Let's keep the stories rolling. If you or your loved one would like to share your MM journey, go here!

The first 3 people to submit their MM Journey will receive a Free dominate shirt...a simple way to say thanks for taking the time to share your story with everyone.


Saturday, December 11, 2010

Quick Update: Cycle #5

Cycle #5 is almost in the books, which means I am headed to an off week of chemo! I have gotten quite used to drinking chemo on B1 as I have tallied 50 infusions to date over the last 14 months.

With the M-protein holding at 0.2 since my 60 day post tandem transplant #2, I am taking to exercise and reading to keep my mind and spirit right. My muscles have disappeared over the last few months which is a painful reality that I need to get over. It is really starting to motivate me to Dominate 2011, a campaign that will be all about returning my body to top physical strength so it will be ready for any twist or turn in the future.

The kids are a delight right now, Cassie is still a rock and looking hot with her new lighter highlights and I am asking Santa for a reduction in the M-protein this year!

Thanks to everyone for the continued encouragement and prayers as we finish out the end of the year.

Wednesday, December 8, 2010

Resourceful Wednesday. And an update.

Hey gang! Just popping in to quickly tell you about an awesome resource through the Leukemia and Lymphoma Society. Perhaps you're aware of the financial assistance available to patients through the LLS's financial aid program. Patients with a confirmed blood cancer diagnosis can print, fill out and mail in this application to receive $150. Funds are limited but you can reapply each year. Many thanks to all the volunteers and supporters of the Light the Night Walk, which helps raise the money to make this possible for all of us.

I also want to update you all on Phil's latest lab work. His M-spike is holding steady at .2 and it hasn't budged since his 60-day post-transplant labs. He's continuing on his consolidation therapy (that means two weekly infusions at UMCCC and a boatload of pills at home) for another cycle and we're tossing around the possibility of adding two more cycles after this just to see if that will help. We're weighing possible risks versus possible benefits and plan to dive a little deeper into what all of this means at our next visit with our extraordinary medical team. I'm hoping they'll just pull out a magic myeloma wand and make it all go away.

Just to end on a positive note, here's Ruby sitting up finally.

Ruby says Happy Hanukkah to those of you celebrating!

Tuesday, December 7, 2010


I am pleased to report that the Columbus Cancer Kicker Event held the day of the UM vs. OSU football game was a huge success! Barb Hess, whose mother was diagnosed over a year ago with MM, has been on a mission ever since to dominate Multiple Myeloma. Her passion, commitment, determination and maximizing personality was nothing but tremendous as she helped raise a whopping $12,630! 100% of those funds will go directly to Dr. J to advance his research to dominate MM. (Big Thanks to Gallup for their generous $5,000 Donation!!!)

Cassie and I were blessed with a stay at the Fort Rapids Hotel and Indoor Water Park on the Friday before the event and the kids just had a blast. For all our family has had to endure this year with my treatments, it was really a weekend of celebration, apart from the actual football game where the Buckeyes walked all over my Wolverines. Although Cassie and I were the only ones proudly sporting Maize and Blue, we felt like we were with family.

One of the greatest parts of the weekend was being able to connect in person with several MM Dominators (Matt and Kirk in particular) that I have been tracking and communicating with over the last year as we have all aggressively taken on Multiple Myeloma. They all have incredible stories filled with trials, perseverance and much hope. Here is the story of Matt (in picture below) and Kirk. I don't know how to explain it, but I feel like we are all pulling each other along in this journey. Thanks Barb for leading the way!

Thanks to everyone who participated in this event and all those who actively choose to dominate cancer and life for my family's sake and also all those who are affected by Multiple Myeloma, other cancers and all that other dark stuff that creeps into our lives. Continue on in the DomiNation!

