Home Again

We're home.  Finally.  Easton Corbin and Josh Turner put on a great show.  The Bob Hope Theater in Stockton is something else.  Once a Fox theater, the inside is grandiose in an old European meets Roman sort of way.  The sound of the music was so warm and rich - even the singers commented on it.  I have seen Josh Turner at Arco Arena and at the Konocti, and the sound in Stockton was a music lover's dream.  The stairs on the other hand...they were a huge challenge.  My legs gave out half way up, and I had to swing my legs up like I was walking on peg legs.  Fortunately, my legs decided to relax during the concert and I made it down the stairs without sliding down on my butt. 

When we booked our hotel, we specifically asked for a nice, quiet room.  We'd be up late and wanted to sleep in.  The failed to tell us about the 7 am benefit for St. Joseph's cancer center.  If you know me, you know that I am all for supporting cancer patients.  After driving around Stockton trying to find a tooth brush at 11:30 at night, and then getting wound down, I wanted to sleep in.  My body needs to rest.  Between my loving husband stealing the blanket all night and the lovely (and LOUD) benefit breakfast right under our window this morning, sleep didn't really happen.   

I'm in bed now, and my bed feels like a cloud at the moment.  My poor body is so tired and sore.  I want to get out and get things done, but I promised to rest, and I will.  Being a little woozy pretty much guarantees that I'm not on my feet for more than a few minutes.  I am praying so hard that my liver will stop taking a vacation.   I have to schedule a follow-up in a few weeks for more testing, and to discuss our options. 

Bad liver! Bad!

We are currently in a hotel room in Stockton, calling in some room service.  Somehow, we managed to book the same hotel housing the Peace Officers Memorial Ride.  The place is crawling with cops, and they brought a LOT of booze.  Drunk cops should be interesting.  I thought the wind was bad at home.  I'm actually able to stand on tippy toes and lean into the wind.  When I'm stiff, which is pretty much all of the time now, I feel like I am walking in molasses.  This wind makes it feel like I'm stuck in curing cement.

If we hadn't bought tickets for Josh Turner months ago, there is no way I'd consider a road trip after IVIG.  I feel like I took a header off of a horse.  (I've done that...a few times.)  Fortunately, my car is back on the road, and we didn't have to borrow a car for the trip.  I got a little bit of side-eye when I admitted to the doctor's assistant that we were going to a concert tonight.  I promised to stay in bed for the rest of the weekend. 

The second round of blood tests to check my liver function did not yield good news.  My neurologist wants me back in after a few weeks to check my enzyme levels again.  Further IVIG treatment isn't completely out of the picture, and I hope that it stays that way.  I am looking into sub-q delivery, which might be easier on my liver and kidneys.  With sub-q delivery, the dose is split into four treatments given once a week instead of over 2 days.  Because I'm a bit of a freak and neurology hasn't dealt with sub-q IVIG, I'd be sent to Immunology to get that started.  Most IVIG patients have immunodeficiencies.  The neurology department only has a few other patients on IVIG, and go figure, they aren't having any side effects. 

We'll be praying and hoping that my liver can handle the job and get back to normally quickly.  I have seen some improvement, and long term, this is a LOT better for my system than benzos and muscle relaxers. 

Day Three - Scratch That

When I showed up to the infusion center yesterday with a raging migraine, the first concern was that I might have developed aseptic meningitis from the infusion.  The doctor gave the okay for Toradol to treat the migraine, and some fluids to help keep me hydrated.  Just in case, they wanted blood drawn.  I got through the infusion okay, and actually fell asleep right before it was time to go. (Figures, right?)  I didn't even notice the chemo patients constantly shuffling in and out.  They're so quiet...on a mission, if you will.  The nurses know them by name, and they are in and out in much less time than me.  

On the way home, my stomach started to hurt.  I figured that it was the jostling from riding on crummy roads in a diesel-powered dualie that did it.  Not that lucky.  I was smacked in the face with one of the more common side effects.  Last night I finally got into bed around 2 am, after being sick for hours.  It was rough.

When I showed up to get my infusion this morning, then nurse was concerned.  She told me to not worry, but that my blood work came back with elevated liver enzymes.  Unfortunately, the neurology department was in a meeting for another half hour.  I decided to hang out in the recliner since I was still feeling queasy.  When the nurse finally got a hold of a doctor, they said to send me home.  Out came the iv's, and out we went.  Before we left we went upstairs to schedule a follow-up with my doctor's assistant. 

I really hope that I can continue getting IVIG.  We may need to switch formulations or go to sub-q delivery.  Since starting the treatment, I haven't taken nearly as much Ativan or Flexeril.  That is saying something, because I've been so stiff for years now.  We're praying that this was just a fluke because it was the first time. I really, really, really don't want to do long-term steroid treatment, and that is the only other option.  

