My Christmas Miracle

My Christmas Miracle came a little early this afternoon. On our way to the Christmas Eve Church service, Dr. Williams called to tell me they (Aetna) have approved the new drug I need, Rituxan! A huge thank you to all of you who have been thinking and praying about this. It really is answer to many, many prayers. Dr. Williams would like to start this new drug as soon as possible so we will talk on Monday and try to get something scheduled, either up in Manhattan or down here in South Jersey. The icing on my Christmas Miracle is that we were able to get some of the other drug from a pharmacy in Philadelphia. Huge thank you to my husband who braved the Christmas Eve traffic and crowd to get it for me. Merry Christmas to all of you!! XOXOX Haley

Officially Denied

Dear insurance company. How I hate you. Not only have you officially denied my doctor's request for the new drug Rituxan (Rituximab), you have also denied a medicine I have taken everyday for the past year. I don't really care about prior authorizations, or any other hoop you have for me to jump through, things should be taken care of within a week. I would also appreciate a call back when you say you will and if you are holding access to peoples medicine, it should be required that someone is accessible more than 9-5 Monday-Friday because some months, people refill prescriptions on Saturdays and Sundays. Enough with my rant.... Long story short, my doctor is working on it. Hoping to have a better outcome soon. I'll keep you updated. For now, I will continue IVIG monthly as planned. My blood work last month was not where it should have been, and I wasn't able to have Cytoxan so that chemo is put on hold for now. Crossing our fingers that the denial of Rituxan can be overturned quickly. Much love to you all and thank you for all the continued prayers. Merry Christmas! Love, Haley

Hoping for new drug

I had my 5th round of chemo on November 11th. Not gonna lie, it was rough. They seem to be getting harder every month. It didn't help that I had some sort of stomach virus the week before, but thank goodness for Zofran or I would have never made it through the week. I went to NYC and saw Dr. Williams on November 14th and he is not happy with my current treatment. I have not been able to lower the oral steroids and I need to be able to do this ASAP. It's been over a year and the steroids are wrecking havoc on my body. We have decided to switch to the Rituximab (Rituxan) treatment for sure. As far as I know, we are still trying to get the insurance to approve it. I'm hoping and praying this comes through before the 9th of December, so I don't have to do chemo again. The plan is for me to go to Roosevelt Hospital in NYC and have the first dose, then 14 or 15 days later, go up again and have the second dose. These two doses, if they work correctly, should last for six months! I will continue the IVIG twice a month at home. As far as I've been told, the Rituximab will kick my butt for a couple weeks but then I should be ok. Hoping and praying this is what I need. Feeling pretty good this week energy wise. Just trying not to over extend myself. On the good days, I try to do too much to make up for all the days I don't make it off the couch. This just puts me on my butt by 7pm, and dog tired. My face still looks like a balloon and my hair is falling out, thin like a grandma or maybe even worse. Don't expect a Christmas card with my picture on it, way too vain for that right now. Hoping that once we stop the Cytoxan my hair will come back. Otherwise, I'll need some friends to go wig shopping with. Happy Thanksgiving everyone!

Trying to keep a lid on it

Sorry I haven't posted. I had my MRI's weeks ago and they were all ok. No significant change. That was a relief but didn't really provide any answers to my issues. Finished my 4th round of chemo last week and did IVIG Monday and Wednesday this week. Still hanging out at 70mg of prednisone for now. Haven't felt really well the past day and a half so who knows what that means. The higher dose of steroids has brought my face back to it's full moon shape. My attitude is poor but I'm trying to keep a lid on it when I can. My hair is starting to fall out in the shower. Not tons of hair, but enough to notice. We are waiting to see if I can reduce my steroids down again and if not, we will be pursuing another treatment call rituximab, I think. It's another type a chemo that has worked for others. They are working on getting approved with my insurance because they don't like to pay for this particular drug. I am also waiting on my blood test results for RA. My knees have had some joint issues and my doctor is just checking into everything I guess. Apparently when you have one autoimmune disease, it is very likely you have others as well. Oh Joy! That's all for now.

