Next Chicago Trip

Yesterday I got a call from Dr. Balabanov's office saying that I need to go see him in February. Cory said that he feels strongly that I follow up with him instead of my local doctor. So, I booked the flight this morning. I will go out and return on February 17th. I will see Dr. B and Dr. Stewart. Aside from this there isn't much else to say. I continue to improve and am looking forward to a new and improved 2010! Happy New Year!

Doctor Visit

On Thursday morning I decided that it was time to see my local neurologist. They got me in that afternoon. I wanted to show him my progress and also talk about CCSVI which I had heard about a few days before. It stands for chronic cerebrospinal venous insufficiency. I guess the theory is that there are blockages in the veins that don't allow proper drainage of certain substances and that this is the cause of MS. I admit that I haven't done a ton of reading about it but I'm curious enough that I wanted his opinion on it. He said it's just a theory but mentioned a study that is going on in Buffalo. I meant to get info about the study from him but forgot to. It's an interesting theory to say the least.

His nurse asked me how I'm doing in general after the chemo and I only had positive comments. She asked me why I thought that this treatment isn't availabe to everyone. She said that, in her opinion, the low dose, monthly chemo treatments aren't helping his patients. I told her that Dr. Balabanov said that treating MS with chemo in that way is like cutting hair. It makes it short for a while but it just grows back. She asked me to tell him that. I didn't since I had mentioned it to him before. I think he's quite skeptical about this.


During my exam I neglected to ask him if I could do the strength portion last. Once I exert myself it takes several minutes to get back to normal so when I was asked to run my left heel along my right shin I couldn't do it. I left feeling like he was none too impressed. I did say to him after the exam that I wished he could have seen me walking around the waiting room. Oh well. I got a couple of refills and made another appointment for 6 months from now.

Still no monthly period. My hair is growing out of control in all the wrong places but I have amazing energy, still. That's about it for now.

Checking In

Just a small update here. Not much new to report. I'm still feeling really good and have tons of energy. Lately I'm concentrating on getting things done around the house. The weather has been cold and rainy so I haven't done much (anything) outside.

My hair is growing very quickly, some areas faster than others. I still haven't had a period since September so I'm guessing I'm going into menopause. I still need to wait a little while before I can have my hormone levels checked. I haven't gotten anymore work since it's such a busy time of year but I think after the new year I'll find more. I am working tomorrow and one day next week.

I've decided it's time to lose a few pounds. I'm eating much better and much less than usual. I'm sick of having my 'fat' jeans not fit. So I'm laying off the carbs I love so much and eating a lot of fruit and veggies. So far so good. That's it for now!

Please check out this link

Over Thanksgiving Andy, the kids and I went to see Jenny and family. She is the woman that not only told me about Hi Cy but also had it herself. I couldn't believe how well she is doing. I was blown away!

I would love for you to watch the video she posted on her blog. It shows her before Hi Cy and one year after the treatment. It brought tears to my eyes. Please, please watch it. It speaks volumes about this treatment.

The link is on the right side of my blog and here is the link again:

www.rebootingjenny.blogspot.com

Three Month Visit

On November 13th I saw Dr. Balabanov. He is happy with my progress. I also had blood drawn for a DNA thing I'm participating in. That's it. Not much more to say. He wants to see me again in 3 months but I can't afford it. I'm going to see if I can see my local neurologist. That trip cost us about $1100. We had a great weekend though. We went to the Chicago Institute of Art. I was able to walk around for a few hours without trouble. I also walked through 3 airports on the way there, again, with no trouble.

A couple of days after we got back I started feeling sick. Sore throat, coughing etc. I was so ill on Wednesday morning that I couldn't even make it to the bathroom when I got up without having an accident. Andy had to dress me. I wasn't much better on Thursday morning. I finally decided to go see my doctor Thursday. She didn't test me but concluded that I had the flu. I remember having the flu about 10 years ago and I thought I was gonna die so I have my doubts about having it this time around. But, the point is, it kicked my butt. My temp never even got above 101. I'm feeling good now though!

Happy Thanksgiving!

Halloween and Other Stuff

On the day before Halloween my 5 y/o came home from school with a temp of 102.2. He seemed to get over it pretty well and we made it out the next day for trick or treating for a short time. I started feeling a little yucky that afternoon and I had some walking trouble Halloween night. I made it though and I didn't fall. It seems like one of us is always sick lately.

I've really been pushing myself. I'm back to using the Velcro foot lifter apparatus and it helps me move faster. I've gotten mighty bored in the house so I decided it was time to try to go back to work. I had been cleaning houses before we had kids and I was doing two a day. It was hard work and I've been nervous about getting back into it but had to try. My butt isn't getting any smaller sitting around the house.

I'm no where near as strong or fast as I used to be but it feels good to be back at it. I only have two small jobs and I think I'll get a couple more so I have two a week and I'll stick with that for a while. I was originally planning to wait until after the new year. I'm exhausted when I get home but it's a good kind of physical exhausted!

Andy and I are flying to Chicago on Friday. I had my blood work last week. My hair is getting longer all the time. I still have loads of energy. I'll report about my visit with Dr. Balabanov next week.

Menopause?

I saw my Ob/Gyn this morning. I told her about having to go on the Pill while I was in Chicago and how I had a period a month later. I haven't had one, however, since September. She said I could be experiencing early menopause but we wont know for at least a few months. If I am having early menopause then I will need to go on hormone replacement therapy. She said I'm too young to go through it at this point. So, I guess it's hurry up and wait on this issue.

I'm feeling as good as ever and my walking continues to improve. Last weekend I noticed that walking down hill has become MUCH easier for me. I had been feeling that it might be but finally decided that this is the case when I had to walk down a ramp at a local school. I'm very happy about it, obviously!

On Sunday I attended a 'neighborhood re-union' party. I was one of 4 people there that has MS. The neighborhood that I grew up in is very small. There are at least 7 (that I can think of) people in the neighborhood with MS but 3 of them didn't grow up there. I've heard of cancer clusters but MS clusters?? I don't think it's anything more than a co-incidence to be honest but I find it interesting just the same!

