Bob's surgery a success

Family and friends,

Bob's surgeon just came out to see me and said everything went well. The hole in his trachea was covered by muscle and he has 5 stitches that will need to be removed next week. He also looked at Bobs vocal chord and said the left one is "bowed out". At this time there is nothing they can do about it but wait until the stitches heal. Overall a success. Bob is in recovery and I'm hoping his voice is better. Thanks to everyone for you support.
Please keep Bob in your thoughts and prayers. If recovery goes well he'll be out of here by noon tomorrow just in time to see Christopher dressed up for Halloween.
Love and thanks,
Michele


-- Posted from my iPhone

Surgery scheduled for Friday...

Family and friends,

After calling the oncologist and explaining how it doesn't make sense for Bob to have a surgery scheduled for the same day that he is supposed to be discharged (Saturday), she spoke with the ENT and they have scheduled surgery for Friday - time TBD. I guess we'll take it and hope Bob recovers quickly before he is discharged. I also submitted the final paperwork for Bob's long term disaiblity claim. That was a nightmare. I am hoping finally that they will approve him and send him the last month's worth of checks. Other than that, everything is going pretty well with Bob. He is very tired, but spends his day watching NCIS, CSI Miami and playing on his iPhone. He wanted me to say hello to everyone for him.

Thanks to all who keep reading the blog. Please continue to keep Bob in your thoughts and prayers.
Love and thanks,
Michele

Bob saw ENT doc, going to have surgery...

Family and Friends,

Thanks so much for all the encouraging words to myself and Bob regarding his neck and speech. I really think it did the trick because when I woke up this morning I got a text from Bob saying that the ENT doctor came by and Bob let him put the scope partially down his throat. I was very proud of him. Now for the not so good news. There is still a hole where Bob's tracheotomy site is and the doctor wants to close it. It would involve placing a flap of muscle over the hole in the trachea and sewing the skin together above that. Bob would not be fully knocked out, but in twilight. The doctor would then put the scope down Bob's nose and see what else is wrong. The doctor said Bob's left vocal cord is not fully functioning. The ENT doc is going to consult with Bob's oncologist to see about a timeline for surgery, but it sounded like he wanted to do it on Halloween morning (Saturday). Now I spoke with Bob's doctor last night and she said that if he had surgery she'd preferably like to do it as soon as possible because of the chemotherapy and the fact that all his blood counts go down exponentially day by day as well as his immune system and his ability to clot. Since I had to go to work today I told Bob to tell the oncologist that he wants to see if they can do the surgery tomorrow. Bob's response was "The doctors know best". I started laughing!!

So needless to say, I'm going to call the oncologist today and see what we can do about pushing this surgery up. It doesn't make any sense to do it on Saturday, the day he's supposed to be discharged. If they did it today, at least they could observe him for a few days - one would thing that would be the most logical thing. But as I have learned over the past few months, there is no rhyme or reason to the doctor's decisions.

I am still fighting with Bob's insurance company trying to get him long term disability. They won't release any checks yet. I did however get him unemployment. Did you know the max unemployment in the state of Florida is $275 a week? what the heck can you buy for that?? It's ridiculous. I've got to get this crap straightened out ASAP.

Please continue to keep Bob in your thoughts and prayers.

Love and thanks,

Michele

Bob back in hospital...

Family and friends,
Bob is back in the hospital for his second to last round of chemotherapy. He's in good spirits (as you can see from the photo), but still very tired all the time. He's going into this round with high counts which is good, but still having issues with the tracheostomy site not healing. I actually think it's infected again. But... Bob is stubborn and does not want the ear nose and throat doc to look at it with a scope unless they knock him out. The doctor won't do that because of the chemo, so everyone is stuck looking at the wound from the outside only. I'm just hoping there is no permanent damage to his vocal chords. He's still speaking at a whisper and no one can understand him on the phone. That's about it. I'll be hopefully giving regular updates this week since he'll be in there until Saturday.
Please keep Bob in your thoughts and prayers.
Love and thanks,
Michele


Bob with hair? Not...
-- Posted from my iPhone

Bob doing well, going back in for next round on Monday...

