Time for a new post - Good News

I have not posted for quite a while because I have been waiting for my check-up to see what the results would be. Two weeks ago I had a CT scan and last week I met with my oncologist.

The results were good. I finished chemotherapy in August. Since then the situation has improved to the extent that I will not need any further therapy for the time being. I am in complete remission. Of course, this could change at any time, the type of lymphoma that I have has a habit of coming back, but who knows when. I did have the option of getting a maintenance treatment, but we decided not to have it as it gives the lymphoma the opportunity to become resistant to the main drug - Rituxin. We'll save this for later, with luck maybe we won't need it.

Meanwhile I feel well and have been very active - hair has grown back! I will be volunteering one day a week at Fox Chase Cancer Center and continuing with Logan Outfitters. I've gotten in plenty of fishing, although now with winter that is on hold, along with the golf. I have enjoyed golf - mainly the companionship aspects, but I hope to get a little better next year. I actually parred a couple of holes on a real 18 hole golf course - pretty exciting (for me).

I've attached a couple of pictures - one from last month fishing on Yellow Creek in central PA, another from the Delaware River last summer.

I've entered some of my pictures in contests, it will be interesting to see how I do. The one at left is one.

Family life has been good with Ben and Emma getting married next month and buying a house. Zach is interviewing for medical school and becoming an expert fly fisherman (which is most important?). Ellen is relieved with the medical news but is still my official Mother Hen and keeps a careful eye on me.

Regards for now, stay in touch!

Bob

I can't believe summer is almost over

It's been a great summer here in the Poconos, even with the trips back to Philly for chemotherapy. Now it's the 17th of August, summer has flown by.

I'm still doing OK, had what I hope will be the last treatment for a while a week ago today. As ususal, energy has been low but I've still managed to play (I use that term loosely) some golf and get in some short hikes. I love to wander around in the woods looking for butterflies willing to pose for my camera. Next week I'll be sneaking out for some late summer fishing up north.

Later this month I will get a combined CT/PET scan, that will show if the cancer is in remission or not. Keep those fingers crossed.

We're going to get out to Montana to see Zach in September and do a little fishing while we're there. We might even do some hiking or sightseeing!

We had some friends over for dinner - the theme was 'Comfort Food'. We made my Mom's 'Best Ever Meatloaf', and it was! Also Blueberry Peach Cobbler. Calorie counters were not permitted. I have dropped in some pix of Ellen and me with the results. There were no leftovers.

So life goes on, hope to see amny of you in the fall!

Summer Update

I have not been posting lately as things have not changed too much. Now there is a little good news. After the 4th treatment I had a CT scan, this was last Monday. The scan showed that 80% to 90% of the cancer is gone. This is a pretty good result. Since I have been feeling so well I was hoping for 100% remission, but that is unrealistic. I have two more treatments to go, the next one is this Friday. 3 weeks after the 6th treatment I'll get another CT scan and possibly a PET scan. I'm keeping my fingers crossed that the last two treatments will do the trick.

Meanwhile I continue to feel well. Following each treatment my energy level drops and then bounces back to pretty much normal. I'm staying active - fishing, biking, tennis - even dabbling in learning how to play golf! Summer in the Poconos is always wonderful, it's usually 10 to 15 degrees cooler than Philly and a lot more relaxing!

I have include a couple of pictures. One of my hobbies is butterfly photography, this is a picture of an American Lady butterfly shot near our cabin in the Poconos. The other is a picture I took last week while float fishing the West Branch of the Delaware River with my friend Art Bartholomew. The fishing was poor but the scenery and company made up for it.

Ellen is still my personal Florence Nightingale - makes sure I don't overdo things, eat the right food and generally live a healthy life style. Could not do without her! Ben is doing a fantastic job as the nature counselor at a local day camp, and Zach is almst finished his pre-med courses and will be taking the Medcats and applying to med school soon.

TTFN!

Bob

Lex Luthor Rides Again!

Well, I always wanted to be an arch-fiend, now Ellen says I look like Lex Luthor so I guess this is my big chance. I think a life of crime would be a lot more interesting than a career in the printing business. As long as Superman is not around to hamper me, world domination can't be to difficult. If a dummy like W can do so so mach damage, imagine what I can do!!!