We don't have any pictures from today, so here's a picture of me giving the side-eye yesterday.

Day One - Done!

Day one of three is done with.  Finis.  Out of the ballpark.  I showed up early this morning to the infusion center.  Really, the infusion center is a small unit tucked in the back of the oncology department.  They told me to choose where I wanted to sit, so I chose the only recliner with its own little divider.  There was more room for us to spread out and relax.  Before the infusion started, my pulse and blood pressure were ridiculous.  It was 100% nerves.  I started to feel nauseated before the infusion even started.  The nurse gave me a hefty dose of Zofran, and we were off running.   (At a snail's pace.)

I am receiving 45 grams of Gammaguard each day for three days.  To reduce any side effects, the dose is slowly titrated up every half hour, and then every fifteen minutes.  The infusion took about 3 hours and twenty minutes.  Because my veins are so crummy and I don't have a port yet, my iv was flushed and locked with saline.  I avoid more sticks tomorrow, but I can't get my hand wet.  I think I'm going to take a bath with help tonight, and then go to a salon in the morning to get my hair washed.  After the raging headache I got through today, I deserve a little pampering, if only for a few minutes.  Speaking of the headache...imagine have the flu AND a horrible hang over.  It was on par with headaches that have sent me to the ER before.  It took time, excedrin, ice packs, and lots of fluids... but I'm not feeling it as much anymore.

Luckily I wasn't capable of vomitting after that huge dose of Zofran, because traversing downtown in a Dodge Ram duelie is precarious enough without any help.  We called and asked for something to help prevent the headache tomorrow. Adam did manage to snap a picture of me while I was about to fall asleep...enjoy. :)

This week was...rough.

This past week was...rough.  One of our friends in the ICU with diabetes complications, and it has been touch and go.  He was just transferred to San Francisco.  My grandmother took her foster son, Ranny, down to Stanford for open heart surgery.  He is back in ICU with a collapsed lung.  It breaks my heart to not be able to be there for them other than in prayer.  Those troubles make mine pale in comparison.

After a full week and a half of going back and forth between infusion centers, my doctor's office, and our insurance company, I finally got scheduled for treatment.  For three days, I will have to travel downtown to visit the oncology department for an IVIG infusion.  My awesome husband took the time off to sit with me, and the whole village came out to help take care of Emma while we're at the infusion center.

Adam's car has been out of commission because of a bent rim.  We haven't been able to find anyone that will sell us one rim, and we don't really have the money to buy extra rims that we do not need.  When he attempted to move his car this past week, we discovered that a rat had eat several cables under the hood.  Bonus prize, right?

I found my four year old bawling in her room earlier.  She has a friend who is a little older, and that friend lost her grandmother recently.  The friend asked Emma what she will do when Adam, my mom, and I die.  Double bonus prize.  Understandably, Emma was distraught.  I can tell that me being sick affects her, and this scared her badly.  I held her and rocked her, whispering in her ear how much I love her. How I'll never leave her.  How I'd hold her all day long if I could.  I explained again that Mommy is getting good treatments that should hopefully help me have the energy to do more "Mom" things.  How I'd be home she she woke up in the morning, and how I'd be home for dinner and to cuddle while she fell asleep.  

Tonight Adam ran to get dinner, and discovered that the power steering pump in my car wasn't working correctly.  After opening up the hood, he found a leak in the tubing for the pump.  Triple bonus prize.  My dad lent us his truck so that we can get to the appointment without having to rent a car.  Chugging downtown in a huge Dodge Ram should be fun.  God bless him for helping out, though.  He'll be babysitting in the afternoons as well.

While Adam and my mom drove over to pick up the truck, I decided to take a long, hot shower.  I've been an emotional wreck, and I needed it.  I didn't factor in that the washing machine and dishwasher were going, and it was a fight to keep the water warm.  I scrubbed, I shaved, I moisturized.  I felt a little like Geralyn Lewis when she decided to wear lipstick to her mastectomy.  (My survived breast cancer treatment at 32, while I was just babe.)  At least if I have to endure physically and mentally, I'll look okay doing it.  Trade that lipstick for Burt's Bee's lip tint, and I'm there.  

I admit it.  I am scared.  I am nervous.  I am excited.  I am trying to hold on to the fact that IVIG can be a huge help for most, but it may not help.  My last resort would be long-term steroid treatment, and steroids make me feel horrible.  I pray to God that this helps.  I pray that I do not suffer side effects.  If you're the praying type, please pray with me.  I can't thank all of my friends and family that have stood up to support me enough.  Words do not express it. 

