Special Guest Posting # 7

To My Dearest, Dear FOD's,

Thank you again for all of the cards, flowers, food, gifts, calls, prayers and well wishes. I know once again that I have been difficult to get ahold of, however, Joe has not yet installed the ATT&T switchboard yet or hired my private operator (just kidding). Sometimes I don't answer the phone because I just don't want to tell the sad tale over and over again. So please forgive me. I am so touched by all of this attention.

I am thrilled beyond belief at being at home and am feeling OK. I am in denial again because I am feeling so good, but my visiting nurse reminded me today that this could change in a second, if my blood count numbers start to drop.

We are preparing for the Jefferson appointment, however, after doing some preliminary research, this haploidential stem cell transplant sounds too damn risky to me. We are also looking into Anderson Cancer Center in Houston for chemo alternatives. I spend most of the time not thinking about it -- since I had the last 60 days to dwell on it -- so give me a week or two to fool myself. But maybe a miracle will happen. With everyone praying for me, maybe it will happen. What the hell, I look like a monk now anyhow! (Joe English humor again.)

So thank you all again. Last weekend we spend a nice time at home with Mike, Joey, Allie and Dereck. It was great to have kids around because by the time we fed everyone again, and again, and again, we were too tired to do anything else. (Joe again) Rather, we did talk about kid stuff instead of me which was a pleasant diversion.

This weekend Jester, Walid and Christian will be visiting and I cannot wait. C is always the best medicine. We will post again toward the end of the week after the meeting with Jeff.

I hate to keep repeating myself, but my chemo brain has limited my range of thinking, but thank you, thank you, thank you for all of your support and love. It keeps me going every day.

I love you all.

Debbie

The Verdict is In

We met with Dr. Porter yesterday afternoon and he explained Deb's prognosis. Unfortunately, it is not very good.

Deb is not in remission and about 20% of her cells are still leukemic. After two rounds of chemotherapy, this is not a good result. It is Dr. Porter's opinion and traditional chemotherapy will never get Debbie into remission. It may be helpful to keep the disease in check for a while, but it is a short term option. This outcome reminds me of the reading we did when we were awaiting the results of the chromosone analysis. When Deb's chromosone defect was identified, it said that it was "resistent to treatment." Amen to that!

Second, none of Debbie's siblings are a match. Pam is slightly better than a half match. Further, Dr. Porter said that Deb's DNA is unique -- something most of us already knew. However, of the over 5 million potential donors in the data base, only one is a potential match for Deb. When we told Dr. Porter that Deb was in the database, he concluded that the one potential match is most likely Deb herself!

Based upon what we have been told to date, there are no conventional options for us in the case of no remission with no matching donor, other than continued chemotherapy to hold the disease at bay.

Dr. Porter asked us to consider an "experimental" treatment called a haploidentical stem cell transplant, that is done at Jefferson. HUP does not do them. We are reading about the procedure and its consequences and we will meet with the people from Jeff next week. Presently, this does not look like something that we will undertake, but we will speak with them.

If we do nothing further, Dr. Porter said that Deb has between 3 - 18 months.

Deb sends her love to all.

Day Outta There!

It was not quick and it was not easy, but we finally arrived home together at about 7:30 PM. Deb called early this morning with instructions for what treats and Thank You cards to buy for the nurses and said that she was packed and on track to come home this morning. I was scheduled to arrive @ 11:00 and got there a little early. Actually, at one point in the morning Deb called me to make sure I was in the car and driving in her direction!

As I was driving by Montgomery Drive (for the uninitiated, that is 5 minutes from the Hospital), Deb called and said that they decided to hang two units of blood to "beef her up" for her stay at home. Of course, I did not know what that meant, but between HUP delivery services, breaks, lunches, visits, etc., we finally left the hospital at about 6:30 PM or 8 hours after I arrived. Their processes are simply beyond description.

Our master MD of disinformation threw us another curve ball today. As you may recall, we were told that Deb would have 4-5 weeks of a rest at home, go in for the bone marrow as an outpatient and then we would be told where we stand with the disease. Of course, yesterday that was moved up to a bone marrow on the spot and then we would come in in two weeks for the CAT scan and we could learn the results of the bone marrow. Well today, the visit has been moved up to Tuesday and is completely disconnected to the CAT scan! So we get 4 days of "blissful ignorance" before our crystal ball gets read. Since I am in Court on Tuesday, the visit may get moved to Thursday, but I am thoroughly disgusted with the process, and apologize for complaining the last two days.

When we arrived home, Deb enjoyed her new kitchen, hugged her boys and Miss Allie, looked under the table more than once for Simmie and was thoroughly contented. She ate a grilled cheese and tomato sandwich, with a pickle and was happy. She went up to take a bath in her great tub and then had a bad coughing jag and got very weak. We made a mad dash to CVS to get her half dozen prescriptions filled and did our best to dole out the meds to Deb! A few moments ago, Deb seems to be resting comfortably now and we will straighten up the house before turning in. It is amazing how much stuff we crammed into that little hospital room! We will try for a special guest posting tomorrow before going to a weekly format.

