Saturday, July 29, 2006

It's Saturday and it's going to be about 100 degrees outside so I'm staying in with the air-conditioning up to the max. In California over 100 people died due to heat related illnesses and I sure don't want to get outside and not be able to breath. Yesterday I got very hot in the van that picked me up from dialysis. The van didn't have proper airconditioning and I'm calling the company today and letting them know. I had all I could do to get in my apartment and in bed. I was thankful that I left the air on so the place was very cool.
Sharon, my niece, wants to come with me to the Chemo appointment but I don't want her too. She had three boys and just finished being a care taker for her mother-in-law.
I feel very good this morning. I took all my medications and did a nebulizer treatment.

Thursday, July 27, 2006

I made myself zepellas today and that was fun. I went shopping on my scooter in Shop Rite and I ran into an old lady. She was very upset and she was having a bad day and said "What more can happen to me today". I said I was sorry she said "Thank you mister for running over my foot" . I said "you'll be alright" and she left me alone. Good thing I didn't really hit her hard. I felt sorry for her, she was such a miserable person. It's very muggy outside. Not easy to breath so I think the best place for me is in my airconditioned house. It's very cold in here but that's the best for my breathing. Every once in a while I step out on the balcony to see how warm it is outside.
I just pulled this from one of the sites on Cytoxan so you can understand the possible side effects of the drug. Remember, I'm not taking this for Cancer, I'm taking it to control Microscopic Polyiangiitus. You'll notice they mention Kidney disease. I don't know how they are going to work around that yet?

Why is this drug prescribed?

Cytoxan, an anticancer drug, works by interfering with the growth of malignant cells. It may be used alone but is often given with other anticancer medications.
Cytoxan is used in the treatment of the following types of cancer: Breast cancer Leukemias (cancers affecting the white blood cells) Malignant lymphomas (Hodgkin's disease or cancer of the lymph nodes) Multiple myeloma (a malignant condition or cancer of the plasma cells) Advanced mycosis fungoides (cancer of the skin and lymph nodes) Neuroblastoma (a malignant tumor of the adrenal gland or sympathetic nervous system) Ovarian cancer (adenocarcinoma) Retinoblastoma (a malignant tumor of the retina)
In addition, Cytoxan may sometimes be given to children who have "minimal change" nephrotic syndrome (kidney damage resulting in loss of protein in the urine) and who have not responded well to treatment with steroid medications.

Most important fact about this drug
Cytoxan may cause bladder damage, probably from toxic byproducts of the drug that are excreted in the urine. Potential problems include bladder infection with bleeding and fibrosis of the bladder.
While you are being treated with Cytoxan, drink 3 or 4 liters of fluid a day to help prevent bladder problems. The extra fluid will dilute your urine and make you urinate frequently, thus minimizing the Cytoxan byproducts' contact with your bladder.

How should you take this medication?

Take Cytoxan exactly as prescribed. You will undergo frequent blood tests, and the doctor will adjust your dosage depending on your white blood cell count; a dosage reduction is necessary if the count drops below a certain level. You will also have frequent urine tests to check for blood in the urine, a sign of bladder damage.
Take Cytoxan on an empty stomach. If you have severe stomach upset, then you may take it with food.
If you are unable to swallow the tablet form, you may be given an oral solution made from the injectable form of Cytoxan and Aromatic Elixir. This solution should be used within 14 days.
---If you miss a dose...
Do not take the dose you missed. Go back to your regular schedule and contact your doctor. Do not take 2 doses at once.
---Storage instructions...
Store tablets at room temperature. Store the oral solution in the refrigerator.

What side effects may occur?

