Day +137: Prepare to re-enter the Matrix

Days home: 128

The days and nights are quite colder, there are twinkle lights everywhere I turn. Holiday music plays at every gas station and photo cards with friendly faces are pouring in. What a season to be healthy and thankful.

If I told you that recovery was easy I would be lying. In all honesty it's been much harder than the transplant itself, and harder than even I expected. What I can tell you is that there is marked improvement from when I first got home, and that I am hopeful it will continue. We were never promised any improvement in symptom or ability, only the possibility of remission. We were told that improvements are a gift if we got it....so I say blessings often for more gifts.

The Matrix
The matrix is my pre-transplant life. A full time job that I love that consumed the majority of hours in my weeks......is on the horizon. On December 30th my hematologist will submit my return to work date for January. It will be an adjustment, but one I think is good for my brain. I was born to analyze, create, fix and collaborate. Socialization is a huge part of my personality as well. A girl can only organize so many closets and shelves of the home in a lifetime.

 

I missed my hair

Nerves have a mind of their own
There is still obvious damage in the right hand and weakness in the right leg and foot. Typing, writing, turning a key, holding a cup, grasping anything, picking up things, zippers, buttons, tying shoes.....all remain a challenge. I have tools to work around it in the event it never heals. I still struggle with patience with myself for being slow as molasses when using that hand. The  left side is about as close to normal as it will get.

Blood clots
The original one is still there, still causing me pain, and apparently not going anywhere. Even after an aspirin treatment he hasn't shrunk and has a new clot friend hanging out with him to keep him company. Not sure what is done in cases like this, but the Dr. is keeping an eye on it.

Tummy troubles
The stomach issues continue, with more bouts of the ER level stomach spasms. I see an upper GI doc later this month to discuss possible causes. There is concern that it could be my gallbladder, but I really need it not to be. That has the potential to require surgery.

Overall
Energy is up, stamina is up, attitude is up, appetite is up. Lots of positive changes that are a huge improvement over September. I am grateful that I had this time to heal and regroup.

Impacts from chemo can last up to 2 years.....joint pain, fatigue, muscle stiffness, decreased dexterity, hair loss (I'm losing the eyelashes and brows a second time as we speak), brain fog, short term memory loss, stomach issues, headaches....and on. It will be an adjustment to work through, especially once back at the office. My hope is that the time will go by faster and a year will be up before I know it, having been so busy with work and all.

Checkups
I will head back to Chicago in February or March for my six mo the follow up. This testing will determine if I am in remission. It's an exciting concept.....but will be great to have in writing!

Thank you
I have said it before but I truly mean it. I am so grateful for the support that has carried me through. Texts, cards, emails, calls, Skype chats, video messages.......so many smiles were created. You have no idea how dark some days were, and it was your kindness that brought a smile on those days. So THANK YOU for your kindness, thoughtfulness, humor, giving, charity, company, creativity.......from the bottom of my heart.

Happy Holidays & New Year
Whatever you celebrate, whomever you celebrate with and wherever you may be celebrating: have a wonderful Holiday Season and an even better (and safe)  New Year.   May 2016 be filled with love, laughter and good health for you and yours.

spoiler alert, if your hasn't come yet!

May your spirit be Merry & Bright,
Steph

Day +112: Neuro, Nerves & Stubborn Clots

Neuro

Since my last post I had a chance to meet with my Neurologist. I didn't inform him or even ask him his opinion of HSCT before I left, as most Neurologists are against it. The decision was mine and didn't want the bad blood with him. Well, he was amazingly supportive. In his own words "so effectively putting out the fire rather than splashing water on it once in a while?"

• The good news: my sensory and strength scores on the left hand and foot had improved. A few scores on the right improved, but not all of them. He is supporting me however he can from this point on.
• The less than good but not all bad news: the nerve damage in my right hand is severe. He said to prepare like it will never improve, with the hope that it will over time (we are talking years).

One thing he is helping with is weaning off the prednisone. After my last post I had a terribly rough week that landed me in the doctors office. Weaning off prednisone is a tricky task, and my latest dose reduction proved too large. Experienced a form of Adrenal Insufficiency. So, my neuro order low dose pills to help me wean slower to prevent that for happening again.

Some symptoms of Adrenal insufficiency (which can lead to Adrenal crisis): weakness, profound fatigue, dehydration, hypoglycemia, low blood pressure

Nerves

Occupational therapy is a wonderful gift for me. I didn't realize pre-transplant how much nerve damage there was in my hand. It is significant. The simplest tasks are very hard for me. Therapist and I are working on preparing me for work (writing, typing, holding objects, fine motor skills). I have a bunch of new tools from what I have learned from him.

