A Care Page for Paul Eyes

My Care Page

Dear Family & Friends,

This is a place to come and check on my status and leave messages for me if you wish. At the beginning of August 2007 I received the news that I have cancer. My diagnosis is that I have Non-Hodgknins Lymphoma. To be specific it is a Diffuse Aggressive Large B Cell type Lymphoma that at this stage has been found in lymph nodes all over my body and in my spleen. When diagnosed the the disease was at Stage III (out of IV). I started my Chemotherapy on August 17th. I will receive from 6-8 chemotherapy treatments every 21 days. In mid October I will have a scan taken that will give me a good idea of my progress.

I have many wonderful and supportive family members and friends. I like the idea of a care page as a way to hear from those that care about me. Having a serious disease changes the dynamic of how we relate to each other. People do not know what to say, maybe I do not want to talk about my condition on a particular day, so please feel free to use the comments section. I hope this blog will help to overcome this awkwardness, you can stay informed and I can feel the wonderful support that has already been forthcoming from friends and family.

Paul. August 13. 2007.

Updated August 18. 2007.

"You Look Good"

I had a CT Scan this week. Saw Dr. K on Friday. Good news. My abdomen, chest and pelvis show no sign of disease. My last scan a month ago showed 3 (most likely benign) lesions in the Spleen. Last time they were 4.5cm, 3 cm, and 2.5cm in size. This time they are 4,2.5 and 2cm. So getting smaller, most likely repairing tissue.

My next scan will be in 2 months time, and it will be a PET/CT Scan. So the tests are getting a little further apart. I feel great. People keep telling me "You look good". I have a full head of hair now. It is getting a little darker. I may even get it cut in a week or so!

I was pressing the Dr. on Friday about my status.  "Am I in remission?" He describes me as doing very well, with a "great response" to chemo. The word remission is not used. Dr. K said that I should remember that "something went wrong" with my body. I am still at risk for relapse, and that will be part of my daily thoughts/life for at least the next 2 years. That is life with Non-Hodgkins Lymphoma.

Lymphoma patients tend to use the term No Evidence of Disease, or commonly the acronym NED. I have probably been NED since October/November.

I do not worry too much though. The scans are the worst, but this week I was pretty calm about everything. Louise was more nervous I know. I have been enjoying life. I took the kids skiing a few weeks ago, and took Tommy again a couple of weeks ago. I certainly enjoy time and activities with the kids more than ever. These times are precious, but I have a greater perspective on that since diagnosis.

Thanks as always for keeping me in your thoughts.

Paul. March 9. 2008.

Good News

The biopsy came back as being scar tissue. No evidence of cancer. There is some evidence that there has been some bleeding around the spleen. Dr.K says the bleeding could just be from repair or death of tissue in the spleen, which was heavily diseased. The plan now is to see the oncologist in two weeks, then have another PET scan in about five weeks. Dr. K stated that he will be watching me very closely, but overall the news about the biopsy is very very good indeed. There is no further chemotherapy planned at this stage.

The last week has been a very anxious time as the outlook/statistics for patients still having disease after 6 chemotherapy treatments is not good. So there is a huge sense of relief at the news. Life has been on hold, but now I have a sense that I can cautiously look ahead again. I am told though that a regular feature of the coming months will be anxiety as scan dates approach. For the next year I will have PET scans every 3 moths, then it is usually every 6 months for another year, before graduating to one scan every year for another 3 years. My type of lymphoma has a high relapse rate so I face years of monitoring. 

I went to the UK for a quick 4 day visit over MLK weekend. Everyone remarked that I looked a lot better than on my last visit in October. My hair is coming in now (a lot of grey and white!) and I am also getting some improved sensation in my fingers and toes, which have been numb and tingling as a result of one of the chemotherapy drugs. I am also back to my normal weight. On the trip to England I went to see my beloved Manchester City play over the weekend with Tommy, my 8 year old. A 1-1 tie, not a great game, but it just felt good to share the experience with my son. Life is good.

Paul. January 22. 2008.

