Transfer to rehab

At 3pm promptly they came and transferred me to the Manor Care Heartlands facility. I am in room 311 A and the phone number to the room is 904-419-2542. Check-in was fine and the facility seems very clean and very pleasant. The staff has been wonderful so far. I will have a better idea of the schedule soon. Visiting hours are from 8 am to 8 pm but I understand that physical therapy usually happens in the morning so afternoons seem better for visitors at the moment.

My boss Sue from St. Louis was in Orlando and drove up to Jacksonville and we had a wonderful visit.

Rick's sister also drove up today from Gulfstream and will be staying for the weekend. She and Rick were here in the aftternoon and had the opportunity to meet Sue. We had a very pleasant visit.

Since this is a semi-private room things will be bit different but my roommate Willie and I seem to be getting along quite well. There are common areas to entertain visitors and all indications are that we are to spend as little time in our beds as possible.

I fully expect that tomorrow will be a difficult day. Surprisingly dinner was delicious.

Rick and Wendy are going to do some quick shopping for some rehab clothes for me to use while I'm here.

Margo and Simon went for baths today so that they can visit. Hopfeully they'll be well behaved. I'd hate to think that our dogs would be banned from the place for bad behavior.

Keep the emails and blog comments coming. They're greatly appreciated.

Rehab move is scheduled

Last night passed much as the night before did. I had the dose of Temodar but since I had not had a nausea problem the night before they decided not to give me the anti-nausea drug in advance. Luckily, I did not have any problems with nausea through the night.

The move to the rehab facility is scheduled for 3:00 p.m. today. I will be going from Baptist Hospital to the Heartland Health Care Center. The address and phone number are included below. Once I am there and get more information on the treatment plan I will post that information here.

Heartland Health Care Center
3648 University Blvd. South
Jacksonville, FL 32216
904-733-7440 (phone)
904-730-7668 (fax)

Planned move to rehab

I will be moving to rehab tomorrow, Saturday. The exact time of day is not known as of yet. I will be moving to a rehab facility - I believe it's called Hallmark - that offers three hours of rehab a day and all necessary nursing care. Basically they will be busting my ass to get me back on my feet again which is what I need. I don't anticipate that the next few days will be pleasant at all but they're what I need.

Rick toured the facility today and found it to be pleasant. They do permit pet therapy so Margo and Simon will be able to visit also. As soon as I have an exact address and visiting hours and phone number I will make that available.

It is my understanding so far that they won't want visitors interrupting any of the scheduled rehab sessions but I will know more about that later.

I did have PT and radiation today. A different machine was used to elevate me to a standing position but I was not able to support my own weight. The physical therapist did do extensive leg exercises with my legs while I was on the bed and did indicate that my legs are getting stronger.

I'm glad to be discharged to rehab but anxious at the same time, as this is going to be the next big step in my recovery.

Wonderful memories

A few days ago my good friend Jim sent me a tin of my very, very favorite cookies - the ones that his mom always made at Christmas. That for the past number of years I make at Christmas and share with my friends and co-workers. Each year they ask me, "When are you going to make those pecan cookies, those one that are so, so good?" When they arrived the other day, because dietary is trying to keep my blood sugar, I asked Rick to keep them at home. Today I asked Rick to bring a few over so I could enjoy them. One of my dear friends Leslie was here with me when I opened them up and I told her she needed to try one. When she tasted it her eyes rolled back in her head in an expression of pure pleasure. I'm going to ask Jim to publish the recipe for his moms' cookies here so that you all can also enjoy these wonderful gifts of love. This year I took some out to my office at Christmas time, packed them very carefully to take on the flight with me, and they all made it from Jacksonville to St. Louis without breaking a single one. They disappeared. They're that good. There's that much love in them.

Also (today was a bad day for sugar) one of my local friends Doris brought a chocolate éclair over from Worman's bakery. So after Leslie and I had shared these incredibly decadent sand tarts we then cut into a few slices of the Worman’s éclair. My blood sugar is up tonight. I'm a very happy and well loved man.