Just an Update

This morning my 5 y/o said "Mom, your walking is almost normal." I said "yeah, pretty good, huh?" I'm feeling good and have had some really good walking days. I've been very busy around the house and over do it some days. Last Friday I spent the day cleaning carpets. My machine is bulky and heavy and it did a job on me. By the end of the day it was time to head upstairs with it but I had to wait for Andy to get home and haul it up for me. Then I did the upstairs. I ended up doing our room a couple of times because the dog had a major accident on our rug Saturday night. (that's never happened before and it figures she waited until after I cleaned the carpet!)

With the cool weather I've been eating like there's no tomorrow. I am getting myself psyched up to go to the gym this morning. I've really packed on the weight. Over the weekend we went apple picking and I walked through the orchard fairly well. It was grassy and that is usually a problem for me but I didn't even trip.

My hair is really looking good. Well, I don't know about good but it's growing like crazy. I have to wear a hat most of the time with the cool weather. I don't know how bald people stand it. Maybe I'm a wuss from not having had to ever deal with it before.

I received a slip from Dr. Balabanov's office last week for blood work that I need to have before I see him. I'll wait until about a week before I go so he can have accurate results. I'm still taking the 50,000 IU of vitamin D a week with no problem.

OK, apple pie is calling from the fridge. I need to get out of here!

Back to Chicago

A few days ago Cory, from Dr. Balabanov's office, called to remind me that I need to be taking Vitamin D and that I need to see the doctor again in late October or early November. I told her that I've been having trouble with the OTC Vitamin D. I didn't tell her that it had been weeks since I've taken any. She said I could go from 5000 units a day to 3000. I tried it and it still made me feel kind of sick. This morning I called the pharmacy and refilled my script for the Vitamin D. It's for 50,000 units a week but I figure that I'd rather take a little more than none at all. I've taken it at 50,000 units weekly in the past with no problems.

She set up an appointment for November 13th for me to see the doctor. He usually doesn't see patients on Friday but made an exception which I greatly appreciate. Andy's birthday is November 10th so we will make a weekend of it. I'm very much looking forward to hearing all of the positive things he has to say!

My hair is growing back like crazy. Not only is it getting longer but it's really filling in. I think that by the end of November my head will be covered. I'm still finding projects around the house that need doing. Yesterday I was moving furniture. One of the kids came home sick from school last week with a mild stomach bug. I remained unscathed. I did take him in to be seen by the pediatrician just to safe though.

I received a call from someone who is interested in this treatment today. I welcome the calls! I think it is important to get the word out about this so if anyone reading this would like to talk to me or email me directly or know of anyone that would please let me know. I believe in this 100%.

More Improvements

Today I went to BJ's Wholesale to do some shopping. I got up to the register and realized I didn't have my debit card to pay for the things I was getting. I had to walk out to the car to get my wallet and then walk back in. I didn't push a carriage for stability when I walked out. I felt totally confident. I never felt like I would trip or even worried about it. I paid for the items, left the store, loaded everything into the car etc. without a problem. When I got home I brought everything into the house and into the cellar. I usually leave everything, except the refrigerated items, in the car for Andy to deal with.

When I got everything inside I decided to wash down the shelving units in the cellar before I put everything away. This took over three hours. I had no trouble with this. I still feel great. This treatment has been amazing for me. I can't say enough positive things about it!!

Walking

I'm very excited about my walking lately. I just got back from the bus stop and, beside a little jerkiness in my left knee, I'm walking almost normally. This morning as I was putting my jeans on I bent down to pick up my left foot to put it into my pant leg but I didn't need to. It was already there! That was amazing to me! I yelled to Andy to look and those few seconds of holding my foot there blew my mind. Then I got up and stood on my tip toes without almost falling over. Wow, am I going to improve faster than I've been thinking I will? Have I rounded some sort of recovery corner? Time will tell.

Still Feeling Good

I've been working around the yard and the house lately and I'm doing very well. Just today I noticed how much my walking has improved. Some days if I really push it I'm not so great with the walking but otherwise I notice that it's better. I'm doing things that I normally wouldn't attempt because I'd be scared to take the chance. This afternoon I walked to a local store that I usually drive to. I had to walk through some woods on the way and I was fine! On Friday I got the front yard completely weeded and cleaned up. I was sore by the end of the day but felt good.

I've been making myself move 'normally' instead of avoiding it to save energy. Instead of sitting on my bum, turning and pulling myself up with something from a kneeling position I just make myself stand. It takes a while and makes me sore but those muscles haven't been used like this in quite some time. The point is- I can do it now. I consider this my physical therapy.

When I've been working and get tired and need a break my breaks aren't as long as they used to be. They're about 15 minutes compared to at least an hour. I can get back to what I was doing much more quickly. It's all very encouraging!

My hair is growing back and is about a 1/2" long on my head. It's growing faster in other places. I'm sure I'll be the hairy goon I've always been in no time. I'm able to get up in the morning and get the kids off to school with no problem. I still have energy to spare. I see the neighbor's wood pile and want to run over and split wood!

Small Update

There isn't much to report at this point. I'm feeling good and I've been active. I have some allergy trouble or maybe even a cold but other than that I'm well. I've been doing yard work and still feel good afterwards. We are having a deck put on the house and today I did some hammering. I admit I did have trouble holding the nails with my left hand after a while but shortly after I stopped my hand was "back."

My head hair seems like it's growing again and I had to shave my legs the other day for the first time since I was in Chicago. I also got my menstrual cycle so I assume the chemo didn't cause early menopause as I was told it could. It seems a little off the normal course but not much. My energy is still good and in general I'm pleased with my progress. I wish I had more to report but I don't. Just enjoying the weather! Hope you are too!

Tip Toes

In yesterday's post I forgot to mention that the other day, as I was kissing Andy goodbye for work, I got up on my tip toes without even realizing it. Once I did realize it I stepped back and said "did you see that?" and I tried it again. My balance wasn't so good but I could do it. I haven't been on my toes (left foot) in years! Last night's energy burst had me vacuuming the upstairs at 8 PM. Lovin' it!!

