I have been debating whether or not to repost my Original Blogs relating to Jim’s medical issues here.  But it’s those moments in time that really have defined how I became a hermit in the first place.  How I originally began blogging.  They’re historically relevant to my life.  They should be here.  I don’t expect anyone to really read them.  At times they are full of drama … and they most certainly don’t show off the better part of my personality.  But they are real.  They are what I was experiencing in that moment – true, honest, raw.  And I can’t change them.  I won’t apologize for them.


April 30 2006

It’s 2am – I’ve been at the hospital most of the day with hubby – it’s not something simple this time – it’s bad. I’ll update you when I can. Send positive thoughts and well wishes our way. Family – you can call my cell phone for all the details.

April 30 2006

As some of you are aware of already, my husband is a Cystic Fibrosis patient who had a double lung transplant 15 years ago, and a kidney transplant 3 years ago. This weekend he was rushed to the emergency room with what was thought to be a bowel obstruction. After many tests and an eventual surgery we learned that the immunosuppressant’s he was taking to stop rejection of the transplanted organs has allowed lymphatic cancer to settle into his small intestines and abdominal cavity. At this time his medical team is attempting to increase his blood pressure and lower his potassium levels which have become a major concern. The next few days will be critical in his recovery.

Thank you for the kind words – please continue to keep us in your thoughts over the next few weeks. If you I may not be able to get back to you individually – so check here for sporadic updates. I’ll be home every night with my son – and will read every message sent.

6:10:09 pm     May Day Update

It’s funny what the brain does to you in the middle of the night. Here Hubby is laying in the hospital fighting off an infection – and we’re all preparing for his upcoming battle with Cancer. Yet – I wake up in the middle of the night after dreaming about Extreme Makeover Home Edition – thinking – the house is full of mold – I have to have it fixed before Hubby comes home! And – Oh my gosh! I’m going to have to get rid of the pets!! I scolded myself for watching way too much reality TV – but those two thoughts won’t leave my mind.

Hubby is doing much better today. He is still sedated enough to keep him from any discomfort from the ventilator and stomach tube. But he is aware of everything that is going on around him. He’s been pretty agitated today – trying to talk to us around the ventilator. I’m 100% certain he has overheard someone talking about the cancer – because the word he is trying to mouth to me is TUMOR. His blood pressure has been spiking up and I’ve had to calm him down a few times telling him they won’t take the ventilator out if he keeps getting upset.
While I have mixed feelings about telling Jim about the cancer while he is sedated – I am coming to the conclusion that he is better off knowing what is going on. He was asleep when I left – soundly – so I didn’t say anything to him. However I did ask my father-in-law (FIL) and his wife (MIL2) to respond honestly to Hubby if he became agitated again. I thought it best that we sit quietly in the room and talk outside until tomorrow – when the ventilator comes out. This way Jim has one more night of somewhat peace before hearing the news.

NYC Brother-in-law (NYCBIL) and his wife (NYCSIL) flew down this afternoon – and are staying with FIL tonight at the hospital. I plan on staying at the hospital the majority of the day – but heading home around 4:30pm everyday to make sure Son is doing OK. Once Hubby is more aware of what’s going on – we’ll head over the hospital every night for an hour so Son can visit for a few.

Hubby’s two best freind will be visiting this weekend – and I love them for doing that. They have both been through all of hubby’s medical issues with him – they’ve been friends for over twenty years – since high school and before. Hubby will be glad to see them – he’ll be so frustrated with the hospital by the time they arrive – they’ll be up to mischeif in no time! Perhaps I should alert the nursing staff to be on the look out for stow-away patients?!

I’m digging around the internet for information on this form of cancer and found the Leukemia & Lymphoma Societyto be a great help. It is catered a bit more towards Leukemia in kids – but it is still a great source of information for lymphoma. We should have Hubby’s test results back tomorrow or Wendesday to see if it is Non-Hodjkins or Hodjkins. (I know it’s not spelled correct – sorry!) Depending on the type of cancer will determine the course of treatment.

Our immediate goal for tonight is to wean Jim off the blood-pressure medication, and slowly take him off his ventilator. Our goal over the next two weeks is to clear up any remaining infection from the bowel leaking and toxins. We’ll also be screening Oncologyists and Cancer Centers to see who we want to work with – once we decide which doctor to use – we can set up meetings and find out how to knock out this cancer.

I hate to be so anti-social – but I am staying off the phone as much as I can. I’m not quiet ready for the “how are you doing’s” and “i’m so sorry’s” – but thank you again for the positive thoughts! Son and I are managing fine – we’re a pretty strong family unit – the three of us – and as long as we know what we’re battling we can overcome anything!

4:13:55 pm    Somewhere Over The Rainbow = Dr. Oz

The all powerful, all knowing Wizard of Oz. Thinks he has the plan to cure all. I’m here to tell you Doctor “OZ” – that you hold no power over my family and decisions that my family needs to make right now. So you can take your egomanic ass right back to wherever it is you came from!

I’m angry today. I’ll tell you why in a minute – first I want to let everyone know that Hubby is doing well. He is heavily sedated – as he has been attempting to pull out his IV lines and his ventilator tube. Because he is sedated, his lungs are not functioning completly on their own – so he has to stay on the ventilator. It’s a mean circle – and right now there is no better solution than to let Hubby rest as much as he can till his body is ready to move to the next phase. While there was no forward movement today – and I am disappointed in that – there were no major complications either.

HOWEVER – it seems we are going to be involved in a pissing match with Hubby’s Lung Transplant Doctor. While an extremly talented man – we wouldn’t have gone to him otherwise – he is an control freak. His bed side manner is that of a dictator – and he truly believes that what he speaks is Gospel. He’s given us an ultimatum – move Hubby to Shands Hospital in Gainesville – or he’s dropping Hubby from the Pulminary program.

#1 – This man is ultimately responsible for the condition Hubby is in right now. 13 days ago, Hubby was at Shands for a check up and spoke with Dr. Oz and his kidney team about the distention in his stomach. Both Dr. Oz and the kidney team attributed the swelling to weight gain and the steroids. They blew him off without another glance – why? Beacuse – “that’s not my problem.” “We don’t take care of that area” IF JUST ONE DOCTOR HAD STOPPED AND LISTENED TO WHAT MY HUSBAND WAS TELLING THEM – 13 DAYS AGO – HIS BOWEL WOULD NOT HAVE EXPLODED – HE WOULDN’T BE IN CRITICAL CONDITION IN THE HOSPITAL DUE TO THE TOXINS THAT LEAKED INTO HIS ABDOMEN! I AM ANGRY! I AM ANGRY! I AM ANGRY!

Dr. Oz didn’t even have the nerve to talk to me himself. He had “Dorothy” the lung transplant coordinator tell us what Dr. Oz wants to do. I had initally called Dorothy this morning to get Dr. Oz’s opinion on what he thought of the local Cancer Hospital we want to bring hubby to. Instead of an opinion – we received a dictated order and ultimatium. In fact, Dr. Oz is preparing the orders to have Hubby transported to Shands right now.

Tell you what – Dr. Oz is going to be flying his balloon over the rainbow all by himself – because I have not given constent for that to happen. And if it does happen you can bet I’m going to be in the face of Dr. Oz so fast he won’t know who hit him.

Now – when I calm down I have to sit and think of what WOULD be best for my husband. Is it better to have him treated locally – just 15 minutes away from home? He can go in for chemo – then be home in no time in the event he feels sick. OR – do we drive him 3 hours to Gainesville once a week – up at 4am for the drive – in the hospital for chemo – then drive home 3 hours – with him feeling sick the entire time?

Because – I don’t have the option of keeping an apartment in Gainesville for an extended time. Not only is my son still in school – but I can’t afford to pay for my mortgage AND for an apartment. Is Dr. Oz going to donate funds to help support my family in order for Hubby to be treated up there?

I know one thing – it is in Hubby’s best interest to live close to where he is being treated. If we decide to head to Gainesville I’ll have no option but to get an aprtment up there – our family would be split in two. And I know that I would have a very difficult time dealing with that. I”d have to decide to stay home with my son – or go to Gainesville with my hubby. And I can’t believe Dr. Oz is going to force me to make that decision.

My other option is to locate a Pulminary Transplant Center elsewhere – either locally which I don’t think we have – or in Tampa. Then I’d have to make sure they are covered by our insurance plan. If I have to do this – I will. Hubby might not agree – but the most important thing to treat right now – is the cancer.

