Tuesday, September 29, 2015

Day +56: where did 60 days go?

Days I've been back home:45

It blows my mind a that its been almost two months since transplant.

Latest Symptoms/Status:
Not much to report over the last week. Still riding the roller coaster, definition: good days and tough days. Lots of joint and muscle stiffness and pain this week. The right hand and foot are still difficult to control. If I had a type correction tracker on this post it would require a typing class I am sure. :)

While nerve pain is still present, I am gaining stamina. Meaning, I can stand/walk for longer duration over this last week. Depending on the activity I might have an extra 5-10 min. on my feet in a day, which doesn't seem like a lot.  But to someone with nerve pain, it's monumental.

Noticed beau lines in my nails (white lines across nail beds). This is caused by chemo toxicity in the nail-bed. Pretty common post chemo.. they will grow out with my nails and eventually fade

I heart Skype
I am really enjoying my Skype conversations with friends across the country (and even in other countries - Australia and England in the books)! If you have a Skype account, lets schedule a chat!

Weekly highlight

My new wig. I invested in real hair wigs, which don't fit quite right and I can't seem to style to look un-wig like. I get this bright blue synthetic one and it fits like a glove. I even had several comments from strangers about how good it looks. Random!!

real hair wig

Synthetic blue 

I will let you be the judge of which is better. I actually want to hear feedback about the blond one....I am not a fan.

I did pay a hefty price for taking the wig trip and doing a bit of walking that day. We walked 1.7 mi. versus the typical 1.1 mi. in the neighborhood. It's hard for us with CIDP, GBS, MS and the like to explain the fatigue that can hit after such a simple adventure. Its debilitating.

Fatigue is a stupid-meany -head and I don't like it

I did pay a hefty price for taking the wig trip and doing a bit of walking that day. We walked 1.7 mi. versus the typical 1.1 mi. in the neighborhood. It's hard for us with CIDP, GBS, MS and the like to explain the fatigue that can hit after such a simple adventure. Its debilitating.

Another transplant vet and friend and i were discussing the difficulty of explaining to friends/family that one day you have loads of energy and low pain and the next you can hardly function. We also discussed fatigue and our "limits" in a day. Someone posted this spoon analogy the other day in our support group, I thought I would share. If the range is from 6-12 spoons of energy a day, you see how that is gobbled up quickly.

My Noggin
The hair is growing in, and fast! I look like a baby ostrich, and I'm okay with that.

I do wish I could bring back the Mohawk. It was a one time experience.......memories....I see where my love for blue hair came from. :)

Perhaps next week there will be more updates. My nuero-specializing outpatient Physical Therapy got approved today, so I will schedule that ASAP (I hope to start next week). I'm sure it will be challenging at best, but much needed.

Have a great week!

Monday, September 21, 2015

Day +49: Progress, Piers & Reflection

Days home: 38
Days since transplant: 49

Sorry this is a long one.......

Setting realistic expectations:
I wanted to spend a moment explaining the expectations from this treatment. There tends to be a misconception of "I thought this treatment would take care of that/cure you/make you better" so here is my feedback.

  • It is not a cure. It's only goal is to stop progression of my CIDP. There is a lot of damage from the disease that may not resolve.
  • If I am lucky to see improvements in functions I have lost, it's a bonus.
  • May continue to: have limitations from the damage, need my cane on occasion. 
  • Will continue to have unpredictable good/bad days. Bonus: no longer have to maintain stability with infusions every two weeks.
  • Most noticeable improvement will be seen at 6 months, February 2016, when I head back to Chicago for a follow up. Healing can continue for up to two years (Aug 2017).

Road to remission :
Another point, is that while my treatment (HSCT) is referred to as a "stem cell transplant", it's really a chemotherapy treatment that uses stem cells to help reboot the immune system. I like to make this clarification because of all the "non chemo" stem cell treatments being offered at $15k a procedure, promising remission. They will not produce disease remission like HSCT does. As we say in our support family, "no chemo, no cure", because it's the chemo that halts the disease.

Visit here to learn more about the program at Northwestern

Limitations that remain:

  • Numbness and weakness in legs, feet hands. Right side far worse than left. Motor function is ok. The sensation in my fingers/hands has not recovered much, whereas I have gained a bit of sensation in my feet.
  • The hand weakness has caused me to sprain both thumb joints. My physical therapist showed me how to use athletic tape to stabilize them today.
  • Very difficult to hold a pen pen to write, typing on a laptop etc. Don't get me started on opening pill bottles and jars or starting a new roll of scotch tape.
  • Foot drop in the right foot, which is difficulty lifting the foot up towards the shin. Looking into special AFO (prosthetic brace) to help.