Deb sends her love to all.

Day 46

Well FOD's, we are just about there -- I will be going down to fetch Deb home around 10:00 AM tomorrow. Joey and I spent the last 3 hours cleaning, vacuuming, mopping, scrubbing and dusting to get things in order for the big event. Since Bruny was here last Friday, it was not too big of a deal, but the place does look good tonight. I hope that we have not set the bar too high -- but Deb should be pleased. We will let you know tomorrow.

We had another round of HUP "disinformation" last night and today. Previously, we had been told that we would go home for 4-5 weeks and then come back to HUP for the bone marrow biopsy. Last night, Dr. Porter said that we would have the bone marrow biopsy in 2 weeks when we came back in for the CAT scan of Deb's lungs to monitor her pneumonia. This morning, when I checked in with Deb, she told me that the bone marrow was scheduled for today in the PM! Their thinking now being that if they do it now, we will have the results in two weeks when we come back for the CAT scan. I told Deb that I would be there in the PM but would call her at lunch time to make sure of the schedule. Deb called back in 30 minutes to tell me that they were doing the bone marrow in 20 minutes -- and I could not be there. So in 1 day, we went from 6 weeks to 2 weeks to 1 day to now! Sorry -- but that is BALONEY!! and they will hear about it on the evaluation sheet, if they ask me for one.

Kris was able to visit with Deb today and brought her a lunch from the Four Seasons -- which Deb was able to eat (imagine that). Because of the drugs that they gave Deb for the bone biopsy, she was not very communicative today, and understandably so. Kris was a great comfort to Deb and we appreciate that.

When Deb comes home, this post will most likely go to a bi-weekly or weekly publication. Personally, I would like to thank everyone for their kind attention to Deb and for using this tool to keep pace with her. Deb read the blogs every day and the delivery of them became one of our first meeting rituals. Every day was printed and delivered, just like when I delivered the Bulletin, years ago. Many people have commented to me about what a devoted group of friends Deb has to have kept up with the blogs and to have helped us every day with kind words and prayers for Deb's well being. You guys are all great and you are a devoted group of FOD's. We love you for your daily support and encouragement and hope that Deb comes through this to a full recovery.

Deb has given me explicit instructions for this weekend -- NO VISITORS! Sorry FODS, but she needs some time alone in her space and to begin to rebuild. Sounds like gilled cheese sandwiches, egg plant parm., and pasta to me!

As soon as we see Deb's strength improve, we will open the doors and crack open a keg of Cosmos!

Deb sends her love to all.

Day 45

Great News today: Deb is coming home! Her counts jumped dramatically from yesterday, wbc to 3.5 and ANC over 1,000. The day was kind of a roller coaster. When we first spoke this morning, Deb had a bad cough, pneumonia still an issue, but she had one of the best nights sleep she had since being in HUP. She ran a little temp. during the evening and she had some terrible coughing jags when she got out of bed and my impression was -- yukko, another same ole same ole day.

Next, I get a call around 1:00 and in the middle of a meeting and Deb says that she will be coming home on Saturday. Great news, even though we are wondering, what about the pneumonia?? The cough?? We are currently on all of these special meds?? What is going to happen when we come home?? Shouldn't we watch this for a day or two??

When I arrived, Deb had been visited by the "discharge" unit and she was scheduled to leave tomorrow! Not Saturday. Deb said "WAIT A MINUTE. HOLD ON. I AM STILL SICK!!" Needless to say, she was fuming at the thought of being "unplugged from the IV's" and rolled into the Avalon for the trip home. She wanted a day or two of observation, with everything unhooked to see how she is really doing on her own.

Deb wore herself out fretting over the potential discharge decision and she took a short nap until Dr. Porter arrived. When he did, she asked all the right questions and Dr. Porter said, "your counts are fine -- almost normal. You are fighting the pneumonia on your own and your wbc will probably handle it. We aren't treating the virus, that has to run its course. You can be sitting in the hospital with a fever or at home with a fever -- we aren't doing anything about that fever. But I still want to make sure that this fever is not related to the leukemia. When I am confident that it is not, you can go home."

We think this double speak means Friday at the earliest and Saturday at the latest. But the big suitcase is in the trunk of the car in case it means tomorrow.

Dr. Porter wants to see Deb in 2 weeks for a bone marrow biopsy and a CAT scan of her lungs. The bone marrow will tell us where we are with the leukemia.

Deb is still very weak and we are both wondering if she has the strength to get up the stairs to her bedroom. Once she gets back into the house and we understand what she can do, we will let you know. I suspect that she is weaker than we think since she has been in an essentially "bed ridden" enviornment for the past 6 weeks. Hopefully, we will be able to whip up her favorite dishes and build her back up quickly. We are hoping for good times now!

Deb sends her love to all.

