melanoma warrior

Still around

2009-04-03T10:12:00.000-07:00

HA!!! since Chris never writes, I will. All looks good. Chris visits NIH every 3 months or so. The last 2 very deep tumors are gone...so he is all clear. Kaiser doctor says he looks healthy now.
Lucky is fine but her age is catching up. She's 13 and won't go it a dark room anymore. Lights have to be on. Chris is really really spoiling her...she eats left over food now, and Chris makes sure she gets egg, sausage and toast on the weekend. She also licks the bowl clean from whatever Chris has for dinner. I say not to do it so he waits till I leave the room. Both looking forward to the warm weather and some bike rides! So nothing is really new here :)

2008-02-17T17:59:00.000-08:00

It's mid February. I went into NIH last Monday and Tuesday. The Dr's say they can now say they have successfully treated me for melanoma. The tumors they took out are definitely negative. The CT scans last Monday show that the tumors that are deep by my hearing canal are smaller now than in December. They are now saying it appears that the tumors have become benign and are being absorbed by my body, much like scar tissue. Benign? Negative for Melanoma? Smaller? Absorption? It was good to be hearing that the only word they didn't use was Remission. I do believe that is the next word to follow. Work is going well and it looks like Naples and New Delhi are coming very soon after my trip to Costa Rica. I'm looking forward to that. So Next time I'm scheduled back to NIH is 2-3 months. Hear that???!!!!! Observation in 2-3 months. Wooo Hooo!!!

2008-01-13T15:37:00.000-08:00

I have been so bad. Molly was right: It seems like anyone treating you for Melanoma never gives you all the news. We've figured out that there is so little good news they don't want to give you all of the bad news. Well, HEAR THIS: We have GOOD NEWS. December 14 they did surgery to determine if the tumors contained Melanoma. The tumors shrank to pin-head size, but they didn't go away. What Molly was saying was that NIH told us at first there were 2 tumors, then admited there were 3 and at the end of the discussion, we found out there were 4 tumors total that they could see. Anyway they were afraid of doing a biopsy on them because the biopsy can spread the melanoma, making it worse. So they went in and cut out the tumors and did the biopsy in the lab. The tumors were NEGATIVE FOR MELANOMA. This means the growths have been reduced as small as they are going to get and have been turned into scar tissue. Most likely, they will leave the two tumors deep by my hearing canal. So now we move onto the bucket list. I am planning to do some things before I kick the bucket. The last of February, I am heading to Costa Rica to go on an ECO-Tour. I have always wanted to do one of those excursions where they put you in a repelling harness, snap you onto a 2 mile cable and send you through the canopy of the rain-forest. I am fascinated by hummingbirds, whales, frogs, volcanoes, scuba diving trips, white water rafting and Costa Rica has it all. HOOORAH!

Chris

12/6/07

2007-12-07T07:33:00.000-08:00

Molly here....Another update....they found 2 deep tumors when they went in...not 1. so now we wait for the results of the biopsies on the 2 removed. One of the newly discovered ones is very close to the ear canal. I told the doctor our house was already designed for the deaf, but some how he thought I was just weird. Can u imagine that?

They lied...9pm 12/4/07

2007-12-04T17:40:00.000-08:00

Just a short summary of the day....there are not 2 tumors there are 3 :( the 3rd one is deep and close to the ear canal. They will take out 2 free floating ones tmr and leave the 3rd. Once they study to 2 they removed we will have a better idea of what the 3rd one contains and what to do....in a month they can also run a scan see if it glows :)

December update

2007-11-30T18:27:00.000-08:00

Folks and family: Well it appears the last two tumors don't want to leave. They each have shrunk to the size of a pin head. They were the size of a marble, last year so the treatment is working and they have not come back. The tumors have not attached themselves to any muscle or anything...they appear to be freefloating. So next WED (05 DEC 07) they are going to excise them in a minor surgery. Molly is going to be there for the surgery. Dr. Yang says Melanoma does not play fair, so there is no reason to play fair with it.

More good news

2007-08-28T17:28:00.000-07:00

While it's not complete closure to my treatment protocol, it continues to go in the direction we want. NIH did CT scans, MRI's and blood chemistries this week. The blood levels were exactly where they want them. The 8 lower tumors are gone. There are two that remain, but they have lost their definition and thickness, meaning the tumors are deteriorating and have gotten another 40-50% smaller and thinner from last month. The last two tumors are no longer attached to the underlying tissue. So let's re-cap the issues: The other 8 have dissappeared completely, the last 2 are getting much smaller both in width and depth, the exterior of those is breaking down, my energy level is coming back at a realatively high level, and my weight has come back to about 85-90% of what it was before treatment. I think, and more importantly the Dr's think this is now under control. The pain level on the vast majority of days is well under control. It's just going to take a little longer. Now I'm OK with this. Chris

2007-07-28T17:36:00.000-07:00

Sorry for not posting before now. Mon and Tues last week were pretty hektic. NIH did a CT Scan and some blood-work. All blood-work came out OK and now the CT Scan shows that the entire mass has shrunk by 50%. The tumors have now lost their definition, meaning they aren't hard any more. The NIH team says that my recovery has been the fastest that they've seen in the protocol. Even though I look like Mr. Clean, I have to shave now to get that look. It kind of hides the big patch where no hair grows anyway. That seems to be the style now, so no one seems to be shocked when they see me. Hope you liked the photo Molly put on the last posting. We are starting to get a little better at the blog.

