A Care Page for Paul Eyes

A Lucky Man

This post is dedicated to Louise. When we first started out on this journey, it was Louise who coined the phrase "We are on this road together". She has been so true to that sentiment. I get a lot of  people who comment that I am very "positive" or have a great  "attitude", well, I have to confess to some moments in the last few months that have not been quite like that. There have dark times when I have looked at my kids and wondered if I would be there for them at their next birthday. I had a lot of worries about my lung status in recent weeks, and Louise was right there with me during the bad times.

We all know that's what it takes in any kind of relationship to keep things going. Give and take between partners, right now Louise is doing a whole lot of giving.  One of the worst parts of my therapy is taking oral prednisone for 5 days after chemo. The prednisone has a side effect of making me short tempered at times, not a good thing with three kids in the house! At least I am aware of this effect, but Louise (and the kids) still have to put up with me.

Louise has been there with me for every single doctors visit, she has made the calls to the doctors office, she has driven me everywhere, she has sat through 4 chemotherapy sessions lasting up to 7 hours each, in an uncomfortable chair my I add!  Louise attends to the medical bills, the  phone calls to the house. All this and she runs the kids around to their various activities. The toll on the caregiver of a cancer patient is well documented. I have seen Louise rightfully as exhausted as myself by certain parts of our journey.

For those that know Louise, let me tell you that you are lucky if you can count her as a friend. I have never known anyone to tolerate the good and bad of an individual so well. Once you are fortunate to know Louise as a friend, know that you will be her friend for life, she will be there for you, just as she has been there for me.

Louise, you are my friend, my love, my everything (was that a Barry White song?). I am such a lucky man to have her. Today is Louise's birthday, so please send her your best wishes when you have a moment.

Paul. October 27. 2007.

P.S. If this does not get me a 52" plasma screen HDTV I am not sure what will!

Chemotherapy #4

#4 today. Looking like I will recieve 6 total now, so I will be two thirds of the way there by the end of the day! My brother Vincent, and my sister-in-law Linda, left for the UK yesterday. They were an incredible help with the kids over the last couple of weeks.

I had a couple of biopsies peformed during my lung surgery last week, both came back clear for any cancer. So more good news there. My left lung is holding up fine, Dr. K says the lung sounds are coming back well. I am so relieved about the lung surgery and the outcome.

Off to the oncology center in an hour...

Paul. October 26. 2007.

Home Sweet Home

I was discharged from Howard County General Hospital yesterday morning. Dr. Henry came by Sunday morning and removed my chest tube. Overnight on Saturday I had convinced myself that I could feel the end of the tube - think garden hose- close to my ribs, Dr. Henry gave me a knowing smile before removing all 12 inches of said tube from my chest!

Many thanks to Louise for keeping the blog updated while I was indisposed. I was surprised that she ommitted the fact that she chose for us to watch the movie "Flatliners" the day before surgery, but there you have it.

The past few days have been full of amazingly good news for me. I went into the surgery on Thursday morning in a very positive frame of mind after the PET scan on Tuesday. The draining of 5.5 liters of fluid (Thoracentesis) from my left pleural space went well. In addition to the thoracentesis a procedure called a Pleuridesis was also performed. In this procedure talc (yes talc) mixed in saline (around 50ml) is injected into the pleural space. The idea being that the talc will irritate the pleura, helping to form a bond between the two layers of pleura, and essentially seal the pleural space and so protect the lung.

The 5.5 liters of fluid was such a large amount that it had moved my heart over to the right side of my chest. On the flight home from England I had retained fluid in my legs because the heart was being strained by the backup of fluid in my circulatory system from the left lung being collapsed. This operation  was certainly needed, and I felt lucky that I went into it as a relatively young and healthy individual.

I spent about one hour in surgery, under general anesthesia. Two incisions were made in my left side, one for the drainage and chest tube, and another used for a camera and biopsy procedure. My first question after waking up in the recovery room was whether my lung had reinflated. I was very worried that my lung may not be able to function again after spending most of the last month deflated/collapsed. Dr. Henry reassured me that the lung looked "healthy" and that it had indeed reinflated. Two biopsies were taken, but Dr. Henry said that he was "unimpressed" by the appearance of the tissues. All very good and hopeful news.

On Friday and Saturday I increased my activity level each day, carrying my chest tube drainage container. I walked around the nursing unit. I figured out that it was approximately 60 yards around. So 25 laps was close to a mile. On Friday I walked 1.5 miles, then 2 miles on Saturday. Dr. Henry told me exercise was the best way to get the lung functioning again, so off I went!

The key to getting discharged, was to have decreased drainage from the chest tube. This would indicate that the pleura was forming a seal and that fluid was no longer leaking into the pleural space. All went according to plan, and the drainage fell to a trickle by Saturday morning. The left side is quite painful, and I quickly learned to take the pain medicine on a regular basis after thinking I was doing OK initially on Thursday, and then almost passing out as a result!

