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
http://www.stemcell-immunotherapy.com/

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.

Improvements:

• 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!

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.

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,
Steph

Day +28: Progress, Downfalls & Gratitude

GRATITUDE
It's so great to be home.

While sitting around waiting to heal isn't necessarily my cup of tea, I'm so happy to be home. Sleeping in my own bed, listening to the birds fight over seeds in the backyard , having friends do drop offs and chat outside for a few minutes......it makes me happy.

We had another loss in our CIDP community this week. It's the 3rd passing in 9 mo. that I know of. This may come as a shock to many reading this. We have a disease that attacks our nervous system. At times patients have attacks on more than just peripheral nerves. Vagus nerve: control heart rate and stomach digestion. The diaghram: run by nerves, controls breathing. There is also damage from the medications we are prescribed (steroids, pain meds, anti depressants, IVIG). They can damage our kidneys, liver, brain, cause diabetes....just to name a few. It's breaking my heart to watch these diseases taking away good people who were already suffering, struggling, exaughsted. Please say a prayer for her family and friends.

I feel grateful to have been selected to be part of this trial in an attempt or to halt my CIDP. My hope is that recovery will come with the "added bonus" of nerves healing the damage already done to my body. I did go into this knowing that I may suffer with some or all of the damage for the rest of my life, just hoping that my body is in a healing mood. The goal of the treatment is to halt the disease, everything else is a bonus and blessing.

PROGRESS
This past week was better for me strength wise. While I am still numb, fatigued and have nerve pain,
I can tell my strength is better in my PT. The best thing I can do is keep up with my exercise, eat right
and get plenty of rest.

My new physical therapist comes Wednesday to design a PT plan. I have been able to ride 15-25 minutes at a time on the bike. When I got home, 5 minutes was a struggle. It leaves me sore and fatigued the next day, but it's great progress. I am also up to 0.8 mile laps around the block. Hoping to get to 1.2 or more miles in a day.

My white blood cells were back in normal ranges in my labs this week (5.2) but were high when I was in the ER. I redrew labs today to make sure they have come back down. More on that next week.

DOWNFALLS
Had a little setback, with a trip to the ER on Friday morning (by morning I mean 3am). At the advice of the Chicago team, I needed to get checked for possible gallbladder or pancreas issues due to severe abdominal pain and becoming very ill very suddenly. Was home by 8 am and all is well. They think I
had some sort of stomach virus. It hasn't returned so that is the hope anyway. Thanks to Chad and my father for being my ER taxis.

DUKE IS HOME

Decided to test out having Duke home. He was a little excited. Enjoy the pics and the video.....forgive my super annoying voice on the video. It's so good to have him home.













 

Retried to upload video........hoping it works

Day +21: Laps, Naps & Disinfectant

Now that I'm home I will try to do weekly updates.

I wanted to start this post off by putting things into perspective.
Released from hospital: 12 days ago
Been home: 9 days

So I'm still freshly out of a very intense chemo treatment to stop my autoimmune disease. As I was taught by the transplant support group, this recovery is not linear. It is not similar to having surgery and seeing gradual improvements every day. A very few lucky individuals have experienced this, but it is not the norm.

The norm is: lots of ups and downs, good days and bad days, progress and regression. One day I may complete all my PT and exercises, have good energy/appetite and the next day I sleep 15 hours of the day and experience severe nerve pain. I have destroyed my faulty immune system and asked it to rebuild, this is not an easy task.

The first week has been harder than I anticipated. While I knew of the possibility of old symptoms coming back I wasn't expecting all of them my first week home. Numbness, weakness and nerve pain decided to come back with a vengeance. I am going to request a half dose of IVIG next week.

The clot pain has gotten much better. They did say it can take the body up to four weeks for the body to dissolve a clot, and we are just about there.

My brother was here last week to help out, thank goodness. This made my transition home so much easier. He accompanied me on my daily walks around the block in addition to doing everything else under the sun for me: laundry, meals, dishes, unpacking, making the bed, trash duty.

The regimen here is strict. Sponges in the dishwasher each night, all hand towels rotated daily. Daily Lysol wipe down of counters and all things fingers touch. I cannot take out the trash. My diet is a neutropenic diet, which is strict very different from my pre-transplant diet (Paleo = lots of meat and fresh veggies). Also, I wash my hands after I do just about anything, which leads to needing a lot of lotion-so dry! Shout out to Eleni on the Coconut Oil recommendation!