  • The fatigue has gotten better, but does still require a lot of rest or naps daily depending on how much I exert myself. When the fatigue hits, I go down quickly.
  • My tremors are no longer a daily visitor. It was strongest in my right hand, head and was starting in the left hand when I went to Chicago. 
  • Hormone changes have caused insomnia. (I went from 10hr to 3 hr) I'm now averaging 5-6 hours of sleep....still needs improvement.
  • Less nerve pain in feet allows for walking/standing for longer periods of time more often (not everyday). I can comfortably walk 1.1 miles around the block without crying.....yay! The pain is still present, especially if I overdue it. 
  • Hair is growing in, 3 weeks sooner than expected.......:)
* I'm so grateful for this procedure. I haven't had an IVIG infusion since mid-July. I can confidently say that my disease has stopped actively attacking my body. Hooray!

Other Misc. updates:

  • The asthma (from last week) is still with me. Using my inhaler twice a day, no improvement.
  • Will be scheduling in-facility outpatient physical therapy. While I wasn't able to find a therapy pool, I did locate a rehab that focuses on Nuero disorders

This weeks highlight:
Friday was a special day. The beau took some time off so we could have a fun day, pretending I am not a sickly recovering patient. He took me to the Berkeley Marina (pier unfortunately closed for repair), but we still got a great walk in along the bay. Weather was perfect and it was nice to be out doing "normal" things.

Thanks babe, this day was quite special. Thanks for not running for the hills when things got a bit  crazy.

Thanks Ola for letting me reschedule our visit to have this day.

Social Visits:

Many have offered to come visit and I have not confirmed a date or time. Please accept my apology for that. There are a few reasons for my avoidance to schedule:

  • My days are unpredictable and it causes me (wait for it) ........social anxiety. For those of you who know me socially, it's like saying that the sky is purple & clouds are green/orange striped.
  • I dislike and feel guilty when I cancel plans, and because I am a high cancel risk, I end up avoiding the planning altogether.
  • The visit may need to be cut short if I am overwhelmed with pain, fatigue etc. ..insert more guilt

Know that I want visitors more than you can imagine. If you are completely ok with last minute cancellations or coming all the way here for a potentially short visit, then bring it on.

Reflection & Gratitude
My spirits are getting better with each passing week (my impatience creates frustration). I'm learning to be patient with the physical limitations, while processing the emotional side.

I haven't really sat down to breathe since March 2014. It has been a whirlwind of crazy, lucky, sad, stressful, devastating and wonderful.

  • My grandfathers ailing health in Arizona (he passed in Nov.) - March 2014
  • Diagnosis May 2014
  • CIDP progression & IV treatment every few weeks July 2014 
  • Fears that I would have to take disability and quit my job
  • Possibility of needing a wheelchair in my near future
  • Falling in love
  • Application for treatment Jan 2015
  • Evaluation (Chicago) March 2015
  • Pre-testing (Chicago) May 2015
  • The procedure in Chicago July 2015
  • Home for recovery
I have also never taken this much time off work, not ever, since the age of 15 1/2, even through college.

All this reflection has created a large space of gratitude.Gratitude carries you quite far, even on the worst of days.

  • Learning how  amazing my friends are
  • Creating new bonds with my family
  • New friends (HSCT/CIDP community shout out)
  • Giving back as a mentor in the HSCT/CIDP community
  • Appreciating little things I took for granted, giving away what I don't need
  • Opportunities to educate and advocate
Advice I would give anyone going through a rough situation (health, family, workplace, financial etc):
  • It can always be worse
  • Focus on what you do have
  • Choose to be an advocate and fighter, not a victim
  • Thank those that support you, let go off those who do not and any anger toward them
  • Don't brew the "why me" anger

I have high hopes for the weeks ahead. Go out there any make your next week awesome too!

Monday, September 14, 2015

Day +42: Roller coasters and peach fuzz

I couldn't MAKE UP the events of the last week, it's rediculous to be honest. The good news is that I feel really great today so I will be focusing on that wonderful gift.

Early last week I had a fall while carrying in mail. I stepped into the house with my weak leg, and it decided that it was not interested in carrying my body weight. Down I went. No injuries, just quite a scare.

Later that same evening Duke got skunked. My whole house and my dog reeked. My lovely beau came over to help me bathe the poor dog, and in doing so I fell again. Only this time, it was ungraceful, violent, and left marks. My knee, shoulder and forehead took the brunt of the fall. Head has healed, but I think the shoulder may get added to the PT workout list.

Luckily the next day I was able to get a ride (thanks Dad!) to my pet store that has a bathing station. Duke now smells more like a petunia than a wild critter I mostly associate with a cartoon when I was a child.

The whole week I was battling some breathing issues that started the previous Friday. My doctor called in an albuterol inhaler for this past weekend to see if it helped. Not so much. I am being referred to a pulminologist and they want to see me this week.

Every few years I experience a temporary (allergy or illness induced) asthma event. Typically after bronchitis, sinusitis or bad allergy season. However albuterol has always helped me, so this is a bit of a mystery. I'm wondering if the fire smoke in the air is a trigger. I just spent three weeks in a HEPA filter bubble at NorthWestern. Perhaps my lungs are not ready to go back to reality.