What kind of man would say that to a family!? Who would do that?

4:57:46 pm Hi Ho! Hi Ho! It’s Off To Shands We Go!

After careful consideration of all our options – and thinking only of Hubby and where he would receive the best care – we have decided to have him transported to Shands at Gainesville. He will be transported via ambulance to the ICU unit there sometime tomorrow. I barely have time to write this post – I have so much to do! It’s sometimes very overwhelming – all of these fast decisions to make! I will be bringing my laptop with me – however I’m not sure if I’ll have a hotel room let alone internet service. I’ll do my best to keep everyone posted – perhaps have my dad or sister post an update.

Jim was doing a bit better today – his progression is moving along as expected – but a little slower. His abdomin is swelling a bit due to the trauma of the surgery – which is pressing on his diaphram – which is pressing on his lungs. This leaves his breaths too shallow to support him without the respirator – so Hubby is still inhibated. While we originally wanted to wait till Hubby was off the ventilator before moving him to Shands – after speaking with the Pulmanologist here – we discovered it would be best to move Hubby while his is still receiving the support. Just basically easier to keep him stable during transport.

So … hubby will wake up at Shands and wonder what the hell happened. I am going to request that Dr. Oz not be the one who informs hubby of the cancer – I think it would be in Dr. Oz’s best interest to be on the other side of the hospital when Hubby gets that news.

I have received questions on where people can send flowers – and at this time I’m going ot have to ask you to refrain from sending anything. Hubby is still sedated and won’t be able to enjoy the flowers. Also – while in the ICU unit he won’t be allowed these.
Well … i’m off to find a hotel room for the next 5 days. Apparently it’s graduation weekend in Gainesville and everything is pretty much full. You may find me sleeping in the Hospital Cafateria for the next few days till the party goers move out. Just look for someone looking realy grubby – carrying around a heavy laptop asking – is there a Free Wi-Fi connection here?

{FYI – I’ll be staying at Gainesville full time until Hubby is awake, alert and aware. Then I will be commuting several times a week from Home to Gainesville during the remainder of his treatment. I’m expecting hubby to be awake by Sunday night the earliest – as it will take several days to wean him of the ventilator. So – if I can’t post from Gainesville – your next update will be next week sometime.}

Please re-direct all the postive energy towards the Gainesville area starting around noon tomorrow!!!!
edit – I just saw at the Shands web site – you can Send A Patient A Message – so if anyone is interested in sending hubby a message – click HERE!

8:17:49 pm Helicopter Ride!

I have safely landed at the Courtyard Marriott for a few days – and guess what – FREE INTERNET ACCESS!!!! Yes – I am excited. I didn’t want to have to pay $7 a day to connect! I’m told that the hospital also has Wi-Fi – but I’m not sure if I’ll be able to access their network without a password. {You know I’ll try!}

Hubby is going to be upset with me when he wakes up. He arrived at Gainesville in style – aboard the MediVac Helicopter. And I didn’t bring the camera! Yes – that will be one of the things hubby will ask about. Trust me … it will. Libby and Sam were his paramedics – and watching him take off was very scary and very cool all at the same time. It really does get THAT windy when they take off!
He’s settled into the MICU unit – room 5245 – for now. Still on the respirator – but they hope to have that off by tomorrow. Visiting hours here are very strict – unlike SandLake where I could have slept in the room if I had wanted to. I can’t get in to see him till 10:30am tomorrow morning – and we pretty much have to be out of there by 9:30pm. Also – throughout the day we have to leave at 3pm and 7pm during shift changes. Apparently they openly discuss cases in the middle of the hallways and want to keep everything confidential. Did they forget the PATIENTS can hear them???

Hubby’s vitals were all stable throughout the day – his BP is up a bit -but that is due to the sedative he’s on. This should normalize once he’s off the ventilator. His abdomin has swollen again – it doesn’t appear to be fluid – but Dr. Oz {lungs} and Dr. Gator {kidneys} want to get a CT Scan of the tummy first thing in the AM.

Dr. A – our family doctor – called my cell phone. I thought that was really sweet – he is more like a family member for us than a doctor. He wanted to see if we had the pathology results – which we don’t. He’s going to hunt them down and call me again in the morning. He advised me to ask every single person who saw hubby tomorrow when the Oncologist was coming on board – his concern is still that the immunosuppresants are what caused the cancer – and Shands has started these up again. Lower dosage than b4 – but still scary if that is indeed what caused it. BUT – again – we won’t know for sure till the pathology report comes in.
That’s all the news I have for today. Since Shands has to get up to speed on Hubby’s case – nothing much really happened other than a safe transport with no complications – so all of those positive thoughts worked! Thanks for the prayers and everything! You know hubby and I aren’t very religious people – but when you’re in a crisis – it really does feel comforting to know others are thinking of him.

7:39:50 pm Posttransplantation Lymphoproliferative Disorder

Yeah – try saying that one three times fast! Good thing the Docs have given it the nice lil’ acronym of PTLD. This is what Shands believes Hubby has – though they will not base their diagnose soley on the pathology results from Sand Lake Hospital. They want to run their own pathology tests – which will take another 2 or 3 days. But the docs are pretty sure they have a diagnosis of Large B-Cell Lymphoma brought on by Epstein Barr Virus.

This is somewhat good news. If Hubby did not require the immunosuppressant drugs to keep his transplanted organs from going into rejection – the treatment would be to just take him off the medication. Instead – the treatment will be to lower the immunosuppresants and monitor carefuly while giving a monthly chemotherapy dose.

Now – before we get our hopes up too high – this is just a preliminary diagnosis. The team of doctors are still very concerned about Hubby’s abdominal swelling. They feared he has an additional bowel obstruction – but CT Scan results ruled that out. They have done an additional CT of the lungs, and ultrasound of the Gall Bladder – and a third chest X-Ray this afternoon. Our nurse has told us they are just looking for a reason for the swelling and want to rule out every possibility.

We are very hopeful that Hubby will be taken off the ventilator tomorrow! Keep your fingers crossed that this happens!!! That is the first step to getting hubby’s vitals back to normal. Once he’s stable – he can be treated for the cancer.

While not out of the woods yet – it was a hopeful day today. But again – things could change overnight. As always … I’ll keep you posted.

5:51:59 pm Daisy Chain Therapy

I want to begin tonight with a small disclaimer. What you are about to read may be offensive to some. I know that hubby’s family and friends are reading this blog to stay up to date on Hubby’s condition. Which is great – thanks for caring so much. But the intent of my blog originally was for me to discuss the events taking place in my life. I’ve refrained from speaking up too much about my feelings and thoughts – trust me – I’ve been holding back. I’m at a point in this where I can’t do that any longer. I’m going to let it rip – and see what comes out. If I shock or disappoint or seem overly dramatic – so be it. This is my perspective on Hubby’s situation and I need someplace to talk about it because when I actually talk about it I end up a crying and can’t continue.

I know that I am having a huge issue with anger right now. From what I’ve read on Cancer boards this is apprently normal – anger and ‘false cheer’ – both of which I’ve exhibited. I’m usually very good at self diagnosis and can recognize when I’m getting out of hand. But today I think the full fledged bitch has come out. I’ve reached my breaking point and the steam is venting freely. I feel guilty afterwards for being so vocal – because I KNOW no one is at fault. I KNOW that there are strict rules for the betterment of the patients at the hospital. But it is so damned frustrating to sit and sit and sit while I watch my hubby’s blood pressure drop and listen to alarms going off – and nobody on staff is doing anything about it!

And then sit and sit and sit waiting 5 hours for a CT Scan – that in my opinion should have been done right away.

Let me tell you what’s been going on today. When I arrived at the hospital at 10:30am – because this is the first time they will let me in to see hubby – I walked into a nightmare. Hubby’s pulse was sky high, his blood pressure dangerously low, back on the ventilator fully, and a temperature of 107.3. Yes – that’s right. I said One Hundered and SEVEN point three.

It took 15 minutes for someone to come in and tell me what was going on. Hubby’s abdomin was distended again – he went septic over night – and that the team of doctors had just “rounded” on Hubby and decided to take another CT Scan to see what was going on. Apparently they have no friggin’ clue what they are doing – they have to run the same test over and over and over again. From that point it was a waiting game. I was keeping a watchful eye on hubby’s bloodpressure and temperature. I had to go get a staff member three times regrading beeping alarms to say his BP was reaching critical levels. I have absolutly no confidence in this team at Shands – they are too busy with other patients – and have learned to block out the various alarms sounding around them. Five hours later they take him down for his CT Scan – and back up 30 minutes later. They found nothing with the bowel – AGAIN – but did see that his Gall Bladder was twice the size it should be. Perhaps this is what is causing the septic situation? (Don’t ask me! You’re the doctor!)