Family and Friends,

Sorry it's been 10 days since my last post. Things here have been hectic but good. The good news first - Bob has been doing fantastic on his blood counts - White blood and platlets are back in normal ranges and his hemoglobin is at 9.6 which is pretty high for him. Bob has been very tired and spends most days sleeping on the couch. We are working with his doctor on tweaking his pain medication which causes him to twitch -especially at night when he gets tired. They are trying to wean him off the pain patches first. Bob is still having issues with his tracheotomy site. At one point it looked like it was getting better, then we decided it would be a good idea put neosporin on it, and now it's getting worse. While Bob is in the hospital next Monday for his next round of chemo, they are going to have the surgeon look at it. I don't know how well that's going to go seeing as Bob won't let them look up his nose to get to his throat, but we'll see.

I'm still fighting for Bob to get long term disability. They have approved it finally after a month, but won't disperse until I get a letter from one of his doctors from 2008 stating he was receiving muscle relaxers for his back pain and not for cancer. It's just ridiculous. In addition, I received a phone call last week from Bob's work advising me that they laid off Bob. THANK GOD my company offers domestic partner medical and dental benefits, or Bob would be screwed. Cobra wanted almost $600 a month for medical alone. In addition, Bob has racked up over $1,000,000 in medical costs (yep, that's a Million with a capital M!) It's pretty screwed up- the insurance company tells you that you have a $5k co-pay, but then once you've reached that then they tell you they'll only pay 90%. So Bob's portion of the medical bills for the last 4 months is $100,000 out of pocket. Nice. I think we're better off living in Canada or Switzerland or something, but Bob won't have any of that. Sorry for the complaining, but it gets very frustrating fighting with these companies. At least Bob has Aetna now. I'm hoping they are much better.

Please continue to keep Bob in your thoughts and prayers. He'll be in the hospital Monday October 26 and get out on Halloween afternoon - just in time to watch Christopher trick or treat!!

Love and thanks,

Michele

PS. I'll make sure to post some pictures of Bob soon.

Bob hanging in there...

Family and friends,

Bob is hanging in there. He's been napping alot. His blood counts unfortunately have been dropping steadily to the point where his platelets were at 6,000. Normal is between 150,000 and 350,000. He went in as an outpatient yesterday for two units of platelets. He's keeping busy today watching football and wanted to say hi to everyone.

Please continue to keep him in your thoughts and prayers.

Love and thanks,
Michele

Ps. Thanks to Powerhouse Gym for the t-shirt and get well card. That was so thoughtful!


-- Posted from my iPhone

Bob is home and happy

Family and friends,

Sorry its been a few days since ive updated the blog. Bob is home now and doing pretty well. He's been trying to sleep as much as possible. I'm going with him to the doctor tomorrow so they can show me how to flush his picc lines. His counts are doing surprising well so far too.

Please continue to keep Bob in your thoughts and prayers.

Love and thanks,
Michele


-- Posted from my iPhone

Chemo a success so far, Bob coming home tomorrow...

Family and Friends,

Bob is holding his own very well with regard to the chemotherapy. His blood counts are holding steady and so are his platlets. The doctor said that Bob will be going home tomorrow. Bob is looking forward to eating real food (as opposed to hospital food) and getting to have Christopher come over to our house to play video games. The only issue that I'm dealing with now is fighting with Bob's insurance company Guardian to get him long term disability. They are making prove that Bob's Leukemia isn't a pre-exisiting condition (which is ridiculous).

Please keep Bob in your thoughts and prayers. As soon as he gets out tomorrow, I'm going to take a picture of him and post it so you can see his progress. He's been mainly living off snickers bars and whatchamacalits so he's putting on a few pounds since the hospital food isn't the greatest.