Update on rehab

I posted for Barry that he would be moving to rehab tonight, and then he later learned that it would be tomorrow morning. I edited the post to that effect, but I don't think it resends the updated information to e-mails. So Barry will be moved to rehab tomorrow.
Nancy

Moving to rehab 5/30/08

I'm being transferred to rehab tomorrow morning, the one that Rick investigated, and as soon as I find out the address I'll be posting it.

Chemotherapy update

I did receive my first round of chemotherapy last night by pill with an anti-nausea drug prior to that. This proved to be successful and prevented any nausea. It’s is currently 9:20 a.m. I was able to feed myself most of breakfast and rested very comfortably throughout the night. This drug is an interim treatment until I am finished with the radiation.

Both my oncologist and my surgeon specializing in oncology stopped by this morning, not with any new news but to inquire about me until they’re able to get more actively involved in the treatment plan.

PT should be over some time this morning with the device that will assist in helping me out of bed and support me while attempting to walk.

Chemotherapy

Chemotherapy will be starting tonight in pill form. I'll be taking Temodar. I will be given an anti-nausea agent first and then the Temodar and hopefully I'll sleep peacefully through the night with that. This is an interim agent until the radiation treatment is complete before perhaps moving on to a more aggressive form of chemotherapy.

I particularly want to express my gratitude to Jim and Nancy for the blog. I have been getting so many positive comments from people about how helpful it is, how informative it is, and how easy to use it is. I'm just very, very grateful that they're taking the time to do this for me.

Triggered memories

I have received a number of beautiful flower arrangements from my office and from friends across the country but the flowers that have flooded me with wonderful memories are some gardenias that our good friends Mike and Mike brought in from their back yard at the beach. They have a huge gardenia bush that is covered with large blossoms and they brought me a jar with four or five enormous gardenias. The fragrance of them has triggered memories of Grandmother Cronise's garden and of my mother's gardenia bushes on our front porch when I was a child. Whenever Grandmother would go to the Belair market she always wore fresh flowers in her hair and this was a precious memory to come back to me today. I have a small fan sitting on my bedside table and it is wafting the most glorious gardenia scent across my bed.

The nurse brought in some graham crackers as a snack today and I have not had graham crackers in years. But they tasted so good that they reminded me of Miss Lockhart's class and the breaks we had in kindergarten. We would have graham crackers when we woke up from our naps there.

Possible discharge to rehab

Ellen the social worker has been working very busily the past day to assess what facilities will be available in Jacksonville that will be able to accommodate my physical therapy needs as well as my radiation therapy needs. I have nine radiation treatments left that need to be done on a daily basis. Since those are not offered at PT facilities, transport to those radiation facilities is something that needs to be taken into consideration.

Rick will be visiting one of the sites tomorow, that we believe to be the preferred site, where I would be getting approximately three hours of physical therapy a day and any appropriate nursing care. Additionally, I would be able to travel to the radiation therapy site to complete those treatments. Both of the sites under consideration offer pet therapy so Simon and Margo will be able to visit - hopefully separately so they won't get too rambunctious. Otherwise I'll just be able to visit with the pets that are in residence. That decision should be reached within the next day or so and as soon as any transfer plans are known they will be posted on the blog with the new address.

Physical therapy

Physical Therapy did arrive this afternoon and while I was still not able to stand, Barbara did about a half hour to 45 minutes of leg exercises to strengthen the leg and she was encouraged by those. It is the intent tomorrow to use some sort of machine that will assist me out of bed and that I would be able to use as I attempt walking. It will support me so that the fear I have of falling will be minimized.