Improving

It's been quite a bit cooler and dryer here lately and I'm feeling good! I've made great progress with the yard work and today I started in the house. The kids started school so I spent 5 hours cleaning their play room. It's a small storage/attic area that I can't stand in so it did a job on my back but other than that I did very well.

Instead of the afternoon fatigue that I'd been having I now have afternoon bursts of energy! This afternoon I had to go to pick up a kitchen sink that I had special ordered. I was able to walk through the (very large) store without a carriage and I never worried about falling. It was a great feeling.

My hair is starting to slowly grow back on my legs (oh well) and one or two eyebrow hairs had to be plucked this week. The hair growth on my head seems to have slowed to a crawl. I still haven't worn a wig but I did come close to wearing it at a wedding last WE. The wedding was outside, in the drizzle and on a slope. I was very nervous about slipping (a few people had fallen) so I had a death grip on Andy whenever I walked more that a couple of steps. I didn't fall though. I was on my feet the entire time except for about 15 minutes that I sat to have some wedding cake. I was sore the next day and felt like I had gone skiing for the first time in years. It felt good.

Now that the kids are in school I can concentrate on exercising and getting things done. I need to get the house in order first. So, bottom line is things are looking good!!

Oh, by the way, another woman that had this treatment last year spoke with Dr. Balabanov about 2 weeks ago and he told her how amazed he was by the improvements I had in Rush! I was very happy to hear that!

What's Going On?

I'm going to chalk it up to the heat. I haven't been doing well the past several days. Everyone I talk to feels the same. Once I've been in A/C for a little while I do much better. The humidity has been low enough that I haven't felt the need for A/C in the house. Once I get running around with the kids and household chores, though, I feel unsteady. I'm refusing to let it get me down.

The Vitamin D I am taking is making me sick to my stomach. I've tried several methods of taking it and nothing works. It's interesting since it's only 500 IU daily. I had been on a script for 50,000 IU weekly and never had a problem. I may try another OTC brand or even call the doctor for a script.

I had an appointment with my local neurologist for tomorrow. I cancelled it today since my intention was to walk in there and show him my new abilities. Not gonna happen this week. I think with both kids being in school full time next week I'll be able to take better care of myself.

I broke down and did some weeding last night. I found plants (perennials) that I had forgotten I planted. The weeds were literally knee high. That made me feel good. I think I'm going to slip into the neighbor's pool while Andy has the kids occupied and do a few laps. Sweet Peace.

Gardening Decision

Dr. Shammo, the oncologist, called tonight while we were at the beach. She said that even though I am at a normal level for white blood cells my immune system technically still hasn't recovered. She said that if I feel I need to do any gardening then to be extremely careful, to wear a mask and wash my hands well afterwards. I will only pull weeds to be on the safe side. I wont do any digging in the soil. That's all I really need to do at this point anyway. What a relief!

More of my Confusion

The oncologist's office has been answering questions from me again. I still haven't heard if I'm OK to do any gardening but a normal white count for anyone is between 4. and 10. (4,000-10,000) I heard one of the nurses at Rush say something about 50,000 and I obviously misunderstood what she was saying. So, I am at a normal level.

I noticed last night that my eyebrows are very thin. I usually have to pluck them every day and I haven't touched them in about a week. I think my hair is still falling out in places. That's OK with me as long as I don't lose them completely. The humidity is still taking a toll on me but I have the A/C going again today and I feel much better. I was going to attempt to take the kids to the beach but the humidity is at about 84% right now so I wont chance it. I may get on my bike today (it's on a trainer inside) to get some aerobic exercise. I need it. I found those 7 lbs. I lost in the hospital. A few extra lbs., too!

I still have energy to spare in the morning but I'm getting tired by the afternoon. I am going to blame the heat for that. I think most people are feeling the same. The kids have decided that I look better with a head scarf instead of a wig. I'm glad. The wig is hot. I think they're coming to accept Mom as baldy!

White Count Explained

I just heard from the oncologist's office at Rush. She said that my white count was 3150 when I left and that at 5900 on Friday I am at a normal range for this point in time. OK, I'm feeling better.

Good Article to Read

In the side bar there is a link for Stu's Website. If you click on this link there is an article by Cherie Binns that is worth the read. Cherie is a nurse with MS and I think I can say that she speaks for many of us with her personal story of what she went through getting correctly diagnosed. I highly recommend it.

White Count Update

I had blood work done on August 14th. My white count was only 5.9. I am quite surprised by this. I thought I'd be in the 20,000 range at this point. I emailed the oncologist's office at Rush to ask them about it. I wonder if this is why I get so tired in the afternoon. My walking gets better in the evening when it cools off so I'm happy about that. I took the kids school shopping today and I did OK. I even dared to walk across a couple of parking lots without the carriage and the temp outside is 97. I'll post again when I hear from the oncologist.

August 13 2009

The weather has been sticky and hot here in Southern New England. I wasn't sure what to expect. Was the heat going to bother me as it always has? It has. I must admit, though, that I still have full use of my left hand. My walking has been as difficult as it has in the past but as soon as it cools down in the evening it's gotten better when it never did in the past. I'm greatly encouraged by that.

My hair never completely fell out (close) and it's already growing back. I have yet to put my wig on. My skin is as dry as ever and I totally blew it the other day when I spent some time at the beach without being under the umbrella. I tried, since I'm no sun worshipper, but it blew down one time too many so I gave up. After being on IV anti-biotics for a week and then oral anti-biotics for a few days I should NOT have been in the sun. I did use sunblock but it didn't do enough. Big mistake.

In general I have to say I'm feeling pretty good. I am going out and doing things with the kids that I never would have attempted a few months ago. I guess I just feel that it's only going to get better at this point so why not? It's refreshing after all these years of being afraid to venture too far from the house. The kids seem to have gotten used to me being bald and haven't even suggested that I wear my wig when we go out. I just wear a hat and I'm more than comfortable.

Great Info on MS

Hi Everyone, there is a link on the right where you can register for a weekly, online MS newsletter. It contains lots of great information. Pass this on to anyone you think may be interested. Click on the MS Views and News link to register. ( the second link) I highly recommend it.