Monday, December 6, 2010

Myeloma Mondays #34: Dave from Westerville, OH

**To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org

Where were you born and raised?
  • Columbus, Ohio
Where do you currently live?
  • Westerville, Ohio (suburb of Columbus)
When were you diagnosed and how old were you?
  • April 9, 2007
Did you know what MM was prior to diagnosis?
  • No, I had never heard of...
Is there anyone else your in family with MM?
  • No, No one....
What led to your diagnosis?
  • I had had a couple of bouts with Pnuemonia and in intensive care for a couple weeks each time.
How many times were you referred before actually being diagnosed?
  • The second bout with Pnuemonis they found a spot on my 6th rib
Where have you received treatment?
  • OSU Medical Center at The James
Explain your treatment history:
  • Velcade
  • Revlimid Clinical Trial
  • Thalidomide
  • Harvested 7.5 stem cells for future transplant
Why did you or your doctor choose a specific treatment?
  • My bone marrow layout shows that my type of MM is very treatable and responds well to Thaldimide.
What has been the side effects of the different treatments?
  • Some neuropathy, rashes, appetite and taste changes....
What has been the hardest thing about your MM journey?
  • The effect on my wife and kids and my elderly parents...
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  • Get to a good treatment facility (research), find a great Docter (Like Dr Don Benson MD, PhD at OSU The James) Checkout all your options, and don't give up...
How have you been able to stay positive and encouraged in your MM journey?
  • Faith (Jesus), Friends and family support. Only with my amazing wife Missy...
After being diagnosed... What perspective was changed the most?
  • Time, what is important in life....
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  • I used to work in the Auto Manufactoring Industry (12 years)....
What MM sites or blogs had you found good information from after diagnosis?
[Here is an online resource] of videos from MM Patients about their experience living and battling Multiple Myeloma

**To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org

Thursday, December 2, 2010

Thankful Thursday #6: Caregivers

I am thankful today for caregivers; especially my own. I tell everyone that I think it is much harder to be the one walking along side the myeloma patient, than being the myeloma patient. The burden the caregiver has to carry is unimaginable to me. They have to educate themselves on the disease, in my case carry and deliver a baby, with two little ones already in the nest; and most importantly they have to be a rock.

Cassie has been all this and more. She's made sure we didn't lose our house when things got dicey, she has maintained focus on the kids so that there emotional landscape has not been wavered by this Myeloma Monster who entered our household over two years ago and she has had grace for me during my highs and very highs thanks to Dex.

When we started are dating relationship we called ourselves PnC...not to be confused with the bank that acquired our beloved National City. It stands for Team Phil and Cassie. I would be lying if I said the last year treatment has been nothing but X's and O's for (that's kisses and hugs, not a football schematic), but we have definitely continued to be united in our quest to dominate Multiple Myeloma.

As I transition out of aggressive treatment in the next couple of months, look for Cassie to return her voice back to MM for Dummies to share her insights on how the last year went, what we've learned and where we might still be struggling. She is good at keeping it real with a healthy dose of humor. Here is her recent post in her new series titled "Resourceful Wednesday."

Tomorrow (Friday) I will give a physical health update explaining what post-tandem auto-transplant consolidation therapy has meant to me and my body. By then I should get an update on my M-protein/spike which I hopeful for a decline from the steady 0.2 result I have been given over the last 3 months since starting this treatment regiment.

Please share in the comment section what your caregiver has meant to you. Better yet, if you are a caregiver, please express what the role has been for you.

Wednesday, December 1, 2010

Hello again! And an intro to Resourceful Wednesday.

Guys! Hi! Wow, have I missed your bright, shiny interfaces.

Is it snowing where you are? Because it's snowing where I am, and I was caught off guard this morning when I awoke to white stuff instead of rain. So I did what any reasonable person would do in this situation. I put on my coziest scarf and hightailed it to Zingerman's to get a mocha.

Cheers to bloggy friends and to hot coffee!

Our journey is far from over with two more rounds of chemo added to the docket but the most challenging parts of it are steadily waning and, while Phil works to regain his strength and sets his sights on going back to work, I'm finally able to take some time to do more of what I love, including keeping up the blog. Thanks to all of you who have been checking in with me through email and Facebook; as I told a few of you, it's definitely a new ballgame trying to juggle three kids! Thankfully Ruby is quite a peach and as Ocean and Iris get older the physical demands lessen which allows me a bit of breathing room... something I haven't had in a while! Ahhhh.

Phil and I have been tossing around the idea of creating a regular weekly post called Resourceful Wednesday which will provide practical resources that we have found to be helpful over the last couple of years. While the title of our blog verifies the fact that we are no experts in myeloma, we do have some more insight now that we have a bit of experience tucked snugly under our belt. Insight that may or may not be helpful to some of you. And if it's not, maybe I'll just tell jokes instead and we can call it Bad Attempts at Comedy Wednesday.


So starting next week we'll begin exploring a different topic each Wednesday and I'll provide online resources that we've used or have been shared with us. I also welcome your comments to provide topic ideas or for sharing any resources that you've found to be helpful in your own journey. Let's keep sharing and learning from each other. And also drinking hot drinks on cold days.

Warm, cozy hugs to you all!