An update from Barry

I’ve completed three of my 12 radiation treatments, and those are being very easy to do. Of course there’s the transport over to the oncology units. The chemotherapy will most likely start tonight, and it’s likely I will experience nausea and loss of hair, but since I don’ t have much hair to start with, that doesn’t bother me in the least. The doctors are still trying to determine what the best rehab and treatment options are, and the social workers are continuing to work on that. The local support of friends has just been astonishing; the remote support from people calling and e-mailing and sending flowers has just been overwhelming and very much appreciated. And I appreciate all the love that people have been sending – it does strengthen me and help keep me focused as to what may be coming ahead. Calls are welcome at any time and e-mails are welcome and comments to the blog are most welcome also. I hope the blog is helping people stay informed. If you want to pass that address on, you are more than welcome to do that.

I actually had a little more appetite today and was able to eat more of lunch and dinner than I had been able to but still am having difficulty with voiding, which is something they’re investigating. I had bladder and kidney scans this morning to assess function, but it’s been indicated to me that in a spinal injury those are some of the last functions to return. So everything seems to be progressing as expected.

I truly don’t know when I’ll be leaving here, but as soon as I know, that will posted on the blog immediately so people will know what facility I’m at. The nursing staff is doing an excellent job of keeping the pain under control so that I’m able to rest comfortably, and I’m able to sleep in the evenings. I’m trying to keep my spirits up as much as possible. There are, of course, down moments as I contemplate the future, but I’m just trying to contemplate all the possibilities and be realistic about what may lie ahead.

When the melanoma first appeared two years ago I did a very serious assessment of my life and how I felt. I did make some definite changes in my life in terms of work/life balance and enjoying life more, and that’s going to be a continued focus throughout this journey. If my oncologist indicates that once treatment starts it may be possible for me to live somewhat of a normal life for whatever time I have remaining, whether it’s a year or five years or however long, It’s my full intent to do that. If I’m able to travel again, I will, and if not then I will enjoy life in Jacksonsville and just live life to its fullest. There’s a real balance that needs to be struck . Too many people put off enjoying life until retirement – you can’t do that. You have to enjoy life when you can. So that’s what Rick and I are going to do.

Oncologist report

Barry called this morning. His oncologist had been to see him and he had received some very difficult news. According to the oncologist, a PET scan shows that there has been spread to his liver and his lungs. The doctor recommended that they begin chemotherapy soon in the hope that the disease will respond to that. More information will be available once he has received the doctor's written report. Barry is determined to face this with strength and bravery. This certainly comes as no surprise to us who know him.

More on 5/28/08

A social worker from the hospital was just recently in the room discussing options for discharge to a rehab facility. What they’re trying to determine is if there is a facility that will be able to accommodate the rehab and permit the radiation treatments, which will have to take place off site. Hopefully that will be determined within the next day or so. So it’s possible I will be moved soon to another facility to concentrate on rehab but still get the radiation treatment that’s needed.

Wednesday 5/28/08

Today has been a slow day so far: Radiation treatment hasn’t taken place yet and PT hasn’t been in yet, so it looks like it will be an ugly afternoon. But I had an incredibly pleasant surprise when John Rosen, a co-worker from the Omni Buyer Implementations, popped in for a visit from Salt Lake. He flew here last night just to visit me and flew home – just amazing. We had a wonderful time reminiscing about the project and funny stories along the way.

A urologist has been in to discuss urology therapy since I’m still having difficulty with passing urine. I had a comfortable night and rested well. I’m certainly keeping up on the painkillers and I don’t have much to report. We’re still trying to decide whether I need to continue rehab here because of the radiation or go to a rehab facility – that’s still up in the air right now.

I’m continuing to get lots of comments from people from all over, and people are signing up for the blog, which is greatly appreciated. I just continue to be grateful for all the thoughts and prayers that are coming my way. Right now, many posts come from my blog labeled anonymous, and I don’t know who is making the comment unless there is a name at the end of the posting. So names would be most appreciated!

