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.

Charity Run

 

All is going well with me. My next scan should be in a month or so, but the main thing is I am feeling good. So good in fact that I have started running, and I am now planning to run the half marathon in Baltimore this fall. I have joined the amazing Team in Training folks to help raise money to fight blood cancers. You can see my fund raising page here. I started running about 2 miles a day back in April, now doing 3-4 miles each day and feeling good. 

Clean Scan Again

I had another PET scan last week. I saw Dr. K yesterday to get the confirmed results that all is clear. Counting back to my first clean scan in October 2007 that puts me at 16 months into remission. Great news. My scans have been every 4 months or so, th next one will be in 5 months. Typically a physician will lengthen the time between scans if they are clear.

I continue to feel very well physically. The period prior to a scan, and the period waiting for results is fraught with anxiety. A very difficult time. The news is good though, so it is time to celebrate. Thanks to all for checking in. My next scan will be in June or so. If I can get to the 2 year remission point it will be a  major step towards achieving a full and lasting recovery.It will be 4-5 years until I can say that I am "cured", but life is good.

Paul. February 10.2009.

Clean Scan

I just thought I would post for anyone still checking in. I had my latest PET scan this Thursday. My oncologist called today to let us know that all is clear. I think I can now safely say I have been in remission for a year. 2 years is a critical point for Lymphoma patients, as chances of recurrence - while still present - decrease rapidly. I am feeling great. I still frequently reflect back on what has happened to me, and I look back on where I was a year ago. At present I am really enjoying the school year and life in general.Thanks again to everyone for keeping me in their thoughts.

Paul. 10th October, 2008.

The Spleen is Clean...

Well, great news today. The final pathology report on my spleen is back. There is evidence of necrosis (tissue death) and damage from the chemotherapy, but most importantly there is NO evidence of Lymphoma.

It is difficult to over state the importance of this news to my overall recovery. I now know that I fall into a select group that has responded great to therapy. This is a key indicator to overall survival.

So there you have it. Time to enjoy the summer. No  scans or doctors visits until August/September. Life is good.

Paul. June 30. 2008.

Home...

I had my spleen removed last Friday at Howard County General Hospital. 2 hours in the OR. Dr. Parikh was the General Surgeon who did the deed. I have a 7 inch surgical scar to remind me daily of Dr. Parikh, he is a nice guy though :-)  My spleen was 3 times the size of a normal healthy spleen. It was heavily involved in my disease, and may have been the point of origin. It will be analyzed over the next week or so at Johns Hopkins Hospital, by their pathologists.

I should hear definitively  if there is any residual disease present by next Monday. That will be a defining moment in my  journey toward a full recovery. Basically if all is clear, I continue moving ahead and could consider myself in remission, conversely,  if disease is present. I face more chemotherapy, and a stem cell transplant process.

I did very well in the hospital. By Saturday most of the tubes had been removed. I was walking around the nursing station logging some laps. Dr. Parikh was so impressed by my progress that he mentioned on Saturday that I had a chance to go home Sunday. Not bad, considering that the normal hospital stay is 4-7 days for an open splenectomy ( large single abdominal incision which I had) and 2-4 days for a laprascopic procedure - usually a couple of small incisions -  which was not an option in my case. Sure enough, come Sunday afternoon I was on my way home.

I certainly have quite a bit of abdominal pain. I feel like I have gone a couple of rounds with Mike Tyson, the really good Mike Tyson when he was 17-20 years old! I am able to move around though, and I am taking the pain meds on a regular basis, and getting plenty of rest. It is so good to be home. Now it is just a waiting game until early next week when the pathology report will come in. Life is on hold until I get definitive word. I will just concentrate on my recovery in the meantime.

A number of people have asked the questions "What does the spleen do?"  "Do you really need a spleen?" Well, from what I have learned, it used to be much more common practice to remove the spleen.  Especially in cases of blunt trauma. However, in the last 10-20 years the spleen has been identified as playing a significant role in the immune system/response. So if it can be saved, doctors now try to save it.

Going forward I have to report even the slightest infection concern to my physician, such as a sore throat etc, and start antibiotics promptly. I received a vaccination against a type of pneumonia that could be dangerous to me without a spleen. I will likely wear a medicalert bracelet to indicate my status to emergency health professionals. I do not need to live my life in a bubble, and there is no reason why I cannot live a full and active life without a spleen. There are examples of many people out in the world doing just that, and I intend to join them!   I will post more next week when we hear about the pathology report.

