2 weeks :)

So it has been 2 weeks since I left Chicago and returned back home. I feel like a lot has already changed for the better. These past couple of days I have begun walking around the house and using the walker. It feels great to be up and around and not stuck in the wheelchair. I have my high and low points throughout the day and I have realized it's not about just getting from point A to point B on my feet- it's about getting there the correct way, by using the correct muscles and coordination. Obviously from my video pre-HiCy, I had not been walking the proper way. Now, post-HiCy, is the time for my body to rebuild the connections and get muscles that had not been doing their part to begin working again. During physical therapy we have incorporated several techniques to aid in this process. We are using ultrasound to loosen my heel cords so my feet and ankles are not so tight. This has already proven very effective since we started last week, and my therapist is very encouraged. Also, tomorrow we are going to begin using electrical stimulation to get my leg muscles to act the way we want them to, and hopefully assist in the process of retraining them to do those movements on their own. So basically what I'm trying to say is- physical therapy has been great!!

That's about all for now. I will post again next week :)

1 week back home!

So it is definitely great to be home! I love the Christmas season, and I can finally take time to enjoy it. Today was my 1st official physical therapy appointment. There was alot of stretching and testing of the different leg muscles. I can remember being there a couple of years back doing PT and it blows my mind to see what a different place I am in now. I am confident I will feel that exact way in a few months when my body begins to heal itself and I get stronger. I know I will look back at the things I struggled to do, and be glad to have overcome those obstacles.

As you can see, I posted a slideshow of pictures from the hospital, as well as a video of myself "walking" just a few days before treatment began. Obviously, it doesn't look like the safest way to get around, but even getting back to that point will be a challenge, and I look forward to posting new videos as my walking improves over the next several months!

There is another website of a man, Chris, who went through this treatment and kept a blog as well. If you follow the link below you will be able to see videos of him walking before HiCy and at 1 and 3 months after treatment. Those videos are my inspiration and the reason I pursued this treatment in the first place. Take a look and keep your fingers crossed I will have the same success :)

These are the videos to check out once on his webpage:
2/29/08- the second video
4/14/08
6/12/08

http://chrishasms.com/photosnvideos.html

Picture Slideshow

Last post in Rush :)

So tomorrow we are off!!!! We have told everyone here we need to be out by 10 am. They seem to think that will be no problem. We packed just about everything, except the morning essentials. I also booked a cab to pick us up tomorrow at 10:15. So it's official. I am definitely going home tomorrow and I can't wait!

Today my WBC count continued to shoot up to 11.65. That is much higher than what I came in with, and much higher than most people. I am still advised to wear a mask and gloves on the plane because of obvious air quality issues.

I scheduled a physical therapy appointment back home for Friday. I can't wait to start and see the improvements I can make. Again, it won't be easy... but I know it will be worth it.

Mom and I had a mini celebration tonight and ordered out. We had found this great pizza place so we decided on that. I haven't had much of an appetitie lately, but I mustered some up for a couple of slices of that pizza! :)

Being that this is my last post in the hospital I will probably only post on occasion when things change at home. I will definitely be adding a slide show of pictures and a video of me walking pre- Hicy ASAP.

I hope this blog was helpful for future HiCy-ers and I know it was a great way to keep in touch with family and friends. As always, thanks for your love and support. I know that will carry me through my recovery process. I can't wait to post all the good things that come from this treatment!

Goodnight everyone!

My WBC count for today was 9.11! Remarkable. That's higher than what I came in with! So they have stopped the Neupogen shots and will let my body take control now.

Also today they stopped two of my antibiotics. If all goes well tonight, i'l be weined off the rest of them tomorrow, and discharged on Tuesday!! That is when we had our original plane ticket booked for, so it works out perfectly.

I still have much weakness in my legs. I can stand up but that's strictly on bone strength. If I unlock my knees, I am like j-e-l-l-o! So I am anxious to have Dr. B or Dr. T (the MS doctors) stop by tomorrow and give me advice. I didn't expect to leave here worse off than I came, but I keep reminding myself "it's only temporary"!

I think that's about it... Mom and I are watching Lifetime movies right now. Haha :)

Some catching up to do...