Side effects cannot be anticipated. If any develop or change in intensity, inform your doctor immediately. Only your doctor can determine if it is safe for you to continue using Cytoxan.
One possible Cytoxan side effect is the development of a secondary cancer, typically of the bladder, lymph nodes, or bone marrow. A secondary cancer may occur up to several years after the drug is given.
Cytoxan can lower the activity of your immune system, making you more vulnerable to infection.
Noncancerous bladder problems may occur during Cytoxan therapy (see "Most important fact about this drug" section, above).
More common side effects may include: Loss of appetite, nausea and vomiting, temporary hair loss
Less common or rare side effects may include: Abdominal pain, anemia, bleeding, darkening of the skin and changes in fingernails, decreased sperm count, diarrhea, fever, infections, infertility, lung infections, missed menstrual periods, mouth sores, new tumor growth, other cancers, rash, severe allergic reaction, slow wound healing, yellowing of eyes and skin

Why should this drug not be prescribed?
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Do not take this medication if you have ever had an allergic reaction to it.
Also, tell your doctor if you have ever had an allergic reaction to another anticancer drug such as Alkeran, CeeNU, Emcyt, Leukeran, Myleran, or Zanosar.
In adults, Cytoxan should not be given for "minimal change" nephrotic syndrome or any other kidney disease.
Also, Cytoxan should not be given to anyone who is unable to produce normal blood cells because the bone marrow---where blood cells are made---is not functioning well.

Special warnings about this medication

You are at increased risk for toxic side effects from Cytoxan if you have any of the following conditions: Blood disorder (low white blood cell or platelet count) Bone marrow tumors Kidney disorder Liver disorder Past anticancer therapy Past X-ray therapy

Possible food and drug interactions when taking this medication

If Cytoxan is taken with certain other drugs, the effects of either could be increased, decreased, or altered. It is especially important to check with your doctor before combining Cytoxan with the following: Anticancer drugs such as Adriamycin Allopurinol (the gout medicine Zyloprim) Phenobarbital
If you take adrenal steroid hormones because you have had your adrenal glands removed, you are at increased risk for toxic effects from Cytoxan; your dosage of both the steroids and Cytoxan may need to be modified.

Wednesday, July 26, 2006

I called the U. Of Penn Hospital, the department that does the Chemo. I asked that what I was to expect. I talked with Christa. I'm not sure if she was a nurse or what. She said she was happy I called because she didn't know I was coming in and I have lots of issues that have to be dealt with. Issues like: drinking lots of liquid after chemo. I can't do that because of dialysis. Will the poisons of Chemo come out in dialysis on Friday? What will take eight hours? All this is going to be very interesting. I wish there was something that I could read from someone that has gone through the same thing.

Tuesday, July 25, 2006

Last night I had a dream that I lost my hair. I was taking a shower and when I came out of the shower I lost all the front of my hair but it was turning blonde. I guess that's on my mind. Whenever you go through things like this, you go through them alone. No one really understands what you're going through. I'm determined to be positive but once in a while you get a little down. I think I'll whiten my teeth today.

Monday, July 24, 2006

They scheduled my chemo for August 3rd (Thursday). I have to report there at 8:00 am and they said it would take about eight hours. I thought it was only going to be about two hours. I have to call the office tomorrow and find out exactly what will be happening.
I was supposed to go into U. of Penn Hospital for a breathing test and I'm sure it was to be one month after starting Chemo. I emailed Dr. Ahya's head nurse, James Mendez and sure enough he emailed me back to reschule the appointment. I save a four hour trip on my non-dialysis day. As soon as I get the date for Chemo then I'll reschule a breathing test for thirty days after that. ...I'm off to dialysis.

Saturday, July 22, 2006

Yesterday I visited Dr. Albert and talked about the start of Cytoxan. We will start on a Tuesday or a Thursday. We can't do it the same day as dialysis. We went over the possible complications that could come from dialysis. One of my questions was about the amount of water they tell you to drink after Chemo. They say you should drink as much as you can to get the poison out. He said I don't have to worry about that because I don't have kidneys and the fluid can't get into the bladder. That seems to be what they are worried about. Poison in the bladder is very bad. I will start with a 1/2 dose of Cytoxan and only receive it once a month. Ten to fourteen days after I get the infusion I will have a Blood Count and send it to Dr. Albert. I'm happy we'll be doing everything very slow because all I read about Cytoxan says it's a very nasty drug. I'm trying to keep all my doctors up to date on my progress. I have to also let Dr. Ahya know what's going on. If this works then I'll get back about 20% of my lung capacity and be able to get a kidney transplant. I know this will work. I know enough about drugs to know that the side effects don't all hit everyone the same way. Some side effects I'll get and others I won't.