Pen foam, to thicken pens so I can hold them

Zipper and button tools

Soft Thumb splints - now that my joints have healed some

Hand made tools for pressing my car key fob buttons and unhooking the seat belt

Special devices to open bottle caps

(similar to the tools that osteo/rheumatoid arthritis patients need)

Those that have come to visit are surprised, as it doesn't look like I am struggling at all. Once they watched closely they saw how slowly I do things. 

Therapist has me playing texture games in bowls of rice, digging for random objects (dice, paperclip, walnut) so that I can retrain my brain to understand the broken messages it gets from my hand. I cannot feel 85% of what I touch, but I can teach my brain anew language. How cool is that? It too will take time.

As long as this damage stays stable and doesn't get worse, I am hopeful. It is very limiting.

Stubborn Clots

While visiting the doctor, we did a second ultrasound of my arm with the blood clot. It has been bothering me again, but in a different spot. My hope was that my body started to break it down and it moved. Nope. Original gangster is still there, hasn't decreased in size, and now he has a new friend, clot gangster #2.

Enter baby aspirin regimen, and doubling up on my GI meds to prevent more ER visits from GI issues. Oh for joy!

Since I was able to wean off one of my medications (gabapentin), used for nerve pain, I will take my baby aspirin with a smile.

Roller coaster continues

Days remain unpredictable. I will have several good days, followed by one or many rough days. Nerve pain, joint pain and stiffness, muscle spasms, fatigue (crippling level) all seem to come and go as they please. The hot flashes (chemo-induced temporary menopause) are not fun either. One second I'm freezing and the next I'm bright red and fanning myself.

Still have not needed IVIG since July 16. What a positive and wonderful improvement. Currently trying to coordinate with Chicago on my 6 month follow up in February or March, depending on their schedule.

I still have pity-party days, I just choose not to stay in that place for long. On one particularly long day, my pop took me to the grocery store and I bought myself flowers to cheer myself up. Its a matter of how you choose to cope.

Getting back to it

As of today I'm scheduled to return to work in January. So, in the next 8 weeks, I am hopeful that some issues will resolve or lessen by then. Until then I am sticking with my daily rituals of stretching and exercise.

Dyed one of my (much too blonde) wigs a nice brunette.

brunette!

My new foot brace is helping me walk with more speed and better balance, as we try to wean me off the cane. It is comfortable because its outside the shoe. I am so thankful to Francois and his team: www.turbomedorthotics.com

Happy Thanksgiving

Be thankful this week. No matter what for. I know that I have a lot to be thankful for: Health, a roof over my head, a job, nice weather, amazing friends, my wonderful beau, kindness of a complete stranger today, my family...really been missing my brothers of late. 

So much goes on in the world that we can't control. Try to be thankful for the little things every day. I promise its good for the soul.

thankful for my fireplace when its 44F

Day +93: Follow the yellow brick road....to wellness

Days home: 82

Appointments Galore
The next several weeks are riddled with doctors appointments: PT, OT, Nuero, Chirop., Hematology, Plumonary, Primary. The day's fill up quickly. PT and OT at 2x per week.


Medical & Basic Math
My Neuro doesn't know I did this. So that appt. will either go really well, or really poorly. Best case is to get his support by showing up in remission. Considering the ($) thousands he loses when a patient is no longer being medicated and treated with $22k infusions, it depends on his priorities.

** Here's some math for the day: My transplant has paid for itself.  In 4 months.
I haven't had infusions since July 16. Every two weeks at $22k per infusion, cost savings = $176k
Cost of my transplant (~$165k). This is how we lower the cost of health care.

How I would LOVE to sit in a room with the executives of every major health coverage company (that has denied this treatment) to discuss simple math. Thank you Anthem BCBS of Ohio for "getting" it and being so wonderful to me!

Oops
Last week I had another visit to the ER for the same severe and sudden stomach issues I had back in August. This time the ER doc suggested that perhaps this isn't a virus at all, but upper GI spasms. Referral to GI doctor was recommended. Could be from chemo, antibiotics, no good flora in belly....so many things. For the last week, I've  been taking digestive enzymes to help break down food and eating yogurt to keep my stomach less stressed.

