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??

Days +5 and +6: Recovery & Rashes

Day + 5 (Saturday)

The PICC line was replaced and a new double lumen in the left arm. Dr. Burt thinks the triple lumen was too big and after 11 days just really aggravated the nerve. I'm grateful that it lasted 11 days to begin with.

The new PICC didn't exactly go in smoothly. There was a lot of discomfort when it went in, and an adjustment had to be made after review of the X-ray. It's still a little sore. The right arm is still a LOT of sore, just waiting for it to heal

We switched the daily antibiotic today. I started Cefepime via IV on day 0. On day +2 I developed a rash on my upper back. Originally dr. Burt thought it was folliculitis from wearing the tight tanks with the built in bras. But after three days of topical antibiotics and itch cream, it only got worse and spread to the stomach, thighs etc. Since there is some concern that it is a Cefepime allergy, I am now taking Zosyn via IV. Zosyn runs 4 hours, vs. the 40 minutes for the other. My only hope is that we don't wear out this vein from longer infusions. If this PICC starts to bother me, it's another jugular cath for me.

Otherwise the day was calm. Folks came by with lunch and to visit. Dad walked some laps with me. I got addicted to some show called Catastrophe, Amazon prime only had season one as a teaser.

Today is the day I stopped caring that there is no hair on my head. Didn't wear a cap all day or to bed. How liberating it has been. My mom said I look even more like my little brother now, which is very true. He started shaving his head in his 20's after serving in the Marine Corps. Maybe some bald twin pictures are in order.

Every Saturday at 10:15pm there is a fireworks show.  They were far more amazing than this, my camera has quite a delay.

Day +6  (Sunday)

Today has been a good day. I have lots of energy. My appetite is good. I didn't need fluids or nauseau meds this morning.

Todays counts show I'm still neutropenic. Waiting for WBC to be 1.0 or higher for discharge.

In theory, if all goes well and I am discharged next week, I will be home in 6 days. Last night I dreamt that I went to work my first two days home, forgetting that I was on medical leave. I highly doubt that will happen!

I am on day 3 of Neupogen shots. My bone pain during mobilization started early on day 3, so perhaps already being on a pain management schedule will lessen the bone pain as my stem cells start to engraft. I have noticed a bit of bone aggravation in my skull and spine today. Lots of rocking amd breathing as the next round of pain meds is due.

I've been encouraged with my energy and attitude today. Watched breakfast at Tiffanys with the folks, walked my second set of 6 laps with my dad.

As the day has progressed there are some bone aches: hips, legs, spine, jaw and skull. Lets hope engraftment is beginning and I am just days from discharge.

My friend Jodie comes tomorrow she is here through the finish line to bring me home. Yay!!!
--------------

I was thinking today about all of you.....the people that have helped me get through this. You don't quite know how helpful it is to get an encouraging word when you feel in the dumps and isolated. I find myself wanting to make you proud, so I push through.

One message that has stuck with me was from Rachelle: "encouraging humor: you've survived 100% of your worst days. You'll survive these too". She was another CIDP patient and she went home several weeks ago.

Thanks from the bottom of my heart for your kindness, encouragement and humor.

Days +3 and +4: digging deep for strength

Sorry that my daily posts have ceased. The last two days have been trying. The reason has been unconventional. When I received my IVIG treatments I suffered from phlebitis, a painful inflammation of the veins. This deep vein pain brings me to tears and typically renders that arm useless.

On day +3 (Thursday) phlebitis started in my PICC line. No position is comfortable, feels like my veins are spasming and someone is vice gripping a deep bruise. I had to ask for a strong narcotic to kill the pain and my arm seemed to settle for the day. After that the day included some ups and downs with blood pressure, dizziness and nausea. In general I just felt off. I'll, irritable, uncomfortable...a mix of just plain ick. I managed to get some laps in with OT using just my cane (I had reduced to a walker the last few days due to weakness) to practice balance and it went well. Parents came by with chicken Pho soup, I watched the minion movies to cheer myself up and I had a good rest for the night.