Contacting Rush

Rush University Medical Center is in Chicago. There is an MS Center within Rush. The doctors in the MS Center are Roumen Balabanov, MD and Dusan Stefosky, MD. The phone number is:
312.942.8011. The website is: WWW.Rush.Edu

I recommend checking out this site for more info about high dose cyclophosphamide:

www.gothicy.com

I completely believe in this treatment and would recommend it without reservation.

August 8th 2009

So here it is Saturday night. I've been home exactly 2 days. I feel great. My energy level is amazing. I didn't have any trouble with the dressing on my wound from the line and I've changed it twice. At this point I have a regular band aid on it since the gauze was drying into the scab.

I got a wig today from a place that was recommended by the cancer society. It was quite a bit more expensive than I thought (almost $300) but that's OK. It's nothing great (it's a wig after all) but it will certainly do for the times I'm in public and feel that I need it. I find that the bald head is quite liberating. I have no issue what so ever just going out with a hat on but the kids want me to have hair when I am out with them. It looks fairly natural and the woman that owns the shop I went to was fabulous.

I have an amazing amount of patience with the kids. I think it's because I have energy and can think clearly. They have also been very well behaved since I've been home. The bickering that is usually constant has all but ceased. Andy has become a regular Mr. Mom and I love it. He is out fishing for the night and he certainly deserves the break.

When we got up this morning I showed him how I can lift my left leg and bend it. I have lots more flexibility and even my typing is easy since my left hand doesn't tire like it used to. I just want to go, go, go!

I started taking 5000 IU, daily, of vitamin D this morning since Dr. Balabanov wanted me to. I was on 50,000 IU a week a little while back but didn't see any improvement. I am a firm believer in the benefits of Vitamin D, however. I want to clarify that the reason the surgeon didn't want me to leave on Thursday is because he was afraid that the wound would bleed on the way home. His office called Friday to check on me.

I will get around to posting about the whole experience, from start to finish, including how to get in touch with Rush, as soon as I get a chance. Right now I'm trying to get back to a regular routine. At this point I can't say enough good things about Rush and this treatment in general. More soon!

HOME!!

I walked in my front door last night at 9 30. It's good to be home. Dr. Wool pulled my line out at about 2 30 and they told me that my counts had gone high enough to go but didn't recommend it. Well, being the very impatient patient I had already decided that I was leaving. I checked out some flights online but it was too late to book online so I just headed to the airport and got on a flight that I had looked at online. I left at 4 40 (CT) and landed in Boston at 7 35 (ET). I feel great and Andy definitely sees a difference. I will post more once I get myself settled and pick up my boys. I was there 16 days. Wow. The other woman that was doing this should be going home today. Congrats to her!

Day 16

I haven't gotten my neutrophil number yet but my total white count is over 3000. I am (almost) going to assume that the neutrophil number is at least 1000. I'm looking at flights home for Saturday but being cautiously optimistic. More later.

Neutrophils

I found out this afternoon that my neutrophil count is only .34. This is the count that has to be over 1000 (1.0) for two days. I saw Dr. Balabanov today and he thinks being home on Friday is really pushing it. He said possibly for Saturday or Sunday. The problem with being released on the weekend is that the surgeon that put the line in, Dr. Wool, has to take the line out. He isn't here on the weekends. One of the head nurses said she'd ask if it's possible to take the line out on Friday and have another, smaller line put in my arm. That way if I'm released on the WE a nurse can take it out. She said she'd let me know tomorrow.

I've done a lot of walking today and I'm feeling really good. My walking is much improved. I also found out that I will not have to modify my diet. I got the blessing to eat all the fruits and vegies I'd like AND I can eat raw shellfish. The only limit I will have is gardening. I have to wait until my counts are completely normal for that. Sick people are out, too.

This afternoon I got bored and started playing with tape. I stuck it to my head and pulled out rectangular areas of hair. I really wish I didn't since I look like a freak. I had to do as much as I could but some hair still isn't coming out. Now I wear a hat when I leave the room. I do NOT have a pretty scalp. When will I ever learn to leave well enough alone???

Sixth Shot

Ready for this? SIX FIFTY, BABY! I went from .14 to .65 in a day! The neurologist said that once the count reaches 500 it usually starts to double. I am on Cloud 9. The nurses tend to give the straight deal a little better than Dr. B since they are here seeing it all day, everyday. I was told this morning that it's really my neutrophil count that matters. Apparently, there are different types of white blood cells and the neutrophils are the type that do the infection fighting.

I had trouble having my labs drawn last night. It seems that there was a buildup of clotting tissue (can't remember the name) around my central line so I had to have something injected into it to clear it and that took an hour. So it was 3 AM before blood was drawn and that is why I don't have my neutrophil count yet.

I met with a physical therapist and an occupational therapist yesterday and both agree that I don't need either. The OC gave me some Therapeutic Putty to exercise my left hand. I did several laps around the hallways and feel good about my walking. The hair on my head is easily pulled out at this point but not just dropping out.

As of yesterday's measure I've lost 7 pounds and the PCT said she was concerned but I assured her it's because I'm not living on pasta and the usual junk I love so much. In fact, when I first started having my counts taken I was asked many times if I am diabetic. (I'm not) Time to make some serious diet changes at home. I've already made them here.

The plumber was here again and finally fixed the hissing toilet. I slept much better last night. My plumbing is working fine, too. On that note I'm off to find coffee!

Fifth Shot

My white count went down a little bit yesterday. I can't remember what it is but it's NOT how I wanted to start the day. Platelets are up to 119 so I think it's safe to say that I wont need a transfusion. I need to start walking around more. I noticed my ambulation is deteriorating from lack of exercise. I don't want to leave my room but I have to do it. I'm skeptical about how much a paper mask will keep out. I asked my nurse about getting more Neupogen and she said the same thing my doctor had told me last week but had forgotten. If the cells grow too fast it causes a "crowding situation" that is undesirable. I also need to get better sleep. I woke up at
5 30 AM, totally wired, so I checked email and got drowsy again and got a couple more hours of sleep. The toilet in the bathroom is also hissing so loudly it keeps me up. The plumber was here on Sunday. I hope he comes back today and fixes it! I ordered more for breakfast today since I've been hungry an hour later lately. It's nice to have an appetite. Still no hair on my pillow.