So yesterday I didn't post because I believe I was asleep by 7 (at home time). I know even Evan was up later than me... but that's ok. Rest is good- and I definitely enjoy it!

So 11/28 my WBC count was .26. Mom and I, as well as the doctors were very glad to see this jump.

Unfortunetly, I did also go for a CT scan of my chest which confirmed some negative things. I have slight pneumonia in both lungs, as well as fluid, and both are collapsed toward the bottom. It sounds worse than it is. The Dr's put me on antibiotics and were watching to see if I had another spike in fever over night- that did not happen. They also mentioned that as my WBC increase, I will have more energy and be more active and this will all heal on it's own.

So I have been sitting up alot more, giving my lungs the chance to fully expand. They also left me with this breathing apparatus, and even over the course of the day, my lungs have gotten stronger. So that should all be taken care of in no time.

11/29- Today

My WBC count for today was 2.26!!!!!! Now that is quite the jump. I received one last shot of the Neupogen stimulant, so we should continue to see large jumps over the next couple of days. My WBC must be 5.00 to be discharged. They are currently weining me off the antibiotics and it sounds like my release day will be Tuesday.

I am also off the oxygen that I was receiving. It was very minimal to begin with, but it made a huge difference. I think because I was more mobile today, my lungs are functioning better- more great news.

The only real issue now is regaining the strength in my legs. I can't walk as well as I could when I got here- and that is scary. My muscles are just so weak from not moving for those few days, I have to really work with them these next couple of days. Today, Mom and I did some stretches, and strength exercixes, but there's alot more work to be done.

Evan keeps asking if my legs are better, and unfortunetly at this point they are worse. But with hard work and perseverence, I will be sure to have improvement to show before I know it.

No one said it would be easy- But it WILL be worth it!

Good night to all- and all the comments I have received always bring a smile to my face. Thanks to family and friends for taking the time to read this blog and stay informed, and also for sending your love! I'll be home soon :)

Happy Thanksgiving!!

First of all- Happy Thanksgiving! I was hoping to be home spending it with my family, whom I miss very much, but I must say the turkey here was pretty good. I hope everyone enjoyed the holiday and ate more than they should have :)

So let's recap first on a positive note- my WBC count is still going up and is now at .04. At some point over the next few days those cells will begin to rapidly divide and we will see a major change in that number. So it is just a waiting game.

I am now on a total of four IV antibiotics. My fever comes and goes throughout the day. Last night it spiked and I was having some trouble breathing, so I have been on oxygen ever since. I also began to develop a slight painful cough, which they think may be pneumonia. Not exactly what I like to hear, but it's very common being that I was bedridden for 3 days. So they did a chest x-ray, and I am scheduled for a CT in the morning. The sooner we know- the sooner they can treat it- the sooner I'll be discharged. So it's all good- I'm where I need to be and have the utmost confidence in the team of doctors that they will fix all of this ASAP. So although I've had a few breakdowns because this is so overwhelming, the nurses and Dr's assure me this is normal and I will do just fine!

On another positive note- I took a lovely shower today. And I am happy to report that all hair is beginning to fall out (I pray not my eyebrows!) which is great, because I haven't been able to shave in two weeks. It was starting to get ugly lol.

I guess that's all! Happy Thanksgiving- Gobble Gobble!

A long awaited updated...

Sorry I have been MIA. But I'm back!!!

11/24 update:

WBC count for this day was .03. I woke up in the morning with a low grade fever. With no immune system they consider 100.5 a safe fever. However the fever escalated thoughout the day to 105 at one point. This hightened all my MS systems and even made my hands so weak I was unable to do most things- like type. They started me on broad spectrum antibiotics while they waited for the blood culture to come back so they knew exactly what they were dealing with. It ended up being a gram positive blood infection which they are now treating with an exact antibiotic. With the high fever came the worst headache ever. I tried Morphine but even that didnt help. I now use Norco to control the pain- it's a mixture of tylenol and Vicodin.

This is also the day I started my period. I have taken an injection called Lupron which is supposed to prevent it from coming- but that didnt happen. Needless to say I also needed to receive red blood cells and 2 sets of platelets. They want both of those numbers higher than usual because I am losing blood. I had an allergic reaction to the red cells so now I take Benadryl first to avoid the itcing sensation.