Day +4 (Friday) started out well, had some decent sleep. parents came by with the days laundry and helped me organize some things. Had another icky spell and low BP that required 2 hr of fluids. After that I felt better. More laps with OT and even better balance. Around 5pm it took a turn to the current situation. More phlebitis in the PICC. Allison came by to check on me to find me in tears. Unable to move my arm or find a comfortable position for it. Dr. Burt was called and the suggestion is to remove the PICC and place a new one on the opposite arm for the duration of my stay. This PICC held out 11 days, so the hope is that the new one will last the remaining 6 or so days without issue.

I will discuss with Dr. Burt in am as he placed the order to happen tomorrow. The only other alternative would be a scheduled around the clock  dilaudid drip, which would render me useless the next 6 days. I'm typing this entire post with my left index finger and am wiped. The steroid surf doesn't help with stress coping either so I have gone through way too much Kleenex in the last 80 min.

I'm grateful for no migraines today, no vomiting, increased balance and steadier gait when walking, a decent appetite and so far sleep has not been an issue. Just have to somehow overcome the one thing that brings me to my knees.

Hoping for a better day tomorrow.

Day +2 : Nuetropenic

It's official, I am neutropenic today. Vitals every four hours to watch for fevers.

More precaution on the hall laps and bike rides, I now have the added mask. Started to feel tingling in my fingers, only in the morning though. My right foot is still pretty numb and I think my plantar faciitis is acting up so I will be doing some stretching today.

 



I start Neupogen shots in two days to boost my blood counts. So I have asked to start taking Claritin daily, as the antihistamine helps with bone pain. I got it in my jaw and skull during mobilization and it was not fun.

The nurse said this is technically when the "catchup" nauseau kicks in.....so we will keep an eye on it. I have tried to do without the one nausea med that causes headaches (zofran) except on the bad bouts. And have tolerated half size doses of Ativan as needed.

Today has been a day of fatigue. Two very long naps and very little energy to sit up when I'm awake. So we added some fluids and are going to cut back on a med see if it helps.


There may be less updates over the next few days if there isn't much to report. It's a lot like Groundhog Day...and I'm not complaining. My current status quo suits me just fine.

Anytime in the next 6-9 days I can be discharged. Longer if my counts don't boost as they should. But I have a flight booked for the 15th home, so I'm crossing appendages, eyes etc.

 

Day +1: Fatigue and Infusions

My fatigue this morning was palpable. Needed to nurse to press the button on the bed to sit me up. So it was no surprise when labs showed low hemoglobin and low potassium. Both were ordered for infusion.

We still haven't don't IVIG, as my hands and feet haven't gotten worse....I even felt some tingling in my fingers today. And some of the numbness in my feet has dissipated in patches.  The nurse walked four laps with me in early evening When I finally had enough stamina.

Also got my final round of Rituxan to really kill any remaining cells. This is the "milder" chemo I had a reaction to on day -6. All transfused without incident, other than a queasy stomach.

There are sudden spells of fatigue with no warning that turn into an hour or two naps. Followed by energy where I catch up on my reading, responding to messages. Then the bouts of queasy that we try to get under control before it becomes nausea. The headache is my content dragon, but so far we have kept it at bay with Tylenol and excedrin rotation.

No real schedule as the days goes by, just depends on the hour and what my body wants to do at that scone. Last week I  took a nap from 2-4:30 pm. Today my nap was earlier in the morning. My day usually starts around 5am and ends around 9 pm..

Thank you blood donors

Nick left today and I cried for a solid half hour. Whether you know him or not, send a nice thought to the universe in his honor. What a guy. At my beckon call while I did chemo, my biggest cheerleader for the finish line, constant reminder of why this is all good, errands to trader joes, laundry runs, soup pickup at Saigon sister almost daily, corn bread muffin runs, my gluten free pancakes from trader joes heated every morning.... I miss him already,

Folks arrive tonight. Hoping for a few more days of mild while the body heals. Will be good to have someone here to get me my favorite soup everyday!!

Shouts outs:
Cards from my team at work and Esther
Care packages from Stacey and Karen




Definitely put a smile on my face.

Day 0: Got my stemmies back

The day started quiet and mild. A little extra time to sleep a shower unattached from IV. Dr. Burt and team poked their heads in and said "stemmies at 10" and briskly left.

