Caution: bones @ work (days 9-10)

The Neupogen shots I started Wednesday are designed to promote stem cell production and send them from my bone marrow to my blood stream for a successful harvest on Monday.

Friday I noticed some strong jaw pain, like wisdom teeth (removed years ago) were coming in. My skull hurt too, didn't quite feel like a migraine. Pain meds from earlier weren't working so we tried a migraine pill. Nope.

When I started to feel the lower back and hip bone aches I assumed the bones were gearing up to do some work. By Sunday the jaw/skull is clearly the ring leader (most painful) and my right arm has joined the hips and back in moderate bone pain. As long as I can be mobile when necessary, I will be happy.

Rubbing an achey skull

Amy and I have come up with a good 24 hour pain management plan...even though it had her up at 1:30am this morning. I don't know how anyone gets through this process alone. I'm so thankful I don't have to.

So far, bone pain doesn't touch the agony I experience from a bout of phlebitis, so I'll take it. Heat is another pro-tip for bone pain .....for those not yet on this journey.

Mental prep begins for the jugular catheter Monday that will filter my blood for 5-7 hours in an attempt to get 2MM stem cells. Some diagrams below the catheter placement and the collection process.

Catheter placement

Collection process 

Amy leaves today <sad face>, she is incredible at keeping a schedule and shooshing me when I'm being stubborn. Don't get me started on the day she ran errands in 70% humidity in 90F heat. She did come back Dewey and beautiful......lol. Love you Aimers!! Dana comes in Sunday for the harvest phase....which may mean there is some delicious home made soup in my future.YUM!

Keeping it real

I jest a lot and try to keep this light but yesterday was the first day I broke down.

My (possibly) last IVIG occurred yesterday. It was horrible. The first vein tried blew, and was a 10/10 in phlebitis pain for 10 minutes. I cried. Amy never sees me cry. The second vein did what it was supposed to and blew at the end.....another high scale pain level.

Thus far I have been a trooper and plan to continue. Phlebitis has, and always will, bring me to my knees. I consider it more painful than appendicitis or a broken arm (I have had both). Yes, it's that bad. My veins are very angry and tired of infusions. I can't describe it....it's just terrible, horrific vein pain.

In looking on the bright side: I'm glad it happened. It reminds me why I am here, and that phlebitis would be a lifelong alternative (every two weeks).

Thank you Amy for being here...and for getting me to giggle throughout the day. Xoxo

Neupogen and Naps (Days 7-8)

The days run along and are very similar: lots of nausea and fatigue. A sprinkle of a dizzy spell or two. The weeks to-do list is getting accomplished with my darling Amy here to help. She and I go way back (est. 1986), who better to put me in my place and demand I take naps and meds as needed.

June: last girls trip to Lake Tahoe

Neupogen shots started Wednesday and continue through Monday. Two shots per day in my tummy, buttock or thigh. So far we have done the tummy, and its typically post-shot sore...so we ice pack it for a while.  At this point just hoping that any discomfort to come is minimal....been stacking up on Claritin and Tylenol to assist. I should know by tomorrow or Saturday

Spearmint calms my tummy

There was an additional trip to chop the locks. Not nearly as dramatic as I thought thanks to Bree at Hair Loft. And um, no one told me how epic short-hair bedhead would be...LOL! For those of you coming to Chicago for HSCT - I highly suggest Hair Loft, they are so kind about our situation. (shout to to Erin Castillo for the recommendation when she was here)

Sweet Bree

last time my hair was this short: 1977

kinda dig the bedhead

Routine remains the same: pills, check temperature, meals, read, to-do list, nap, sanitize, watch funny videos. Today we have two big events: lab work and IVIG.

If labs show my blood counts are low, I need to start avoiding crowds and be careful with diet. Hoping the IVIG helps with current right foot numbness, balance issues and foot-drop and carries me through admission on July 28th.

Thanks for the messages, comments and texts. they certainly put a smile of my face. Its hard for me to take a call vocally when nausea kicks in....... so thanks for understanding.

Lots of conversations and apologies to my body this week. We discuss getting through this together and how we will be stronger for conquering this. I remind her all the time of the old days of bike rides, hikes and jogs with the pup. She seems to be excited to get back to that as well, so we have a pact to stick this out together....

Until next time........

Resting and Nesting (days 4-6)

Other than a general feeling of being "under the weather" all is well. Mostly tired and wanting to sleep.

Chad left today. <insert sad eyes here>. He is good at making me calm when I need it most. He really loved Chicago and had a good time exploring. I'm looking forward to us celebrating good health here in the future.......

The weather was amazing yesterday - we woke to an impressive thunder and lightening storm this morning.....just to watch it change back to the beautiful blue skies again.

Amy comes tomorrow (YAY!).Together we will accomplish the next mission: Neupogen shots.

Neupogen stimulates stem cell production and sends them out of your bone marrow and into the blood stream. There is a chance of some serious bone pain during this process.....but that is technically a good sign.

I have an IVIG infusion later this week.....possibly my last. I have been getting IVIG every two-three weeks since July 2014. It has kept me walking, typing, driving..... A moment to thank anyone who donates blood. That blood and blood plasma helps so many people with a variety of conditions. Many of us with CIDP need that donation for normal daily function. #bottomofmyheartthanks

My plan for the next few days are "Resting & Nesting". I'm checking my temperature 2x per day, and start a few new meds this week (antibiotic and anti-fungal). There will be updates if there is anything to report.

Thank you for the calls, emails and texts. I have not felt up to chatting by phone, but will keep up on texts and emails as I can. Xoxo

The hoodie is my comfort,..... like a "blankie".

Mobilization (days 2-3)

I was discharged midday Saturday. Other than a headache, nausea and hiccups it wasn't horrible. My discharge happy face.

We went back to the hotel and I had a long nap. I woke up with hotflashes and a ton of energy. So we took a cab to a restaurant called Farmhouse. Highly recommend.

From there we explored Millenium Park.

Was a good day (Saturday).

And then there was Sunday (today).

Woke up with an unhappy tummy. It quickly turned into what I call CAT or "Colleen Alien Tummy" (those in the support group know the inside joke). Zofran, Pepto became my best friends..

It's a beautiful day here today (Sunday) - this is the view from the hotel bedroom.

I am hoping to feel a bit better so we can get out to enjoy it. But we can only do what the body will allow, so it just may well end up being a "stay in and feel icky" kinda day.

All part of the process, but all things considered, ....I'm doing just fine.

Mobilization (day 1)

Enjoying our view from 16th floor and waiting for fluid/pre med drip to start (1pm CT) before chemo begins (3pm CT).

Last night we enjoyed some Italian cuisine (I stuck with gluten free options). I put a braid in.....enjoying my hair while I still have it.

A silly shot of us before heading out for the Chicago adventure.

This is what happens when i ask chad to put my hair up.......LOL

A little insight on today's frame of mind:

First chemo dose started at 3:30 CT and wrapped at 5:30. No major issues. Mild headache, sweats....which was resolved with a thermostat change,  and minor wasabi nose. I go between wired (steroids) and napping (drowsy). But  the diuretic (lasix)  keeps you up, as many potty trips are required to flush out chemo.

I will stay the night and get discharged midday tomorrow. Looking forward to a restful day with my love who has been waiting on me hand and foot.

Let the games begin...and may the odds ever be in my favor

Pick up scheduled at 5am July 9th for our flight out of San Francisco. Destination: Chicago, a  city that has offered me a chance at my life back. I'm packed......calm (kinda)....ready.

Toes are Chicago Bears orange.

Final thought heading in to this adventure...