Just got the numbers. I went from .18 to .14.

Fourth Shot

My counts for last night are: white .18 and platelets are up to 92. Today is the day that my hair should start falling out. It is. Just not from my head. I was unhooked from the pole indefinitely! I will now be taking an oral anti-biotic. I took a yummy shower and now I'm on the hunt for food. I need to start asking for more for breakfast.

I asked my nurse for her opinion on my white count and she thinks I'll see a bigger jump tomorrow. I also asked her to tell me, honestly, if she thinks there's a chance that I could be home this WE and said that she thinks there's a good chance. Yesss.

I also just saw something about Michael Vick possibly going to the Patriots. What's up with that?? Not happy about it. Keep me posted.

Third Shot

Counts as of 1 AM last night were: platelets 88 and white blood cells are .17. I had my third shot this morning. I really hope that my white count gets a lot higher today. All of the laxatives I've taken are finally helping. Nothing major but it's something. I will start taking them daily. It felt good to eat breakfast this morning and to actually be hungry. I had a restful night last night. My night PCT (patient care tech) brought in a pulled pork sandwich for me for dinner. She put cole slaw on it and let me tell you it's the best thing I've had to eat in a long time. She's a very sweet woman and I love the fussing she does over me!! I'm being lazy today since I'm quite tired. I'm doing crossword puzzles and listening to some old Chicago Blues. Nothing like it. The older the better!!

Second Shot

I had my second neupogen shot this morning. My white count as of about 1 AM was .18 and my platelets dropped to 81. I'm still washing down laxative pills with a liquid laxative. I'm on my third cup of java so somethings gotta happen soon!

Had a restful night last night but ended up waking up at 3 AM wired. I read the whole booklet of what I need to avoid when I get home. Gardening is one of the things. I can't even so much as re-pot a plant. Oh well.

I had a visit from another woman here that is literally a couple of hours ahead of me with this treatment and she and I decided that we are going to be the poster children for this treatment! I was unhooked from the pole for now. I had my dressing changed and the paper tape took a layer of skin off. I thought the alcohol with the new dressing would sting but it didn't. I guess it's normal that skin sloughs off with this. An hour ago I sat on my bed and lifted my left leg up, over my laptop and put it down without a problem. OK, that's all the news for now.

First Shot

I got my first neupogen shot this morning. I will have one a day until my white count starts to grow rapidly. It is a sub cu injection and I opted to have it in my stomach where there's a nice layer of fat. I didn't feel anything. The gauge of the needle is so fine that it's like a mild mosquito bite and I asked the nurse to push the plunger slowly. She did a great job. I showered and had my dressing changed. It will be daily now since we're using paper tape. I feel like my skin has been ripped off with that other stuff.

I've been dealing with constipation. It seems that it's a normal thing with this treatment. I take lots of pills and I'm sure some of them are the problem. I take an anti-viral, anti-fungal, anti-ulcer and some of my usual things too.

The biggest news for me this morning is that my platelet count is at 106! I highly doubt I'll need a transfusion. This is going so well that I just can't believe it. I had a great night's rest last night. I saw an amazing sunset, too, that was just spectacular. So, Boston Clam Chowder for lunch. What do you think? I hope it's out of a can!!

More Developments

This morning when I woke up I sat right up in bed without having to lean on my elbows or hands. I didn't even realize I was doing it. Haven't been able to do that in quite a while. Then, I decided to do some leg lifts. I was able to do 3 sets of 10 double leg lifts without giving myself a hernia! It's been years since I've been able to do one. Later on, when a nurse examined me she asked me to lift against her hand with my left leg. My toes immediately went up. Couldn't point my left toes up a few days ago. What next? Can't wait to find out!

Got a package from Andy today. Lots of undies, magazines, a cute card and cash. Can't wait to spend it. Thanks Honey! XXOO

Ground Zero

This is it. I've bottomed out. Tomorrow I get Neupogen and the regrowth starts. My platelet count is still at 108 which thrills me since I will need a transfusion if it goes below 50. I've become a total germophobe. My in-laws must be proud! (just kidding Mom and Dad)

I have to say that this whole experience has been quite a bit different from what I imagined. I really thought it would be a lot worse than this. Physically it hasn't been at all difficult. But, mentally, I had a couple of days in the beginning where I was wondering if I could just go home. I still have a moment here and there but I force myself to refocus and I'm fine. The only tears I've shed were as soon as Andy walked out the door and only for a half minute or so.

The nausea wasn't anywhere near as bad as expected and being neutropenic isn't that bad either. I didn't think I would be able to walk. When I got on the bed just now I lifted my left leg almost all the way on. I couldn't do that last week!

I wouldn't hesitate to recommend this treatment. That's why I started this blog. So far, I've been VERY pleasantly surprised! Phew, I need a nap after all this typing.

Off Drip, On Drip

I was off the drip for a few hours this afternoon but by that time I couldn't really leave my room. I am back on again. These doctors are driving me nuts. I even gave them another clean urine tonight but it's more "just until tomorrow" again. Whatever. It's for my safety although I'm sure there's a lot more involved on their end. I have no right to complain so I'll shut up about that. I did see a white crowned pigeon today for the first time. I know, big whoop. I never did get my counts printed out for me but as of 1AM last night my white count was about 1.3 according to what Dr. Balabanov said this afternoon. My platelets are still good. Oh, I was under the impression that my red count would also be brought to 0. This was a mistake. It wont.

I love to see Dr. Balabanov walk in. He is the poster child for optimism. He is always so cheerful and he always comments on how he noticed that my "bad leg" is bent with no problem etc. Today when he came in he said "What's going on? You're in regular clothes, jewelry..." I said "I'm getting out of here that's what's going on!"

Countdown to Neutropenia

Is that an actual word? It is now. I should be neutropenic tomorrow and then I will start getting Neupogen shots on Friday to regrow my marrow. I should have a white cell count over 1000 within about 6 days or so and I'm sprung!! It's all good from there Baby!!