They have inserted some sort of drain into the Gall Bladder rather than doing an additional surgery at this point. They want to drain the fluid out of the GB and run a culture on it to see if this is what is infected. The tube will remain in place until Hubby is stable enough for another surgery – where they will remove the Gall Bladder completly.

I waited patiently the allotted hour for the procedure to take place – and being a good girl I rang the doorbell as instructed to be allowed into the ICU unit. But after 15 minutes of doorbell ringing – no one responded – so I walked in. I was told by the nurse that Hubby was headed down to CT Scan – YET AGAIN – to make sure the tube was in place properly. Great – how long will that take? “An hour” So that puts him back in the ICU at 6:30 – change of shift – can I still get in to see him “No – you’ll have to wait till change of shift is complete.” But that’s 8:30pm – that’s 3 hours from now. “Yes – OK?” I guess …ok. Well, it’s NOT OK, but OK. And off I stormed.

So I’m waiting till 7:00pm to call and make sure hubby is OK – my main concern is that he is going to be in his room alone for 3 hours – with no one watching those monitors – alarms beeping and going off – and none of the staff will do anything about it. I’m at the point where I’m going to chain myself to his bed -that’s how concerned I am.

But – what I can’t figure out is if I’m justified in feeling this way? Or is it just the Anger that I can’t seem to get rid of? Am I out of line? Don’t I have the right to throw a hissy fit when I know my husband isn’t being cared for up to MY standards? OR should I just suck it up – be a good little girl – and follow their overly strict rules? I don’t want to embarrass my father-in-law or the rest of hubby’s family. But sometimes I just can’t sit back idlly and wait to see what happens.

I’m going to attempt to find coping mechanisms for anger tonight when I return from the hospital. I’ve purchased oragami paper – and if I can find a pattern online will try and put some of that agression towards a more creative endeavor. Hard part is going to be writing the pattern down onto paper – since I can’t print it out. Hopefully by the end of the day tomorrow I’ll have a nice daisy chain to hang in Hubby’s room.


I just spoke with Hubby’s new nurse – and his procedure went according to plan. The “shunt” is in place and is draining fluid from the Gall Bladder. His BP is normalizing and the nurse will be weaning him off the BP medication overnight to see how well he does. She’ll be watching him closely tonight. I’m looking for a better day tomorrow.

6:48:20 pm A Day of Healing

Today was remarkably uneventful – thank GOD! I spent the majority of the day at hubby’s bedside just talking to him – and putting together the flower garland to hang on his wall. Nurse Lisa – same one as yesterday – was on board so I started the day off apologizing for my mental breakdown last night. She countered with her own apology explaining the stressful day that she had taking care of two very sick patients. So – we made up and were friends the rest of the day.

Hubby was taken off his sedative and the very strong pain medication that was keeping him asleep. He was in and out most of today – mostly unconcious. However – right around 4pm he started to wake up a bit. Though his eyes never truly focused on me – he was moving his head towards whoever was speaking, and moving around in the bed on his own a bit. When we spoke directly to him his eyes would open, and he’d blink at us.

He won’t be getting anymore sedative type medications – so we’re hoping he’ll be more aware tomorrow – and we can work on getting that ventilator out!!! If I can even get him to just follow me around with his eyes – and see some of the anger he had before – I’ll be very happy tommorow.

If anyone is wanting to send a card for Hubby’s room – here’s a mailing address that you can send stuff too:

c/o Shands at the University of Florida
PO Box 100351
Gainesville, FL 32610-0351

I’d like to hang up all his cards on the garland I hung today.

6:57:53 pm Who Is That Man Behind The Curtain?

We finally got the opportunity to sit down and speak with Dr. Oz this afternoon. I understand he is a very busy man – but I also wanted to make sure he KNEW we wanted to talk to him. So – I made a call this morning to Dorothy the transplant coordinator who set up a meeting for us. And then FIL also asked the MICU team to make sure Dr. Oz would make the meeting.

Update on Hubby before I go any further. He was off the ventilator for 2 1/2 hours today – he still had the tube inserted and on oxygen – but no assistance from the vent at all. We had hoped to have him weaned completly off by the end of the day – but Dr. Al {the MICU lead – and the guy coordnating all of Team Hubby} thought he was just still too drugged up and weak to be left on his own today. So – one more day on the vent and we’ll try again in the morning. Otherwise – Hubby was more alert – responding more to our voices, answering questions, responding to basic commands. It’s just going to take a few more days for all of the drugs to get out of his system.

Dr. Oz expalined that Hubby’s system is still septic. While not life threatening as it was over the weekend – hubby is still very sick and fighting off the infections in his intestines, gall bladder, and now in the Central IV line they installed last week. It will take another 3 days before Hubby is fully aware and conscious of everything that is going on around him. So – Friday is the day we are planning on telling him about the PTLD.

Dr. Oz was very understanding to our frustration and explained everything in detail. Much of this we all ready knew – but wanted to get clarification. The Lymphoma has recieved a final diagnosis – it is PTLD – Large B Cell Lynphoma of the gastoral intestines. It was brought on by the EB Virus – and is termed “Late Developing” since it has been a few years since Hubby’s last transplant. This is a more uncommon form of the disorder, and the response rate is just 30-50%.

Hubby’s treatment will start in about 7-10 days – depending on how quickly he kicks these infections. He’ll receive weekly treatment of Chemotherapy for 6 weeks or longer. If he is responding to treatment – we will know around the 4th week. I have the name of the drug they will use – but am not sure if it is spelled correctly – rituxan. It apparently targets the Lymphoma cells directly – and therefore has very few side affects. We shouldn’t see any hair loss or stomach issues with this treatment.

Dr. Oz would like to keep Hubby in Gainesville for the full treatment – so… that leaves me with a HUGE decision to make. To rent an apartment for 2 months – or commute from Orlando. It’s a decision I’ll make over the next few days – I’m headed back to Orlando in the morning tomorrow – and will come back to Gainesville Wednesday morning. I need to see my son and my dog and my cat and my house. Most important – I need my regular normal clothes! {I did tell you I left my suitcase at home – right?}

5:59:32 pm More Rest For The Weary

Nothing new to report today really – Hubby’s condition is about the same as yesterday. He’s resting and building up strength. We’ll try to take his ventilator out once again tomorrow – if he’s not too aggitated there should be no problem at all.

I’m in Orlando tonight – just to spend some time with my son, and take care of some things around the house. I’ll head up to Gainesville again tomorrow. I’m switching hotels – but you can always reach me on my cell phone if you need to.

I’m taking the night off to try and enjoy American Idol – I’m thinking it’s going to be a really great show tonight!

6:22:33 pm I’m back!

Hello! I made it back to Gainesville this morning in about 2 1/2 hours. There were accidents and road closings all over town because of the fires. It was a traffic nightmare to say the least.

Hubby is doing about the same today – nothing new really to report. The doctors tested him for pnemonia – there was some fluid on his lungs – and they were correct. So they’ve added on yet another antibiotic. Tonight he is scheduled for another CT Scan of his tummy and will do one of his brain as well just to make sure there is nothing brewing up there. While the doctors all seem to think hubby is just very weak and taking a long time to recover from the sedatives, they want to make sure the infection hasn’t gotten into his spinal fluid or brain.

Yes – this is very scary – and I waited all day for a neurologist to show up. But apprently they want the CT Scan done first – so we should have those results in the morning. FIL will be staying up at the hospital tonight until they kick him out – I was exhausted and wanted to try and find my new hotel before it got too dark out.

I know I owe many of you phone calls – and others want to come down to visit Hubby. I just think hubby would appreciate your visits more when he is awake and alert. We had hoped that would be before now – but we have to be patient and take this one day at a time. The cards have started coming in – and we’ve got them hanging in hubby’s room.

Thanks for all the positive thoughts! It is appreciated!

EDIT – UPDATE – 8:30AM 5/11/06

I just spoke with Shands – and the CT Scans of the belly and head came back negative. Which is good news. They are still considering a spinal tap to check for any infenction that way. however – the neurologist was not concerned after seeing Hubby. She felt he was just lethargic from the amounts of sedation he is under.

The nurse this morning has taken him off his sedation and hubby is responding to commands and opening eyes when spoken to. Though he is still very weak.