Day 44

Deb called this morning on the ride into work to tell me that her CAT scan showed that she most likely has pneumonia in both of her lungs. Obviously, she was very depressed by this news as we have been hoping that this news would not be the latest bad news on the journey. The doctor said that she would need a broncoscopy -- although that procedure seemed to be a bit up in the air when I left this evening. As I understand the procedure, they would enter Deb's lungs and take biopsies in order to find out exactly what is going on in there. This would be done in an OR and she would be put under -- not something Deb wants. They called in the infectious disease people and they did not think that this procedure was necessary now. So, we do not know what is planned for tomorrow in this regard.

Joey and I visited with Deb this afternoon and she was resting when we arrived. She was up in a second when she saw us and gradually came around as the visit progressed. They are giving her so many drugs that I cannot keep track of them, but whatever they had given her prior to our arrival was wearing off as the visit progressed and we had a good visit.

Deb had a copy of the CAT report and we both read it a few times. It is clear that they are seeing something in her lungs, but it is not clear from my reading of the report exactly what is going on in there. Most likely, it is pneumonia, however, the report was prefaced, conditioned, equivocated -- just like a lawyer had written it for them! Deb is not at all interested in the bronc and we are hoping they will hold this off for a few days to see what happens. She was not spiking termperatures today, seemed in fairly good spirits while we were there, and even did a bunch of laps. Joey had Deb out there for 7 laps tonight for a total of 10 laps today. By hospital standards, that is 6/10 of a mile.

Deb only had a tangerine for dinner, but claims to have eaten a good breakfast and part of her lunch. Luckily, her dinner tray did not go to waste with Joey around -- who like Mike -- can eat just about anything and like it!

I met Dr. Porter in the hallway, on my return from foraging, with oranges and Pepsis for Deb's fridge and we talked about Deb's lungs. He said that they had given Deb some steroids to help to clear up the lungs -- but when I mentioned this to Deb, she did not recall getting anything other than her normal breathing treatment, which she has been getting for some days. FOD's sorry for the lack of clarity here, but there is none. Just giving you the facts.

Obviously, our concern for the next few days is to clear up the pneumonia -- or whatever it is-- and to get those counts up. Thanks to everyone for the calls, blogs, cards, food, visits, etc. etc. etc. It is helping us to get through this difficult time.

Deb sends her love to all.

Day 43

Deb's evening last night was a little more difficult than I had expected. She continued to run a temperature, but not near 104, and was coughing up a storm. Not sure if we are at the corner yet, or still some where down the block.

She had another chest X-ray this morning -- which must make #6 or #7!

Dr. Porter visited with Deb today and started her on Nupogen (phonetic) which is intended to jump start her white blood count production. Deb's wbc has been down close to 0 for almost two weeks. With no immune system, she is susceptible to everything and is catching everything. The Dr. wanted to get this turned around in the right direction. Hopefully, this drug will get the counts headed up and Deb's immune system can start fighting these bugs!

Kris was able to stop down today and visited with Debbie. When I called, they were having a good visit. I hope she does better than Marian and Eileen -- who both have come down with the mysterious bug.

I will have a more fullsome report tomorrow when I visit with Deb. Thanks for all your help and prayers.

Deb sends her love to all.

Day 42

Today was a good day for Deb. When I arrived at 9:20 they were ready to move the floor. Apparently, they had moved "kick-off" up by 30:00 minutes but did not tell anyone! Lucky for us, we were ready to go and we were the first ones off the floor. (You know how Deb loves being first!). So, instead of moving between 10:00 and 12:00, we were in the new room before 10:00, and glad to be there. We took the air bed with us, hooked everything up ourselves and we were "home" again.

Deb has a great room, #6008 Rhoads. It is a the corner room with three big windows looking out over UPenn Dorms. It is a very large room, about 1/3 again as large as we had before, with a beautiful bathroom (marble no less!!) with hard wood floors and built in book shelves. She even has her own thermostat! Her new phone number is 215.615.8147. (Thank you Mer!)

Deb did well today with her fevers. The highest we saw today was 99.5, which is great! But she was wiped out from the past few days, and just not herself --but aftet 42 days -- who would be their self?? Deb has done more than her part, wants to come home, and needs to be here.

FOD's -- Deb has pushed off visitors because of her fevers and her expectation that she will had another problem with her throat. Based upon what I have seen, I do not think that the throat is going to be a problem. The fevers seem to be abating, and that said, some day time visitors, could probably be in order if it is convenient for you. I may be on the fringe, but Deb seemed depressed today, and could use some company, other than me.

I think Deb is turning the corner and I was very encouraged today. We will continue to hope for the best.

Deb sends her love to all.

Day 41

Sorry FOD's -- but it is "same old same old." Deb had high temps all last night and did not sleep well. The care continues to be excellent, but everyone remains puzzled as to why Deb keeps spiking these high temperatures.