Therapy

PT and OT are going well, albeit challenging. OT is teaching me how to do things without thumbs (while we wait for joints to heal from continuous sprains). They made me joint splints to make sure they aren't moving. It's comical to watch me, surely. PT is teaching me to walk sans cane, for long distance, around objects/obstacles which terrifies me. The goal is to teach me to trust my balance and strength now that I am building strength back up.

Using mugs w/out thumbs

Thumb splints

Fatigue is still a huge issue for me. As is right foot strength and both basic and fine motor use of my right hand. There are signs that the nerves in my hand are improving, it's just a very slow process. If a tortoise married molasses....their baby would be the healing process. :)

 

In the morning, there is 20-30 minutes of stretching my right leg, hip, arm and hand.This is just to be able to walk, hold things, lift an arm, reach, bend etc.

My OT explained that when nerve damage is present in an appendage or limb, the bodies reaction is to flex it. It takes less energy to flex than to extend them straight against resistance. The tension on the right side (leg and hand) is indicative of nerve damage and a sign that it is much worse on that side.

This is my hand at rest. Ring and pinky fingers are always in flexion. Most damage and weakness is in those two. When I got home, this hand would flex tightly into a fist and I would have to peel my fingers back and stretch them to stay straight. So this is progress!

Exercise

My laps around the block are helping me with cardio, foot drop practice, but I max out at 3 laps at a time (1.1 mi). I would like to work up to doing that 2x a day, but won't walk alone without the cane. I usually wait for Tracey or Chad to walk with me after work. I have the bike at home, but it doesn't work the balance and foot drop muscles.

My FitBit keeps me on point (except when i forget to wear it) and the Fitstar app, which offers body resistance training that I can modify at home...no equipment needed

Eyelashes are critical to my pysche

Hair, eyelashes.....all moving back in. Hooray!

Sept. 28

Oct. 31

Happy Halloween!
Halloween is one of my favorite holidays. I had help to decorate the porch.
I missed Halloween last year due to illness following my infusion, but didn't want to miss it again this year. It came out pretty nice! Hope you all had a happy, fun and safe one as well.

motion sensor ghouls & skeletons, fog machine, lightening/thunder lights

I was a minion!

Work 

I will discuss return to work with my hematologist and primary this week. I was in such bad shape when I got home, I thought it might be spring. January is looking more promising. (I do have to take off a week in February to go back to Chicago for my 6 month follow up). 

Interested to hear hematologists opinion, as she has overseen hundreds of transplants in her career. She was clear that she doesn't send anyone back until they can give very close to the effort they gave pre-transplant. Her logic is that if you go back too early, you end up back on leave and it sets back the healing process. My biggest concerns for a work scenario (as of today) are fatigue, driving in 40 min of traffic (response times), writing and typing. But in two more months, who knows! 

Gratitude  

The change from day 30 to day 60 to day 90 is noticeable, promising, uplifting and wonderful. Having just come out of a 10 day "rut" I am conscience of, and grateful for, the good days.

I still struggle to do simple things:

• put on/tie shoes
• open a ziploc bag
• take a utensil out of the drawer
• buttons/zippers
• hold a mug
• taking out the trash
• folding laundry
• type
• make the bed

Anything that involves the thumbs has to be modified for me. Pay attention to how often you use your thumbs. Give your thumbs a good massage and a kiss tonight and thank them for being healthy.

Improvements In Progress:

• Learning to walk around obstacles without a cane
• My footdrop muscles are getting stronger
• My labs look to be normalizing the last 4 wks (Immune system in safe ranges)
• Consistently walked over 5k steps a day for three weeks. 
• New goal is 7.5k (includes stationary bike)
• getting physical tools to help with zipper, writing, etc from OT

My friends and family keep me laughing and joyful and grateful.

Visits 

Skype is the best invention ever. 

I'm grateful for the cards, rides, visits, Skype session, texts and calls. My friends are solid. Thanks for making me laugh on the bad days! 

My father has been the world's best Uber driver! I have been trying to give him a break so he can actually live and enjoy his retired life! Thanks Ola for filling in!

Visitation is something I am comfortable with now as long as you or your spouse/child have not been ill recently (10 days). My last three visitors had 1-2 hr travel times, (each way!) -its humbling.

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For now following the yellow brick road to wellness: rest, exercise, therapy, stretches, nutrition, gratitude & patience. 

(I'm not doing well at all with that last one, but those of you who know me well shouldn't be surprised!)

Have a great week!