This is good news!!!!!

6:54:41 pm Baby Steps

It was a good day today – a very good day!

Hubby was able to focus on us while we spoke to him – and he reached over several times to hold my hand.

I know – it’s not a big deal to some people – but it’s a HUGE deal to me.

It was a very good day!!!

8:58:56 pm The Neurology Team

I don’t have too much news today – so I thought I’d take this opportunity to relate a humorous experience at Shands the other day. {Some people don’t get that laughter is good therapy. I do realize the seriousness of hubby’s illness – but we really do believe that laughter and humor are an important part of our lives. It’s OK to take time out to laugh!}

Now – picture this if you will. A team of Neurologists enters a tiny hospital room – already overcrowded with family members, machines, a giant bed, a ventilator, IV drips, etc … The team consists of four individuals. We have the  Foreign Exchange Doctor , the  Head Doctor , the  Intelligence Doctor  and the  I’m just here to be cool Doctor .

Now – I totally believe that the events that took place were intentional. That the team came into the room at the exact time they did to create the following situation – to see how hubby would respond.

Head Doc starts to tell me that they have been asked to consult on Hubby – and they really don’t know why. Is it OK if Foreign Exchange Doctor attempts to awaken hubby? after all – this IS a teaching hospital and all. Then, while Foreign Exchange Doctor is attempting to awaken hubby – in a really overly heavy accent – Intelligence Doctor says “I’m really glad you’re here – there are several things we need to go over,” and continues to tell me about all the tests they were asked to do – but really see no need for.

Hubby’s blood oxygen indicator (the lil clip on your finger) starts beeping because it fell off his finger. It’s this rather obnoxious BEEP BEEP BEEP – warning everyone something is wrong. Keep in mind that we have Head Doc and Foreign Doc trying to work with hubby and Intelligence Doc relating all kinds of non-information at me – all at the same time.

{Really cool Doc is just standing back observing everything – in a very bright purple shirt and tie I might add}

Not one – but TWO nurses rush in to attend to the beeping alarm. This now makes 7 people plus hubby in the room all at once. So – we have the added distraction of the nurses working on hubby – while Foreign Doctor is saying “Can you hold up doo fingers foo mee pleez.” And Intelligence Doc is continuing to babble!

I lean over to Head Doc and say   you are probably just pissing him off   I wouldn t be surprised if he s not doing what you want on purpose   just so you leave. At this point I’m totally ignoring Intelligence Doc’s babble   and am doing my best to tune out the BEEP BEEP BEEP and the nurses.

I am so friggin  over stimulated at this point I want to scream  STOP!!!!!! When Really Cool Doc leans over and asks hubby ‘Can you hold up two fingers?’ And hubby does! Oh dear God  the amount of cheering that took place   you’d think hubby won the Boston Marathon!  It was brilliant that amidst the chaos he was able to follow that simple command. The neurology team left without another word then all the nurses and our Social Worker came in and were so happy with the good news!!


Hubby had another good day today – Mother In Law and Captain In Law arrived late last night, and were in for visits all day, and NY Brother In Law also flew in this afternoon. It’s a bit hard for me to share my time with hubby – but I’m doing the best I can. Technically hubby is only allowed two visitors at a time – but we’ve stretched that rule just a bit.

The docs attempted to take the ventilator off again today – but still feel Hubby is very weak. They suggested a temporary trach would be a good alternative -they don’t like leaving the ventilator in past 14 days – and hubby is right there. So – we’re going to try again tomorrow morning and then Sunday morning – if he can’t lift his head or hands the way the docs want – he’ll probably get the trach on Monday morning.

Now -this is a slight problem – as I was heading home Sunday afternoon. I have reached a point in that our finances will be seriously strained if I stay up here much longer – AND – my son’s final week in school is this upcoming week. He is having a hard time dealing with Hubby’s illness and I want to be home every night to help him prepare for his final exams. I had planned on commuting to Gainesville on Tuesdays, Thursdays and Saturdays. But it looks like I might have to commute every day this next week.

My only fear with commuting every day is not the cost of gas, or the 2 1/2 hour drive each way – but the higher risk of getting into an accident – AND the fact I’ll only see hubby 4 hours each day. I’ll be spending more time in the car than I would be the hospital. I really need to sit down and figure out a plan for the rest of the summer – especially if hubby has to remain in Gainesville during the course of his treatment. Do I want to try and find an apartment for the month on June? Do I have the funds for a second apartment? How will it affect my son – to take him away from his friends and leave him in a strange apartment for the whole month? Would it be better for everyone else if I commuted everyday? What would be best for hubby? What would be best for me? My head is spinning trying to make a good decision. Everyone keeps telling me to take it a day at a time – but I can’t do that. I have to plan – I have to know what’s coming up – otherwise I’m a basketcase -if you couldn’t tell.

Hubby’s awareness improves daily – so I hope tomorrow he’ll be able to do a little bit more. We’re taking all those baby steps and little victories and celebrating every moment. I’ll keep you posted – everyone keep thinking – “pull the vent! pull the vent!” tomorrow morning – and just maybe hubby will be strong enough to come off that awful machine!

7:39:01 pm Save Willo’s Family Fund – NOT!!!!

Ok – per my mother – I may have given you all the wrong impression regarding our financial status. We are in no means financially destitute! I am just trying to keep us from becoming so!! Sure – I could rack up a few thousand dollars on our credit cards if I really wanted to – but I know that Hubby would have huge issues with us going into debt. And until I can actually talk to him about breaking into our Vanguard Fund – I’d like to keep that intact for the time being! So – please – no need to start the Save Willo’s Family fund just yet.

If I felt hubby was in any sort of crisis you can bet I’d be staying right here in Gainesville. But for now he is doing well – regaining his strength – his father and mother are on hand – and I need to be at home this next week helping my son.

I was going to write this whole big long blog tonight comparring Shands Hospital with Sand Lake Hospital – but I decided not to. The only thing that is going to do is get me upset and bore the pants off everyone reading – so I will spare you all for now – the comparisson.

I will – however – state for the record that Shands Hospital is not all it is cracked up to be. IF you want to call “State Of The Art” antiquated IV machines – then feel free. If you want to call “Great Patient Care” a 20 minute response time on average to beeping alarms – that’s your right. I happen to find this a very unimpressive way to operate an MICU ward personally – but whatever.

Hubby is doing fine today – I can’t say that he is any better than yesterday. He is still very weak, the doctors won’t take him off the ventilator, and hubby is very frustrated over that fact. He was upset all day – and of course – that made me upset too. The doctors will be placing a trachial tube on Monday morning – and we hope that will be a good step towards recovery. Hubby did have a slight fever when I left this evening – 38C – which I still have yet to convert to Farenheit.

I head back to Orlando around noon tomorrow – but will commute back to Gainesville Monday moring. I want to be here when they place the trach – I know it’s a simple procedure – but I want to be here all the same.

All righty everyone – off to bed for me – I’m exhausted. Now – if the kids running up and down the hotel hallway would just go away – I might actually sleep tonight!

7:34:47 pm Sunday, May 14th

Hubby has been sleeping the majority of today – with no real changes in his condition. He is stable and resting comfortably. Tomorrow the ENT team will be placing the trachial tube – and we hope to see Hubby taken off the sedatives so that he can begin to regain his strength.

5:35:36 pm To Trach or Not To Trach ….

Hubby was awake today! Fantasticly – wonderfuly – fully awake! There was no fever – and we were frustratingly close to removing the ventilator. I say frustratingly – because the doctors kind of teased hubby. It was almost mean. Since he was under no sedation – the process is prone to creating anxiety in patients. Hubby was given a mild mood relaxer, and holding my hand he sweated out an hour on a T-bar. Meaning – he was breathing on his own but with the ventilator tube still. He did so well – he was so brave – and all of his numbers came back well within acceptable ranges! Then …. the respiratory tech came in and said “I told the doc you just look like you’re struggling. So I’m going to leave you on the vent overnight and we can try again in the morning.” The doctor didn’t even come and see for himself!! AHHHHHHHHHHHHH!!!!!

Then – who shows up AFTER I leave for the day? The ENT team to do a trachial insert!? I don’t even think the doctors know what the hell is going on anymore – I’m so confused. I don’t know if this is good news or not – but the ENT couldn’t perform the procedure because he was still on a Hepran drip (anti-colagalant). So – he’s spared a day before they cut into his throat. I’m praying {yes – I am actually praying to the masses of Gods that others hav faith in} that they can give him another t-bar test and get him off the vent in the morning BEFORE the ENT team makes it downstairs.