Radiation treatments

This morning at 8:30 a.m. I was taken from my room to start targeted radiation on the thoracic spine. As the radiation oncology treatments take place in a completely different building, I was transported by ambulance. Since this was the first occurrence of the radiation treatments, they took about four hours to do the initial setup and check measurements. This was a one-time setup and the radiation therapy itself took only ten to fifteen minutes. Subsequent treatments should be easier. Today's process was exhausting.

After the treatments were complete I was returned to my room at the hospital. Physical Therapy showed up around 4:00. PT (pain and torture) was not as successful as it was the previous day. I was very wiped out from this. Because the radiation should be significantly easier on subsequent days, I hope the PT will go more easily in the future.

The treatment plan for rehab is yet to be determined but I expect that will be fleshed out in the next day or so. Pain management is a prime concern so that I am able to rest appropriately.

I am getting comments and well wishes from all over the world and am very grateful for those. People have been more than willing to make any of their contacts available to me that might assist in this journey. Those contacts are greatly appreciated.

Location update

Location update

After I was moved out of ICU, I was transferred to a neurology unit, Tower 709 in Baptist Medical Center. Visiting hours are from 10 a.m. to 6:30 p.m. and 8 p.m. to 9 p.m. There is no limitation on visitors as long as we’re not having any raucous parties. People are certainly welcome to stop by and visit if they’re able.

Since it’s a holiday weekend there’s still a lot up in the air about future treatment plans and about whether I’ll be pursuing rehab in the hospital or will be discharged to a rehab facility for rehabilitation for the paralysis. When physical rehab arrived this morning in the persons of Elizabeth and Elizabeth, one of them was of the impression I hadn’t been out of bed yet at all and was clearly ready to kick some ass. When I explained that I had been out of bed the previous day and had walked a few steps she put the cattle prod away and we had another PT session where the chair was simply placed farther from the bed than it had been the day before. With the aide of the walker and their support I was able to walk about 4 feet out of the bed and 3 feet back into the chair, where I’ve now been resting for about three hours. Luckily, to get people back into bed they have a piece of equipment called a patient mover where they just gather you up like a fish in the net and then swing you back into the bed.

Probably the next few days will reveal a lot about future treatment plans and I’ll give updates on that as it occurs. I do have a beautiful view of downtown Jacksonsville, so the room is pleasant and comfortable. Hospital food is as one expects.

I know that many people have started subscribing the blog, as I’ve been receiving many, many comments. And while I’m unable to respond to any of them individually at this time, I’m very grateful for the signs of love and support that people are making. I’m able to receive them on my Blackberry without any difficulty, so, please, keep the comments coming. They’re a source of strength to me.

Since my initial bout with melanoma two years ago, one thing I discovered very strongly about health care in the United States is that while we may have the best health care available, each person absolutely needs to be their own health advocate. If you haven’t had a physical exam recently, if you haven’t been to a dermatologist for a standard skin check, if you have some ache or pain that you’ve been putting off finding out about, stop putting it off. See a doctor for your own peace of mind and so you can understand exactly what is going on in your own body. Had I not done that over the past several years, the situation I’m dealing with right now, as trying as it is now, could be worse. You owe it to yourself and to your families to take care of yourselves as best you can. If you have questions about advice your physicians are offering you, challenge it. If you don’t feel you’re getting the care from a physician that is appropriate, change your physician. The Web can be a wonderful place for information, but it can also be a very dangerous place for information. Be sure the information you’re reading is appropriate and vetted and current.

You will only receive updates from the time you subscribe to the blog, and there may be previous updates you’ve not yet viewed; if you want to review previous blog entries, please visit barryw.blogspot.com, where entries appear from newest to oldest. Feel free to share this information with anyone I may have overlooked or for whom I didn’t have an e-mail address.

First steps

Barry just called. The people from physical therapy were in to see him and they worked with him to practice walking. He was able to take some steps on his own with the help of a walker. The physical therapy staff were pleased at his progress. He was very tired from the experience when I spoke to him but was gratified to have reached this milestone.

