Friday, July 31, 2015

Day -3: repeat yesterday and new digs!!

Today repeats the same schedule of the last two days.

I transferred to my new room on the 16th floor along with my stem cell family last night. Turns out it's the same room I had for mobilization (the first dose of chemo some weeks ago) same nurse today and same tech. They both remembered me, Chad and our conversations about San Francisco. I sadly, do not.

But it was nice to take out the decor now that I am in my permanent room.

My smile wall

More smile wall

Chemo has taken a toll on appetite. Weight is down (not complaining) but there are a few staples I know I can stomach.

Also was informed i am getting ivig Monday (my atem cell bday). Cidp is fighting back so I'm having issues with tremors and strength on my right side.
They want to.waitnuntil the chemo and rATG are through before they add another infusion.

In lieu of walking laps (I am a fall risk) I walk to family room and do 2 mi/16 min on the bike. Did  that twice  today which led to a 2.5 hr mid afternoon nap. Not a bad view from the bike.

By 8pm i was feeling wiped, decided to nap before the 11pm meds that make me pee out chemo for an hour. But then they came to do vitals and my bp is low and my hr is sporadic. So I wait instead for an ekg. I may end up with a halter hr monitor for a few days. Apprently chemo can cause this. Better safe than sorry.

Still going to attempt 80 min of shut eye before midnight meds. Then hopefully 3 hours of sleep tonight and another nap tomorrow. The weeks impact does seem to be fatigue for me. All I want to do is sleep.

Signing off for now.

Thursday, July 30, 2015

Day -4: chemo hump day

It's Thursday and I'm halfway through the chemo plan, or what im calling chemo hump day. If you haven't seen a "camel hump day commercial" I highly suggest you look it up on YouTube. I don't know why but it's the funniest thing ever to me. It means halfway through.

My blood count chart has started. This is where we track the dwindling of my immune system to eradicate CIDP and rebuild. At some point, numbers will be TLTC or too low to count. At that point, I get more Neupogen injections to reboot the cell production and get the number up. 

If hemoglobin and playlets drop too far, I will receive blood infusions. Most people in the program do this a couple of times.

So far good: high energy (steroids!), the migraines have subsided. My appetite is taking a turn. I can stomach my protein shakes, apple sauce, rice chex and Swedish fish. We will see if I can handle BBQ pulled pork tonight.

Im averaging about 4 hr of sleep per night. So i try to get 2 hr worth of nap time in during the day before steroids. Ther is a 3am blood draw, 5am ekg and 7am premeds, 9:30 am premeds and chemo at 10am.

The view is beautiful from floor 15. I will be moved to 16 this evening around 6:30pm, and was told its a nice room.

Im experiencing some severe right leg weakness and bad tremoring today. PT and OT came to see me. My balance is so bad that im offically a fall risk. Technically my ivig was due today so if I'm not better by tomorrow they may order a dose of ivig.

Otherwise just trecking along. It goes fast yet slow at the same time. Hard to articulate.

Day -5: Cytoxan and rATG (rabbit antibodies)

Wednesday is day one of four days of the same fluid schedule. And is it a doozy, try to stay with me here.

Protonix (antacid)
Maxalt (migraine)
Ativan (anxiety/nausea)
Zofran (nausea)
Aprepatent (nausea)
Mesna (bladder protection) -forgive the incorrect spelling of Mensa on previous post
rATG (immune suppresant) literally rabbit I'm part bunny! Fitting for someone born         on Easter Sunday
IV fluids (hydration)
Cytoxan (chemo)
Solumedrol (IV steroid)
Lasix (kidney flush) 6 bathroom trips per dose (3 doses a day)
Decadron (steroid/nausea)

No wonder my cheeks ar puffy as ever!!!!
As of 5pm all is well no issues.
Nick and I walked a half mile this afternoon
I did another half mile with my occupational therapist this morning
Tonight I want to get 5 mi in on the bike I the family room
Depends on how long you can take in the plastic gown and gloves we are required to wear. Sweaty!!