Finally!

Woohoo! After a week and a half of crazy, round-and-round phone calls, I am finally scheduled for IVIG treatment.  We'll be going to the new Mercy building right at Q and business 80.   I like San Juan because it is close, but the Q street location is new and posh.  I won't be premedicated, so I won't be knocked out on benadryl.  (Most infusion centers premedicate.)  I am praying that I have no nasty side effects like migraines, vomiting, diarrhea, or the dreaded immune reaction.  Headaches and fatigue are pretty common, and so is a flu-like feeling for a few days.  The others aren't that common.

I'll be able to sit in a squishy recliner while they pump me full of antibodies for a few hours each day.  They said that if I'd like to get up and walk around, I'm welcome to.  After this round, I am going to get a port if the treatment goes well.  I'd prefer an under-the-skin chest port, but it is up to the doctors. 

I have to send out thanks to God and my wonderful friends and family members that helped me get to this point.  I have been searching for answers for my entire teen and adult life.  I prayed for help in finding a doctor and a correct diagnosis, and I found them.  I can't help but see that as a wonderful blessing.

 Below is the infusion center at Woodland...Midtown should be much the same.

Beyond tears...

I am so frustrated.  This week has been so confusing and irritating.  Emotionally, I am beyond spent.  We are still going back and forth with the doctor's office, the infusion center, and now for some reason, the oncology department.  I've been told at least five times that my time is blocked out at the infusion center, only for them to call an hour later with some new crisis.  They need to confirm something, then there is an issue with the dosage, then an issue with the scheduling (can they do it every other day?), then a problem with oncology. (Still don't know what their issue was.)  Then they didn't know if they'd have enough medication, and it would have to be special ordered. Could they give me a time estimate on how long it would be to order? Of course not.

They'll talk to Adam, say they'll call back, and then call me when I have no clue what the previous conversation was.  Adam has asked that all calls go through him because at this point, I've had it.  I can talk to my doctor's office without issue, but the others are driving me to tears.  It doesn't matter who it is - they just talk circles around circles, never making sense.  At this point, I'd rather be admitted to the hospital for a few days to get the treatment.  If they don't figure this out soon, I'll be in the hospital from the stress.  

 

T minus 3.5 days...Part Two

Why is scheduling such a big deal?  The infusion center at San Juan booked our appointment for Monday morning.  Later on, the word was "oops...we can't do that."  The center had openings Monday, but not Tuesday.  They couldn't schedule me next week unless I wanted Wednesday - Friday.  We told them we had a commitment Friday night that we can't get out of, and more importantly, we have to find a baby sitter for the days I am at the infusion center.  I got the feeling that the scheduling lady could care less.  (Also the same lady that almost made me blurt out a long string of expletives by getting me pissed before I had any coffee yesterday.)

After a couple hours of trying to figure it out, I got a call from my doctor's office.  I asked to be sent to the downtown infusion center instead.  I didn't want to risk the chance that the woman we dealt with yesterday would be treating me.  If you can't pull your $%# out of a hat, you don't need to be poking me with needles.  The downtown location blocked out time for us Monday-Wednesday, leaving me some time to recover before the concert.  We are waiting for the referral to be send over in order to schedule the exact time, and that should be taken care of today.

If it weren't Josh Turner, I might have forgotten it.  But it is Josh Turner, and I REALLY need to get away for a little bit.  Even if it is just a day or two.  We haven't just gotten away for a night since we saw Willie Nelson at Ironstone Winery.  We were on a very tight budget for that trip, and this time we can afford a nice hotel and hopefully a nice meal out.

If you are the praying type, please pray that the IVIG treatments help, and that I do not suffer any side effects.  This feels a little like scheduling a c-section and knowing the exact moment your child will be born.  I am relieved, happy, excited, scared, and nervous all at once. 

T minus 3.5 days!

We finally have an appointment for my first IVIG infusion.  It took a lot of work on the part of my doctor's office to get this going.  We have a PPO, and for whatever reason, they have decided to not require authorization on many treatments.  The list of what does not need approval is strange and doesn't make much sense, but that's beside the point.  Because I did not need authorization, I did not have an authorization or referral code.  That just wouldn't do for the infusion center.  They wanted hard proof that they would get paid.  

Ugh.  This was like deja vu of the incident a year ago when I was trying to get breast cancer screening approved.  Round and round we go.  The insurance company mailed a letter stating that they will pay the charges, but we have to wait for the infusion center to get the letter.  My doctor's office sorted that part out, and said it should be a few days.  Okay.  I can wait.  I hate waiting, but I can wait.