My Wonderful Auntie Robin went back to her family. It was so nice to have here her. I am thinking she may need to borrow my bright orange "Fall Risk" bracelet. haha. Thank you so much for taking the time to visit :)

11/25-

My WBC count for this day was 0.00. Because I still was receiving red blood cells and platelets my Dr.s decided to do another blood draw to make sure they were both moving up. During the second draw my WBC was .01.

I still had a fluctuating fever throughout the day and an awful headache s0 I was basically bed bound for those 2 days. They ended up giving me some steroids to give my body a break from the fever.

I also managed to make an "appointment" with Mary the LPN so she could shave my head. My hair had started coming out and I didn't want it all over the place- that would skeeve me out. So now I have a buzz cut and the stubles and falling out as well. It took me a little while to come to terms with it and actually look in the mirror- but it's not the end of the world.

Today-

I woke up feeling pretty good today. But before I knew it I was being brought down to have an ultrasound of my stomach and liver. My stomach was hard and distended the day before, and apparently my liver enzymes were elevated, but everything came back normal. The lack of muscle relaxers in my system at that time caused my legs to constantly shake and drained all my energy. I took a nap, but my fever kept coming and going again today. So another bed bound, usless day.

I am currently receiving platelets and red blood cells because at the mid-day draw they had dropped again. And at this point my WBC count is .02. It's slowly moving in the right direction and hopefully when this infection is over with we can start to see the numbers climb alot higher.

So all in all the last 3 days have been a major setback, but it was expected at some point that I would get a fever. So fingers crossed the next few days I elevate my numbers and then I'll finally be released! :)

That's pretty much the whole re-cap. I will continue to try and post daily to avoid this in the future! Nighty Night!

Day 12

If I hadn't mentioned it before- my mouth hurts! My gums are very sore and this is all due to the cell breakdown from the Cytoxan. Brushing my teeth feels amazing and definitely provides some temporary relief. The doctors are montioring them closely so that sores do not develop. Other than that, the nausea is still under control, and my legs are still as weak as they have been since this process started.

On another note- my WBC count is finally going up! Today it was .06!! That's up .01 from yesterday. Haha. Obviously not a huge gain, but we are atleast moving in the right direction. I've had 3 shots in total, and expect the trend to continue at a much more rapid pace over the next few days.

I must give a SHOUT OUT to Dr. John (The chemo Dr.) for overseeing my care for the past 2 weeks. His round on this floor is done, and there will be someone new replacing him tomorrow. I hope you visit this blog-feel free to comment- and thanks for understanding "The Graceful Slide"!

My Wonderful Auntie Robin is leaving tomorrow afternoon, so we had one last party in 1026! Giordano pizza is amazing- for any future HiCy-ers. I highly recommend it.

Nighty Night! :)

Day 11

My WBC count for today was .05! This accounts for even more leg weakness and an overall tired feeling. Needless to say, I bonded with my pillow quite a bit today :)

Nausea is still an issue, but I have learned to double dose for those special occassions. Like tonight- The girls and I ordered Chinese food and it was very yummy!

My favorite sister in law is leaving tomorrow morning to go back to RI. Another big SHOUT OUT to here for coming to visit- it was great to have her here and change the mood a bit! We had plenty of good laughs!

I also received my 2nd Neupogen shot today. The Dr still believes my WBC count for tomorrow will bottom out to .00, but then we should be seeing an upward trend.

We'll see what tomorrow brings- Goodnight to all!!

What a day!!!

So after some minor miscalculation- I ended up starting Neupogen today. Odds are my WBC count will still drop tomorrow, but then we'll be on the upside of things and wait for the WBC to return to a safe level - 1.0- and I will be discharged. In the meantime, I can expect to develop a fever, that may not necessarily be related to infection, so they will closely monitor me and provide broad spectrum antibiotics to contain it.

On another note- I had some visitors today! SHOUT OUT's go to My Wonderful Auntie Robin and My Favorite Sister-in-Law, Shannon!! They traveled all the way here to keep me company for the next few days. We ordered some local pizza- per the advice of Mary the LPN- and it was amazing. I doubled up on my anti-nausea meds, Zofran and Ativan, and had a feast! Party in room 1026!