In summary, this last week has moved me forward again. I can now look to the future with at least a modicum of confidence. As long as the lung continues to do well, I am looking at 3 more rounds of Chemotherapy to complete my treatment, with the last one now due December 7th. I would then have another PET scan at the end of December to confirm that the cancer is in remission. My next chemo will now be on Friday (it has been delayed a week) October 26th. After recovering from chemo number 4 (and assuming the lung is doing well/stable) I am hopeful of returning to work at the begining of November.

I thank everyone for their thoughts and prayers. I feel very positive right now. Concentrating on rest, walking, eating well, and healing my left side which is still tender/painful.

I wanted to send my own thoughts and prayers to the Fuji family. I taught two of the Fuji girls at Patapsco.  Mrs. Fuji passed away this weekend. The contrast between my own good news and feelings, and the sadness of the passing of Mrs. Fuji really brought the emotions home to me about the effects of cancer on families. Sadly cancer will or has touched all our lives. We are all or will be changed by cancer at some time in our lives, whether it be ourselves or a loved one. I am so sorry for the Fuji family, please accept the deepest sympathies from the Eyes family.

Paul. October 22. 2007.

Recovery

Paul continues to recover well from surgery.  Both Dr K and Dr Henry are pleased with his progress.  He is walking alot of laps around the nurses unit.  We hope he can come home on Sunday.

Thank you again for all your love and support.  I ask that you keep all families dealing with cancer in your prayers this weekend.

Thanks Louise

Surgery today

Hi everybody,  Paul had his surgery today and all went well.  Dr. Henry was pleased with the outcome. He drained out 5.5 liters of fluid.  He had a good look around Paul's pleural space and thought it looked fine.
He did two biopsies and left in a chest tube.

Paul has some pain but I managed to convince him to take pain meds. He was told to walk by Dr. Henry and in true Paul style, he walked three times around the unit and felt dizzy.

He is back in bed and watching baseball.  I will update everyone tomorrow.

Thanks for everything.  Louise

Surgery tomorrow

Hi everyone, it's Louise with today's update.  Please don't expect me to write as well as Paul.  Paul was admitted to Howard County General today.  We met with Dr. K and Dr. Henry.  Dr. K is pleased with the PET results.  Dr Henry is a thoracic surgeon.  He was very nice and spent about 45 minutes with us.  Paul will have surgery tomorrow at 9:30am.  He will have a thorascopy and pleurodisis.  He will have a chest tube in for several days.  He will probably be in the hospital for 3 to 5 days.  Dr. Henry feels he can fix this problem.  Paul is in good spirits after the PET scan result.

I would like to take this opportunity to thank everyone.  Your love and generosity has been overwhelming.  We could not have made it this far without all of you.

I will update the blog tomorrow night when I get home.

"The PET scan is negative"

Yesterday I had my mid chemo treatment PET scan. The results are simply amazing/fantastic! On August 15th my scan showed extensive cancer all through my abdomen, around my spine, under my arms etc. That confirmed me as being at Stage 3b Lymphoma, and I was very sick.  Survival statistics for such a diagnosis are around 50%.

After my scan yesterday afternoon at 2pm we anxiously waited for a call from the Doctors office. The call came at 4pm. The radiologist report was read to me by one of the secretaries, the first words were "the PET scan is negative". This sounded very good news! I had the lady on the phone read the results three times! I could not fully comprehend what "negative" meant though!

I wanted to speak to Dr. K though to discuss the full meaning/interpretation. He called me and explained that this is the best news I could have at this stage, and that my PET scan showed "zero uptake", a technical term for the Lymphoma not being present on the scan. My response to the chemotherapy has been beyond reasonable expectations. It does not mean I am in remission, but I am headed that way. Dr.K is pleased, but still sees my lung complication as a serious  concern that needs to be addressed immediately.

By the time Dr. K called, Louise had already picked up my PET scan films. We could compare the scans of August and yesterday. The difference is amazing, and I hope to share these images with you next week when things have settled down. All the prayers and hopes are working, thanks to all.

If my reaction seems a little understated today, it is that my lung issue remains. My left lung space is 90% taken up by fluid. I am living on one lung. This morning I go into the hospital. I think today I will probably be having bloodwork and tests done, as well as meeting with the thoracic surgeon, Dr. Henry. I think it is most likely that I will end up having my surgery tomorrow, to evaluate, and hopefully fix the leaking of fluid into my left lung.