When I arrived at about 1:00 today, Deb was resting but was scheduled for another chest X-ray. Our friends in Transport found the most indirect way to get to the X- ray department possible. I was ready to board the train at 30th Street! I know why Deb hates to leave her room now. She kept looking up at me wondering, "where is this woman taking me?" Of course, she was new and was more lost than we were. Eventually, we got there and we were again parked in and amongst the sickest people I ever saw. We thanked our Transport person and then moved to the hallway to await our turn, and when it came the X-ray was clear. We did not wait for Transport to reverse her course. Rather, we did it ourselves and were back in the room in about 1/10 of the time! I know there is money to be made here.

Like yesterday, Deb had her breathing treatment shortly after 4 and then got an awful raging fever again. I wonder if this is connected? It was 104.8, she got the shivers, we got the ice bags, etc. etc., it is just a mess when that happens. They gave her a cocktail of stuff and she was prettty much calmed down within an hour. She was then just sleeping on and off whenever they would leave her alone.

All day, I think she ate one small can of peaches -- so this is day 2 of no appetite.

When I left, she was resting, but not sleeping, and pretty agitated with the whole thing. Of course, no one can blame her. Hopefully, Deb will turn the corner soon. She can use a break.

Deb sends her love to all.

Day 40

We are not sure if this is "dejavu all over again" or not yet, but Deb spiked a major temp. this afternoon +104, got the shakes and that got the floor hopping again.

Deb was not feeling good for most of today. She had a bad night again last night with her cough that kept her up. She has nebulizer treatments, inhalers, etc. to keep ahead of the congestion and to keep this thing out of her lungs, but it is keeping her from resting. When she called me this morning, she said that she did not sleep most of the night last night and she was coughing so much that her ribs were stargin to hurt. She was not happy and had no appetite. She ate very little today, and so we are doubly glad that she tanked up with her buds last night.

Joey and Allie came down from NY and visited with Deb for the early part of the afternoon. They were attired in their banana suits when I arrived with soft pretzels and mustard all around. The kids ate up but Deb took a pass, as she was starting to fade into the fever. After the kids left, Deb spiked the fever and they gave her an interesting series of meds conisiting of tylenol, benadryl and oxy-codo that knocked her out, stopped the cough and brought the temperature down to 100 within 2 hours. The only problem was that as her cough subsided, she began to get itchy all over (allergic reactions again). Although it worked very effectively, Deb is afraid that she will have another allergic reaction like the last time. We are happy that they are watching her so closely and that they are dosing Deb in small measures to avoid a repeat of last time. The nursing care at HUP is excellent.

When Deb was spiking, they also brought 5 or 6 ice packs that were "strategically" placed and Deb took a long nap, packed in the stuff. Any FOD out there knows that this girl is not an ice queen, but she was loving the stuff tonight. At one point, she had three bags around her head! In any event, any or all of the above worked and Deb was feeling pretty good when I left. Let's hope that they can give her this cocktail again tonight and that Deb can get some rest and begin to turn the corner with this thing!

If I have not mentioned it lately, the rash is still there, from ears to ankles, but not any worse nor any better.

As of now, all visitations are off. If we are in dejavu, then the next 3 days will be tough. Hopefully, we are not there and we can count on Deb's continued improvement. Please also note that we will be moving on Sunday morning. We will be moving to 6008 Rhoads -- newly refurbished -- with a fridge and bigger than her current room, on the corner and with a view. Deb may never want to come home! Hopefully, this will be the best of the 5 rooms Deb has been in during her stay. I will post the phone number and proper address tomorrow. They did come to explain the move, etc. at some point during the afternoon.

Deb sends her love to all.

Day 39

Deb had a difficult night sleeping again last night because of her cough. Unfortunately, the cold is now moving to the front part of the radar screen as it is continuing to get worse and is raising our concerns. We will need to watch this closely over the next few days.

Deb had a great visit today with some of her girl buddies who brought dinner from one of her favorite restaurants in Lansdale. When I called they were yucking it up and having a fine time. Deb said that I have never been to this restaurant because it has "lines" waiting for food, but I can hardly believe that to be true! But I don't recognize the name of the place. Deb's friends have visited for hours today and Deb sounds very contented and full, except for the cold.

Deb is now running a farily decent temperature +101 and we will be sleeping with three phones next to my good ear tonight. Hopefully, the meds. that Deb is on will continue to keep this menace in check. We will be watching closely and will keep you posted.

Deb sends her love to all.

Day 38

Deb seemed to have a pretty good day today, all things considered. Because of her current viral status, the poor thing has to stay in her room with the door closed, except for her laps in a gown, gloves and mask. All the staff that comes in must gown and mask up, which makes for little socializing, which is hard for her. Deb did 18 laps today, which may be a record, and is probably induced by the clostrophobic conditions she now contends with.

The cold is no worse, nor any better. But it is staying out of her lungs and that is our biggest concern right now. Her rash continues -- but not as "angry" as it has been. It still goes from her ears to her ankles and itches like crazy, but she is getting used to it. You have to see it to believe it. Deb has had to endure a lot, but she is haning in there.