Perhaps it’s just me – but isn’t it better to remove the ventilator NOW – rather than cut into him, place the trach, and then wean him off the vent 12 hours later? I dunno … that might make too much sense for the Shands Doctors.

5:25:43 pm Finally – A Plan!

Shands is a teaching hospital – I don’t know how many times I’ve been told that in the past few weeks. Because of this – the MICU team of Doctors changes every two weeks. Today I met with the new Attending Doctor – and FINALLY got some of the answers we have been seeking regarding Hubby’s “Health Plan”.

Dr. Taylor (cuz his hair is the same as Taylor Hicks!) is a bit on the young side – but has worked with Cystic Fibrosis patients as well as Transplant patients – so he understands all the complications involved in hubby’s case. I explained to him that what we were looking for was some sort of Plan of Action for hubby’s care. While we had been fed bits and pieces of daily information – no one had really told us what to expect in the future.

His main concerns – and plan of attack are:

1. Critical Care Myopothy – this was brought on by medications and the fact hubby has been basically sleeping for two weeks. To build up his strength – we must rely on time and physical training. Dr. Taylor expects this to improve in a few weeks – but hubby may be in a weakend state for several months.

2. Breathing Concerns – due to they Myopothy and weakness, hubby’s breathing is slightly compromised when removed from a ventilator. The trachial procedure took place today – and hubby is now breathing through this tube – which is attached to the ventilator. Dr. Taylor expects this to be used for at least two more weeks – while hubby builds his Core Strength and also gets rid of the pnemonia caused by the original ventilator tube.

3. Belly concerns – obviously the PTLD is a huge concern. But also, digetive functions have not improved as quickly as they should have. While there is some movement – it isn’t as much as expected. Hubby was started on medication today to improve this situation – and if nothing happens in the next two days – Dr. Taylor may need to do additional belly scans and possibly exploratory surgery. The virus that cause the PTLD is now being treated with medication as well – and it is OK to wait a few more weeks to start Chemotherapy.

This means that hubby could be in Gainesville about 8 more weeks. This gives him 2 weeks to build up his strength – followed by the 6 weeks of Chemotherapy. It’s going to be a long summer for him – very difficult for him to be away from home that long.

7:17:35 pm Road To Recovery

Hubby was doing very well today.  Though still quiet sedated, he showed more signs of himself while awake.  Everytime his father walked into the room, Hubby just started laughing.  It was great – though we’re not exactly sure what it is he is laughing about.  We turned on the Cartoon Network as well – and he laughed away at the soundless antics of Tom & Jerry.  There were periods of anxiety – and he has to work really hard to keep his breaths slow and deep.  The Doctor feels he is doing just fine and recovering at a good pace – with a bit more strength and signs of life than with the ventilator.  The trach is a more severe look – and I am sure is the cause of the anxiety – but it really is much better than the ventilator!  The ICU team will be performing a test to see if he’s getting the right kinds of nutrition – it’s possible he’s getting too many carbs as his blood gas levels are still showing a lot of carbon dioxide.  Who knew Carbs held onto the Carbs … hahahaha!!!

Another good day – with even more to come!

8:14:06 pm Knowledge Is Power?

I told hubby the news today – about the PTLD.  He is still unable to talk with the trach – but was making so many frustrating motions and trying to spell out what he thought was wrong with him – I decided it would be better to tell him everything.  My husband is too smart to be kept in the dark long – I am sure he heard the words tumor, mass, and oncologist and put it all togther himself.  I just confirmed what he had already figured out really.

He did better than I expected – but he is angry.  His dad came in about 15 minutes after I told him – and Hubby asked him to go away.  And then made motions that he didn’t want his mom to come into the room either.  I did my best to guess the questions he was trying to ask – and had Doc Taylor come in and mention a little bit more.  When I mentioned the name Dr. Oz – hubby became very very frustrated and angry.  I can’t say that I blame him though.

I just spoke with the nurse a few minutes ago, and then FIL called.  Hubby asked for a light sedative to help him get to sleep – and was given this as a one time only thing.  I think alot of the anxiety is coming from the frustration over not being able to talk and ask questions.  I’ve found a way for Hubby to utilize an on screen-keyboard on my laptop – he can’t talk and his hands are still too weak to write anything legible {though we have had fun laughing at what he’s attempted}.  So – I’m hoping he’ll be able to manueaver the mouse at least and click on the letters to communicate.  We can give it a shot anyways.

I’ll be brigning my Son up to visit hubby on Saturday – and hubby’s best friend Brain will be visiting as well.  Another good day – we’re building strength to remove the trach – it’s a day-by-day thing right now.

6:49:09 pm Frustration Friday

I am just so totally and utterly tired today. I think the getting up at 5:30am with my son to get him off to school combined with all the driving back and forth to Gaineville this past week has done me in. I’m pooped! I just want to crawl into bed, pull the covers up over my head, and sleep for a year.

It was a frustrating day all around at Shands. Hubby is understandably grumpy and asking to go home. The docs are all running around talking about “stimulating the system” and “waking up the muscles”. I swear – the second hubby passes gas the entire MICU staff at Shands is going to have a giant celebration! Dr. Taylor walked into hubby’s room this afternoon with “a really cool study done at John Hopkins” about using a nerve stimulant to “wake up” the systems of long term ICU patients. “What the heck – we’ve got to give it a try and see if this works!”

The doc explained that the medication would create a feeling of nausea and that hubby’s pulse would drop, and then relatively quickly he’d feel “movement” in the southern regions. The nurse pushed the medication into hubby’s IV – slowly over 2 minutes. The Doc and Resident Hoover came in and hovered around – Hoover was at the end of the bed. Doc looks over and says “If this works – you might not want to be standing right there.” I almost died laughing.

Dr. Oz visited for a few minutes – explained that they could start Chemotherapy on Monday as long as Hubby does not get a fever over the weekend. We’re all keeping our fingers crossed!!!! It could be that the chemo will help with the distension in the abdomen – shrink the tumor and the system starts to work again. I’m not going to hold my breath though – when hubby’s had a downward spiral it’s taken place on Saturday.

Hubby’s frustration lies in the fact that he can’t communicate – no one can read his lips (or his mind) – and he is trying to just tell us simple things. He’s also concerned with the distention in his belly – wondering what else the Docs will do to get all of that air out of there. And – he wants to come home very badly. In fact – he tried to get out of bed when I was leaving – mouthing “you have to help me get out of here.” Talk about guilt! My heart was breaking as I left the room.

I’m driving my son up tomorrow for a short visit. While we are all there I’m going to try and talk about what to do once my son finishes school next week – does hubby want me up in Gainesville full time again? If so – does my son want to come up with me or go stay at his Grandparents house? What to do with the pets? What to do with the house repairs that still need to be done??? etc … I can’t keep commuting everyday – and it is killing me that I can’t be with hubby as much as possible right now. I just don’t know what to do!!!!!!!!!!

5:00:02 pm Oncology On Board

A new doctor has been added to Team Hubby – and he’s quiet dashing! Let’s call him Dr. Jordan – because this is where he is from. {Have you ever noticed that men from Jordan have the most beautiful eyes?} Dr. Jordan is one of the Oncologists following Hubby’s case – and we spoke with him today to get a few more details regarding the treatment of Hubby’s Lymphoma.

Dr. Jordan explained to us – that while Team Hubby is calling this next stage in treatment “chemotherapy” – that isn’t exactly correct. Apparently the Rituximab is more of a chemical blocker – stopping receptors from reaching the cancerous cells instructing them to grow. Once the block is in place, the cancer cells start to die off naturally. This is a less invasive and more targeted way to deal with the cancer – and is the standard in treating PTLD. Hubby will get 4 doses – and then be re-evaluated to see if the tumor is still there. If all is OK – Hubby may have follow up shots every few months for one year just to be sure the cancer stays away. If it is NOT successful – then hubby will be considered for a more aggressive chemotherapy treatment.

Dr. Jordan was pretty optimistic – and didn’t want to get into specifics about follow up treatment because at this point we just don’t know which direction the cancer is moving in. I guess he was trying nicely to tell us to be patient.

Good news – Hubby has been taken off the GI bypass tube and given a smaller feeding tube – which means liquid food can be given starting tomorrow! While it’s still tube feeding – it is a step in the right direction. The docs want to be able to control what goes in – so that they can monitor what comes out! If hubby is able to keep down the liquid diet, and it flows through as normal, they will remove the feeding tube and allow him to eat normally. Now – he may need to wait till the trach is out though before eating real food – I’m not 100% sure. Probably should ask about that.