Nick got me a corn muffin. There is a phenomenon for some where we taste creamed corn when they infuse them back. I liked his idea to stick with the corn theme.

At 10am the stem cell team, chaplain and Allison came in to start the proceedings. My stem cells were removed from freezing, and placed in a bath at human temperature to thaw within minutes. The chaplain prayed for me, my Brother all the friends and family that supported me and finally the stem cells that they bring healing.

They infused within 20 minutes with no incident. I was overcome with fatigue and took a nice long nap. Managed to walk some laps on the floor with a walker later in the day. Trying to work on strengthening my legs.

But in the late afternoon after dinner I was overcome with not feeling well, and under the weather feeling I couldn't shake. They gave me nauseau and headache meds, and Nick brought the saltines and ginger ale.

Will do my best to ride this out and get some sleep tonight, trying to distract myself with a good Avengers movie. I'm a fan of the Marvel comic characters, what can I say.

Goodnight for now.

Happy birthday immune system. ....go kick some CIDP ass. I will tolerate the physical implications while you make us well.

Day -1 : toward the healing phase

No more harsh chemo today, no more chemo flushing medication, IV fluids stopped. Just some rATG to further suppress the immune system. It's clearly working by the looks of these numbers.


What that translates to: fatigue. Those of us with CIDP know horrid fatigue anyway but this is even deeper. You need a nap after a shower, after a walk to the bathroom...everything just takes so much energy that one does not have.

The blood counts today:

CIDP knows it's being evicted and has decide to retaliate. My right hand is practically frozen, it's very numb. Writing is comical. Right foot feels like a wood log. Left side still has its standard numbness but the right side is really taking a hit. Hard to hold a toothbrush, phone, anything. I've asked dr. Burt to provide me IVIG tomorrow for my "birthday" (stem cell bday) so we will see if that un freezes my hand and returns some strength. In general these days  my legs are very weak and like to buckle on me.

Had a fun episode this morning, sitting up enjoying a movie, suddenly overcome with dizziness, dry heaves, and my skin felt like it was on fire. All vitals were fine, so we used fans, ice water, cold wet towels and some neck rubs....these nurses and aides are awesome. Dr. Burt was paged and said to give me some more fluids, All resolved after about 45 min.

Got a nice dose of benedryl to help relax me and I got a 1.5 hour nap. Yay!

Taking it easy today. Preparing for the big day tomorrow, there will be lots of pictures. Excited to get the stemmies in my body to start repairing.

The care here is amazing. I can't say enough good things. Dining on call is another story. Thank god for brothers who walk to trader joes or the Galter cafeteria and need I forget grub hub delivery!!

This morning's sunrise was unbelievable. The colors were amazing.

Day -2 : last heavy chemo day!

Its a beautiful Saturday morning here in Chicago and I completed my last mega dose of chemo (Cytoxan) and rATG today. Which is very emotional. I am over the hump of the intense fluids, steroids and flushing every 6 hours. When Nick fist-bumped me, it hit me.

The chemo is catching up with me. Less energy, weak, poor appetite and a headache. My hands and feet are severely numb and very weak. It has taken quite the effort to type this today. I managed to get on the exercise bike just once today to help with the fluid swelling in my feet.

Its a beautiful boat filled day on Lake Michigan.

Taking it easy and watching movies with my big brother. Seven psychopaths is highly recommended. It sounds bad but it's actually funny. Anchorman 2 had me laughing too. It was actually hard to laugh my body is so tired.

Good news is that the BP and heart issues all ruled out. they cut back on running Lasix and Ativan so close together sine they  both lower blood pressure and everything resolved. Dr. Burt came by today and said "you're doing good". So there's that.

Blood counts are dropping quickly as expected. I'm sure that plays into the fatigue.

Tomorrow I just have rATG (rabbit antibodies) to further suppress the immune system, so a quieter day.

My stem cell birthday is Monday, and I get IVIG as well, which I'm hoping might help boost strength and energy as it usually does.

Thanks for the  calls, emails and texts today. There was a lot of resting today that kept me from keeping up with it all.

More tomorrow.