And although my Amazing Boyfriend, Haigaz, could not accompany those fine ladies on their journey- I must also send a SHOUT OUT to him for the gorgeous pink sapphire and diamond bracelet he sent. You're the best! Love you, babe!

That's all folks :)

Quick Update

Not much has changed today. Still experiencing alot of muscle weakness and fatigue. So needless to stay- I have spent a lot of quality time with my favorite pillow that I brought from home.

I certaintly need to take this oppurtunity to thank everyone who has called, e-mailed, posted, etc sending their best to Mom and I. Having all this support back home makes this journey that much easier. And a special "shout out" goes to Auntie Nancy for the daily uplifting cards with pictures from home. I have them posted on the wall corkboard and they always bring a smile to my face. Thank you :)

WBC count for today was .39!
It will continue to approach 0, but may not actually get there. Regardless, Saturday is the day to start the Neupogen (bone marrow stimulator) and that will put us on the upside of things. I'll be out of here before I know it :)

1 week down...

Yayyy! New changes took place today. I was finally able to take a real shower :) which felt great. The nurse changed the dressing on my incisions and they are no longer covered up by gauze- just a clear plastic covering. I was alittle surprised of the length of the incision on my neck- but I am sure it will heal nicely in time and the scar won't be as bad. A small price to pay for all the good I pray that comes from this treatment!

Today I was officically declared neutropenic. This means I am no longer able to leave my room, and those that enter must have gloves and masks. I am also no longer to eat fresh fruit or vegetables due to the possible bacteria content. I will certaintly miss my salads- but it's temporary!

My WBC count for today, 11/19, was 1.15. This will continue to fall until the 22nd when I receive Neupogen to stimulate my bone marrow to produce new cells. The lower my counts get, the more fatigue I feel throughout my body. Again, a small, and temporary, price to pay.

Nausea is still my only constant issue but between Ativan and Zofran I am keeping comfortable and even managed to eat a Devil Dog last night :)

Day 6

So I guess it wouldn't be chemotherapy if I didn't throw up atleast once, right! That happened at about 2 am this morning. I had just taken some oral Ativan, but that was no use. I did feel much better afterwards- so all in all, not too bad.

This morning was rougher than usual. I slept most of the day due to complete exhaustion. This is all due to the cell death occuring in my body. My legs are like jello, rather than stiff like they usually are. Unfortunetly, the lack of strength will get worse before it gets better. But it seems late afternoon I tend to get my second (well actually 1st) wind and I am much more energized and can be somewhat productive.

The Doctors expect I will be neutropenic by tomorrow, which means I will not be able to leave the room due to high susceptibility to infection. But the sooner the numbers drop- the sooner they can rebound- and I can go home :)

My WBC as of 11/18- is 2.22

At the bottom of the blog I added a poll- feel free to take part and leave your opinion!
I am working on getting pictures and videos on here as well.
Stay posted :)
As always- thanks for the love and support!

Day 3 and 4

Day 3:

After the 3rd dose of Cytoxan I began to feel a highten of side effects. More nausea and the start of diarrhea. The nausea has always been controlled pretty well with Ativan, so we continued on that regimine. Unfortunetly, when diarrhea began they needed to take several samples and test it for certain bacteria before they can give you Imodium. Needless to stay I spent a good portion of time uncomfortable and in the bathroom- not much fun.


Day 4:

Diarrhea and nausea continued... but thankfully the tests for bacteria were negative and I was put on Imodium and I am feeling much better. As my numbers continue to drop, I was advised to no longer shave my legs until my platelet counts come back on the rise. So thinking ahead, I packed Veet and Mom and I had some fun getting that done today. 24 hrs after my last dose I am excited to report I will no longer be hooked up to the pole receiving fluids. That change will take place tonight at 10pm. This should certaintly allow for a more peaceful sleep- not having to get up every hour and pee :)

A few things to note- although the nausea has been well controlled by Ativan- there is a definite lose of appetite. I dread the food tray's entry into the room- I know how good it will all taste- but I am so not in the mood. Hopefully this will change soon because we have a room full of my favorite snacks that I'd love to dig in to :)

Here are the results of my blood draws since the start of Cytoxan. The main goal is to get my White Blood Cell Count down to 0- and then begin to bring it back up. Here's where I stand:

Date WBC count

11/13 7.55
11/14 10.41
11/15 7.16
11/16 4.11

As you can see, after the 1st dose there was a jump in my WBC count. This is because your body has WBC in reserve and whenever a foreign agent is introduced, your body takes those reserves and puts them to action. But... they were no match for Cytoxan. The numbers are nicely dropping and I will continue to post those results as we fall toward 0.