Deb actually had 3 meals today -- a breakfast and lunch from the tray. They are now making a custom breakfast for Debbie ( a cheese omlet and a blueberry muffin) which she is says she likes. She had a tuna sandwich for lunch, which she also liked. Frankly, Deb has been so gastronomically traumatized while at HUP, that not so good stuff looks real good to her. Like yesterday, I went over to the campus food court and found some nice raviolies, with tomato sauce and cheese for her dinner. She ate all of them and enjoyed them.

We did a few more laps after dinner and Deb was getting ready to settle in for a movie before bed. The DVD player and the Netflix are filling that space after dinner and before bedtime when Deb was getting lonely. Thanks to Jess for that.

Deb received 15 cards and 1 package today which really brightened up her day. We thank you for that and hope that they can keep on coming until we get out of there!

Deb will have some visitors tomorrow -- in full banana gear -- and I will be off from HUP because of PM office meetings.

Deb sends her love to all.

Day 37

Since our Special Guest Posting, the two punctures from the skin biopsy turned black and blue and swelled up -- not surprisingly with no wbc. We tied an ice bag to the area last night, but it still looked awful sore today when we changed the bandages.

Deb also had a nose and throat culture taken last night and she has an infection that requires all visitors to wear a mask, gloves and gown. Deb called her scheduled visitors and they have been cancelled for tomorrow. This problem is the reverse of what we had been guarding against. Now we have to get protected from what Deb has contracted -- we are surmizing that this is probably related to the long stay at the eye clinic waiting area last Friday.

Because of this latest problem, Deb was scoped again today and they took her down for another CAT scan. This time of her sinuses. Those results have come back and they are fine. They are all over this case and so far -- with these minor issues, Deb is hanging in there. Her wbc is beginning to register and we continue to hope for the best.

Deb had a zesty chicken crepe for dinner from the Campus food halls. It is just a short walk from the hospital and all of the staff raved about them. Deb loved it while she was eating it. Let's see how this sits with her. This crepe was made with chicken, green peppers, mild salsa, onions, etc. Could be writing a different song tomorrow night, but she liked it tonight.

After dinner we dressed up in our yellow gowns, masks and gloves and did about 7 laps. Probably looked like two giant bananas walking around the halls. Deb was in good spirits when I left and we hope that Deb has a good night. She has been trying to sleep in a little longer these days. It has dawned on her that getting up to be bathed, in new PJ's and the bed made by 7:30 really only makes the day seem longer.

Thanks for everyones' help over the past few days. Hopefully, Deb is now on the mend.

Deb sends her love to all.

Special Guest Posting # 6

And now here she is live from Rav 9 -- Heeeers Debbie!

Hey Everybody,

When I woke up this morning, I had a cold and a runny nose and a loose cough. I thought YIKKES, this is it. "0" wbc and a cold -- just what the doctor didn't order! So I started pushing fluids and doing laps.

The nurse practicioner came in and was very concernced and that we the last I saw of her. She ordered another antibiotic #4 to cover a fungal pneumonia.

As reported in yesterday's blog, we were scheduled for the bone biopsy this PM. Joe was scheduled to come down by early afternoon to help me through this barbaric practice. However, early in the morning, they changed their mind and decided to do the biopsy in the AM, because they now wanted to do a CAT scan and chest X ray in the afternoon. So about this time, I am getting a little anxious about going through this procedure alone, and then to be lost in the labrynth of HUP. But I forgot to tell you that they pre-medicated me with ativan and dilauidid for the biopsy -- now I am getting loopy with the drugs and then they decided not to do the biopsy after all.

Then Dr. Porter appeared (from behind the big curtain of Oz) and said that we do not need to do the biopsy because we do not need this information at this time. [What does he mean that we do not need the information??? -- That is what we are all looking for!!] What has since been explained to us is that they are going to do the biopsy as an outpatient -- which means he will do it -- after my numbers recover. They believe that a post-discharge biopsy will give a truer read of the extent of my recovery. They are expecting no leukemic cells.

He also explained that no matter what the results of the biopsy, they would not put me through another round of induction chemotherapy anyway. He said that I had handled everything that they had thrown at me and that I was doing fine. So we are taking this to be good news.

But they did go forward with the CAT scan -- no results yet, but I do not think that it is in my lungs yet, but they are being very cautious with any kind of cold with a 0 wbc. Joe was with me for this and was prepared to wheel me back to the room assuming that Transport would not arrive for at least an hour or so. Our Transport guy did great today and was there as soon as the procedure was done.

Once back in the room, I had a mac and cheese and made Joe get me a soft pretzel from the hotel gift shop. Yes girls, this is a 100% carb diet -- whatever I want, I can have!

Then dermotology came to my room to do an inspection of my rash. They were all excited at such a fine disply of skin misery and desperation. It is not every day they could find such a fine specimen of flaming, watery rashes. They did two biopsies, complete with stitches in order to rule out a skin infection. We will find out in about 1 week what this was all about.

Then we went back to boring old laps around the floor. I cannot wait to come home and it seems now that it will probably happen in the middle of next week. Although we will not have any information about what is next, we will simply hope for the best and take it one day at a time.