First entry

MEDICAL UPDATE

My previous update was approximately two years ago when I was declared cancer-free and my treatments were complete. Since that time I’ve been following standard protocol of quarterly visits to the oncologists with six-month PET scans. My last PET scan was Nov. 27, which was still clean. A visit to oncologist on Feb. 12 proved normal. This past Monday, May 19, a visit to my oncologist indicated there were two masses, one in my pelvis and one in my armpit. A PET scan was scheduled for Wednesday, May 21 but Tuesday night I started feeling some numbness in the chest and lower extremities. By the time I had an appointment with my surgeon on Thursday, May 22, the numbness had spread rapidly and walking was becoming difficult.

When I arrived at the surgeon’s office on Thursday, he decided it was appropriate to admit me immediately to Baptist Medical Center in Jacksonville, Fla. His quick action proved vital – another two days and my paralysis would have been permanent and irreversible. I’ve worked in health care my entire life, but I’ve never been as impressed with the dedication to patient care as I’ve experienced in the past couple days, from the ward clerks to the nursing staff to the dietary assistants – they’re not just interested in doing their job, their concern is healing the patient.

Once admitted, an MRI was scheduled (which took three hours to complete), a CT scan was scheduled and the emergency room physician confirmed his initial diagnoses that compression of my spinal column was taking place. This compression was what was causing my paralysis. Luckily, the best neurosurgeon in Jacksonville was available that evening, and just several hours later I was having an emergency thoracic laminectomy in an attempt to decompress the spinal cord.

During this procedure, approximately 8 inches of spinal cord was exposed, and five tumors were removed from between the vertebrae. I was back in recovery by 11 p.m. on Thursday evening and was back in the ICU. I was in the ICU for monitoring, not for anything else. Friday morning, May 23, I could feel my legs again. I could move both legs. The left leg is lagging the right in improvement, but my neurosurgeon and his associate both expressed confidence that I will experience a 90 percent to 100 percent recovery from the paralysis.

After two days in the ICU, I have been moved to a standard patient floor where I will be continuing my recovery. This will be a three-stage recovery: The first stage will be to learn to walk again, and that may take a bit of time; stage 2 will be radiation treatment of the spine for two to three weeks in short, daily installments to treat tumor that may be in the spine, and the third stage will be to address the melanoma itself. At this point it is not known what course of action will be taken for that but all avenues will be explored.

Thursday was a pretty tough day, but as each day progresses my spirits are getting better and better and improvement is incremental in the right direction.

I have seen probably 20 doctors in the past three days. I certainly expected to see the doctors currently involved in my care here at the hospital, but all of my doctors have been either visiting or calling to inquire after my well-being and to lend their support and best wishes, and I’m grateful for that.

FRIENDS AND FAMILY

I want to express my gratefulness for the outpouring of love and affection that has already been coming my way. I’ve always known that I had a great group of friends, but I’ve been truly humbled by the reaction to my situation. I haven’t specifically mentioned co-workers because I’m including them as my friends. This blog will be my primary way of keeping in touch with people and keeping them up to date with what’s going on. Two of my dear friends in Baltimore are coordinating this for me and setting it up in such a way that you’ll have the opportunity to subscribe to the blog and simply receive updates by e-mail as they’re posted. You can also visit the blog at any time to review the entire history of postings.

You’re welcome to call my cell at any time; if I’m not in a position to answer calls, I’ll have my phone set to silent and a message will be taken, so please do not hesitate to contact me. Don’t feel you need to call if you’re not comfortable. Any comments you post to the blog will be e-mailed to me. If you prefer to e-mail me directly, you may do that, too. It’s my goal to recover from this as completely as possible and to get back to living a normal life. I would particularly like to express my appreciation for the strength, love and support that my partner, Rick, has been showing. He’s been strong for both of us and is my rock.