Anyway, the hair seems to be growing back, so maybe I won't have to put up with this look too much longer. There is a gentler, kindlier me, here is what I look like when I am not criminally inclined. This blog program is terrible as far as layout goes, just throw in your pictures and see what happens.

I survived the third round of chemo without too much trouble, we're headed off to the Poconos this weekend for some relaxation. Ellen is done with school for the summer today, that's a big relief. I still feel well and have plenty of energy. Have not been fishing for a few days so I'm suffering a little withdrawal, but I'll get over that. By going fishing!

Regards to all, don't hesitate to give me a call or send me an email.

Whats new?

Today I'm at Fox Chase for the third round of chemotherapy. It's just about over, I'm on the last IV drip now. It's gone very smoothly, I actually slept through most of it. Must have been the Benadryl they gave me to start. Ellen is here grading her finals and making sure I drink plenty of liquid, whether I want it or not.

I still have not seen much in the way of side effects. One thing - I'm now bald as an egg- very chic. My hair was falling out and I got tired of vacuuming it off the pillow every morning. It was getting pretty spotty, so we just shaved it all off. Once I lose my tan line I'll include a picture.

Zach was in to visit for Memorial Day, we all went up to the Poconos and had a good time. We'll be heading up again next weekend - the fridge died and the new one is coming on Saturday. Hve to get in shape for bicycling, we're off to Pittsburgh for the July 4th weekend to visit Ellen's brother and will be riding 20 or 30 miles (on flat roads, I hope!).

Our garden, under the auspices of Ben, has been growing well. I'm supposed to stay away from dirt, so Ben has been delegated to take care of that and do the mowing as well. He just left for Colorado to visit his friend Rob Taylor. Ben got a full time job teaching at the school where he did his student teaching, so he's excited about that.


So, not too exciting an entry this time. I guess no excitement is good. After the next session 'll get a CT scan to see what progress there has been. Keep your fingers crossed.

Pocono Mountains, Ah Yes!

It's 7:30 AM and I'm sitting here at the computer, enjoying the morning quiet. Lots of people around but not too many up at this hour. It's hazy and cool, thermometer reads 59 degrees. Zach is in for the Memorial Day weekend and we decided to beat the warm weather and retreat up to the hills. Ben and Emma came along as well. Since Zach was not here for the holidays Ellen made a brisket last night with kasha, delish.

I love getting up early, making a pot of coffee, and relaxing until everyone else gets up, usually a fair amount later. On previous visits it still looked like winter up here, but now the trees are leafed out and all we can see is green. It's like - well it actually is - living in the middle of a forest. We can see one house from the screen porch and one from the driveway, that's all. And fortunately, those neighbors are almost never here.

Not much to report on the cancer front. Only a few tolerable reactions to the last chemo treatment. My hair is falling out, still have enough left to cover. I went on a fairly strenuous fishing trip last week - lots of wading, walking, climbing up and down steep banks, etc. and I had pretty much normal energy. Attached are pictures of a nice brown trout from the Lehigh river and my fishing pal Dan. Dan has been doing all the driving on these trips so I can reserve my energy for the fishing! He even lets me catch some trout!

Live From Fox Chase

Today I am at Fox Chase Hospital, getting my second dose of chemotherapy. I'm sitting in a comfy recliner in a large room with around 20 other patients. Right now I'm getting Rituxin (a monoclonal antibody) through an IV drip. This is the longest part of the treatment, it will take a few hours for the 600 CCs to drip in. Since you can have a strong allergic reaction to this drug they start it slowly and then speed it up. Then I get 3 more chemo drugs but that does not take as long. Since the first thing I got was 50 mls of benadryl, I'm moving a little slowly.

Ellen is here to keep an eye on me - nothing gets past her! She is grading papers to pass the time, watching an IV drip is not too exciting.

Everyone who works here is very nice, I am glad we selected this hospital. I feel better getting this treatment in a hospital as opposed to a doctor's office, and the staff really know their stuff. Of course, I'd rather be fishing!

Speaking of moving slowly, I think I'll stop here and take a nap!

3AM - Sleepless in Jenkintown

More a result of too much coffee than anything else, not sure if blogging is an aid to sleep or not. I guess I will find out.