The good and the bad

Last week I was able to wean myself down to 30mg of steroids with very little problems. Then I started having issues with my words again. I spoke with Dr. Williams last Tuesday and he put me back up to 60mg with instructions to slowly taper down to 40mg. Then we would talk again to make it an even slower taper down to 30mg. Unfortunately, I didn't get there. 60mg isn't cutting it right now, so when I spoke to him yesterday, he bumped me back up to 80mg of steroids, and I am going to get another MRI of my brain and my cervical spine in the next week or so to see what, if anything is going on. Please pray this gives him the answers he needs to plan our next steps in treatment.

Slow going

I had my second dose of chemo last Monday while my parents were here. Tuesday I was tired and Wednesday and Thursday mornings were the worst of it. After sleeping all night, with nothing to eat or drink, there is so much acid in my stomach I feel like I have the flu. Some dry toast seemed to help settle everything down a bit. I think I'm learning how to deal with the stomach issues so hopefully next month will be even easier. Since Friday I have been feeling much better. I think my counts are bottoming out again because I'm just sluggish. I will get my IVIG transfusion on Thursday and Friday so hopefully that will give me a little boost! I was also able to lower my steroids down to 40mg everyday. Let's pray no issues appear, and I get the all clear to go down to 30mg!

Chemo Tomorrow

I have been doing well since I last posted. I have been able to reduce my steroids down to 50 mg and I haven't had any problems. My second dose of Chemo is tomorrow morning at 8am. Luckily my parents are here this week so we have plenty of help if I'm down for a few days.

Feeling better

It took a few days, but this weekend I finally started feeling better. I'm still having some headaches every once in a while, but nothing too crazy. I had another IVIG treatment yesterday, and I will do that again on Thursday. Then hopefully I'll start to lower the steroids. Waiting on bloodwork to see how low my counts went. I'll keep you posted. Thanks again for the prayers, meals, lawn mowing, and babysitting. We couldn't have done it without you!

So this is chemo

It turns out that this whole chemo thing may not be as smooth sailing as I thought it would be on Tuesday. I woke up on Wednesday morning feeling like I had been hit by a truck. I am still not feeling much better. I am finding enough energy to get the girls to VBS at church but that is about it. I am hoping that I will start to feel better soon but I know that my bloodcounts wont bottom out until 7-10 days after chemo. This means I could feel crappy until the middle of next week. I'm very thankful that this is only a once a month thing, but im not looking forward to the next 17 months. (Although my parents will be here for the next treatment, so there will something to look forward to.) We have been blessed by neighbors and friends with lots of food and gifts. Thank you again for all the love. Hopefully i'll be back to "normal" again soon. Btw... my computer died so i'm using my daughters nook for now to post updates. I may not get one up for awhile. She just figured out how to borrow books from the library on here,so it's rare that she puts it down. Gotta love my bookworm!

Chemo Update

I did it! I finished my first dose of Cytoxan and everything went well.
I am very tired but that is expected. I haven't felt sick and I am taking more Zofran tonight so I don't get sick during the night.
I need to drink lots of fluids so that I make sure to flush all of the chemo out of my bladder. Cytoxan can cause bladder cancer if it sits in the bladder, so drink I will! I had a huge bag of fluids with my meds already and I feel like I can't drink anymore, but I have another 32oz I have to drink before I can go to bed. I think I have gotten up at least 32 times to go to the bathroom!  Once I finish this last 32 I will have drunk 192 oz. since noon. That's a gallon and a half!
Feeling very blessed tonight. Thank you for all your thoughts and prayers!