Shout outs:
-Ola for a selfie of baby Mak.....I love him so
-Erin for the video of her daughter singing
-Cards from rebecca and margie
-Kasia who sent me a care package with werthers and new head wraps!!!
Baby Mak

Relaxed during chemo

New head wrap

Hoping day -4 (today) runs as smooth. Xoxo

Wednesday, July 29, 2015

Day -6: Rituxan and B cells

Tuesdays chemo of the day is Rituxan. This chemo attacks wonky B cells in my body. The majority of chemo for the next 4 days is cytoxan (which targets T cells) but those of us with CIDP get rituxan on the front and back ends because we have both cell (T and B) involvement.

Typically the stem cell patients are on the 16th floor, mixed in with oncology patients. However it's a full house, so I am on the 15th floor until some beds open up. But I am required to be up there for stem cell and recovery (no later than Sunday).

Tuesday is a light day fluid wise. Just some tylenol and Benadryl to offset any possible reaction. Also some IV steroids, which might keep me up all night, since we started so late (4:30 pm CT) Then Rituxan.

The Rituxan and I got off on the wrong foot. About 75 minutes in, I had intense and sudden itching I my throat, ears and tongue. When I say intense I mean I wanted to pour acid down my throat to alleviate it. Reason # 453 why it's good to have someone here: I was going to wait about 8 minutes until vitals check to say anything, Nick said "push the button or I will". The nurse came in, a frenzy was started, drip stopped and Dr. Burt paged. Apparently this can lead to much more dangerous reactions.

I got more benedryl (loopy by this point) some steroids and a 30 min drip break. We started it back up very slow (a fourth of the normal drip speed) and all was ok. However we didn't wrap up the drip until around 11:30 pm. I'd like to think my lecture to my body saying "hey, jerk face, I thought I told you to play nice with Rituxan and cytoxan? We need them, they are medicine!". But that could also just Be my steroid ridden imagination.

Here is a little peek at the room and my organization skills.....nesting at its best. One thing this trip has taught me is how little one actually needs to get by. Can't wait to purge half of my belongings when I am up to it.

Readin material and inspirational gifts from friends

Garb to leave room for laps

Big windows with a bright city view

Wednesday is day -5.  The schedule is far more intense. Steroids, IV fluids, rATG (rabbit antibody), Mensa (organ protection), cytoxan (chemo), lasix (organ flush), nausea meds, headache meds, sleep aids....the list continues.

I will likely be silent on day -5 as there will be chaos......but who knows.

Have a great Wednesday

Monday, July 27, 2015

The final leg: the time has come

Reality hit today, hard. The last leg is here. The difficult part of the path.

The PICC line was placed in my upper arm today, that runs a line to my heart. It has three lumens for administering chemo and other fluids, medication as well as drawing labs when needed.

Tonight is my last outpatient day until I'm discharged for home. My future includes copious amounts of chemo (6 days), followed by recovery time (10 days) while we wait for my bone marrow to recover (a.k.a blood level come back into safe ranges).

The hair is officially shaved. The head covers have come out.

Nick and I thought it was fitting to spend my last night of freedom eating on an outdoor patio or terrace. The weather was stunning today, so we did just that. The Peninsula Hotel has a restaurant on a terrace that is beautiful.

Right now, nerves are all over the place. I cry, I laugh, I'm excited, I'm scared.
I'm packed and ready to show up at 7:30am.

My brother, with his unyielding support, is here, keeping all the ducks in a row. I'd like to publicly announce that he is the raddest person - as a brother, husband, father and friend. He really is. I'm so lucky to be his baby sister. We video chatted with his kids to show them bald auntie. Can't wait to be running around with them in the future.

As I type this the tears just flow. I cant explain the combination of gratitude, hope, anxiety and love that just keeps ebbing and flowing.

I could not have gotten through the first phase without Chad, Amy, Dana and Ola. My brother Nick, my parents and Jodie will get me through the final phase--with the help of Dr. Burt and his amazing team. My little brother then starts the "at home" recovery support.

#somuchloveinmylife #extrabondingtime  #plantopayitforward

I hope to make as many updates as possible wile inpatient. It will all depend on how I feel. Its a roller coaster the whole way, so I will try to make typing time on the "weeee!" days.