I woke up this morning at 5AM. A mix of nervousness and anticipation. After the scan yesterday I have an increased sense of purpose. IF my lung problem can be fixed, I have the beating of this. I still face this important surgery, and three rounds of chemo, and a period of up to 2 years when there is a chance that the Lymphoma can come back.  That said, I feel like I did that first day of chemo. Just lets get this thing done, bring it on! I am ready to kick some more cancer ass :-) There is more hope than fear, but I am ready for it today. Thanks again for all the support, prayers and thoughts. I know you are all with me and that is a great feeling, more than cancer, YOU have all changed my life, and you are helping to carry me through this time.

Paul. October 17. 2007.

   

Big Week.

First of all, we got back from England yesterday. Fantastic trip! The highlight was the wedding of Dave (my nephew) and Marie on Saturday. Just a great occasion all round. Second highlight was seeing Manchester City beat Middlesborough 3-1 with my son Tommy. City are still 3rd in the league, best start to a season in 30 years!

My brother Vincent, and his wife Linda, have come back with us for the next couple of weeks. It will be great to have them around to help with Louise and the kids. Before I left for the UK, I knew that this week would be important, and that has come true.

On our trip I knew that my lung space was filling up with fluid again. I had an x-ray this morning that confirmed this to be the case. I saw the oncologist this morning. He thinks we are at a crossroads right now. We really need to get to the bottom of this lung complication. The plan is  for me to have my PET scan tomorrow - so  that has been moved forward a day. The PET scan is important, as it will give a lot of detail about what is happening with my body right now. The effectiveness of the chemo to date can be evaluated, and also, there may be information that will help identify the source of the fluid build up in my lungs.

On Wednesday morning I will be admitted to Howard County General Hospital.  I will be having surgery to look at my left lung, drain the fluid in the pleural space, and hopefully seal the left lung to prevent further fluid build up. At this stage I can expect a 3-5 day hospitalization. That is the plan at present. Maybe there will be changes after the PET scan, you never know. One day at a time right now.

Paul. October 15. 2007.

Time to Regroup...

Well, it has been a busy week. I had been scheduled for my thoracentesis (lung drainage) this Wednesday. Over the weekend though, I felt I was getting more short of breath. So (as instructed by my oncologist), I decided to go into the ER on Monday morning to have it done early. After spending four hours in the ER I was sent home without having the procedure done! This despite the fact that my left lung was expanded to a quarter of the normal size. The reasoning being that I was not in too much distress, and there was no interventional radiologist available that day (nonsense by the way).

We ended up leaving the ER on Monday a little stunned. After calling Dr. K the wheels were set in motion, and an interventional radiologist magically appeared to do my procedure for Monday evening. This time 3.75 litres were removed. The Dr. said that there was still more fluid in there, but he could not draw any more off in one go. At the end of the procedure the lung is reinflating, it feels like you are taking your last breath at this time, so it was tough to get through, but I wanted the Dr. to get off as much fluid as possible.

My breathing felt better Tuesday, but I was concerned about whether the lung was reinflating. By Wednesday I was really worried that all may not be well. I was back at work on Wednesday, but frankly my mind was elsewhere. My thoughts were: "I wonder if the cytology results are in?" "I have to speak to Dr. K today!" " I am not sure this lung has re-expanded, what does that mean?" "Why does this fluid keep building up?" For the first time since getting  the news of my diagnosis I did not feel in control.

I ended up getting in to the oncologists office on Wednesday afternoon. Another chest X-Ray was taken at the hospital.  The x-ray showed that my lung was three quarters of the way expanded, and that there  was still some fluid at the bottom of the pleural space. Pretty much the same as Monday evening after the lung procedure. This was reassuring in that even though everything is not perfect with the lung, it was not any worse, and had responded to the Monday procedure.

In the background to all this activity I have been coming off chemotherapy, been on high dose steroids (which mess with your mind as much as your body!), and been worried that I may be prevented from going on a trip to see my folks in the UK next week. A long standing trip for a family wedding that has taken on added significance beacuse of my diagnosis and the desire to see my family there. My parents are in their mid 80s now and no longer travel, so this was my chance to see them.

With all the trips to the Onccologist, the visits to the ER, the X-rays at the hospital, the chemo, the steroids, the lung worries etc etc. I have not been at work much in the last week. This is also tough for me, as I try never to miss an opportunity to say that I love my job, and I love the kids at school. This week overwhelmed me though, and I just could not think about work. When I get back from the UK, I have a lot of Dr. visits, scans, evaluations, more chemo set up. So I am going to be very busy in the next 2 weeks. Dr. K really wants to get to the bottom of my lung complication. This may well mean a consult with a Thoracic surgeon and possible surgery in the next couple of weeks.

I have reached a point where I need to regroup, get back that control. I am going to take a break from work until we sort out the lung issue. I cannot see past that right now. I just need some time. Off to the UK today, so relieved to be going. Do not worry about me. I will be taking in a soccer game (Manchester City) on Sunday, going to the wedding of my nephew next Saturday, and eating a lot of comfort foods! Looking forward to it.

Paul. October 5. 2007.