P.S. Happy Birthday to my beautiful niece Alexis who turns 10 today! Our funny, smart, performer (dances and sings). She won a Halloween dance contest this year......xoxoxo

Day +77: Status Quo & Hand Puddy

Days home: 66

The changes week to week aren't as significant as they were in the beginning.The blog updates may spread out to every two or three weeks. I think there is a way to "follow" the blog so you get emailed when there are changes, but I'm not sure how.

Last week was excited because I started OT. My therapist confirmed I have 50% the strength, speed and use of my right hand compared to normal. My left hand is mildly impaired, but is closer to 85-90% of normal.  I got green hand Puddy!!! Lots of exercises for my hands. Looking forward to seeing changes. Although he does think the majority of this is nerve damage, and will just take time. But our main goal is to get me holding a pen, writing and typing closer to normal.

I have gotten more "steps" in on a daily basis - since last Thursday -  than the entire time I have been home. I count my bike riding in there as well (strap it to my shoe). It shows an increase in stamina overall.  I still nap daily. And today, I think as a result of said steps, I have an abundance of pain in my legs. An evening stroll nets 1.1 miles and about 3,000 steps...plus this view.....

The beau took me on a drive to Half Moon Bay Saturday and we decided to stop by the Art & Pumpkin Festival. Free admission and handicapped parking! It's fairly open and not so crowded (compared to some of our local art/wine festivals), so it was easy to stay away from dense crowds. We were only there a couple hours so between grabbing lunch and peeking at the art booths, it wasn't overly taxing. There were areas to sit and listen to one of several musicians so plenty of places to rest as well. The sunset on the way home was beautiful.

I'm becoming a crock pot pro. I have made some extraordinary meals in my crock pot.....and it's now and addiction. Dinner made easy!!! Lol. Here is one of my faves.
http://www.gimmesomeoven.com/5-ingredient-easy-white-chicken-chili-recipe/

I added baby bok choy and a ton of spices. When served put grated cheese and avocado on top. Yum!

There has been a lot of positive feedback about my last post on depression. Just as a disclaimer, for those that I worried, I am not in a deep depression. In the 77 days, maybe 7 of them have been "blue". It was something that I wanted to address for those in my support groups, as well as for my friends to
be aware of. Having the support system I have, it's hard to stay down for long. I  have some awesome mentors who I can reach out to, they have been through transplant, and can snap me out of a pity party in a hot minute. It's  good to discuss as I think it's not acceptable for depression to ever be a taboo topic.

I'm glad to get on with outpatient therapy. It wipes me out because its hard, but I love it. I expect that 2x a week I will come home to a 3 hour nap.

Overall things are improving. It may be very slow, but i can tell an obvious change from 30 days ago.
Things you shouldn't take for granted if you are able bodied and these are simple tasks:

• Taking a fork/spoon out of the utensil drawer
• Un-twisting that twist tie that comes on just about everything
• Opening a water bottle or soup stock with the round twist off top
• Opening a car door with a pull up/out handle
• Opening a house door (first with the key and then pressing down the leer)
• Zippers, bottons or hooks....of any kind!
• holding a coffee/tea cup from the handle
• carrying anything, no matter how light, with one hand
• pulling up the sheets when you get chilly
• putting on or taking off socks
• tying your shoes

These are struggles for me. Sometimes I'm so weak I have to wait until someone gets home. Sometimes i find the pliers that help. It's humbling reverting back to the skills of a 5 year old. So my friends....enjoy these simple mundane tasks. You have no idea how you will miss them when you can't.

have a great week!

Day +70: Riding the waves & Sadness is ok

Days home: 59

I have listed the improvements and challenges (continued or new) below. The improvements are tiny, yet monumental. Some challenges come and go..some days better than others, but still an overall struggle. Hence, foot nerve pain is in both.

Improvements:

• Nerve pain in feet
• Strength in legs
• Write more like an 8 yr old  vs. a 5 yr old 
• Hair growth - eyebrows filled back in, eyelashes are trying, and I am filling in on top
• Took 4k or more steps per day at least 3x a week (I am determined to get to 10k eventually)

Challenges:

• Nerve pain in feet
• Balance
• Right hand function
• Right drop foot
• Driving
• Energy
• Asthma (bummer)

This week I start weekly PT to do the real work. Last week was consult, eval and baseline setting. I will also need OT for my foot and hand. Being right hand dominant, I have two choices: learn to write/dominate with left hand OR try to improve right hand function. There is a lot of nerve damage in that hand.

I also meet up with the pulmonologist about the asthma. :( I still have breathing issues sans inhaler, so I may continue treatment for several months. There is still hope that it is allergy induced. In the last couple weeks, my allergies have pushed past the daily allergy meds I take. 