Love and thanks,

Michele

Day 1 of Round 3 chemotherapy finished

Family and Friends,

Day 1 of Bob's chemotherapy is finished and I must say that Bob is in good spirits. His counts before chemotherapy started were higher than they had ever been, 335,000 for platelets and hemoglobin at 11, his white count was in normal range as well. Bob has had no fevers in the past week, but has suffered from a screwed up internal temperature system. He's got the thermostat set at 65, and yet he's sweating through all his clothing. The doctor said it could be a side effect from the chemo, but as long as he's not showing a temperature everything is okay. They tested him again last night for MRSA in his neck area. I'm assuming it's going to come back positive again. Other than that, Bob's in good spirits and the doctor said as long as things go well, they can get him out of the hospital as early as Saturday which would be great!

Please continue to keep Bob in your thoughts and prayers.
Love and thanks,
Michele

Bob heading back for round 3 of 5

Family and friends,

Bob is doing pretty good. He was happy to see his friends Mike and Ed yesterday who came from NYC and Ft. Meyers to see him. We had lunch and Bob got to do some catching up. This morning we went back to the hospital for antibiotic infusions and then over to my parents for lunch. Now we are hanging out with Christopher and hanging Halloween decorations.

Please keep Bob in your thoughts and prayers as he heads back in to the hospital.

Love and thanks,
Michele
Ps Bob wanted me to say hi to everyone for him


-- Posted from my iPhone

Bob coming home today

Family and friends,

They kept Bob an extra day yesterday because they wanted to load him up with blood, magnesium, and potassium IVs so he wouldn't have to get any more this week. They are saving his IV lines for the antibiotics for the MRSA. I changed the dressing on his tracheostomy site last night and it's still infected. I'm hoping once he gets home it will get better.

As most of you know I bought Bob a blackberry so that he could keep up with his emails while he was in the hospital. He didn't like the way the internet connection was (so he said, I think he was jealous that both Dave and I had iPhones) and now he wants one. So I bought him an iPhone today. He won't get it until I get off work, but I think he's going to be happy with it.

Please keep Bob in your thoughts and prayers. He goes back into the hospital on September 31 for the 2nd round of consolidation chemotherapy.

Love and thanks,
Michele

Bob might be going home Monday!

Family and friends,

After a couple of days with no fever and increasing white cell counts (thanks to nuprogen injections) the oncologist said that as long as Bob would be willing to go home with a picc line and get IV antibiotics everyday for the MRSA they might let him go home tomorrow. Needless to say he was very happy to hear the news. Christopher stopped by to see him which made him happy too. Although Bob is tired he is in good spirits. Please continue to keep him in your prayers and thoughts.

Love and thanks,
Michele


-- Posted from my iPhone

Bob feeling better...

Family and friends

Happy to report that bob is feeling much better today. No nausea, vomiting, or fevers! Also the doctor decided to put Bob's blood on standby (genious idea) and when he needed blood yesterday, he got it in 15 minutes. It's funny how effective a squeeky wheel is!

Bob is much happier being back on dilaudid, rather than morphine. The doctor also said bob has MRSA in his neck and backside. They had him on vancomycin, but had to change it due to him having hearing issues. Bobs appetite is back, so I know he's getting better and he's checking his emails too.

Lots of love and thanks,
Michele


-- Posted from my iPhone

Infection at tracheostomy site in neck

Family and friends,

Tonight was a rough night for Bob. He spent the night neaseous and throwing up every hour (even though he didn't eat anything all day). We think it might be from switching from the dilaudid to morphine. The nurse had to give him ambien just so he could get some sleep.

When we woke up this morning the nurse came in and hung a precaution sign on Bobs door saying everyone who comes in has to wear mask, gloves, and blue gown. She said he has some type of infection at the wound site in his neck. It takes 3 days or so to figure out exactly what he has because they grow it in a pietri dish so we are still waiting. Bob is tired sore and miserable. He is NOT checking his email or texts or phone calls.