So again, thank you thank you for the continuing onslaught of cards, gifts, blogs, and well wishes. I feel so loved from all of you guys.

I love you all.

Debbie

Day 35

Deb was in good spirits today, had a good amount of energy, ate a very nice helping of roast beef, whipped potatoes (with cream cheese) and green beans from home -- big lunch send off for Mike -- and then she did her laps, with her personal trainer (mirrored sunglasses and bluetooth ear piece excluded). Mike went back to school today and he is safe and sound in Happy Valley. He was a very big help to us when Deb had her "dark time" the last time. On balance, however, he had three nights at HUP and 4 nights in Miami. Not bad, not bad at all. I'd take 2 nights in Ocean City!

Deb seems to be doing much better at this stage of the second induction than she was the last time through. By my counts, everything fell apart 9 days after the chemo stopped and she had 3 bad days leading into the collapse. While she does have a rash and is taking in fluids, so far none of this is as acute as it was the last time. The rash is there but it is not as swollen or as "hot" as the last one -- we are hoping that the new med regime will continue to protect her, but not cause her the extreme discomfort the last round did.

We will have the third bone marrow biopsy tomorrow. This was moved up from Tuesday. FOD ALERT -- FOD ALERT -- FOD ALERT -- SEND ALL POSITIVE ENERGY EAST FOR THE P.M. I have an important meeting in the morning that I cannot miss and Deb will not bare her bottom until I arrive. Since Deb already stared down one of the docs., her Nurse Practicioner should oblige Deb after this length of time. So we expect that it will happen after lunch. The future will ride on this outcome, and we are hoping for the best.

Deb sends her love to all.

Special Guest Posting # 5

And now, live from Rav 9 -- Here's Debbie!

Dear FOD's and Family -- GET ME OUTTA HERE!! Ok, it is almost week five and I am a little crazy. But there has to be an easier way to do this. I just read last night's blog -- it made it sound so funny, but let me tell you -- it was not funny yesterday! I agree with Kris and I do need a hunky, private body guard. He can transport me as needed, insure that only good news guys get in and chase the food service people out the window. Seriously, I am doing OK -- just really, really anxious to come home.

My vision is still blurry, but the docs. say that it should clear up in a week. My platelates should not go down that low again, so hopefully, this is a one time thing.

I did about 10 laps today with the boys and Joe. It does feel better to keep moving. Maybe tomorrow I will poke my head out the front door, so long as it doesn't freeze off.

We have sad news to report. Simmie was put to sleep today. She had been in failing health for some time and was no longer able to control her lower regions. Joey insisted on taking her himself and as you can imagine, he is having a hard time with this loss. The boys came down right after the vet and we shared some good memories and that helped the boys.

Your continued support and love with the cards, letters, blogs, calls, and well wishes, inspire me every day. Truly, this is what is getting me through this. I love each and every one of you and I hope that we can all get together for a big bash once I get out of here and get my Cosmo legs back underneath me.

The bone marrow is scheduled for Monday. Keep the prayers coming.

Love always,

Debbie

Day 33

After I left last evening, there was a tense moment when new Dr. Pearl wanted to move Debbie to the step down ICU unit for closer observation. Dr. Debbie informed Dr. Pearl that she was not leaving her room and that she was dehydrated and needed fluids. He was to hang the fluids and leave her alone! When they hung the fluids, Debbie improved immediately and Mike came home last night around 10:00. Debbie did fine during the night and she had an OK day today. She was up and doing laps on her own this morning, although the rash is still boiling. As was the case the last time, she is now taking on the fluids in the rash and she is "filling up" again.

Deb also has been having problems with her eyes this time and she was taken to the eye clinic this afternoon for an inspection. She has some burst blood vessels in her eyes and a scratched cornea. Apparently, this is because she was so dehydrated.

When I arrived at about 4:00, she was not in her room and had left her room at about 2:15. When they told me where she was, I suspected that she was most likely parked in a hallway somewhere waiting for the infamous "transport" team to arrive. Unfortunately, no one on Rav 9 could tell me where the eye clinic was located after a few minutes of waiting, I went down to the information desks and started asking questions.

Sure enough, when I found "Gates 2" there she was. FOD's what a pitiful sight! Parked against the wall, IV fluids drained and empty, pumps shut down, little blue hat over her bald and slumped head -- waiting -- for one hour in a public waiting room to be wheeled back to her room. Absolutely attrocious! We took matters into our own hands and began the trek back to Rav 9. We rigged the pole between the feet of the wheelchair and Deb held the pole. I had the wheelchair and her huge chart as we made our way down the halls. While I was pondering how to get this rig up the escalator, a transport person appeared and she knew this picture did not look right. She acted as our guide and she directed us through the HUP hallways back to 933. Needless to say, Deb was exhausted when we got back to the room. She went straight into bed, the fluids were restarted, platlates were hung and she received 2 units of blood.

There is money to be made here in a private transport service. This could be like the private water taxis in Venice. You can take the public transportation that will take 2 hours for 5 euros or get there by private water taxi in 20 minutes for $100. There is definitely a market here.