Hubby was in better spirits today – though tired. He was able to write a bit better – and we’ve learned a way in which I can read his lips. So communication wasn’t too much of an issue. We had a good talk about normal everyday things – and I think hubby enjoyed that. He also asked me to review EVERYTHING that has happened in the past 22 days – because he really doesn’t remember too much.

He gets stronger everyday – and that is all I can ask for. Dr. Taylor mentioned they are taking all the right steps towards moving hubby out of the ICU and into a regular private room – perhaps by the end of the week. Woo Hoo!

6:08:30 pm Daily Improvement

Hubby continues to improve everyday – its going to take a long time to get him back up to 100%.  There’s not much more I can tell you today – he’s starting to get really bored and is uncomfortable in the hospital bed – so he’s a bit grumpy.  He’s having a reaction to the medication – so he doesn’t feel well and is having trouble sleeping due to weird vivid dreams.  {Kind of like ‘HOUSE‘ last night}.

He had a slight fever again yesterday – so the Rituxm will be put on hold one more day.  Dr. Taylor feels that he did really well today – no infection signs, no fever, and breathing off the machine 4 hours today – and if he has another good day tomorrow then they will start the Rituxm on Friday.

I’ll be at home Thursday to meet with a Handyman who needs to make a few repairs around the house – but will be back in Gainesville Friday and Saturday.   I’ll post again on Friday and let you know if there’s any updates.

6:04:19 pm Rituximab

Hubby started his Cancer treatment today – Rituxamib – of which I can’t find the drug company online. I’ll keep looking and will post the link when I find it.

He was sleeping the majority of the day – pretty uncomfortable and just weary of being at the hospital.

edit – here’s the web site for the Brand Name Drug Rituxan.

6:27:38 pm Quick Update

Just a quick update on hubby.  He started his first dose of the Rituxamib last night and had absolutely no side effects!!!  This is good news – no allergic reaction, no nasuea, no rash, no nothing!  I was concerned that he might feel poorly overnight and no one would be around to take care of him.

Second – he has had 2 additional liters of fluid drained from his belly.  Add this to the 3 liters drained two days – that’s a total of 5 liters.  His stomach is retaining the fluid – as this is how his body responds to trauma.  Whenver hubby sprained an ankle – it would fill up with fluid too – so it makes sense that his tummy would heal this way as well.  The bad thing is – this fluid build up is making it difficult for him to breath and move on his own.  We’re hoping that the hospital will drain the fluid every day – or leave in some sort of drain in place to drain off the fluid as it builds up.  This is the only way he’s going to get off that dang ventilator!

I’m headed back to Shands on Monday – I hope everyone has a fantastic Memorial Day!

7:31:38 pm Anxiety Attack

Hubby is having a few issues with Anxiety these past couple of days.  Which is totally understandable!  He’s working really hard when he’s off the ventilator and breathing on his own – he sometimes gets tired and starts to panic a bit.  The docs gave him a slight relaxer this morning – and he did really well off the vent and we even learned a way he could actually talk through the trach!

Dr. Taylor also OK’d drinking small amounts of clear liquid beverages.   We’ve been sneaking some lemonade to him – but now that we have the offical OK – I’m headed to the store for a few bottles of Code Red Mountain Dew.  This is the one drink hubby has been dreaming about and asking for – so I’m going to surprise him tomorrow.

The docs all got together this morning and decided to give hubby his 2nd dose of Rituxan tomorrow rather than Friday – thinking that the sooner they can shrink this tumor – the quicker the fluid build up will disapate – and the quicker hubby can get up and walk around.  his tummy is so bloated and filled with lymphatic fluid – its uncomfortable.  And this is the ONLY reason he’s still on the ventilator.  Once that fluid goes away – and stays away – the trach will come out and physical therapy will get him up out of bed and walking!

So please please please – positiv thoughts tomorrow!  Keep visualizing all that fluid rushing away with the tumor cells!!  The more positive vibes sent towads Gainesville the better!!!! And if you’re the type that prays – a few of those wouldn’t hurt I am sure!

8:01:58 pm Moving On Up?

Just as it seems hubby is getting much better – I just got word that one of my online friends husband had a heart attack last night.  I am sending some of our positive thoughts and energy in her direction!  N – know that I’m thinking about you and hoping all is well.

Now – hubby is doing much better today.  He did well with his second dose of Rituxan – no side effects!  He is retaining some fluid though – and his legs and one arm have puffed up.  The docs have prescribed Lasix – but hubby doesn’t feel that this will do much of anything as it hasn’t really worked for him in the past.

The doctors also prescribed an anti-depressant for hubby to help him fight the blue feelings he’s had – but the dosage was way too high and he ended up sleeping the day away.  He was awake enough to chat a bit – and did speak for a few minutes with my son via the phone – which was great to hear!

Several doctors made mention that the MICU team is murmuring about kicking him out of the MICU into a regular room!!!  This is fantastic news!  Hubby has been off machine breathing – breathing on his own through the trach – for 36 hours now.  The next step is to plug the trach for a few days and let him breath normally to see how well he does.   If that goes well – the trach will come out!  They are also talking about removing the feeding tube and allowing hubby to start on a liquid diet of clear beverages and broths.  Woo hoo!  Once that happens hubby will have them convinced he can handle real food in a matter of days.

Hubby s abdomen is still very puffy   the fluid is still being retained.  The nurse mentioned that if he s unable to shed the extra fluid himself he may need a week or two of dialysis to kick start his system again.  We are hoping that won t be necessary   because there are other complications that come along with dialysis. (blood pressure issues, anemia, infection, etc  )

While we are seeing great strides and good news   we must not get our hopes up too high.  We still havn t seen any indication that the Rituxan is working.  There is no  test  they can do to see if the cells are dieing off   and the abdominal swelling makes it hard to see from the exterior if the tumors have shrunk.  Only time will tell   we will have to wait till  the 4 weeks have passed and the tests are repeated to know if the treatment was successful.  We re all just holding our breaths.

7:21:26 pm A Teaching School – How About Communication?

Just one question – how can you TRULY evaluate your patient if you don’t actually go into their room and SEE the patient? OK – I get that you can read all the pertinant information from the Chart – but please! Don’t you think it would be nice to actually ask the patient “how are you feeling today?”

Perhaps that’s just old fashioned medicine? It’s just basic communication to me!


Hubby doing well today – same as yesterday – sleeping most of the day away. You see – if the doctors had actually bothered to visit hubby they would have seen that the Xanax dosage was way too high – and they wouldn’t have re-ordered it this morning.

3:46:38 pm Stay Tuned – New Room Today!!!!

Keep ann eye on this thread! Hubby is moving out of the MICU – TODAY! I’ll post his new room number HERE as soon as FIL calls with the information.


Update – just a minute after I hit the PUBLISH button – FIL called. The MICU team “lost the bed” – so a move today probably won’t happen. But they have said as soon as another private room is available they will move hubby. I guess space is limited – and they have to give rooms to the patients best fitting the care. I think the MICU team has to “trade” space too – which is kind of funny. The inner political workings of a hospital – who knew?!


Hubby has been moved to the Itermediate Care Unit – still an ICU department but not as critical.  His new room number is #9401 for those wanting to send e-mail and/or cards.  His visitation schedule is still restricted to immediate family members only right now – I will let everyone know when he’s allowed and up to seeing visitors.

He made the move with few problems – a couple of slow response times from the nurses gave them a bit more work than they expected – but perhaps the additional work will make the nurses respond a bit faster?!

Dr. Oz stopped by this evening and spoke with FIL and hubby – he’s looking into why hubby is so weak and sleepy – perhaps a medication issue or perhaps due to the lymphoma.  He hopes to have an answer for us in the morning.

8:42:18 pm Slow & Steady Wins The Race

A good day for Hubby overall – today. He stopped taking the medication that was making him so sleepy – and it has helped a great deal! Hubby was more alert today – and was able to participate in a pretty good physical therapy session. We asked if she could work on his legs, and then help him to roll over on his side. The PT showed me what I could do to help him roll over, and gave me some tips to help him “scooch” up in bed to give his long legs more room.

Now – you might be asking – why can’t Hubby move on his own? Remember – he has been in the hospital for what – 37 days now? He was suffering from critical care myopothy and has been pretty much stationary this whole time. He’s regaining his strength – but it’s going slowly. The PT did say that once he starts moving around more – his abilities will come back to him relatively quickly.