Please keep Bob in your thoughts and prayers.

Love and thanks,
Michele


-- Posted from my iPhone

24 hrs later, we got platlets. No blood yet

Family and friends,

After writing the blog last night I went out and spoke to the charge nurse about getting Bob some ice packs. She was nasty to me and told me to sit in the room and wait for the nurse. I was so mad I was beside myself. I called the nursing supervisor over the whole hospital and complained. 2 minutes later my ice packs magically arrived. 10 minutes after that, so did the cooling blanket. The dumb nurse set the blanket on 45 degrees and after 10 minutes bob had enough. He said he'd rather die than freeze like that. I tried to explain that I could increase the temp to 98.6 like they did in the ICU but it was too late. There was no convincing him. I just had to take it off. He used ice the rest of the night. Although Bob had a fever throughout the night the nurse didn't bother to give him Tylenol until 7am. I had to call down to the bloodbank to give them hell at 6 to find out where the blood was. It was here but no one seemed to be in a rush to bring it up. Bob got the platlets at 10. And were now waiting on the red blood. Bobs temp is still at 102. He's packed in ice, he is neaseus and refuses to eat. I talked him into one jello and a Gatorade. The infectious disease doc came in and we told him about the MRI debacle and he said they'd do a CT instead. When Bob realized he had to drink contrast dye, he refused. That's been our day thus far.

Please keep Bob in your thoughts and prayers.

Love and thanks,
Michele
Ps. They put Bob on a morphine PCA pump not dilaudid. And he's getting 1mg every 8 minutes.

Fourteen hours later and NO BLOOD STILL

Family and friends

It's almost 11pm and to say today has been frustrating would be a severe understatement. Bobs oncologist came in around 8:30am and ordered blood and platlets for Bob. We are still waiting on them. If you have been following this blog from the beginning you'd know this has been an issue before. Bethesda contracts with the big red bus which is community bloodcenters out of Orlando. They are waiting for blood to get here from there. Although my girlfriend is the director of the rival blood bank of south Florida and has previously told me whatever blood bob needed they would send it over in a matter of minutes, Bethesda hospital has refused. Time and time again have I asked. 11pm and still no blood. In addition Bob has now spiked a fever of 103. The nurse told me she ordered him a cooling blanket. That was an hour and a half ago. I have swiped some ice from the supply room and have stuffed rubber gloves with them and put them under Bob's arms to try to lower his fever. Tonight's nurse is USELESS.

Here's the icing on today's cake. They came to get Bob for an MRI. He wanted me to go with him. As the transporter wheeled Bob out of the room they were wheeling a person out of the room two doors down in a body bag down to the morgue. We had to wait next to the body bag while we took the elevator to the basement. I asked Bob if he was ok, he said yes, but it freaked me out. The MRI was one of the closed ones that's tight as a coffin with no room to breathe. As soon as they pushed Bob in he freaked out. He couldn't do it and I couldn't blame him after what he saw. Not to mention he had a fever, was in pain and was exhausted.

That was our day.

The only bright spot for Bob was that they gave him a pain pump that he could push every eight minutes and it would give him 1 mg of dilaudid. Now he was previously getting 2 mg if dilaudid every 2 hours. I'm no mathematician, but that's like 15 mg of dilaudid every two hours if he presses it every eight minutes which he's been doing. The nurse assured me when I pointed this out to her that the pain pump distributes the medication differently than an injection, but I think she's an idiot and I don't believe her. I'm exhausted and have had it up to here tonight. I'm going to raise some hell about getting Bob some proper ice packs.

Bob needs lots of prayers tonight, and I need a stiff drink...

