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.