The PT will work with an OT (occupational therapist) tomorrow before Rituxan dose #3 – and get him dangling his legs over the side of the bed, and moved into a ‘stretcher-chair’. This way he can get some time out of bed – off his bum – and practice sitting up in a safe way. We might even be able to wheel him around a bit to get him out of his room – but we’ll have to see. With the Rituxan he gets a shot of beneadryl – which makes him drowsy. But the benadryl is neccessary to ward off side-effects.

Mom-In-Law will be in town again starting tomorrow – and FIL and his wife will head home for a few days. FIL needs to get some much needed rest – he’s been in Gainesville since day 1. I’m hoping he can take some time to relax a bit – and not worry the whole time he is away from hubby.

So – progress is coming along – slowly but surely.

7:20:48 pm PT & OT & much needed sleep

Hubby had a busy day today. Upon my arrival this morning, Physical Therapy was on hand working him out. They basically help him stretch out his arms and legs as best they can, then they had him sitting up at the side of the bed, and finally moved over into the stretcher chair.  Hubby was in the chair for about an hour before asking to be moved back to bed – his stomach is still so distended that he has trouble breathing when in an upright position – and he also has some pain when he’s sitting up which concerns me.

After he was moved into bed he took a good hour long nap before Occupational Therapy came in and tortured him some more. She basically works with him on small motor skills – like brushing his hair, getting changed into a new gown, picking up his own fork, etc … I took the opportunity to grab lunch while she was working with him so I didn’t see specifically what they did today. When I returned – OT was gone and hubby was sound asleep again.

I stuck around for a few hours – but headed home at 3:30pm. Hubby was still sleeping – so I snuck out without disturbing him. I’m kind of bummed that he wasn’t more awake – but I understand that he needs to rest. The drive back and forth is starting to wear me out – I find myself ten times more emotional than I should be right now – and little things like not being able to talk to my hubby are making me cry.

4th dose of Rituxan on Thursday – then we speak with the docs the following Monday. We’re all holding our breath for good news … but we just don’t know that it’s going to be good.

11:06:44 am House Call!

Dr. Akin called me at home this morning. After my heart stopped leaping out of my chest, I was able to speak with him. Apparently, my hubby had asked if he could call and give me an update – to let me know what the next steps would be.

Hubby was doing well this morning, Dr. Akin said that he is happy with the progress, that hubby looked much more alert, his vitals were all perfect, and his kidney and lung functions were all very good. He was also pleased with the pace of the physical therapy – but did mention that hubby would need much more PT before he’s back to normal.

The last dose of Rituxan will be given to hubby on WEDNESDAY – so let’s hope the dang Tropical Storm is well out of Florida by that time. {FYI – it looks like the storm will hit Tuesday and not Monday – woo hoo! I can still drive up to see hubby as scheduled!} Dr. Akin was VERY hopeful that the Rituxan has worked and the tumor responded. He said in most cases the Rituxan works with no additional chemotherapy necessary.

They will do a CT scan of the belly on Thursday or Friday – and at that time will evaluate what steps to take next. If the tumor is gone – they will drain any remaining fluid from hubby’s belly and make arragenments to TRANSFER HIM TO AN ORLANDO HOSPITAL TO CONTINUE HIS PHYSICAL THERAPY!!! {I am not a religious person – but Oh please Gods and Godesses all over the universe – please please please let this be the case! Please please please please please!!!!}

If the tumor is still there, but smaller than before, then Dr. Oz and Dr. Akin will meet with the Oncology team to agree to continue the Rituxan another two doses – then reevaluate. If the tumor is still there – but has not shrunk or is larger, then they will meet with the Oncology team to determine the next course of treatment.

Again, Dr. Akin was very hopeful that the Rituxan was doing the job. I am sure if there were any concerns that he would have backed up his statement with some sort of disclaimer like “but you never know” or “but each case needs to be progress individually” or something otherwise similar. But – being that I try to protect everyone else – I’ll place my own disclaimer in stating that “please don’t get your hopes up too high. This is cancer that we are dealing with – and we need to be prepared for any diagnosis.”

We will meet with Dr. Oz and Dr. Akin next Monday to see what the test results indicate. It would be the best birthday present EVER if hubby gets a clean bill of health at that time!

9:16:53 pm Rituxan On Hold A Few Days

I made it up to Gainesville today – and found hubby resting – but not comfortable. His tummy was extremly distended again – and he is running a fever. Dr. Akin and the Transplant team decided to hold of the Rituxan dose a few days until the fever has left. Hubby will recieve this either Friday or Monday – depending on how he responds to the new antibiotics.

As part of the tests run to determine WHERE the infection might be, the team decided to insert a drain into the tummy and remove the fluid {which we have wanted them to do for about a week!} – and they have left a drain in for the meantime. It’s just like the Gall Bladder drain – not a permanent thing – but will stay in until that lymphatic fluid stops building up and drains. While I was there, they took off 2 liters of fluid, and before I left a 3rd liter bag was almost full. I am SURE hubby will be feeling a bit more comfortable by tomorrow.
My only concern was – when the Radiologist was in to assist in placing the drain, while looking at the ultra sound she looked over at her Residents and said “Well – that’s really interesting, isn’t it.” Now – what the heck does that mean? I asked Dr. Akin if they saw anything other than fluid onthe Ultra Sound, and he said that this type of scan would only show the fluid build up. That hubby would need a CT Scan in order to show if the tumor was still there.

Of course – I was peeking at the screen the whole time – but heck if I could tell what was what. The only thing I saw that looked unusual was a squiggly white line – looked almost like a string. I’m sure it wasn’t anything – but combine that little image with the comments of the radiologist – and what conclusion do YOU come up with? Hmmmmm….

Now – I didn’t tell you all this before – but since I’ve rectified the situation I think I can tell you now. While still in the MICU, Hubby asked me to take down all of the cards that you have sent to him – they were making him sad. I took them home because I didn’t want him to be too upset. But now that he’s out of the MICU and doing better, I thought it was time to bring back the cards and decorate his room again. I told him – if he wanted to cards down – then HE had to get up out of bed and take them down! I also sent in a collage of family and pet photos. I forgot to bring in the camera today – but will snap a few pics for the web site and post them tomorrow.

Now – I’m off to write a fax to our family Dr.  I think I have an ear infection and need to see if he’ll write me a prescription without coming into the office.  I have to send in the fax – Why?  Because I have no faith that his staff will give him a verbal message.  So – I’ve already left a voice mail message for him, and now will send the fax.  If I don’t hear anything by mid morning tomorrow I’ll break down and call his cell phone.  Wish me luck!  My spinning head could use it!

7:45:58 pm Short Post Today

Short post tonight – I’m waiting for my doctors office to call me back and say they sent a prescription to the pahrmacy for me.  I feel like I was run over by a mack truck – and obviously won’t be making it back to Gainesivlle tomorrow.

The docs decided to give hubby his final does of Rituxan today afterall – which is really the only thing that happened today.  Hubby’s mood is still pretty down – and he’ll probably be bummed that I can’t make it up there tomorrow.  I did my best to try and cheer him up – but just couldn’t.  He’s uncomfortable and tired and sore – and there’s nothing we can do to help him with that.
Today is day 47.

2:33:24 am Mid-Night Panic –

Yeah … I know it’s 1:20am in the morning.

I was laying in bed thinking – the Sudafed I’m taking is making me a bit hyper – so I can’t really sleep. My father-in-law called me tonight from the hospital and told me that he found out relatives COULD stay overnight with the patients. He was going to stay overnight because he thinks Hubby is getting lonely – that he probably would do better if someone stayed with him as much as possible. And the nurse said he could stay till 7am – but had to leave at that time till 11am so the docs could do their rounds.

At the time I thought – well – great. I wish that I could stay overnight with hubby!!!! Why didn’t anyone tell us this before? We’ve been in hospital 48 days now.

So, If FIL wants to stay with hubby – then there’s nothing really I can do to stop him – I’m at home sick and the nurse probably won’t let me anywhere near the room. Hubby would probably do better with FIL there. So why am I so jealous?

While I was laying in bed not being able to fall asleep, I started thinking about what kind of wife I’m being. Seriously. That should be ME staying in hubby’s room – taking care of him. I should be the one having sleepless nights on the cot – tossing and turning – waking up at every strange sound or machine beep. I should be taking care of my husband. What the hell is wrong with me?