Love and thanks,
Michele


-- Posted from my iPhone

Bob back on cancer wing, will be here awhile

Family and friends

Last night they admitted Bob back to the cancer wing. They gave him blood, platlets, and antibiotics throughout the night. Unfortunately when the oncologist came to visit this morning none of his counts had come up. He still has a fever albeit a low grade one. We had a consult from the infectious disease doctor as well. He is taking cultures of his tracheostomy site as well as his bed sore site to see if they are infected and are getting him an MRI to see if the bed sore wound got deep enough to infect bone in his back. In addition they have to put a picc line in but his platlets are still too low so they stuck poor Bob a million times for IVs and blood. He neausous, tired, and in lots of pain.

Please keep him in your thoughts and prayers.

Love and thanks,
Michele


-- Posted from my iPhone

Bob taken to emergency room

Family and friends,

When I got home from work today I went to pick Bob up from his parents house. When I got there he was complaining he was nauseous. We took his temperature and it was 101. I called his oncologist and she wanted us to immediately bring him into the ER. She said because he's on antibiotics he shouldn't be getting a fever and if he is that it can't be good. We are sitting in the ER room right now, they've done a million blood tests and so far his platlets are at 20,000 (normal is between 150k-450k) and his white count is at .3 we are awaiting the rest of the tests. In the meanwhile they have him a chest xray, IV fluids and gave him vancomycin. I'm very worried about Bob and will stay with him as long as it takes


until they get him stable. Please keep Bob in your thoughts and prayers tonight. He's going to need it.

Love and thanks,
Michele


-- Posted from my iPhone

Bob's blood dropping again

Family and friends,

This morning Bob went to his oncologist. Over the weekend his platlets dropped to 8,000 and his hemoglobin to 6.5. The doctor gave Bob the option of being readmitted to the hospital or go in on an outpatient basis for transfusions today. Needless to say he chose outpatient and I dropped him off at Bethesda at 9am. It's 6pm now and he's still at it. They gave him 2 red blood transfusions, 2 platlets, and a magnesium IV. He is tired but in good spirits. The doctor said he will need chemo up until December so we won't be having our welcome home/engagement party until January it looks like.

Please keep Bob in your thoughts and prayers.

Love and thanks,
Michele


-- Posted from my iPhone

Bob's platelets dropped to 8,000 - transfusion needed

Family and friends,

Bob has been out of the hospital for the last 4 days. He has been doing good at home and spending the afternoons at his parent's house. It gives him the opportunity to see Christopher and eat his Mom's famous "macaroni and tuna fish" that he eats by the truckloads! He went to see the oncologist today and they said his platelets have dropped dramatically to 8,000. He is back at Bethesda now having a platlet transfusion on an outpatient basis. I am very concerned that he may become neutropenic over the next few days and he will have to start wearing a mask so as to not get any infections.

He has 2 wounds still, the trachesotomy in his throat as well as the stage 3 bed sore wound that he is dealing with. I have gotten pretty good at taking care of these wounds but we have an appointment with a wound care center tomorrow so that I can get proper training in dressing them for him.

Bob wanted me to tell everyone thank you for all the help and support he has gotten. I will follow up tomorrow and let you know how he's doing.

Love and thanks,
Michele

The eagle has landed.... Bob is HOME!!!!!

Family and friends,

It is with great joy that I can finally say that Bob is home!! He got home late last night, I made the couch up for him today and he is getting around with a cane in the house. Christopher stopped by to visit today for about an hour and he and I played while Bob watched. The smile that came across Bob's face was priceless. It is a time for happiness and celebration today.

Bob's counts are still low and according to the doctor may be dropping still so he may have to go into the hospital on an outpatient basis for a blood transfusion every couple of days. Tomorrow I am going to go back to work and Bob is going to spend the day with his parents.

I cannot even begin to thank everyone for all the love and support you have provided Bob and I over the past 70 something days. Bob still has 2 more rounds of Chemotherapy to go over the next two months. I will be still keeping up this blog daily as his progress continues, so please keep reading!! He still has a long road to recovery.

Love and thanks,
Michele

Bob possibly coming home MONDAY!!!