I've been passing the time looking at pigeons, and hearing some of the amazing success stories about others who have had this treatment. I also had a clean urine sample this morning but I still haven't been taken off the fluids. No big deal, it's a slow drip and I don't plan on going too far since I have to wear a mask at this point. I can't see over it and it's hot so I'm fine holed up in my room. ( The doctor just came in and told me it's OK to stop the IV drip! )

I've had a very positive attitude and the folks here are super friendly. I'm feeling good all around. A little shaky on my feet this morning but not too bad. I ventured out, twice, to get coffee and the second time I carried it back myself. I'm already noticing some improvements. I don't get rigid when I roll over in bed and I don't circumvent my left leg any longer when I walk. I can put my left leg right up on the bed without having to sit down and pull it up with my hands.
I spend a lot of time thinking about all of the things I am going to be able to do with my kids and Andy. I am so thankful to have this opportunity for a second chance and I'm going to spend the rest of my life making up for lost time. Most of all, I want my Dad to see me walk normally again.

So, I feel like I might be jinxing myself but here goes. I am going to shoot for being sprung on or before the 15 th of August which just happens to be my aunt's 101 st. birthday! Maybe I'll be home to call her!

Finders Keepers ( I hope)

With all of this lousy food I managed to find my waist today. I hope I can hang onto it. I am on more fluid since I have urine in my blood. I started spotting a couple of days ago so any slight amount will test positive. This morning, right after I showered, I urinated and tested it myself and it was negative. I know I'm fine, bladder wise, but they can't take my word for it. Oh well. OK, the Benadryl is kicking in and I'm gonna pee for the bazillionth time in the past hour then off to La La Land. Goodnight.
Oh, there was a woman that was here for this same treatment exactly a year ago and she was out in 18 days. I'm shooting for that!! Must have hope!!

More Tuesday

Woohoo! I fixed the laptop! I know, I know. I'm brilliant. So, as of last night about 2 AM my counts are:
white 3.39
red 3.45 (up .05 from the day before)
platelets 131
They consider anything over 50 be be safe for platelets.
I've been trying to identify some of the local fauna and I have discovered...Pigeons! On the roof. That's about it.
I peeled off the dressing where the Hickman line went in and it wasn't bad. Holy smokes, a nurse just brought me Italian ice. Gotta go!

Tuesday, July 28

Hi All, I did something to my laptop this morning so I can no longer use it. Windows has been 'shutting down' for a few hours now. I had a good night last night. Lots of sleep. My white count is down into the 2's I think. My platelets are still high enough that I was given permission to shave my armpits. I had my dressing changed last night and showered this morning. Feeling good in general. Trying to stay busy in my room. It's not easy. I'm out on the general computer now but don't like being out of my room for fear of germs. I want to get out of here ASAP. I did have a urine culture and it was negative. I've been on broad spectrum anti biotics for a few doses and so far so good. I ate my entire breakfast, too! I guess they can't screw up Cheerios too badly, huh? OK, if any computer geeks out there want to fly out to fix my lap top I'll pay for the ticket. More later, if I get a chance.

Monday July 27

Last night was kind of a rough night. I am hooked up to fluids continuously and can never make it to the bathroom in time. I have to urinate every 15 minutes or so. I was finally unhooked at about 11 15PM but still didn't have all the extra fluid out of me. I also ended up with a fever -100.5- so even that slight temp rise made my walking that much worse. I was pretty depressed today until Dr. Balabanov came in and gave me quite the pep talk. I got up and visited another woman that is on the same schedule as I and hung out in the family area for a little bit. Boredom is a problem. I'm tired all of the time, too, so I want to sleep but I can't. Getting mighty homesick.

My counts are down a little but platelets still OK. I had to have a chest X-ray a little while ago because of the fever. I ate more than usual this morning which isn't much. That's about it for now. Thanks for the emails.

Last Dose Done

I had the last dose of Cytoxan last night. No problems this time. It turns out that it was given to me too fast Friday night and that's why I freaked out. I'm happy to have it done. Now comes the really tough part. In the next few days I will become neutropenic, meaning not having an immune system. I will feel like total crap. I most likely won't get out of bed. Then I will be given neupogen that will encourage my new immune system to grow. Hopefully, that one will be healthy and won't attack my nervous system that way the current one does. I doubt I'll be blogging. Feeling pretty lousy now. Vomiting a little but I can deal. Counts for today:
red 3 58
white 7 23
platelet up to 150 which is probably good. Don't want to have to have any blood transfusions. I post these since when my red and white hit 0 I'll be neutropenic. That's it for now. Thanks for all the emails. XO

Three down, one to go

Last night was tough. The anti-nausea drug I'm given each night before my chemo is a steroid. It made me freak out last night. I was convinced they were trying to kill me and I wanted to rip tubes out of myself and go home. After talking to a nurse about it I started to calm down. Much better this morning. I lost 4 pounds of water weight and had a bit of an appetite this morning. I'm out in the family room now for the first time since Thursday. I had my head shaved about an hour ago. G.I. Jane. Lots of heart burn, though, and I have to drink some chalky goop every once in a while. Very tired. Counts for today are:
White 8.99
Red 3.71
platelet 143

Two Down

It's 4 30 AM and I just got hooked up to two more grams of magnesium. It's going up but it's only 1.9 and the doctors want at least 2 in my blood count. Two of what I'm not sure. No nausea last night and I slept pretty well. I'm having some swelling, especially on my left side. My night nurse, Katie, will let the docs know and maybe they can decrease the fluid rate. I assured her that it is not an issue for me but she said she'd talk to them anyway. I'd rather be swollen than have Cytoxan build up in my body. She said she'd print up my counts for me but she hasn't come back yet.

It's now 10 30. My white count is up to 12.16 due to the anti nausea drugs which have a steroidal component. That's normal. Red is down a little bit to 3.75. My glucose is up quite a bit from Tuesday. Not sure why. I had no appetite this morning but ate some cheerios, a muffin and when the green banana ripens a little ( in a few days) I'll eat that. Ha Ha! I'm getting swollen again after having it subside for a couple of hours this morning. I'm feeling a little nauseated but not bad. I am very tired. Dr. Balabanov stopped by to see how I'm doing.