For some unknown reason, I got a call today from a lady at the infusion center.  She told me the exact opposite of what the doctor's office told me.  "You have to pay 90%, your insurance only pays 10%."  WHAT?  I tried explaining that the doctor's office already sorted it out, and that we were just waiting a letter that was already in the mail.  She kept insisting I call to get a letter, and was going round and round.  I finally told her that I'd call back in a couple hours.  I couldn't take anymore and still remain civil.  

Of course, the insurance company reassured us that our maximum would be $1000 out of pocket, and we should be reaching our yearly maximum soon anyways.   Now we're trying to work out the scheduling, which is proving to be a pain in the rump.  It shouldn't be, but it is.  Murphy's law, I suppose.  I've heard that once you're in the system, getting monthly treatments is MUCH easier.  I sure hope so.  

I'm crossing my fingers and praying that I don't have treatment late next week.  Aside from wanting to start as soon as possible, we have a Josh Turner concert next Friday that I would really hate to miss.  We already booked a hotel room on the water for a little R&R, and I really don't want to spend that time at home or in the hotel room feeling sick.  Sigh

Good omen...or good veins?

Today we trekked downtown again for a neurology check-up.  I often see the doctor's assistant, and sometimes rotate between the two.  Since they work so closely together, I get the same quality of care, but with a LOT less wait time for an appointment.  When you're seeing the head of neurology, that might mean a few weeks compared to the next day. 

Anyways, I think that we got a lot accomplished today.  We talked about a treatment plan, and decided on trying IVIG, and then steroids if I absolutely must.  She said that she should get word back from my insurance company pretty quickly because we have done all of the groundwork to prove the diagnosis.  I am crossing my fingers that they will pay most of the cost.  Each infusion is around $12,000, and I may need more than one a month.  Usually my insurance caps my out-of-pocket expense at $100 for those things, so I am praying and hoping. 

Because this is so rare, she needs to figure out what the loading dose is, how many days that will take, how often I need it, etc.  She is also getting approval for a port.  I'm not sure which type I'll be getting.  The assistant said that she'll get with the infusion center and their PICC nurse to see which might work the best for me and the treatment.  It may be a PICC line, but I'm hoping for a mediport that is under the skin.  Ports under the skin are a little more work to get in, and it will be sore while it heals, but the benefits make up for that.  PICC lines can't get wet, and they kind of dangle there.  So...we'll see.  Either way, a port will make it easier on me and the nurse administering the infusion.

There is a risk of a serious reaction with IVIG if I am IgA deficient, so after the appointment it was off to the lab.  Normally my veins play hide and seek, and I usually end up with 3-4 sticks in my hands.  The blood flow isn't great, and the phlebotomists struggle to get enough blood for the lab work.  This time, she got it on the first try in my elbow!  That has to be some sort of good omen.  With so many things going wonky lately, I can appreciate something so little.  I hope that good luck keeps up. :)

Fences, Veggies, and Jewelry

This weekend was a blur of gardening and fence building.  I sat in the garden beds and pulled weeds for hours, which in retrospect was a BAD idea.  I worked for about four hours, took a nap, and woke up so sick to my stomach.  Adam and the neighbors managed to get the old fence down, and my dad helped Adam pick up lumber and cement.  Most of the holes are dug, and the poles just need to be leveled and cemented.  Next Saturday we'll get the pickets up and have a shiny, new fence.  I think I might miss the wide open space.  It makes our yard look HUGE. ;)

We also got some of our veggies in the ground.  I bought 11 tomatoes, mostly romas, some heirlooms, and a couple that will be good for slicing.  We also got a few kinds of squash, some cucumbers, and three bell peppers.  I need to find some lemon cucumbers, though.  I LOVE lemon cucumber wedges with a little sea salt sprinkled on top. Lemon cucumbers are not available in stores, so growing them is the only way to get any.  We also got a big flat of marigolds and lady bugs for pest prevention.  Right now, the debris from the fence is stacked in front of the shed.  It is serving the purpose of killing the grass for me the easy way.  Once we get that cleared, I'll be planting a three sisters garden there.

This weekend also brought the arrival of my medical alert bracelets.  Considering the oddball diagnosis and the risks of suddenly stopping medication, I decided that it would be best to wear a medical id.  I joined Medic Alert because they allow you to input your pertinent medical information online, and you can change it at any time.  This includes my conditions, medications, my doctor's contact info, and emergency contacts.  In the off chance that I'm a goner, it also states that I'm an organ donor.  I ordered two bracelets - one with teal writing, and one with white writing.  They're inscribed "Stiff-Man Syndrome, Fibromyalgia, Allergic - Sulfa, Tetanus Vaccine."  Hopefully I'll never need it, but I feel better having them.