If I were a better person I would have found a way to stay in Gaineville full time – I would have sold my kidney for $10,000 and just leased a house for the summer. I would have moved my son and my dog and my cat and my gerbils and my fish to Gainesville with me. Or at least found someone who could care for them.

But I didn’t. Does that make me a bad person – a bad wife. I sure hope that the in-laws don’t see it that way. They both have experienced hospital life with hubby before. I don’t know what to expect. I try and follow the hospital rules as posted – I don’t know that these rules can be broken. That if the sign says Visting Hours are 11am – 9:30pm – that doesn’t always mean I can’t be in his room.

I know I beat myself up over this every day. I have an ovewhelming sense of guilt for not sitting at hubby’s bedside holding vigile 24/7. But I also realize – logically – that I’d be more exhuasted and probably more sick if I did this. And what good would that do either of us in the long run?

Yet I can’t sleep tonight. I feel guilty for not being the one to hold vigile over hubby 24/7. I want everyone to know that if I could – I’d be in there. That I beat myself up every single day when it’s time to head home. I don’t want to leave – but I have to.

And it’s not fair. It’s not fair.

1:27:46 pm Important CT Scan – TODAY

6:46:17 pm Saturday Night Fever!

On the way to and from Gainesville today, my favorite radio station was celebrating a Double-Disco Weekend!  Every half-hour you could count on hearing your favorite back-to-back Disco hits!  While it was fun, I can’t seem to get the songs out of my head! Ah!

I drive up to Shands at a bright-and-early 6am today.  Yes – can you believe I actually made it out of bed by 5am!  Ok – it was 5:10am – but close enough!  I wanted to be at the hospital by 8am morning rounds to speak with Dr. Oz.

Hubby was in decent spirits when I arrived.  FIL stay over-night and is helping out when hubby needs it – and I think that is making a positive difference.  I’m not sure if FIL is getting any sleep though.  But I’m glad that he is there and able to help when I am not.

We got hubby upright in a stretcher chair and I was able to give him a good hair-wash – he was appreciative but his lower back gets sore quickly – and he wanted to move back to the bed after 30 minutes.

Dr. Oz made it in to our room around 9:30ish – with no news really.  He said he needed a few days to go over the CT Scan – to analyze it and talk to the expert – and he’d be able to give us some sort of news by Tuesday morning.  So I’ll head up again at 6am on Tuesday – and hope for the best.

Changes that took place this morning were small – no need to wear the heart monitor or blood pressure cuff 24/7 – these will be monitored manually at this point.  And one of the drain bags was removed.  Hubby has a blood clot in his leg and one in his arm – so they are giving him blood thinners.  This is why his leg is hurting so much.

Not much other news – I’m bringing my son up tomorrow to spend time with hubby for Father’s Day.  Hubby’s almost ready for visitors ….he’s starting to feel a little bit more like himself again.

6:53:44 pm Big Day Tomorrow

As the post on my main page sez – Hubby slept the majority of today.  He had a hard work out from Physical Therapy – they had him in a “Standing Chair” – meaning they strapped him into a contraption that allowed him to stand up for 50 minutes.  He was exhausted at the end – but he did it!  Woo Hoo!

Dr. Oz stopped in at 5pm this afternoon and instructed Mom-in-law that he would be in sometime tomorrow between Noon and 4pm to discuss the results of hubby’s CT Scan (is the tumor gone?) – DO NOT PAGE HIM as he will be too busy to respond.   {Picky Doctor – what if there’s an emergency to interupt your busy schedule?}  The little devil inside of me soooooo wants to crank call him – but I know that would just slow things down.
Anyways – tomorrow is a BIG BIG day.  It will be a day of decisions – either way.

2:15:15 pm Sleepless Nights

It’s Wednesday – I think.  I’ve been pretty much awake for 32 hours and am a bit loopy.  I’m eating what any good American girl would in times likes these -ice cram and chocolate.

Obviously, we got the results of hubby’s CT Scan yesterday.  The tumor is still there – in fact it was slightly larger than before.  The Rituxan did not work – hubby was resistnt to the treatment.  Dr. Oz came in and told us the news – saying that if we decided to pack up and head home right now with no further treatment – hubby would have about 100 days.

Hubby and I stayed up talking most of the night – and we’ve got grand plans for a HUGE party when he does come home.  Something silly – and fun – full of our favorite things in life – Family, Friends, Food & Laughter.

We spoke with Oncology today – who were reccommeding that we try a more aggressive form of chemotherapy – 2 doses over 3 week.  I can’t recall the names of the medications – but it is CVP for short.  This type of chemo is not so strong were hubby will loose his hair – but he may experience nausea and vomitting.  His biggest risk is infection – in fact – those patients with PTLD who were taken to this next level of treatment and died did so because of complications of infection.

Hubby decided to go for the treatment.  He’s being transfered to the Cancer Ward – 11th floor at Shands – and they will give him his first “trial” tomorrow morning.  The prognosis is still 30-40% recovery.  So we still have a little hope left.

I’m at home now – don’t know how I drove the two hours withut falling asleep – and will hit the showers and bed immediatly following my nutrisious lunch.

Yours sleepily …..

6:22:16 pm Chemotherapy Trial – Round 2 Begin

Hubby started his Chemotherpay trial without any infusion side-effects today – and is resting comfortably ina new bed today. Not much other news to report – I’m at home today and it’s difficult to get too much information from the nurse or from the in-laws via their cell phones {cell phones just don’t do well in the hospital}.

I did find information on the Chemotherapy Drugs – once again at the Leukemia & Lymphoma web site. The three drugs in hubby’s “combination” are called Cytoxan, Vincristine and Prednisone.

I’ll give you a more detailed update tomorrow after I see him!

{note – 06-23-2006 – did not blog about this for some reason.  When I walked in to Jim’s room he was sitting up in bed wearing a “Happy Birthday” hat and had this giant present waiting for me.  He had asked his mom to go out and buy a Kitchen Aid mixer for me – it was white – and extremely heavy.  My birthday was the very last thing on my mind – but Jim in his drugged up state had remembered.  And he’d had enough time alone with his mom to ask her to go out and buy it for me.  I wish I had had that alone time with him.  So many questions went unanswered.}



7:54:11 pm May Move To Orlando Hospital!

We are in the process of trying to move hubby to the MD Anderson Cancer Center here in Orlando. Of course – there is all kinds of paperwork, red tape and politics involved – but we’ll keep you up to date on our efforts.

I’m pretty impressed with the facilities – and we have been told by the Lymphoma “expert” at Shands that the Dr. we selected at MD Anderson is good. Hubby wants very much to come HOME-home, so we thought the least we could do is move him back to Orlando.

This won’t happen quickly – it could be next week. I’ll let you know.

ALSO – Hubby is starting to express an interest in having visitors. If you’re interested in visiting hubby at Shands this week – please let me know when so that I can add you to his Visitors list on the day of your visit – AND  – make sure there are no procedures scheduled.  Visiting hours start at 11am daily.   THANKS!

8:38:44 pm Home Hospice Arrangements

This morning hubby’s  Doctor told us that the chemotherapy drugs were showing signs of kicking in.  Hubby’s blood pressure was dropping, and his blood test results showed his white and red blood cell counts were very low.  This was to be expected.  HOWEVER – the blood tests also showed that hubby had developed an infection SOMEWHERE – and asked if hubby wanted to pursue treatment.  I asked the doctor to be straight forward – and tell us exactly what he thought hubby’s chances of recovery were.  While he was at 30 – 50% at the start of all this – his recovery was now 5% – if that.  The doctor continued to say that if they were to leave the infection untreated, hubby would only have a few days left with us.

Hubby made the decision to end treatment – but asked that he be allowed to come home.  I’m in the process of making arragements with the Hospice – and hope to have hubby home by Thursday.  He’ll have a team of nurses, aids, pain managers and our own family practioner – Dr. A – to make hubby as comfortable as possible.  I’ll be taking on the majority of his care here at home – his nurse will not be here 24/7 – and hubby’s family will all be close by.

Please keep hubby in your thoughts this next week – remember all of the fun and laughs – that’s what he wants us to do.

8:31:48 pm Once In a Lifetime Love

My knight in shining armor, my one true love. The bravest man any of us have ever know. Hubby went in peace this morning at 10:45am – both his mother and I were there.

Note: Hubby wanted me to let family know – in lieu of flowers – to please make a donation to the Orlando Chapter of the Cystic Fibrosis Foundation in his name.

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