My sweet boy Duke is not yet home either do to the strict rules around pets. I hope to have him home in a week or so as I get stronger and have more energy. I haven't seen my pup since July 9. Thank you Jodie and Ken for giving him a loving home for the time being.

Sweet Duke





I have to get labs weekly for the first month. We went last Monday very early before the crowds. Most labs came back in good ranges, but they will likely drop quite severely in today's labs. Once the numbers drop I have to be very careful not to catch infection. Sepsis/septic shock is a real danger for us transplant patients. It is why I am a soap, hand sanitizer, gloves, Lysol wipe, face mask ninja these days.

Germs = the enemy!




I'm riding the exercise bike daily, walking laps around the block and doing the take home PT I was given from the hospital. Naps are a regular thing, anywhere from 2-4 hours each day. If I happen to sleep really well a particular night I can get away with a one hour nap.

A home health nurse will come to assess me and assign a physical therapist to begin arriving. I am excited about this. I am a huge advocate for PT.

I'm practicing patience which is very difficult for me. Those that know me know I want to be everywhere and doing everything on my own. It is not to be right now.

I made a promise to myself to see this through and not take a day for granted if I was given this treatment. So while it may be frustrating, I will stick to my schedule and work hard to get my strength back, as much as my body will let me.

Thanks for the calls, texts, emails, dinner drops offs, cards....they really do brighten my day. I may not be up for chatting most days.....but it doesn't mean your message didn't make me smile. I have an amazing support group of people cheering me on.....it really DOES push me on the days I tell myself "I don't wanna!".... (yes three year old Steph has visited).

my reminder of my supporters!





VISITS: I will likely be up for visitors in the coming weeks. Just please understand the rules for visitation:
1. You have not  been near anyone with or had yourself a cough, cold or infection in the last 30 days.
2.  You will be asked to wear a mask and use hand sanitizer upon entering.
3.  There will be no hugs or handshakes hello.

 It is very important that I not catch an infection in the first three months.

Considering timing of release I'd say I'm doing pretty good and things seems to be going as expected.

Xoxo

Day +14: Ultrasounds and fevers

I mentioned earlier in the blog that the arm that had the original PICC line was swollen and causing me some pain after the PICC came out. It hasn't gotten any better since it started roughly nine days ago. At the encourgement of a friend called my doctor who squeezed me in today to schedule an ultrasound of the arm.

Turns out the is a superficial clot right where the swelling is. They explained that superficial clots don't go anywhere and don't become the more dangerous DVT type clots. Over time the body will break it down. My doctor talked to my NP in Chicago and she didn't see a need to treat it. I had labs drawn today so if my platelets are high enough my primary said she might recommend baby aspirin just to help the process of breaking it down.

I also discovered while I was there that I had a fever of 99.6. I had just taken my temperature before we left and didn't have a fever. It's good to know so that I can stay on top of it.

My doctor is also putting in a referral for a home care nurse to come by perhaps once or twice a week to check on me. I like this idea a lot. After my brother leaves this week I don't have round the clock daytime help lined up.

Between 7am labs and the three hour doctors appointment/ultrasound appointment it definitely time for a nap.

I'm grateful that I got an answer to my pain, that it's not a dangerous diagnosis and that my primary doctor is so willing to be on top of anything I need.

Here's a little something to brighten your day......everyone loves a cute puppy. So here is a picture of a random adorable French bulldog. :)

Until next time!

Day +11: One more sleep until home

I was discharged Wednesday evening. Have been resting in the hotel for a few days. I'm headed home Saturday. Home Sweet Home.

The overflow items have been shipped home. We start to pack the luggage for the airport this evening. Carefully packing the carry on bag with all the post-HSCT necessities. Can you say hand santizer?

We have been watching either the Blue Angels or the Brietling Jet team practice from our hotel room. Chicago has their annual air & water show here tomorrow.

It's bittersweet leaving Chicago. I adore this city, it has given me a new lease on life. That being said, I miss my home, my love, my dog, my friends and my family. I'm hoping we have an on-time smooth flight home.

Once back I begin the roller coaster of healing. There isn't a gradual wellness that comes post HSCT. I have been told to expect the days that feel like a relapse. Lots of patience and calm will be required while I let my body do its thing.

My baby brother comes in this weekend to spend my first week at home with me. We have blood labs and physical therapy appointments. It will be reassuring to have someone with me that first week while I gauge my strength and stamina.

Thanks again for all the love, encouragement and support. While the procedure is behind me there is a lot of work left in recovery. I will be working hard and making you proud.