Sunday, November 30, 2008

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 :)

Saturday, November 29, 2008

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 :)

Thursday, November 27, 2008

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!

Wednesday, November 26, 2008

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 :)


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.


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!

Sunday, November 23, 2008

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! :)

Saturday, November 22, 2008

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!!

Friday, November 21, 2008

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 :)

Thursday, November 20, 2008

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 :)

Wednesday, November 19, 2008

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 :)

Tuesday, November 18, 2008

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!

Sunday, November 16, 2008

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.

Friday, November 14, 2008

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!

Thursday, November 13, 2008

HiCy Day 1 and 2

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!

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!