The boys arrived about 30 minutes after this disaster. Had they been there earlier, we would have solved the escalator problem with a brief protage up the steps and over the rail. While Debbie slept, Joey took a nap on the recliner and Mike and I went to CHOP to experience the great cafeteria all the nurses have raved about for the past month. When we found our way to the CHOP entrance, a CHOP Rambo Security guy asked us our business. When we informed him that we were there to try the cafeteria, he informed us that we were only allowed on these premises for "official" business and eating in the cafeteria was not official enough. We were rejected and we tramped back to the slop shop and did the best we could.

When Mike and I got back, Deb had recovered and was sitting up in bed and enjoying the company. The temp. that had been at 100.3 was down to 98.4 and she was doing well. Her dinner came and got the "ugh" so the boys were free to eat it up and that they did. I expect by now that she has turned back about 80 of the 99 meals that have come her way. Can you believe that? Deb had a mac and cheese for dinner, which now seems to be the dinner of preference. She ate the whole thing again, which compared to last time is very good.

Deb had a nice visit with her boys and she laughed and laughed about the dumb stuff that they do which Joey can imitate in a hilarious way. We had to send them both home before Deb blew a gasket from laughing.

Deb seemed fine tonight and we set her up with a movie that should take her into her bedtime. Since she looked fine when we left and I will save the overnight until it is needed. Hopefully, for both of us, that it will not be necessary.

Deb sends her love to all.

Day 32

Deb was very tired all day today, she felt weak and walked very little. When she did walk, she got short of breath and was dizzy on occasion. While my short visit continued, I could see her "crashing" and I expect that we are now in for another dark time.

The "rash" which was barely visible when I arrived was in full blaze by the time I left. The nurses were alerted to this and they started into action with an EKG, sugar test, antibiotics were hung and a chest X-ray was ordered. Deb could not stand for a BP routine and her heart rate went to 139 just standing. Mine gets to 141 running full out on the machine. We are going to the same place we were at the last time.

Mike is staying the night tonight. I will stay the night tomorrow night and we will see where we are on Saturday night. I expect that Deb will be in bad shape for the next 3-4 days. Hopefully, we can stay out of ICU this time.

Nothing much more to say. Deb will have to tough this out again and hopefully we will do better than the last time.

Deb sends her love to all.

Day 31

Well FOD's, not sure where we are going now, a little rash is beginning to appear -- Deb was scratching like Simmie in summer yesterday-- and we have something blooming today. Swollen gland in her throat, along her jaw line -- not liking this stuff! But everyone is watching closely and taking these indications seriously. Looks like something may be cooking here and will keep you posted.

Deb was very tired today, which is understandable with all that PSU excitement last night. Deb watched until 11:30 and gave it up (I made it until 9:00). I watched the good parts on the news this morning while on the treadmill. Deb slept and rested alot today. Jess tried to stop in one more time for a drive by good bye but Deb could not make it to the lobby. The previously dormant lower regions have become active again. Sleeping and running were today's activities. That would make anyone tired.

Mike arrived home safe and sound, but very much worse for the wear! He had a fantastic time in PSU-ville, enjoyed South Beach, the clubs, the bars and the game. But hey -- who wouldn't have enjoyed a 4 day tailgate? I asked him where he ate yesterday and he said that the PSU tailgaters fed him. He just mooched off of everyone (and anyone) he could and made a day of it. As I understand it, they were at the game at 1:00 PM for the 8:15 kick-off. He came home and slept for the afternoon and is now with Debbie for a visit.

Jester went to VA today. She and Deb had good visits and that made both of them feel better and we are glad for that. She called us later today and left us a message on the machine. Wanted to know, "if it was too quiet up here now?" We have not answered yet, but are savoring the serenity.

We are keeping close watch on Debbie and will keep you posted.

Deb sends her love to all.

Day 30

Debbie is doing well and she had a nice day today with Jess and Joey. Because of the rain, they were able to go down together and visit with Deb, have lunch from the trucks and enjoy each others company. When I arrived at about 4:00, Jess was leaving, Joey had jumped a train 2 hours earlier and Deb was ready for a nap. We tucked Deb in, she slept for about 1.5 hours and I retired to my Ravdin 9 office.

When Deb awoke, we talked and did some laps until dinner arrived. It was a Salisbury steak, mashed potatoes and gravy (they still make that stuff??), so we sent about meal 82 back to the kitchen and Deb had some chicken soup that we made over the weekend. We did some more laps and she was hoping to stay awake for the PSU game, but I doubt it.

Deb's counts are way down and she is definitely getting more tired now. She slept through part of a visit yesterday and today, and that is probably how it will be for the next week.

Deb was getting a little itchy today and we were closely watching her skin for another rash. We think that it is only the dead skin from the last two rashes, but only a day or two will tell. Her throat is doing fine, she is keeping up with her mouth care and things look good so far. The next few days will be the toughest times for her.