Tuesday, July 18, 2006

It's another hot day. It's over 100 degrees out there. I do a breathing treatment about every four hours. The air-conditioning is up high and It's cold in here. I can't take any chances today. When I step outside I can feel it and it gets very hard to breath. My home is a like a large hospital suite. I sure wish I could get a kidney. I'm getting so tired of going to dialysis every other day. It would be so nice to go to the beach and jump in the water. I hear the water is about 70 degrees. Wouldn't that be nice. Maybe I can get down there early in the morning. I don't know if I can make it to the water. That's a long walk from the parking to the water. I'll eat lunch now. My sister, Rosemarie, cooked me some veal / breaded. Umm

Sunday, July 16, 2006

I keep thinking about Cytoxan, the drug I will be taking when I do the Chemo. It's a very serious drug. I looked it up on the internet and it says that I should drink lots of fluid and urinate a lot after the injection. How am I suppose to do that? That's the way to get the poison out of my system. I don't know about all this, I have to talk with the doctor. I'm getting "cold feet".
Well, it's about 100 degrees outside. I guess it's just the opposite of a "snow day". It's so hot out that I can't breath out there so I have to stay in the house and look out the window. It's not worth it for me to go out. I'm breathing easy now and it go out I'll be huffing and puffing in no time. I might as well just relax and get ready for the coming week. ...I sure hope we don't go into World War III. That would really suck. It would be especially bad if they had to bring back the draft. Today's kids don't know what that would be like.

Saturday, July 15, 2006

Well, here I am again stuck in the house on a beautiful day. It's about 90 degrees outside but it's not a good day for people with respiratory disease, and that's me. It's very hard to breath outside. I have the airconditioning up high and I'll just work around my house. I can always file. If you saw my house you would understand that....My sister just dropped me off some food to eat. She's good at that. She also picked me up a jelly donut and cup of coffee. .. On Friday of this coming week I go to Dr. Albert and find out when I start the chemo. I'm not looking forward to it but I would like to get it over with. I'm told that I will be very sick from the drug. ...I've been sleeping with the Sleep Apnea machine and it seems to be working. I sleep longer and wake up rested. After a while, you don't even feel the mask on your face..... I wish I could just drink a gallon of water.

Friday, July 14, 2006

I had dialysis today. It was so hot outside that I couldn't breath. I had to make my way home as soon as I can and just sit in the air-conditioning. I used to love this kind of weather. Now I have to travel around with my oxygen and a little black bag filled with emergency medicine. It's a drag. It's friday and I would like to go out tomorrow but it's going to be in the 90s.
Today they took off about 6 pounds of fluid from me. I got all my medicines renewed and I'm feeling ok, if it wasn't for breathing.

Tuesday, July 11, 2006

I heard from Jodi today. She was the host of Action House TV, the show I produced / directed and also distributed at Action House. I heard that Action House doesn't exist any more and that the TV show has stopped airing. Too bad. It was a fun show with lots of music and very positive episodes for the kids. Unfortunately, they didn't know how to produce the show after Jodi and I left.
It's going to be 90 degrees out today. I have to go to the store and buy a few things. I'm off from dialysis and that's good. I'm feeling very good. In about a week I'll start the Chemo treatment. I feel good about it. I'm going to enjoy just relaxing and taking it easy today. I'll stay in most of the day. It's nice and cool in my home.