Starting Chemo

Well, it seems things are moving quicker than I thought. Everything is in place, and I will start the Cytoxan on Monday afternoon. A big thank you to everyone who has offered us help. My girls will be in good hands Monday, thanks to the Cotter girls, and after that we will take it one day at a time.
I will have a large bag of normal saline for about two and a half hours, and then I will have IV steroids and  IV Zofran (for nausea) before the hour of Cytoxan. If all goes well, I should be done in about four hours.
I may be down for a few days, but I hope to be feeling better soon.

One year

It was one year ago that I was diagnosed with MS. I feel like this calls for a celebration!  It seems like forever ago. I am grateful that I feel so much better than last year, but I am looking forward to starting my new treatment and feeling back to "normal/better".
I spoke with my doctor on Tuesday. He confirmed that I will be starting the Cytoxan at the end of the month. Praying that this treatment works and allows me to start reducing the steroids. It would also be nice if the side effects of the chemo are minimal. A girl can dream right?

New Plan

I went to New York on Thursday afternoon. I had a good visit with Dr. Williams. He looked over all the tests, went through my two inch patient folder, and did a full neurological exam. I still show no signs of weakness or gross motor problems, which is a positive thing!
We don't know why I have a lesion on my sign that is chronically enhancing. I have had a full round of IV Steroids, and multiple IVIG infusions, with CellCept and steroids but it remains. That means the lesion is active and won't "die". I believe it is what is causing me the most "discomfort" right now.

We also don't have a final name to put on my illness. As far as I can tell you, I have a autoimmune disorder that affects my brain, spinal cord, hearing, eyesight, and thought processes.

• I have a large lesion right in the middle of the corpus callosum part of my brain. (Susac)
• I have small round lesions all over my brain.
• I have unexplained mild to moderate hearing loss in both ears. (Susac)
• I have a ringing sensation in my ears that comes and goes (Susac)
• I have typical lesions on my spine (MS)
• I have had optic neuritis in my left eye (MS)
• I have crazy fatigue (MS)
• I have an electric shock sensation when I put my head down
• I have a small area of my leg with no feeling
• I get headaches daily (Susac)
• When I decrease my steroids or my lesions are active, I have a hard time finding my words.

Needless to say, I don't fit into a "proper diagnosis". 
On Monday morning, Dr. Williams will once again be sharing my case with all of the doctors at the International Multiple Sclerosis Management Practice (IMSMP). They all know my case and are familiar with my issues. I guess it's not everyday that someone presents with something rare like Susac's. He is hoping that they will agree with, or challenge him on his treatment plan for me. 

It is our plan to start a new drug called Cytoxan into my therapy. Cytoxan is a chemotherapy drug. It will be infused once a month for 18 months.

• Adverse drug reactions include chemotherapy-induced nausea and vomiting, bone marrow suppression, stomachache, hemorrhagic cystitis, diarrhea, darkening of the skin/nails, hair loss or thinning of hair, changes in color and texture of the hair, and lethargy. Sounds fun!

This will be replacing the Cell Cept I'm currently taking with the hope that it will quiet down the lesion and allow me to slowly decrease the steroids. Our main goal is to get me off steroids completely.
I will speak to him on Tuesday to get the final plan confirmed and I'll send another update then.

Thank you for all of your thoughts and prayers. It means so much to us! It's hard to believe it's been almost a year since I was first diagnosed, July 17th! Even though I don't feel great everyday, I do have better days now. I am so much better than I was last summer. I feel as though I am on a roller coaster journey, and one of these days, this ride is going to stop, and I will get off!

Haley

Flying Solo

I think it's fair to say I made it through the weekend on my own, just me and the girls. Mike was out in Vegas doing the bachelor party thing with a bunch of good friends. He will soon be boarding his flight back to the east coast. Let's hope he gets some sleep on the plane because we are all excited to have him home!

It's been a rough few days, with my temper and no break, but we've managed. I'm sure my girls are wondering where fun, nice mom went, and where they can send this mean mom who yells! I try really, really hard not to raise my voice, but I have so little patience since being on steroids. I would really like to find, or even try another treatment or drug but currently, the steroids are the only thing that is keeping me "somewhat stable". I used to say that I was ok with all the side effects of the steroids because they helped me feel so much better, but now that I'm not feeling all that great, it really makes looking horrendous that much worse.