Paul. June 24. 2008.

Going Under The Knife...

After a week or so of deliberation I have decided to have surgery to remove my Spleen (splenectomy) in a couple of weeks. I am scheduled to have the surgery June 20th at 1pm at Howard County General Hospital. Dr. Parikh will be the surgeon. I will likely be in the hospital for 4-7 days. My spleen has been biopsied before (In January) and was negative for disease. I have some residual metabolic activity in the spleen though, which is at the same level as January. It could be repair, local inflammation, or Lymphoma. My oncologist does not think I have active disease at this time. However, removing the spleen and studying it will be definitive.

I feel great right now, so that always gives me confidence. It is a little difficult to take a step backwards - by having surgery and spending the summer recovering - but I am hopeful that as a result we may be looking at clean scans in future, and possibly heading off any recurrence of the disease. Every Lymphoma patient has their own course to take, there are so many variables. After thinking it over, this seems to be the most logical step for me.

Before the surgery I need a full physical (next wednesday) and I will be vaccinated against Pneumococcal Pneumonia. I will likely wear a medical alert bracelet for the rest of my life to indicate I do not have a spleen to help me fight infection.

One good thing is that I have an incredibly busy 2 week period  that will prevent me from dwelling on the pending surrgery. I have to finish up the school year and clean up my classroom. Then on Thursday I fly to Austria to compete in the Table Soccer World Cup . I will be playing with 4 high schoolers I taught the game to. This will certainly be a highlight of the year for me! I return from Austria on June 18th, then under the knife on the 20th. Thanks to everyone for their good wishes and for keeping me in your thoughts.

Paul. June 7. 2008.

"Scanxiety"

"Scanxiety" is the term used by many cancer patients to describe the period immediately before and after a diagnostic scan, with the accompanying anxiety as one awaits the results and interpretation of the medical reports.

I had my last PET scan May 5th. I have been feeling great, looking good. I picked up my results, and written report May 6th, in readiness for my follow up oncology visit on May 9th. All seemed good with the report until the last sentence: "some activity in the spleen which is suspicious for active lymphoma...”

Well, you may be able to imagine the level of anxiety until my visit to see Dr. K. I felt transported in time back to last fall. It was a very difficult week. I know Louise found it very hard.

The May 9th appointment was very reassuring. Dr. K told me that he had reviewed the PET scan with 3 of his colleagues. The consensus was that I do not have active disease at this time. The spleen is a continuing concern. I had a biopsy earlier in the year, which proved negative for disease. So, the option came up, should the spleen be removed?

Removing the spleen would be definitive, as all the tissue could be evaluated. I have decided to see a surgeon with a view to having a splenectomy performed this summer. My appointment to see the surgeon is May 28th.

Having a splenectomy would entail a 2-4 day hospital stay. The spleen is a very vascular organ, so there is a risk of postoperative bleeding. The operation is not as straight forward as having your appendix out, but it is not uncommon. You can live a full and active life without a spleen, although in recent years the spleen has been shown to play a significant role in fighting infectious disease. As a precautionary measure, I would be vaccinated against Pneumococcal pneumonia before the operation.

I feel in good shape right now, and feel I could quickly recover. My mindset is to be aggressive. If there is any evidence of cancer in my body, and it could be removed safely, I want it out!

Best-case scenario is: splenectomy performed, all ensuing tissue biopsies are negative, and I continue my path as "No Evidence of Disease" - referred to as NED.

Worst-case scenario: Splenectomy, biopsy shows some active disease;  I start a different chemo protocol as a lead up to having a Stem Cell Transplant. A procedure where healthy cells are taken from my body. I get some heavy-duty chemo to "wipe the slate clean" of my cells, then I get my health cells transfused back into my body.

The "gut" feeling of Dr.K is that the spleen should be "clean". Never the less I am preparing myself for all eventualities. I keep telling myself how good I feel. I take some confidence from that. There is still some background anxiety though. This will likely reach a crescendo as we await the full biopsy results following the splenectomy. I would anticipate that this would be 7-10 days after the operation.

I am focused right now on taking care of myself. I need to eat and sleep well. Exercise a little. Get my body in good condition prior to the surgery, as I have some prep time. I am as determined as I was when I first received my diagnosis.

Thanks to all for keeping me in your thoughts.

Paul. May 24. 2008.

"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.