Day 2 continued...

The rest of the Cytoxan infused with no problems. I did wake up in the morning with alittle nausea, I requested Ativan, and it quickly subsided. Nothing much else to report. Mom went to the apartment to shower and grab a few things. When she returns we can wash my hair and I can spend some time flat ironing and curling and all that girly stuff :) I'm sure we will get out and walk the corridors today. I have moved around the room alittle bit and think it will go well out there and boost my energy level.

On another note- Hospital food is pretty good. All different things to choose from- and being that I am not too picky- I have been eating very well! :) We also packed a ton of snacks- some comforting food from home. My favorite- Devil Dogs! haha Who says you have to loose weight when you do Chemotherapy! lol

So now that I have dedicated myself to this blog and plan to share it with the family- none of this would have been possible without my Mom. I am trully greatful beyond words for all that she has done to keep my spirits up and constantly motivate me. Not to mention she also gives a great sponge bath :) I may not say it often enough- but Thank you Mom, and I love you!

HiCy Day 1 and 2

11/12
I was admitted on the 12th and had the triple lumen cathater inserted. Everything went well-however I did wake up in the middle of surgery- and when they heard me moaning in pain- I asked for more meds. Next thing I knew- surgery was done and I was on my way to my room.
I was pretty sore, but that was well controlled by vicodin throughout the day. I then started 6 hours of fluids before receiving Cytoxan around 10:30pm. With the premed coctail- I slept through most of the 2 hours and had no side effects to report. So far so good!

11/13
Mom and I woke up pretty early. Had a lovely sponge bath, then got ready for the day. My intent was to walk the corridors, but my legs were extremely stiff. Dr. Balabanov explains this is due to the cell death within the body causing transient MS symptoms. So, it will pass. I met with another MS doctor, Dr. Tawali, and she perfromed the normal tests on me to get more insight. That alone was exhausting, so my Mom granted me a nap, and we decided to hold off on walking the corridors. :)

I had a surprise visit from Kathy, a lovely lady who underwent this procedure a few months ago. I found her blog on the internet and she has been kind enough to share many inside tips that made this transition easier. I am very thankful! We spent a few hours chatting and my hope is to come out of this as well as she has. Definitely an inspiration.

It is now 10:35 (11:35 for those back home) and I am in the middle of my second Cytoxan dose. Prior to the start I had some nausea and a headache, but that was easily controlled by Ativan. What I've learned is not to suffer in silence. They have something for everything here and to speak up and take advantage of it. That's about all for now. Time to get some rest and see what tomorrow brings! Goodnight!

Happy Halloween!

I love this time of year. Evan is dressing up as one of his favorite WWE wrestler- Rey Mysterio. I think I am more excited about tonight than he is though. I can remember trick- or- treating through different neighborhoods with my Mom and brother and best friend each year. It was so much fun, and seems like only yesterday. My only stipulation about starting HiCy was it had to be after Halloween. I am hoping by this time next year I won't need the wheelchair to do the plat near my house. 3 years ago I was able to do it using a walking stick. I can remember how much my hand hurt from relying so much on it for support, but I still did it!

11 days to go!

I plan on taking some video this weekend of how I walk. This is completely against my pride and out of character, but if I had not seen Chris' before and after video I would not be a believer of HiCy. Plain and simple. I wouldn't feel right if I didn't share my complete story with those who are interested in the treatment. I hope to have results like Chris and make another MSer a believer too.

Also a big "Thank you" to Kathy for providing me with so much insight on this procedure. You have helped immensely to make this a smoother process. Thank you :)

Also to my entire family- So many people have called for updates and sent their love and prayers from day 1. This process has made me realize how lucky I am to have such a strong support network around me and that has given me the confidence to continue on in this journey. Thank you!