Good news from the doctor - had a blood test Monday and he called on Tuesday to say that my white blood cell count had gone up b about 50%. This meant that I could go fishing again, also that the treatment appears to be going well. Notice the order I put those two thing in. At any rate, Ben and I got out on Thursday for some trout fishing in the Poconos. It was a beautiful spring day. The trees were just starting to leaf out - about two weeks behind Jenkintown where spring is in full swing. It was bright and sunny in the AM so the fishing was not too good, but it clouded up in the afternoon and then we caught some nice trout. All released to be caught again.

I was happy to be able to fish for an entire day, I'm starting to feel like my old self again - lots of energy and desire to get things done. This in contrast to February and March when all I could do was sit around the house or take naps. I hope I continue to feel this well as the chemotherapy continues. It's hard to beleive that you can fell so well and still be sick.

Ben has been working away at the gardens. He planted the butterfly garden today, tomorow the tomatoes and the peppers go in along with a variety of other vegeables. A large groundhog came by and ate the tops off all the young pea plants, so now there is a large cage trap waitng for him. If we capture him he will be transported to a state park a few miles away.

Otherwise, all is about as well as it can be expected to be. Next chemo session is this coming Friday. I'll be out fishing a few times before that!

One week and counting

Well, it's been one week since the chemo and I'm still cruising along. Last day for the prednisone was Wednesday - maybe there is still some floating around in the system. That's amazing stuff, all your little aches and pains go away, you have lots of energy (and appetite!!) and you feel good. That being said, support from friends and family seems even more vital - their love keeps your spirits up and your attitude positive. I'm feeling better than I have in months. I've also found that overloading my day with activities makes me a lot happier - I have too much to do to sit around and mope!
Ben has started my garden, since I can't play in the mud he is helping out. We're also planting a butterfly garden in a corner of the yard, we bought some native plants which are supposed to attract butterflies - pictures to come later in the summer. Since photographing butterflies is one of my hobbies, I'm hoping to get some shots right here at home.
We're going up to the Poconos this weekend - I can't fish due to possible contact with micro-organisms - but I'll go with Ben Saturday and friends Sunday, as long as I'm outside I'll be happy. Ben and Emma are coming too, maybe some pix of that too.

Post Chemo Update

It's been 3+ days since the chemo and things have been going very smoothly. Knock on wood!!! Aside from some swelling from liquid retention, which has pretty much gone away, I have not had any real reactions. Of course, right now I'm taking a huge daily dose of prednisone (100 mg) which has me buzzed with energy and flying along. The last dose is tomorrow, so Thursday or Friday I may crash big time. After hearing about all the horrible reactions you can have, it turns out that most people go through it fairly smoothly these days. You hear about all of the terrible stuff, which still can happen at any time, but usually it's not too bad. One day at a time.
Ben came over yesterday, he is done with school now and free till his summer job starts. He is a big help, cut the lawn, spread mulch and compost, did stuff I'm forbidden to do right now. He promised Emma (his girlfriend) that he'd trim his gigantic beard when school was done - we're waiting to see this happen. Emma and Ben are going to take over the garden this summer for me. Zach calls almost every day from Montana, I don't need to hear about the huge fish he is catching (and I'm not!). He is coming in Memorial Day. Ellen is relaxing a tiny bit, gets her glass of wine every evening whether she needs it or not! Florence Ellengale is her new name.
So that's all for now, stay in touch!

First day of Chemo

Today Ellen and I reported to the hospital for my first day of chemo. I'll be getting 6 to 8 treatments - one every 3 weeks or so based upon a number of factors. All I can say is, I hope they all go like this one. We got there at 7AM and waited while the first batch of drugs was mixed. The pharmacists don't prepare the drugs until you show up. By 8:30 I was seated in the infusion room and getting my pre-meds, which are given to reduce nausea and prevent allergic reactions. While this was going on our nurse gave us a lot of information and advice - she was most helpful. By 10AM I was getting rituxin. It took about 4 hours to infuse 600 CC's, they start it very slowly and then gradually increase the flow rate if you don't react. This drug is a mono-clonal antibody which hooks up with the cancer cells and kills them. Unfortunately it does the same for mature white blood cells. After this I received 3 more infusions of chemo drugs and was finished by 3:oo. Tomorrow I get a shot of Neulasta to pep up white cell production. So chemo was 6 hours of sitting in a chair while the I.V. dripped, reading, doing crosswords and eating. I just hope the other sessions go as smoothly!
Ellen was there the whole time, handing out food and drinks - she is definitely the support arm of this operation. At the end of the day I think she was more tired than me. Now that we have a schedule and things are happening she can relax a little.
Now we're hoping that most of the many side effects will not materialize, but that is a wait and see. I seem to have a drug for all the situations.
I also got out for two days of fishing with Dan this week, but as trout streams are the opposite of distilled water, looks like fishing will be off limits until I have a good white cell count.