My hematologist said my labs have been excellent and my blood has shown a strong recovery. With that comes some small restriction lifts. I don't have to be so "bubble" focused, just cautious. Already sent a bolo out to some girlfriends to come pick me up and sit with me outside somewhere that isn't my house. I'm getting a wee bit stir crazy to be honest.

The beau and I did a toe test the other day. I now can feel the touch on 3 of my 5 toes on each foot. This is kinda a BIG deal. Not getting my hopes up, but hoping it sticks around. It really is quite helpful to feel your feet and toes. I still experience a lot of nerve pain and cramping in both feet, but Alpha Lipoic Acid and my homemade coconut oil/tea tree oil rub seem to be helping at night so I can sleep.

By mid week I also noticed peach fuzz on the noggin. My hair did grow fast before, and my hematologist said it would continue to grow fast. Sunday I noticed some long "ostrich hairs" that are growing past the peach fuzz. We shall see what is growing a month from now! Hoping for at least a 1/2 inch a month.


Knit  hat from my Auntie M......

Woke up today feeling good. I have been strict with my PT regimen and just added some modified Pilates. I can't do all the moves, but what I can accomplish really help with my balance and leg strength. I also got approval from Chicago to do rehab in a pool at a rehab facility. We can't do public pools or the ocean for a year I think. Walking laps and leg workouts in a pool alleviates two of my challenges: nerve pain in the feet and balance/falling. All the while getting stronger and building up my endurance. Unfortunately I cannot find a single pool rehab facility within 20 miles of me. If you know of one, let me know.

Received this gem of a card from my Product team at work.  I laugh every time I look at it. It's on the fridge, forever.


Scrabble is a frequent activity. This was my luck the other night. Really!? Ended up passing my turn to dump some letters.

Monday, September 7, 2015

Day +35: Improvement Adjacent & Joyful Spirits

These last two days have really been a positive change. Sunday I noticed decreased nerve pain in my feet and legs, resulting in far more productivity from me. I was able to walk my 1.1 mile lap without the cane (thanks to the company of Chad) and brisker than normal. It really lifted my spirits.....tenfold.

Monday (Happy Labor Day btw) was much the same, less pain. Pops took me to draw labs this morning and we even made a pit stop for some dog supplies. Fun Daddy and me day, even if it was brief. I was able to work on a couple other projects around the house. I'm looking forward to walking another mile tonight (legs willing) once it cools down (its 99F today!).
Healthy Nerve Myelin (green)
I visualize this at night to help them heal....lol

I didn't realize how much immobility impacted my spirit. I know from my transplant mentors that patience is critical, but it's much harder than I thought. I continue to do my stretching and physical therapy daily, in addition to eating well and ensuring that I am getting all the necessary vitamins and minerals to aid in healing.

My Celiac friendly cereal. Yes that is what it's called.

I'm joyful and hopeful that this week will be productive and full of healing. Perhaps there is something to having my sweet Duke back.....maybe my soul needed it. He is just as spoiled as ever but seems to be happy to have me home.


My Secret Santa is out there somewhere. When I was in Prentice Hospital, someone had ordered a Phil's Friends care package be delivered to me. If you aren't familiar with this organization, here is their website. http://philsfriends.org/

Whoever you are: THANK YOU. I wept when I got it. This is the most thoughtful organization for people being treated for cancer or inpatient having Chemo. I am now a lifelong supporter. If you are looking for a cancer foundation to support, I recommend this one. Their services directly impacts and benefits patients (via a care package and visit from two volunteers) and it makes their day. I had a hand crocheted blanket and skull cap in my package, and still receive "get well" cards (from kids) that are hand drawn. Are you kidding? My heart swells.

The eyebrows are slowly thinning day by day. Really wishing I had bought an eyebrow pencil during my Target adventure on Saturday. Hoping that they and the eyelashes hang on for the ride. My scalp has been really itchy and I noticed some very fine fuzz yesterday. No idea what it is, as I don't expect the hair to come back until sometime early to mid October. 

How I look

How I wish I looked
(Always thought Sinead was pretty)

The good news: the common response from those that I have been brave enough to show my noggin to has been : "wow you have a nice head/skull" or "OMG you look just like your brother James"....so there's that. I'll take both as a compliment :) Amy and I often exchange Sinead O'Connor lyrics via text and I crack up.

Hope you all had a lovely long weekend with family and friends or just relaxing. Thanks for all the texts, emails, cards, errand running, calls. It really does make the time pass and keep me from my personal pity parties on hard days. Its  so important to have a support system and a lot of love behind you.

I enjoy paying it forward and providing support to those who have none at home via my support group pages online. These groups saved my soul when I was trying to sort things out pre and post diagnosis. It is also what led me to learn about this treatment. I still get support in my post-transplant group which really helps one learn what is normal and what to expect.

Signing off for the night. One challenge that remains pretty severe is typing, due to numbness and weakness in my right hand....and said hand is going on strike as we speak. So much for typing 90 wpm these days.

Mad Love,