Monday, July 10, 2006

I went to the beach today. Denise picked me and my oxygen up and took me over to see Sherry and the kids. They were very excited. I'm happy I had some lollypops for them. After spending some time on the beach then we (Denise and I) went over to Carleen's to meet up with Mickey and say goodbye to him. He's off to be a monk and won't return for a year. I made it through the day. I was a little tired. I got home around 4:00pm and went to bed. I just got up the next day at 7:30pm. I sure can sleep when I'm tired. Part of the night was with my Sleep Apnea machine and then the other was without. My nose got stuffed up so I couldn't breath through my nose and with the Sleep Apnea you have to breath through your nose. You can't open your mouth or you sound like a vacuum. ...I'm off to dialysis today. I have an easy week.

Sunday, July 09, 2006

It's a beautiful day today. I'm going to try to meet up with my niece, Sherry, and have breakfast.

Saturday, July 08, 2006

I just found out a childhood friend died, Pete. He was actually closer to my good friend Bobby Boeckel. It's very sad to hear those things. So many people I grew up in Sea Bright, New Jersey have died, many of drugs and alcohol. I'm so happy I didn't get caught up in that stuff. I think it was mostly because I didn't like the taste of beer and I didn't know where to get drugs. Back then wasn't like it is today. Sure there was grass but not much more than that. ....It's Saturday and I'm working at home and trying to file all my medical bills and pay some of my regular bills. It's a beautiful day outside. My "home health aide" just arrived so maybe she'll help me with a few things.

Thursday, July 06, 2006

It seems that my life has taken from the title of a 70s song and movie; "Staying Alive". I go from one treatment to another. It's very difficult when you see or hear of friends that passed away. It happens often in dialysis. All of a sudden there's an empty chair. .... It's a beautiful day today and my sister, niece and the little girls are coming to visit me. They want me to go the beach with them but I don't know about that. I'm a little nervous about going to the beach with oxygen. . ...It's going to be in the 80s today. I have no appointments and that's a good thing.

Tuesday, July 04, 2006

I sent out a memo to all of my doctors. I want them all to know what's happening and it's not easy to call them or put them together. I thought it best to just write a letter telling them all what was going on and including all their contact numbers. If they want to call each other they can. I have to bring together the doctors in Philadelphia with the ones in Brick, New Jersey. It's all about my health so I hope they all come together on this. Dr. Ahya of U. Of Penn said he would make every effort to make that happen.
It's 4th of July. I don't go into crowds so I'll be home watching them from my bedroom window. I have a very large window and I can see all the fireworks right from my bed. I'm just going to relax with a little O2.

Monday, July 03, 2006

It’s about 90 degrees outside so people with respiratory problems should stay inside. I get out of breath easily. Tomorrow is the 4th of July. I’m invited to my sister’s house for a barbeque. I’m going to go rest now with my REM Machine (my dream machine). That machine makes me dream. It’s awesome. Everyone should have one, just like everyone should have a scooter. They are inexpensive and they are great for shopping. Who wants to walk around Walmart’s or Cosco’s. Not me!

Sunday, July 02, 2006

I just heard that Caroline Lagerfelt will come to New York for twelve weeks to be in "The Prime of Miss Jean Broady" Off-Broadway. That will be fun. That will be from August to November. Caroline told me she would give me one of her kidneys. My friend from highschool, Jeff Thomas, was in from Houston and he took me out to breakfast. He told me he would also give me one of his kidneys if I needed it. It sure is a nice feeling having friends that would do that for you. Today it's about 90 degrees out side. It's so hot that I have to stay in the house with the air-conditioning on high. My nephew just called me and he's going to visit me later. I asked him to pick me up a Chocolate Italian Ice. I have dialysis tomorrow so I'm going to cheat a little. I haven't had too much to drink this weekend so I've been saving space for a little Italian Ice. My nephew Mickey, the Monk, was supposed to come with me shopping but they decided that it's too hot for me to go out shopping. They (my sisters) are right. I do have trouble breathing in the hot weather. I have to get a fisherman's hat to protect myself from the sun.