Please be patient if you call and don't get through. For the short time that I was in the room, there were 5-6 calls. 5 of them on the cell phone --- people you are killing me!!! Use the land line 215.615.8349.

Jess and Christian go home tomorrow and Mike comes back from the Orange Bowl.

So far so good with this round of the chemo. Keep hoping for the best.

Deb sends her love to all.

Day 29

Deb had another good day today. She had visitors for most of the day, Jess spent time with her Mom, she ate well, took a nap and looked good when I arrived at about 3:00 PM.

Deb finished the chemo treatment today at about 2:00 PM -- so she is happy not to be hooked up to the pole! Her WBC is down to about 0. Her HMG is 8.5 so she will probably get a unit of blood. What they have done differently this time is that they have not started any antibiotics. Her allergic reactions to these drugs were her downfall the last time and since she never did have an infection to anything, they have decided to monitor her condition and not anticipate anything until there is a need for something. So far, this strategy is working and let's keep our fingers crossed that it is a winner.

Pammie visited Deb yesterday and we heard from Fred today. They have both agreed to help Deb and we will arrange for testing to see if they are a match for a potential stem cell transplant. Hopefully, we will not need it, but we are grateful for their agreement to help.

With the chemo done now we enter the period of the unknown. Because of the chemo, Deb is now completely compromised -- but not yet as weak as she was the last time. Hopefully, Deb will not encounter any temperatures or infections and she will come through this without any further problems. Unfortunately, this is an hour by hour type of thing. Everyone needs to be flexible and patient. We have had a lot of impromtu visitations over the past week and that was great for Deb. After tomorrow, the visitor Nazi will take control again, guards will be posted and Ninja will live in her ceiling until we see our way through this sensitive period.

Deb and I watched a bit of the Fiesta Bowl, she had her dinner (from home a mac and cheese) and I was able to come home and play with Christian for a short time before his bath and bed. I was surprised that they still even made play-doh let alone that it still smelled and tasted the same.

We appreciate everyone's thoughtfulness and help over the Holidays. It was uplifting for Deb to see everyone and, timing wise, it worked out perfectly.

Deb sends her love to all.

Day 28 -- A New Year

Deb and I had a nice evening after the posting last night. We did a few more laps, had some ginger ale (did I say ginger ale??) and were putting the lights out around 10:45. They hung the chemo early and it was done by 11:00 and the nursing staff pretty much left us alone for the evening, except when the IV alarms went off. That happened about 3 times throughout the course of the evening -- and not for any reason you nurse buggars might be thinking about!!

Deb rested very well last night except for her bathroom breaks, which are no small feat, i.e., get out of bed without tangling your IV lines, unplug the IV machine, traverse the room, open the door, turn on the lights, wheel the contraption into the bathroom, perform, catch the output, measure the output, record the output, wheel the machine back across the room, replug the machine, back into bed with untangled lines, and back to sleep. We did this exercise once every two hours or so. Deb is pretty good at it -- of course I was stumbling and tripping behind here with the plugs and the pole, but we did not have any mishaps. No wonder the poor woman is tired! Add to this the fact that Deb's room overlooks the heliport (white light -- red light -- white light -- red light -- all night long) it is a sureal experience.

The recliner was a cross between Premium Economy and Business class. Unfortunately, it was made out of some cheap leather substitute, and even with a blanket and sheet underneath, I was sweating for most of the night. Deb on the other hand was under a sheet, blanket and top blanket and said that she was cold! But on balance, I got twice as much sleep there as on the overseas flight and felt OK for the rest of the day.

Deb did her morning routine, i.e., hot bath with the Donna TeaBags towels, while we made up her bed for tonight. This bed making ritual consists of an air mattress on the bed, a fitted sheet over the air mattress, a blanket folded in half to counteract the rubber of the air mattress, another fitted sheet to hold the bottom sections together, a sleeping sheet, one sleeping blanket and then a top blanket - now from Carole Ann and Becky. By the time Deb finished her bath, I was in another full sweat from running around the bed creating this sleeping pyramid!

We had breakfast together and did some laps before I left for the day. Shortly after I arrived home, Jester, Pammie and C were on their way down to the hospital. They were able to visit for about 1.5 hours and C did a great job. He was in Debbie's room watching one of the Baby Einstein movies on the DVD player while the girls visited. Deb was very happy for this special time.

When Jester was leaving, Joey and Allie were coming up and they visited for another 1.5 hours. Deb had a lunch of Mac and Cheese (from home) and she did some more laps. Considering the circumstances, Deb had a very good New Years Day.

Mike called from Miami -- he is having the time of his life, but cannot believe how expensive everything is. He told me $50.00 for one round of drinks (notice not food) for 5 people. I am sure that he will be crabbing for lunch in a day or two unless he can meet up with his Uncle Rick.

Debbie has a full schedule for tomorrow and we hope that she continues as strong as she has been so far for round 2. If there is going to be another "dark time" I am guessing that it will come toward the end of next week. I will keep you posted.

Deb sends her love to all.