Final thoughts for today: forgive the language.
I have been softened and moved by the kindness poured my way. Far more sensitive and open-armed in general these days. I have cried more the last 2 months than I had in three years.. It has also brought up intolerance of "victim" mentality.  Fight, research, ask for help, advocate for yourself, no matter the situation. I am indeed different than I was 18 mo. ago, but in a good way.

In a strange way, I have CIDP to thank for my personal growth. I, however, will never respect or miss CIDP. Trust me.

Saturday, July 25, 2015

It's just hair........and a sprinkle of other updates

The previously mentioned missing spark came and went these last few days. Its hard to explain but there are days where I feel fine (with or without energy) and days when I feel terrible (with or without energy).

rockin the shortdo
bananas and lysol

Ola has done a great job making sure I stay hydrated, pain free and without fever. The neck catheter wound has really been bothering me so she makes sure the pain level doesn't get out of control

I feel like the spark was back today (Saturday) as can be witnessed in above "lysol" photo. Had a visit with Eleni at the hospital today. She is on Day +4 of transplant and may be discharged anywhere from 4-7 days from now. I get admitted Tuesday so we may just miss each other inpatient. We forgot to take pics of the visit....but we had a lot of laughs. She is my Greek sista from Jersey and she is hilarious. She is fighting MS like a boss.

Sorry E, I stole a picture from your FB page! Her and her mother Helen are precious to me

Eleni and I made a joke about the fact that my hair has hung in strong, I'm now on day 15 with no sign of it bailing.......not 30 minutes later did I run my fingers through it and get a handful. So Ola and I decided to have some fun a dye it my CIDP foundation colors before we shaved it off.
my hairdresser (Ola)
GBS/CIDP Foundation colors
i kinda like it
cutting started

love the hawk

baby steps in fun

Ola leaves in the morning. Thankful she took time away from her family to help me out. Looking forward to my big brothers arrival tomorrow. A man I so look up to and am honored to be related to. I am so humbled he is also taking time away from his family to support me. I look forward to being more active with the beautiful niece and nephew he gave me, once I'm back on my feet.
thanksgiving 2013 - before diagnosis

The support thus far has been overwhelming. Whether in person, by phone, text, or email I get emotional just thinking about it. Thank you all for the love, prayers and support. The posts may become more sparse as I start the inpatient journey, but will do my best to keep the updates coming.

Upcoming schedule:
Monday: PICC line placement in my arm. Finish packing for hospital
Tuesday: 7am admit to Prentice, until release date mid-August.

Thursday, July 23, 2015

My Spark --- still on a milk carton

My dear friend Ola arrived Wednesday.  Lucky her, she was greeted with me generally feeling nauseous and dizzy. Lots of resting happening.

Ola and I met through a mutual friend many may years ago, and something just clicked. She was with me on an awards trip to FL in March 2014 when I realized that my disease had progressed and something was terribly wrong.
longest layover to FL @ DFW

Thursday i just felt like garbage, so I lounged a lot. She wanted to capture my "comfort" artistically. Black and white photos make you look ten times more amazing than you feel. I'll take it!

she got me to laugh

The goal for Thursday is to flush my body of all these meds and chemicals with lots of water. My guess is, that is what is making me ill. So rest and water is on my exciting agenda. Perhaps I will sprinkle in a movie and some catch-up on Facebook and Gmail.

Next week I have 6 straight days of receiving a plethora of chemicals, (Rituxan, Cytoxam, rATG, Mesna, Lasix, so on and so forth), so I would like to give my beloved body a break.

The head is starting to itch like crazy. Friday marks 14 days since my first chemo dose, which on average, is when many notice hair start leaving the scalp. My scalp is also a bit sore. So we very well may be shaving this noggin tomorrow. Fun with photos for sure!

Be prepared, while we are at it there will be some mohawk phases, blue/green CIDP coloring....I mean it could be hair mayhem people! You have been warned.....