Family and friends,

I don't want to jinx it, but the doctor said that if Bob can show that he's not actively bleeding and it's safe for him, she's going to let him go home on Monday!! His counts dropped a little bit today, but that was to be expected. He's having a lot of joint pain and has his last day of chemo today. Please wish him well!

Bob's friend Dave left us today to go back to Ohio. He was such a help to me during this week, watching Bob while I worked. I cannot thank him enough!

Please keep Bob in your thoughts and prayers and I'll update his progress over the weekend. Have a fun and safe Labor day!!

Love and thanks,
Michele

Spinal Tap today... not the movie either...

Family and friends,

Bob has finished his second day of chemotherapy and has one more day to go. This morning the Chief of Surgery came into his room and wanted to put a scope up his nose and down into his throat to see the reason that Bob hasn't been able to speak as well as he should. (He still sounds very hoarse and like Darth Vader) Bob refused the scope and I chased after the surgeon and asked if he could come back next week. He said he would try.

I think Bob was just a bit overloaded this morning because his oncologist told him she wanted to do a spinal tap on him today to see if the Leukemia has gotten into his spinal cord and brain. I've seen this procedure done on TV and it look like it hurts like hell. I'll give an update once this happens.

Bob's friend Dave who has been staying with Bob this week has started a "Lift Strong" line of apparel and merchandise which just launched on his website September 1. All proceeds from the sale of this gear go towards the Leukemia and Lymphoma Society. Bob is not the only person who has been affected by this disease in the powerlifting community and it is amazing when a group of committed individuals get together for a common goal the things they can accomplish. If you are interested in any of the merchandise or reading about other cancer survivors affected by this, I encourage you to check out Dave's posts at http://www.elitefts.com/documents/liftstrong09.htm
the link for the apparel is : www.Elitefts.com/liftstrong

Thanks again to everyone for their prayers and words of encouragement for Bob. He really appreciates it.

Love and thanks,
Michele

Day 1 of Chemotherapy has started

Family and friends,

Bob's doctor started him on chemotherapy last night at 6pm. He receives it via IV and it takes a few hours to get through. He got his second bag of chemo this morning at 6am. He is a bit nauseous but doing okay. He will get his next round at 6pm on Wednesday night. He seems very mobile and is trying to keep his weight up. Yesterday they weighed him and he was 198. (that's up about 15 pounds from a few weeks ago). Dave is here and is taking great care of him during the day.

I'd like to especially thank Traci Tate today. With her kids starting school and running two businesses, the fact that she can sacrifice her husband for a week to take care of Bob while I work is incredible. I am truly grateful and appreciative.

Please keep Bob in your thoughts and prayers.
Love and thanks,
Michele

Bob to STAY in Boynton Beach...

Family and Friends,

After days of fighting with U of Miami/Jackson about trying to find a bed at their hospital so that Bob can receive his chemotherapy that is 55 days overdue, they finally called this morning to tell me that they had a bed for him. Upon further investigation however, they decided that Bob was going to share a room. I reminded them that Bob needed chemo, that he would be neutropenic soon, and that he had MRSA. They basically told me "too bad" and said it's double room or nothing. In addition, I wouldn't be able to spend the night with him either. I asked about the special air mattress that Bob had been using because of his bed sore wound, and they blew me off on that too. After relaying this to Bob, he'd had about enough. He decided that he was going to stay at Bethesda. Although the doctors may not round 24/7, and they are not on the cutting edge of technology, they do know him as a person and treat him like he matters. Because he's been there for 2 months all the nurses know him, they have a vested interest in keeping him alive. They kept him alive the first time when his liver, kidneys and lungs shut down and he was bleeding internally. I'm satisfied that they can do it a second time with the lesser chemotherapy too. The only way we would transfer him is if he needed a transplant, and he's not at that stage right now.

I spoke with Bob's oncologist and they are starting the chemo today at 6pm. Please say a prayer or wish him luck.

Love and thanks,
Michele