Being Sad

I wanted to discuss the emotional side of this journey because its not specific to my disease or my treatment. Depression is common in general. It's especially common for the chronically or terminally ill. Depression is one of the five stages of grief. 

Grief is brought on by any kind of loss: job, home, relationship, loved one, health, ability, etc. Its ok to experience this stage of grief. They key is to try not to stay there too long. 

I spent many days crying, screaming into a pillow, throwing things....and I still get upset over having to ask for help to open a bottled water, or dropping and shattering a bowl for the 2nd time that week. It's less and less, but it's there. In time I will get upset and less and less and I accept my "new normal". Acceptance being the final stage of grief.

The fascinating thing abut my journey is that I mourned my healthy self when I was diagnosed. Now I am partially mourning my ill self as it slowly disappears, but I also have new challenges and loss of ability that I have to reconcile. 

I come from a long line of mentally strong (insert stubborn) people, which in my case, is helpful. Before I lost my grandfather last year we discussed this treatment and the recovery. He didn't say "I will support whatever you decide" he said "you will do this, and you will get better".....as if he just knew. That is what I focus on when a meltdown presents itself.

Hair is a funny thing

Reflecting on my journey, there has also been a hair journey....thought I'd share this collage of my hair through it all. 

The pic just before the blue wig was taken yesterday. Kinda getting a hair line, but it's quite light.

Onwards and Upwards!

Hope you all have a great week. Be grateful, lean on a friend in hard times,cherish the simple things, cry/scream when you need too, thank your caregivers (if you have them), tell the people in your life you love them, laugh often, read a good book (I have recommendations!).

Day +63: Joint pain and awe-inspiring stories

Days home: 52 (as of Monday)

Challenges
This last weeks biggest hurdle was joint pain and balance. Every joint from my neck to my ankles hurt, like they had all been crushed or twisted out of sorts. I have heard of post chemo joint pain, didn't realize it can come on like the bone pain did. It has subsided some, which is nice of it.

The noggin
I pulled out the blond wig again, determined to make it looks somewhat decent for an outing. I think I accomplished it. Just needed some curls.....

Chad and I went out to dinner. I had salmon. And polenta. And hair (albeit fake). It was so nice to feel like I was part of society again. Hooray for celebrating my 60 days illness free! (Minus the brief stay in the ER that one time, and the random asthma issue LOL). However I can say no major infections or fever. Thanks to my dear friends who although wanted to follow through, on a few occasions cancelled plans due to sick kiddos at home.

Blue is still a fave and is fun to wear. I'm normally just in a beanie

PT & Labs
Outpatient PT starts Wednesday. I ha e a feeling it's going to be torture, and yet I am looking forward to it. I have been good about doing my balance exercises from my in-home therapist. However balance is still a big challenge. Also have thrown in an intense core workout to assist with balance. Completed week one, hoping to see some impact in the weeks ahead. Most aqua therapy pools in the county leverage public gym pools which are off limits, so it's just physical therapy .....but anything will help.

Took labs today. I now go every two weeks. So far numbers have been good. There can be a delayed drop in WBC following Rituxan (chemo), so I anxiously await my results to see if I need to go back into "bubble mode"....but so far so good.

In Awe
Today I am giving a shout out to a girl who is awe inspiring. I met her mother through our support group. They are both in the super hero league. Her name is Madalyn and she heads to Chicago this week for this treatment. She is a youngin' of only 18 with a very rare auto immune disease called AAG. This attacks the receptors of autonomic ganglia in the autoimmune system. It's rare, complex and both the disease and treatment make her very ill. This girl has been through hell and back and yet is always smiling. If HSCT provides remission for this disease it's a major medical milestone. Her mother started a non-profit to help families navigate the medical system when a child has a rare disorder.

If you have an extra minute, please go to the link below and vote for "It Takes Guts":
Oh, and tell a friend. Please and thank you.

www.communitybizbank.com/CBB10for10.htm

This grant money could go to amazing awareness and education campaigns in 2016.

You can learn more about AAG here: http://www.rarediseasesnetwork.org/ardcrc/patients/learnmore/AAG/

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Got this card from my work team last week. the irony is that our mascot is a turtle and those are foundation colors.....

Keep on keeping on. Practice patience. Let it be. (My latest head chants). There are chores I still find mindless, boring and dreadful. Yet I am grateful that little by little I have the energy/strength/stamina to do them. Someone posted this the other day, and it really spoke to me.

Hope you are all well. Have a great week!!

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!