Getting ready

So I have begun preparing for my 3 weeks away from home. I went out and bought a bunch of lounge clothes so I am comfy in the hospital. New outfits will surely help keep my spirits up during this process! I bought a wig! (Boy are they expensive... $800+ later, I am all set for that fright filled day. Insurance should reimburse me $350- so it's not too bad.) And thanks to my boyfriend- we set up the web cams today so I can keep in touch while I am gone. Everything is coming together nicely.

I am trying to think of it all before I go- hoping to avoid any unnecessary stress- and make the transition easier on everyone, especially Evan. So far, so good :)

17 days to go!

1st trip to Rush

So my Mom and I went to Rush October 16th and 17th to meet Dr. Balabanov (MS doctor) and Dr. Shammo (Oncologist). The 16th was a very long day. Between the flight and sitting around at the hotel for a couple of hours waiting for my appointment- I was extremely stiff. I knew a criteria for this treatment was that I needed to still be able to walk, and that showing up in a wheelchair probably wouldn't go over to well. There was alot of hesitency on Dr. Balabanov's part on whether or not I was mobile enough for the procedure. As he explained, they can measure improvement alot better when the patient is ambulatory, and it also helps to fight infection etc. I assured him I still walk, with assistance, but I was just very stiff right now. He kept wanting me to tell him how far I could walk on a normal day- and I was getting annoyed that he was doubting me. So finally, after a few minutes of stretching, I mustered up the energy to walk down the hallway and prove myself to him. Thankfully he was satisfied and we continued on with the visit. I did the 25 ft timed walk and some cognitive testing, and I was on my way. My Mom and I went to the 11 diner and had dinner and a few drinks that night. It was just what I needed after that visit!

On the 17th I met with Dr. Shammo to discuss all the potential side effects/ risks of the treatment. It was nothing that I did not already know, but it certaintly becomes more real when your sitting face to face with the doctor, rather than reading it on some website.

Obviously I am going to lose my hair. That is not something I am looking forward to- I am sure I will have a mini melt down when the time comes- but it will grow back and i'll get a pretty wig in the meantime.

Sterility/ Early Menopause- I am blessed to have an amazing 6 year old son. Dr. Shammo was concerned that being only 23 I may want to speak with a feritility specialist about freezing my eggs before treatment. I declined with the mindset that when I get well enough to consider having more children, I will use that energy to be a better Mom to the son I already have.

Leukemia/ Heart damage- These are the ones that really get me. Chemo is essentially a poison to the body. The risks are only a small percentage- but a very real percentage. I've decided to try not to think about it- whatever happens, happens.

So now we wait. I am meeting with the surgeon, Dr. Wool, on November 11th. On the 12th I will be admitted and have surgery to place the central line. After that, I will begin treatment. Thanks to Amy in Dr. Shammo's office, my Mom has an apartment to call "home" 1 1/2 blocks away from the hospital during our 3 week stay in Chicago.

That's all for now... there's alot of planning and shopping to do to get ready for this "vacation!"

Nothing ventured, nothing gained!

So, a few months back I came across the news report on HiCy and the woman who had gone through the treatment. She spoke of her rapid MS progression and how disabling it had become. The report showed her confined to a wheel chair- and then a live video of her running in the back yard. That was enough for me.

The only guarantee with MS is that it will get worse. That more disabililty is lurking around the corner. The drugs that are available only boast to cut back on relapse rates. The ultimate goal is to stop the progression, and to reverse any disability that has accrued. HiCy has been shown to do both of those. That, to me, outweighs all the side effects and risks of the treatment.

It's so easy to get lost in this disease. To live day to day coping and finding new ways to get things accomplished. It's not until you stop and take a look at what you can no longer do, or how much harder it is to get certain things done, that you realize what the disease has taken from you. I almost feel like I don't deserve to have HiCy. Or that I shouldn't have pushed so hard to get approval. I know how much worse off I could be, but I would be a fool to wait until I got to that point to persue this treatment. I want to be as aggressive with this disease as it has been with me. Fight fire with fire. So here I am.

I don't have a scheduled date to start the treatment, but I am going to Rush University Medical Center in Chicago on October 16th and 17th to meet with Dr. Balabanov (MS doctor) and the Oncologist. I am hoping to get started the beginning of November.