I was given a johnny to put on that could fit 3 large men into it. I thought I was losing my mind trying to figure it out. A nurse helped me find a small one and we had a good laugh over it!

Dinner

Andy, I can't believe you talked me into ordering the fried catfish for dinner. The neighborhood cats wouldn't eat this stuff and you couldn't even bait a lobster trap with it. XXOO

More...

When I got back to my room from posting a few minutes ago I saw that Andy had called. His flight is delayed by an hour. Also, I found out yesterday that I can't have any flowers/plants in my room. Today I was told that in a day or two I will have to stop eating any raw food. I've been enjoying fresh blueberries, salad etc. Oh well. Is ice cream considered raw??

Thank you to all my friends and family for your help and good wishes. Thanks to Leonora and Matt for the awesome cookout you had for me last WE and to all who attended and brought food! I would do about anything right now for some sliced tomatoes with mozzarella, basil and olive oil! I am especially grateful to all of you that are helping with the kids. I couldn't be here without your help. I love you!!

First Dose Done

I finished the first Cytoxan dose at about 10 30/10 40 last night. No nausea to really speak of. I had a slight headache but it was gone almost immediately after I finished. I had a CBC (complete blood count) at 1 AM The numbers are as follows: White blood count was 10.73, a little high from the chemo and the red was 4.09 which is within normal range. My sodium was low which surprised me since I'm a salt addict and my sugar was high! I had to have 2 g of magnesium since it was a little low and they gave that to me at 5 30 AM. I had no trouble with the drawing of the blood this time. Thankfully.

I am hooked up to fluids 24 hours. I found out yesterday that I can not take a shower for a week! I can shower from the waist down only with the sprayer hose. This means no hair washing. I decided this afternoon that I am going to cut my hair short tonight so I can at least wash it in the sink with a cloth or something. Andy wanted me to wait until he left. He left about an hour ago.

I washed some undies in the sink and hung them in the shower to dry. I also had to have my meds verified and locked up. I started an oral contraceptive on Sunday but a nurse came in about a half hour ago to tell me that I need an IM (intra muscular) shot for birth control. I assured her that pregnancy is not a possibility and told her that having an IM shot would put me over the edge. I'm a wuss. Sub cu I can do. Not IM. She relented and made me promise I'd get another script when I get home.

I did a lot of walking with Andy today and we played cards and Scrabble. I got my butt kicked, like usual. OK, I'm on a public computer so I should go so I don't hog it. It has a regular sized keyboard that is at a normal height so it takes half the time or even less to use it. I think Andy might be boarding his flight about now.

Don't worry about me Honey. I'll be fine. You just worry about the kids. I love you.

I'm Here. Finally!

I'm doing the old hunt and peck so please forgive any typos. My left hand is in rough shape from lack of any kind of exercise. It's 9 PM, Central Time, and I just got hooked up to the chemo. I'd been having hydration for about 6 hours. I had the catheter put in at about 1 PM. The surgery went well but I came close to vomiting when they put the IV in for anesthesia. I'm not sure why. Maybe from not having eaten anything in 16 hours.

The Hickman line went into my left side, in my neck, and came out above my left breast. Some muscle was cut in my neck and it got a little sore so I was just given something for the pain. I'm having a lot of trouble walking because I've been lying down so much. I need exercise!

About an hour ago a nurse came in to "do my labs" as she called it. She said she'd have to do it again at midnight. As I started looking for a decent vein she said she'd take the blood right out of the catheter. (There are three lines in the one catheter) I immediately got nervous and my left leg started to shake. This reaction is one of the things I'm looking forward to being rid of. It's better than having needles stuck in me all the time but for some reason it really freaked me out. I cried a little over it. Now that I know that that is how they're going to do it I'll be fine.

I have a lovely little device in my toilet called a hat. It measures my urine output. They will also check the urine for blood. It's a wonderful gadget that sticks up my butt when I try to sit down. It has two sides. The front is for urine and the back is, well, you get the picture. Imagine having that job? No thanks!

I was given anti-nausea drugs with this first dose. I had to take a Zofran when I got into the room after I tried to eat some toast. An hour later Andy was out getting me ice cream! He said "you aren't going to lose any weight in here!" Once I tried the dinner I assured him I will!

He is in the corner wrapped up in a blanket watching the game. He's cold. The room has a special ventilation system that equalizes the room pressure or some such thing. If someone out in the hall sneezes the air wont come into my room. It makes the room cool, though. I like it.

Beside having email trouble and having a hard time with this laptop (small keyboard) I'm pretty content. The staff here is amazing. Everyone is very friendly and they triple check everything. OK, off to watch the game!!

Countdown

Four more days 'til takeoff! I'm very excited. I'm packed and ready to go except for the last minute items. I had blood work done a couple of days ago and, unfortunately, had to change our flights to Chicago. We'll need to leave a couple of hours earlier and arrive at 10 30 AM instead of the original 1 15 PM. My appointment with Dr. Wool, the surgeon putting the chemo line in, is for 2 45. If, for some reason, our flight is late and I can't be in his office at that time I won't be admitted for the surgery on Wednesday. I don't want to take that chance and neither do they. I don't want this to be delayed for any reason. We've been practicing with the cam and I think we have it figured out. So now I just hurry up and wait.

Communication

Last week I finally got a lap top so I can keep in touch with family and friends while I'm away. I especially want to be able to cam with my kids so they can see me while we talk. It has taken me several days to figure out how to set up the lap top. I am realizing how little I know about the latest technology. But, I finally have it worked out. Finally.

Jenny was here yesterday. She looks fabulous. She brought some wigs and various head garments for me to use until my hair grows back. She also gave me more great advice on what to expect. The kids loved trying on the wigs and that made me feel better. I think they will be just fine while I'm gone.

