Starting Vidaza Tomorrow @ HUP

Dear Fods,

I am slowly limping back from the last HUP stay but am very weak this time. It is taking longer and longer to recover from my stays at HUP. My girlfriends have taken me out 2 nights for dinner and Jessie and the kids came up for an overnight before they shipped out to Lebanon to visit Walid's family. They arrived about 1 hour ago (Thank God!!). Apparently, the kids were very good on the flight, slept for most of it, and watched movies for the rest of the trip. Jess and Walid, on the other hand, were probably up for the past 48 hours!

I start vidaza tomorrow as an out patient at the HUP clinic for the next 5 days. My wbc is elevated @ 28 and we are not sure what this is about (infection or elevated leukemia??). My ear is still tender but is finally back to a normal size. My eye is back in the socket and looks normal, although I have some some blurry vision. Once again, the steroids have cleared things up for me. As always, when I am on 40 mg of prednizone I am ravenous and am eating everything that comes close to my mouth. I am ordering from Piccini's as we speak!

We were thrilled to be able to go to Bobbie's party yesterday and see the family. The food was great and I ate everything on my plate. Afterwards, we came down to the shore and had a nice day and a half. While the weather is not the best, we did just come back from a walk on the beach -- if you call Joe holding my up while I stumble along a walk! But I did get to see the water.

Joe is off tomorrow and we head up to HUP in the early AM to start the treatment and will let you know how it goes with this new round. I need to stay out of HUP. I will nader down about 10 days after the end of the chemo.

Thank you for the cards, blogs, and calls. You are all so wonderful to hang in there with me and keep me afloat when times get tough.

I love you all.

Debbie

Hello from OC, NJ

Dear Fods,

I wish I could tell you about the hospital stay, but I was delirious for 2 days because of a drug interaction. Of course, HUP overreacted and thought that I had encephalitis of the brain and wanted to send me to ICU because I had a fever of 104 and a bad headache. Luckily, Mike remembered that I was on lyrica for my back pain and he knew that it interacted with something once before -- so we checked with Dr. Jessica and she remembered that the interaction was with ativan. Of course they had given me both of these drugs on the day in question and Joe took it up with the appropriate authorities at HUP. That is not to say that HUP didn't get their 3 CAT scans and 1 MRI, ruling out an issue that was never an issue, but that is how it goes down at HUP. (Joe's insert)

The fever was due to my ear infection and my eye. Oh by the way, my eye started to pop out of its socket again, due to extreme pressure behind the eye (has not been properly explained to me so I do not know why this happens) and it started to bleed again. So on Thursday, I was in la la land because of the drug interaction with an ear 3 times its normal size, taking on water weight like the Titanic because of the IV fluids, and a popped out eye telling the nurses that I was in Disney World and that I needed a new dance partner.

Joe had called the NP on Wednesday and convinced them that all of this was related to my compromised immune system and to start the steroids again which they did that day. They agreed and started high dose decadron and within 24 hours, my eye was back in place and the ear was looking good, but I felt like a whipped pup. I cannot function for more that 2 weeks once off the steroids -- so they will be with me from now on.

The oncologist said that I had to stay the weekend for observation, but by Saturday morning I was getting a bit blue about the prospect of staying in the hospital for another weekend. Another oncologist came in on Saturday and said, "What are you doing in here? Do you want to go home?" I called Joe and told him to get down here before someone else changed their mind. So she allowed me to be discharged on Saturday afternoon and we just kept heading East to the beach house. The weather has been just beautiful and we had 2 perfect spring days.

I am so weak this time that I could barely make it up the stairs. But I am here and spent time on the decks in the sun (which I am not supposed to do) and went to the boards for some pizza. The air, the surf and the sounds are so soothing for me and I am on the mend again.

Hope you all had a good weekend. Thanks for the blogs and cards and calls. I love hearing about your stories and your families.

We will keep you posted.

All my love,

Debbie

Happy Anniversary from HUP!!!!

Dear Fods,

Well I am back in HUP and was admitted yesterday on our 35th wedding anniversary. The problem now is a bad cellulitis of my left ear, probably from a bug bite. Joey and I were out cleaning out some bushes and the limbs fell near me and I remember brushing something away from my ear -- but no actual bite mark. So I have fevers and flu like symptoms. My white count is elevated and here I am.

I was supposed to start chem yesterday. Five days of Vidaza as an outpatient. However, they took one look at my ear and that was the end of that plan. I kind of figured that because we went to the ER at Grandview on Saturday because the ear kept swelling and it was very painful. They added a new antibiotic -- I am already on 4! But I was hoping not to be admitted to HUP. When I saw Porter on Monday, my fever was 103 and my white count was 18. The swelling and inflammation in my ear was beginning to move down my neck-- yikkes! So here I am at HUP on IV vanco. Not quite sure when I will get home or get chemo. Of course what always happens when I get here is that things start falling apart. I now have conjuntivitis in both eyes and a very bad cough that might be pneumonia. They are going to do another chest X-ray later this evening. Still can't eat the HUP food but these nurses are like my good friends.

We just can't plan anything. We had a wedding on Saturday and I called the mother of the groom to tell her that we would see her on Saturday. But we were at Grandview. This weekend we have a 50th wedding anniversay party and a shower to go to. We will see what happens. Thank God people still make plans with me because I am prone to cancel at the last minute.

I have to comment on Visitor Allison's last post. I was seeping while reading the post and for the rest of the evening. As I envisioned your son was getting a tattoo with "Una's" name on it -- how proud and sad must you have been. Where does the time go when we raise our kids.

Congratulations to all the graduates. Bobbie T., Stephanie T., Colin C., Bobby L., Sara S. Good luck at college and the job market.

All else is well with our family. The Khouri's are going to Lebanon for 2 weeks on June 13th. I am sure Walid's family can't wait to see the kids. Everyone came to the shore for the Memorial Day weekend. As always it was great to see everyone. Isabelle is coming to visit on June 13 -- she is a toddler now and not a baby anymore. Mike and Joey are doing fine with their jobs and both working long hours.

I will spend as much time as possible at the beach house this summer. Jessie is planning to stay for the month of July and I will be there as much as I can.

I wish you all a fun filled and safe summer. I know that I end every blog this way but thank you again for all of your cards, blogs and calls. They mean the most to me.

Love,

Debbie