A visit to the Doctor

On Friday we went to Fox Chase to meet with Dr. M, who is directing my care, He spent an hour+ with us, asking questions, doing an exam, then reviewing the diagnosis and the treatment alternatives. As I previously noted, it looks like slow growth follicular lymphoma. However there are some confusing signals as an earlier core biopsy showed cells indicating a more aggressive type of cancer - and it is possible for the slow growth to change to aggressive. Our decision is to go with r-chop, which is an aggressive chemo regimen. It's a better safe than sorry decision, which I am comfortable. This will start Friday the 27th and go on everey three weeks for 6 to 8 weeks. You can watch this page for pictures of 'Bob the bald' as I will most likely lose all my hair. It should grow back, but could be a different color and texture. Blond and curly, anyone? I may be without my protective mustache for the first time in 40 years. Ellen will finally get to see the big purple wart om my upper lip (that's a joke).
Otherwise, I feel better than I have in a while - have been much more active, getting some exercise and fresh air, no fishing yet but my friend Dan and I have been out scouting the waters!! Had a nice visit with my sister Susan and my brother in law Brian, went out to eat, etc.
Thanks to all who have called and sent cards. I really love to hear from people and hope to see you all one of these days. I especially appreciate Ellen and the boys, and all the health care professionals who have done a great job.

Best wishes,

Bob

Getting There

Today was a day of follow-up. Visit the surgeon to check my progress after the back to back biopsies. Get an ultrasound of my legs to make sure I don't have any blood clots. Chase down my pathology slides, which were going to the wrong hospital, get them to take to right hospital. A lady called me on my phone and asked if I was Sovereign Bank? the security guard at one hospital asked me if I was a biopsy? I think I'm still me. Tomorrow looks like a lighter day, just one visit to Fox Chase to deliver the slides. If their pathologist is OK with them and concurs on the diagnosis then we can get started on some treatment. Navigating through the medical system is not easy, you have to ask, ask and ask. No is not an acceptable answer. But be nice at the same time.

Ellen rode downtown with me to Temple to get the slides, then we went out to dinner, I even had a Guiness! High times! At least I have a good excuse to eat red meat - need the iron.

A Diagnosis

Looks like the lymphoma I have is called 'low-grade lymphoma'. This is a slow growing lymphoma that can be retarded by chemo, but is not curable except by a donor bone marrow transplant. It normally shows up in older patients, life expectancy is 10 - 15 years. At this point I'll be getting chemo, the BMT is off on the horizon somewhere. I'm glad we went through all of the biopsies - painful but we do have a result. Dr. G was very vigilant and pushed to have this done, as our other Dr. was out with a family emergency, this kept everything going so we did not lose any time. Supposedly this chemo is not as toxic as the other ones, and there are some different options which we will be learning about. The pathology report was done at Temple U Hospital, now Fox Chase will review their results and the treatment will start.
Ellen got to go to work today, that makes two days in a row. She has been a great help!

First Post

I have spent a lot of time talking with friends and family about my ongoing (hopefully finalized soon) lymphoma diagnosis. I thought it would be useful to all if I created a blog so anyone interested could check in and see how I'm doing, what's going on, etc.

This week I had two biopsies, the first was not a success but the second, after 3.5 hours on the table, produced two nodes the pathologists can use. After all that surgery I'm feeling like the tomato in the Vegamatic commercial - sliced and diced! But we're hoping we'll get the final diagnosis soon and get going with treatment. I'll be going to the Fox Chase Cancer Center for treatment. It's a world famous hospital, and only 10 minutes from home. So far I've been blessed with some great doctors and nurses who have been fantastic. As things happen, I will be keeping you posted.

Ellen has been wonderful - she just can't do enough. I'm so lucky to have her by my side.