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.

Day +9: Mission Complete

I was stirred from my sleep at 6:30 am being told my white blood cell count is 1.6. I have engrafted! My new immune system is building as we speak.

Last night was rough, but in a good way. My shin bones , skull and jaw were in a steady 6/10 pain scale with meds. When I woke up to the good news absolutely everything hurt. Legs, arms, sholders, spine and skull.  Not much sleep and I am ok with that.....this is a good pain. Engraftment hard at work.

We dont yet have the neutrophil number back yet, but that also needs to be high enough for me to leave. I'm also short of breath so I may get some blood to replenish my hemoglobin.

Whether I am discharged today or tomorrow doesn't much matter to me. What I do know is I wll be home Saturday, and that is all that matters.

My wonderful man sent this to me today. Quite fitting.

I took  this from another persons facebook wall......

Once more I find myself thanking all of you. You are my friends, family, and members of my support groups. I have made new friends through inheriting CIDP that I so adore. So many blessings came out of this curse that its hard to sit around and be a victim.

I stood. I fought. I won.

Love,

Steph

Day + 8: Engraftment Waiting Game

It's Tuesday, my day +8. At this point we just wait for an increase in the white blood cell count.

Yesterday (day +7) was a strange day. Had another dizzy spell. Typically it's from low blood pressure and I get fluids. This time when they took my blood pressure it was really high (141/91). I'm a low blood pressure person on an average day (90/70) so that was a bit frightful for me. The doctor isn't concerned. My body has gone through a lot, so it could just be a stress reaction. I am keeping an eye on it.

Jodie arrived yesterday and stays until I'm discharged. She helped me organize the room and finish some laundry. She got to try chicken Pho for the first time last night, she loved it. It's one of  my favorite things in the world to eat. There is a great Pho place very close to the hospital.




Counts this morning:










Labs are typically pulled around 3am. That way the doctors can put in orders for the day: potassium,
blood, steroids etc. The team pulled labs again in the afternoon today (4:30) to see if there is any
nudge in the white blood cell count. It gives them a better idea of when I might be discharged.

Current count is TLTC (too low to count). We may see them jump to 0.1 or 0.3 and then up from there. It's all a waiting game at this point.

My worst symptom today is a skull ache....most likely bone pain. They keep offering me migraine
meds, but if this were a migraine, I wouldn't be able to tolerate the light from my window and I'm
enjoying that just fine.

A really exciting update is my symptom improvements:
-hand tremors: gone
-head tremor: very seldom
-nerve pain in right leg: gone
-pain at the bottom of my feet after walking laps: gone
-limp: gone
-fatigue- tbd. I expect post transplant fatigue for a few months post.

My happy face:

Chad says I look like an emperor

The biggest symptom that remains and is actually worse than when I came in, is the numbness is my feet and calves. However, this can actually be a sign of healing. Time will tell for now, but we decided not to do any IVIG while I'm here. When I get home I will keep in touch with the team at Northwestern as well as my transplant nurse assigned by my insurance. They are willing to order IVIG once I'm home if I feel like I need that final dose to help with healing.

Afternoon lab results: DRUM ROLL PLEASE

White cells jumped to 0.2!!!!

This is good news! I'm engrafting!! Once that number hits 1.0 I'm outta here!!!
Can you tell I am excited??