Wednesday, July 22, 2015

"Spa Days" for the jugular

With harvest behind me, instructions from Northwestern were to rest and take it easy. The neck was pretty sore Tuesday so I did just that. Took it easy, caught up on emails and took some naps. I was feeling pretty good.

feeling good Tues

There was movie time with my caretaker Dana, who will now be known as the "silk pajama ninja". I will spare the details for the children's book I just may write based on my experience with said ninja. 

amazon fire stick movies

If there is one thing my girlfriends are good at when I am not well, it's making me laugh. Amy, Dana and Ola are masters at it. Dana leaves tonight <pout> and Ola is on her way in today <hooray>! I wish I could have all three of them the whole time I'm here...but they all have husbands and children that they left behind to help me out. I have no idea how I will ever pay them back. I'm so lucky.

The weather has been amazing and my daily visual perspective is almost shameful. Clearly I'm suffering from the 29th floor with these terrible views. I fall in love with this city more each day, there may be Illinois property in my future, we shall see.

night view
my sunset view

Today (Wednesday) has not been as restful. I woke up with some nausea and dizziness, so the silk pajama ninja (aka Dana) said it is another rest day for me. We have emailed the NP because there is significant swelling at the catheter site. We will see what they have to say.

In bed I shall stay until I am feeling better. There is probably a wound cleaning on the agenda (just thinking about it makes me ill) so there's that. Here is me today. Still smiling, but I'm sure you can see a little of the spark is missing, just feeling a little off today.

not myself but hanging in

Hoping more rest will bring my spark back.
Until there is more to report, make it a great day, wherever you are! 

Monday, July 20, 2015

Successful Harvest (Day 11)

The weekend was spent managing bone pain. It was all worth it. The procedure requires 2 million stem cells and I collected (drum roll) 12.62 million.

It was a long day, started at 5:30am and returned us to our hotel room at 7:00pm. May I just state here that Dana is a rock-star. She coordinated and managed every detail of this 14 hour day and didn't even get a comfy chair out of it.

First stop was Interventional Radiology where they place the catheter using x-rays and ultrasounds
What a great staff they have! They make sure you are well informed of every step of the process. They even offer to stop informing you of details at any time. They said I was a 12 on a patient scale of 1 through 10. (I am a charmer - however, it's common sense to be nice to people putting things in your jugular)
cath from my clavicle to my heart

Once catheter secured I went to the blood center where the harvest takes place.
Rhonda was our nurse for the day and she was lovely.

**if you get woozy over the sight of blood, you may want to skip this post**

I was connected to a pheresis machine, that filtered the blood in my body three times in 4 hours. It pulled out the stem cells and some plasma. There is no disconnecting once you start, so food and drink is well planned. This went from 11:45 - 4:00 pm

hooked up to my "R2D2"

eye patch was a must for a nap

My catheter was a little leaky forgive the not so delicious view.

I was delighted when an HSCT veteran Michele stopped by. She is here for her 6 month post transplant evaluation. I had followed her story back in Dec-Jan and was excited to finally meet her. She is a beautiful soul....and I was happy to see her healing progress.

When the time came to take the sucker (aka catheter) out Dana knew just what to do. I suddenly felt rubs on my feet and calming words.

cath up on the pillow-not tiny!

In the end I collected ten times more than needed. Just extra buddies to aid in the healing.
plasma (yellow) stemmies (red)

happy once it was out

So grateful to have had Dana here for this phase. She was with me for my first spinal tap, and was able to calm me down dramatically. She is good at the tough medical stuff, and I am lucky to have her for this. Now we can relax and watch a good movie together before she leaves.
D and I many years ago..before I got sick

Next few days will be spent resting. I am physically and emotionally beat. This next week is about rest in preparation for admittance to the hospital on July 28th. Once admitted there are 6 days of chemo and other medications, and on Aug 3rd I receive my stem cells back to aid in healing.

I will not leave until sometime mid-August, when my blood counts are safe for me to return home.

If there is anything to report I will add a post.  Thanks for the messages, emails, texts. They all make me smile (sometimes a good cry even). Thanks for understanding when I don't reply. You wouldn't believe how much I sleep in a day. It's what I love about having a blog, so you have the latest when I am too tired to respond to an email, text or call.

Your love and support is overwhelming and wonderful....keep it coming.