Here is just a little insight to what the steroids I'm taking can do to your body. I currently take 60mg of prednisone every day.

Prednisone is a corticosteroid. In contrast to anabolic steroids (used by “bodybuilders”), corticosteroids are used in inflammatory conditions for their anti–inflammatory effects.

Long term use of prednisone has a devastating impact on your bones. It will cause you to absorb less calcium in your intestines, cause your bones to take in less calcium, cause your bones to rebuild more slowly, and cause them to break apart faster. This can lead to steroid induced osteoporosis.
Prednisone also slows down the immune system, so you will be more prone to infection. Your blood sugar will also go up, and you could end up with steroid induced diabetes. Your muscles will also atrophy since these steroids are catabolic, meaning destructive, so you will get weak. Your body will also retain more water and get really puffy, something called "moon face". Your skin will also become more fragile and prone to cutting. The steroids cause weight gain, acne, headaches, growth of facial hair, and they cause you to bruise easily. They can cause cataracts, glaucoma, stomach ulcers, aseptic necrosis, insomnia, rounding of upper back, irregular periods, excessive sweating, depression, mood swings, and personality changes.

Doesn't that sound fun? Now you know why I haven't  posted a picture of me! It's not pretty.

Here's hoping Dr. Williams can come up with a new plan by Thursday!

Happy 4th of July!

I was hoping to feel better today since I finished my IVIG treatment for the month yesterday, but I woke up with a headache. I have my Nuclear Med study scheduled for Monday, Tuesday and Wednesday of next week so I am hoping to find some answers there. Then I have an appointment in NYC on Thursday. Hoping we have a new plan to follow by next weekend.

I spoke to my doctor yesterday. He looked at all my MRI's and he is ok with the way they look. My brain MRI has not changed at all. He didn't agree with the radiologist's report, but I trust his judgement since he knows what he's looking for. As far as my cervical spine, not as good news there. I have chronic enhancing lesions on my spinal cord. We are not sure why they are still enhancing. I am having another test done next week called a Nuclear Medical Gallium Scan. He is looking to rule out something called Sarcoidosis. 

I was able to get my MRI done on Tuesday this week instead of Wednesday. I picked up the report on Tuesday night. Very confusing report, so I sent a copy of the report to my doctor in NY to clarify. He wanted to see the actual images. I sent the images overnight to him yesterday. He has them now, and I'm just waiting on a call back. Prayers are always welcome. Thanks!

Not feeling well this week. I spoke to my doctor on Wednesday and he ordered another MRI of my brain and cervical spine. I'll have that done on Wednesday. For now, he increased my steroids back up to 60mg.

Follow along

For some of you, this will all be new and I apologize for not being able to tell you in person. I am hoping this is an easy way to keep everyone up to date with my health.

I have been struggling with headaches since the end of 2011. It was a very long process and I've been in and out of hospitals and ER's and too many doctors to count. I've stuck myself with needles, and swallowed thousands of pills. But I've been lucky to have seen some of the best doctors in the US, and I feel like I am in the right hands with my current doctor.

To bring you all up to speed, I have been diagnosed with Multiple Sclerosis and most recently with a rare disorder called Susac's Syndrome.

Susac's Syndrome is an autoimmune disease that affects the microvasculature (tiniest arteries and capillaries) of the brain, retina and inner ear---resulting in varying degrees of ischemic injury (injury due to decreased blood flow and oxygen) to these tissues.

This means that my own immune system is mistakenly attacking part of my body.

I am on a treatment plan that consists of a double dose of IVIG every four weeks, oral steroids, Cellcept, and a handful of other pills and vitamins.

Right now, I am working on slowly tapering the steroids without causing harm. It turns out that this is a painfully slow process. It feels like one step forward, two steps back. It is really testing what little patience I have left.