Spleen Biopsy

My last post mentioned that my PET scan had been somewhat inconclusive. My spleen is still an area of concern. As a result I had a CT scan last wednesday. The results showed a mass of 4cm present in the spleen. This is greatly reduced from the 10+ cm mass that was present in August. However, it is not known whether the remaining mass is made up of cancerous cells, or whether it is just scar tissue. Therefore I will be having a biopsy of the spleen this week. I will then face an anxious wait of 7-10 days for the results. Obviously decisions on any future treatment will hinge on the outcome of the biopsy. I hope to hear about the scheduled date of the biopsy today.

Other than some natural anxiety about my status, I am feeling very well. My weight is now back to normal. I have no pain, and I am following a normal, active schedule. Thanks to all for keeping me in your thoughts.

Paul. January 14th. 2008.

p.s. Spleen biopsy scheduled for Tuesday morning. I will be at the hospital for most of the day and should know the results Tuesday of next week.

Quick Update...

I know a number of people have been checking in to see if any news of my scan this week. Just to let you know that a lot is up in the air right now. My midweek scan showed improvement but was not "squeeky clean" so to speak. As a result, Dr. K is seeking the opinions of a number of his colleagues as to what the next step will be. No point speculating at this time. I will be getting together with Dr. K on Monday to go over the plan.

On the bright side I am feeling very good. I asked today what my chances of surviving are. I was told around 70%. Dr. K told me at diagnosis that I was probably around the 40% mark. So I have come a long way in a few short months. Will post more at he beginning of next week...

In the News!

We got quite a surprise last week.  Louise was reading our local paper, when she almost jumped out of her seat as she saw that I was the subject of the weekly Opinion column! You can see the article here. Many thanks to the Tillman family, and to our friend Doug Miller for that. I have been the subject of so many random acts of kindness in recent months, and this was yet another example.

Eleven days post chemo #6 as I write. Took a little longer to recover from this one. My white cell counts went down to 300 at one stage, a very low number apparently. I certainly felt more fatigued this go around. On top of that the holiday schedule is in full swing, so it has been difficult to get enough rest, but every day further out is an improvement.

At present I do not have Chemo #7 scheduled. I am due to have a PET scan on January 2nd. I will then meet with Dr. K on January 4th. It will be decided then whether I will be getting more chemo. If the scan is clear there is every chance that I may be done with the chemotherapy. No popping champagne corks though at this time in the Eyes household. I have to be prepared for the fact that I may, or may not, need more treatment. I am just going to enjoy the Holiday season with the family.

Just a few days of school left until the winter break now. All the best to you and yours, and thanks again to all for your wonderful support.

Paul. December 18. 2007.

Chemo #6

First of all, apologies for not writing in a while! I have been doing well. A lot of my time in the last two weeks has been taken up by my crazy table soccer hobby. I just hosted a tournament at the school with 76 players playing. This included visitors from 13 different states, plus Canada. I had a great time, and it was great to see so many of my friends, as this is a big social outlet for me. $1300 was raised for Leukemia and Lymphoma research at the event.

On the medical front I have continued to do well. I have put on a few pounds, and am now maybe just 10 pounds or so short of my "fighting weight". My energy level has been excellent. In no time at all my 6th cycle of chemo is upon me. I will be receiving #6 tomorrow morning.

I saw Dr. Kouteralakos on Wednesday. My question for a while now has been whether I will be receiving 6 or 8 doses. As things stand it is more likely to be 6, but 8 cannot be ruled out.  I am not currently scheduled for #7. I will have a PET scan the first week in January. The outcome of that will determine whether I get the other two cycles. Dr. K is impressed with my physical progress though, so we are all hopeful.

At my appointment on Wednesday the doctor also talked about the next few months. Apparently one of the biggest mental hurdles is coming off the chemotherapy. All of a sudden you feel that the disease is not being actively fought, this can be difficult to deal with. Also the emotional impact of what the patient has experienced can really come home several months after the chemotherapy finishes. Whether I get 6 or 8 doses, I will face several years of follow up. My type of Lymphoma has a 30% relapse rate within two years. I will be having scans every 3 months for a year or so, then every 6 months etc. Like everything else, just got to take it all a day at a time. I mentioned to my friends this past weekend that I am doing as well as can be possibly expected at this time in my course, you really cannot ask for more than that.