Going Away Party

Yesterday some friends threw a going away party for me! They (and Andy) put together a good old New England Clam Boil. It's my favorite! I loved every minute of it. The kids all played with squirt guns and the hose and the adults ate and ate. I was also given a gorgeous basket filled with lotions and books about my favorite subjects- gardening and birds. There was lots of candies, gum and disinfecting wipes and other things that I might need to stay healthy and comfortable while I'm at Rush. My beautiful nieces made a picture frame and put a photo of themselves in it. The cards and messages that are inside them made me cry. I am so thankful to have such caring, supportive friends and family. Jenny (who had this treatment in November) gave them advice about what I might need. Thank you, all, for a wonderful time and for your support. I can't imagine going through this without all of you!

XXOO

Lots of People Have MS!

My 8 y/o son has seen my walking get worse as my MS has progressed. I know it's difficult for him to have his Mom be 'different.' I remember being 8 and have a pretty good idea of how that feels. Over the past 9 or 10 months I have tried to explain to him what MS is. I do it slowly in terms that I hope he can understand. I don't bring it up clear out of the blue. I wait for him to ask so I know he's ready to receive information about it.

Over the last month or so he's heard me talking to my husband, Andy, about how "so and so" just found out she/he has MS. He's starting to learn that I'm not the only one that has this disease. I think that this makes him feel a little better in some way.

Over the weekend he had to go to the pediatrician for a throat culture. She overheard me talking to a woman in the office about my trip to Chicago and she asked me about it. After our discussion she said that she asked because she has a lot of family members with MS. He didn't say anything at that moment but a couple of days later he mentioned it. I think that hearing his doctor say she has MS in her family really had an impact on him. Then he asked me if MS stood for anything. I said "Multiple Sclerosis" and then told him what those words meant. He then asked me who else I know that has it and I rattled off a list. He was shocked by some of the names I gave him. "But he doesn't have trouble walking!" I told him that it affects everyone differently.

I'm hoping that this knowledge lets him feel more comfortable about it. What I'm really hoping, of course, is that he can feel better by watching my walking progress while my disease 'goes away!'

Insurance

This afternoon I got a call from Dr. Balabanov's office saying that my insurance will cover one day at Rush. Yippee!?? When Andy and I met with the staff there, a couple of weeks ago, we were told that this is typical of most insurance companies. They will just keep submitting claims on a daily basis and go from there. I'm confident that my insurance will cover this. (I'm keeping my fingers crossed anyway...)

So, now I need to book some flights, get a laptop and learn about Skype. I just might even make an appointment to have my hair cut. I am going to donate it so I've been letting it grow and it's gotten much longer than I would normally allow it to. I wish I could make a wig out of it!

Something to Look Forward To

This morning I dropped off my 5 year old at pre-school and went to the market. I have a handi-capped parking permit (I call it my crip tick) but I rarely use it. As long as I park near the carriages I am OK. This morning it is raining and there was just one carriage and it was wet. I decided to be brave and take the chance of walking into the store without support. I made it in OK but when I went to reach for a dry carriage I had to step on the slick floor. I slipped but I managed not to fall. Unfortunately, anytime I come close to falling or even get nervous about it I "lock up" so to speak. It took several minutes but I finally started to relax enough to do the shopping.

At the moment I slipped the first thing that went through my mind was "I forgot my cell phone!" I don't dare leave the house without it. Not even to walk my 8 year old the 100 yards down the road to the bus stop. I had to charge it this morning and I forgot it. I am afraid to be in public without my husband to hold onto me. Or to go to a store without being able to hold the carriage to keep me from falling if I trip. Taking my kids to the park where I have to walk on grass in treacherous. The last time I fell at the bus stop my poor 8 y/o son was horrified. There wasn't anyone around to see us but he was totally embarrassed. "C'mon Mom, get up!"

As I left the market this morning I thought about how wonderful it's going to be to not have to feel that fear any longer. My attitude has changed since I got back from Chicago and was told I can have this treatment. Now, instead of being so nervous about falling all the time I think more along the lines of "it's OK, it wont last forever!"

Something I Feel I Need to Say (disclaimer?)

When my beautiful, dear friend, Jenny, (her blog link is in the sidebar) told me about Hi-Cy and asked if it might help me I kind of dismissed it. She kept asking me if I had researched it yet and I finally decided to look into it. I am lucky that I had her to tell me about it and that I had her blog to read. That alone really made me hopeful. However, nothing convinced me more than reading about it on the Johns Hopkins website. I was convinced. Over the course of a few weeks I read it over and over. We all interpret things differently and I wanted to be sure I understood it. I asked my husband, Andy, to read it to see what he thought. He was very interested.

My point is that nothing will replace your own research and interpretation. I will not knowingly state anything that is false. But, I may interpret things differently than you and what is fact today might be fiction tomorrow. Do your homework. We all need to be our own advocates and take charge of our health care. Ask your doctors questions. Challenge them. Get a second opinion. Most of all do your research! Don't settle if you aren't happy with the results. Change doctors if you need to. I am on my third neurologist. He is open minded and aggressive with treatment and that is what I was looking for.

I had originally called Johns Hopkins about having the Hi-Cy at their facility but for reasons I don't really understand they didn't want to treat me. I didn't want to take no for an answer so (again at Jenny's suggestion) I contacted Rush. And now here I am on Blogger!

My First Post!

Hi! My name is Jane and I am a 43 year old woman with Multiple Sclerosis. I was diagnosed in 1998. In July I am going to participate in a clinical trial at Rush University Medical Center in Chicago. I got the OK to participate just two days ago. I am very excited!



I will receive high dose cyclophosphamide (chemo) for four days. This will "wipe out" my faulty immune system and then my body will regrow a new one. The idea is that my new immune system will be healthy. I believe that this is the "thing" that I have been waiting for to come along since everything else I have tried has not been very helpful. What has been helpful is reading about other people who have had this treatment. I hope this blog helps others.



I probably wont have a heck of a lot to say until I get there. But, I am constantly told, I talk too much so maybe I will. I have the utmost faith that this is going to work and I want to see this treatment become available for all MSers. The doctors wont use the word cure but I think, for all intents and purposes, this could be pretty darn close to one. Maybe I'm being overly optimistic. I refuse to believe that I am. That's up to you to decide.