Friday, July 31, 2009

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!!

Thursday, July 30, 2009

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.

Wednesday, July 29, 2009

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!

Tuesday, July 28, 2009

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, 2009

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.

Sunday, July 26, 2009

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

Saturday, July 25, 2009

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

Friday, July 24, 2009

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!

Thursday, July 23, 2009


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


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.

Wednesday, July 22, 2009

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!!

Friday, July 17, 2009


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.

Monday, July 6, 2009


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.