Paul

Running for Lymphoma Research

A great big thank you goes out to two friends today. Bill Wheatley- Heckman and Kathy Bernetti. Bill completed the Philadelphia marathon yesterday in an impressive 3 hrs 25 minujtes. Last month Kathy Bernetti ran the Baltimore half marathon I believe. Through their incredible efforts and kindness they have raised almost $6,000 for lymphoma and leukemia research. I am humbled that they were spurred on to do this by my diagnosis this year.

Thank you to all who sent in contributions. I believe Bill still has the info up on his entries with instructions for anyone else who may wish to send in a contribution after the event. You have both been inspirational to me through your efforts, thanks from the bottom of my heart. Bill made a point of saving notes that accompanied the checks as they came in and sending them on to me. They are treasures, I have read and kept them all.

Paul.  November 11. 2007.

Chemo #5 Coming Up....

I will be getting my 5th round of chemotherapy this coming Friday. I am still doing very well. Last week I returned to work. I was certainly tired at the end of the first day, but I picked up as the week went on. My stamina is vastly improved over any previous time in recent months. I am taking time to rest in the afternoon, but other than that I am zipping around and being pretty productive. I take nothing for  pain now. I have not been able to say that for a year.

It has been good to see the kids at school. The 6th graders made me a giant get well card. They all signed it at their lunch, and it is taking pride of place in my room. The kids have been very caring and concerned about me. That is very touching, because at their stage in life (age 11/12) developmentally they are generally very wrapped up in their own little world. I have been surprised and moved by many of the kids reactions this year at school.

I am working on trying to put on some weight. Hard work I know, but someone has to do it :-) I got down to 160lb shortly after my surgery, about 25lbs or so below my norm. I know I am getting physically stronger, but I will be happier when I put a few more pounds on. I am eating very well though, and  eating snacks in between meals.

I am still hoping that it will just be the 6 total chemo treatments for me. You may think it would be better to get 8 "just in case". The only concern there is that some of the side effects of the drugs are cumulative, and you really only want to get exposed to as much as you need. Adriamycin is one of the chemo drugs, nasty stuff,  this can cause some cardiac problems if too much is received during therapy.

Come December I will bottom out on the side effects of the chemo.  The hair is pretty much gone already, as are the eyelashes. The eyebrows are on the way out. I mentioned the weight, but I think I may be on the rebound already there. I have also lost sensation in the ends of my fingers (does not help with my table soccer playing!) and my toes - another side effect of adriamycin.  I honestly do not care too much about any of it. It is good to be alive. Sure, I want the chemo to be done, and I am hoping it is just 25 days to go until I am finished, but if I need more I will quickly regroup.  I know I am doing well at the moment, getting stronger by the day.

Paul. November 12. 2007.

Feeling Good

It has been a good week. I saw the surgeon who did my lung surgery on Friday. I had my sutures removed. A chest x-ray showed that the left lung is in good shape. I am really feeling good as a result. In fact, I would say that I am feeling as good now as at any time in recent months. Certainly since before my diagnosis in August.

I have been on a couple of walks of 2-3 miles without any problems in recent days. I was driving around in midweek and I had this feeling of just feeling "normal". I just felt good. If I listen to my body, it is telling me good things right now.

On Friday I went back to work. Apart from taking off a day for my chemotherapy, I see no reason why I cannot work full time. It will be good to get back into a routine. Right now it is uncertain as to whether I will be getting 6 or 8 chemotherapy treatments. That will be decided in December. I am hopeful that it will just be the 6. That would mean I could have my last treatment on December 7th. Just 33 days away :-) If I need the full 8 then so be it, but I cannot stop myself engaging in a countdown at this stage.

I also had an appointment this week with Adam, the PA at the oncology office. My lab values are all good and everyone seems happy with my progress. I am anticipating that I will have another PET scan just before Christmas. That will be crucial, but I am very hopeful after the negative scan in October. If anything at the moment, I am just trying to not get too carried away with all the good news. There can always be twists in the road, but I cannot deny to myself that I am feeling good and strong right now.

Paul. November 4. 2007.

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!