2007-07-15T15:26:00.000-07:00

Well folks it keeps getting better. The last 4 tumors ARE getting softer and smaller. Of course I want them to go away yesterday, but this thing appears to be on its own time table. Last week it was back to work for the entire week. OK, so I bagged the last 4 hours on Friday, but I was capable of that on any given week. St. Louis is leading their division, so what's not to like. This week we are sending Molly to Las Vegas with her friend to see Barry Manilow and two of my roommates from college are coming out for a visit. I worked, cleaning up the entire back yard on Saturday. It was early in the morning, but as we figured it, when my pants kept falling off, it was time to quit and come in.

2007-07-04T09:12:00.000-07:00

Back to work by the 4th of July? Granted that it's not full steam ahead, but it feels good to get out and get back on with my life. I never felt getting back to work would feel so good, but it's like a second chance at life. While the tumors have not totally gone, they are shrinking on a daily basis. We'll see what the tests come up with on 23-24 JUL, the next time we go for a CT Scan. That will be the 2 month mark, when the NIH Dr's say it's their experience for peak time for the tumors reduce, totally. Chris

Road to recovery

2007-06-26T12:26:00.000-07:00

Now this posting finds me in better shape. I've been out and about with Molly's help. Long stretches at a couple of different malls. It was tiring, but the controlled conditions allowed me to push on and get some much needed excercise and change of scenery. The Dr's at NIH confirmed the tumors are shrinking. We've noticed an even greater shrinkage over the last couple of days. To the people who have been praying for my recovery, it's coming and the vast number of prayers said on my behalf have not gone in vain or unnoticed. Thanks to all my friends and family. After the last one, this week is coming along nicely and just waiting for my hair to grow back in; just kidding. The pain is leaving, the tumors are getting smaller daily, and my energy level is coming back. Thanks for all your thoughts and prayers. Chris

2007-06-21T06:36:00.000-07:00

Well yesterday was no walk in the park. We started out with an Apheresis, flitering my blood. I spiked a 102F temp and everyone got real anxious over that. Then I did MRI, CT scan, and Occular appointment, where they dialated my eyes. NIH is thorough, I got to hand it to them. So they determined that something was wrong with the catheter and it could have been infected, so they had it taken out. Well it took about 2 hours to cut it out, with a pint or so of Lydocaine. So I started out at 7A and didn't leave until 7P. The Dr. who pulled the Catheter said he looked at the MRI's they took yesterday and there was a definite reduction in the size of the tumors. The downside is it feels like I've been shot in the chest with a 22; man is that sore. Well this afternoon, we go in and review all the tests we did yesterday and compare them all to previous tests and see what the next steps are, if there are any next steps. It took me 6 months to get this way, and will probably take me 6 months to get rid of all of it. Here goes nothing.

2007-06-12T17:37:00.000-07:00

One week is behind me from having been released from NIH. There have been some great strides. You know, behind every great man, there is a great woman ...with a huge butcher knife. So diner had better be on when she arrives at home. Just kidding folks, getting Mollly something ready, as she's almost at teaching year's end is exhausted herself. The taste buds are still out of whack. Cherries started to taste bad, stopped right there and said this is a taste you enjoy, so keep eating; and pretty soon they started to taste better. As for the weight loss program, we should get our money back. See if we ever recommend this to anyone. Ha! Went from 215 down to 180 and feeling there may be another 5 lb more to lose.

2007-06-10T14:41:00.000-07:00

It has been 5 days at home and I've never been so joyous to be somewhere as home. Saturday, Molly took me to an Arts and Crafts Festival over in W. VA. What a spectacular day. I walked up the hill to a tent with picnic tables and let her walk while I sat under the big to tent and allowed the breeze flow over me. Molly waited for me to finish the hill, where we discovered that standing for long periods is just not possible, but walking is OK. My signature now is a big billed hat, walking cane, compact back pack, sandals and Sunscreen, UVA/B.

2007-06-06T06:00:00.000-07:00

YOOHOO! The Dr's came by today and said there was no reason I could not leave NIH today, so long as I was willing to take it easy and adhere to their requirements. Of course I return in 2 weeks for a thorough exam with apheresis, MRI, CT Scans, and X-ray. I can do that; Fuzzy Wuzzy escapes NIH. I have not noticed a dramatic reduction in the size of the tumor for now, but the intense pain has dramatically reduced, to which I am so grateful. It got to a point that I could not concentrate at all without being heavily medicated. I am so happy today that I will be able to get that hospital smell out of my nose.

2007-06-04T19:13:00.000-07:00

It's one step forward and one back; I've done worse. I saw the glimpse of the light at the end of the tunnel and it was not an oncoming train. Sunday, they unplugged me all day and walked the confines of NIH. Molly's been bringing decent food; however singing Fuzzy Wuzzy Was a Bear was not kind and we both laughed. Yes folks the hair is going rapidly. The mustache is gone and cutting my hair before this started was a blessing. Having clumps of hair would be most unsettling; rubbing fuzz off the top seems to be OK. They gave me 2 units of blood today, which knocks me out for 24 hrs. Platelets seem to holding steady. They are talking Friday at the latest for departure from NIH...maybe.

2007-06-01T09:13:00.000-07:00

NIH is a really nice place. I can see this courtyard from my room. Yesterday, they sent me down for a chest X-ray. It was just before giving me a couple of units of blood and I escaped. The door opened so easily, the courtyard is mostly shade with beautiful plants surrounding you and a slow moving water fountain. The plants had just been watered and it was in the cool part of the day. I just took in the smell of being outside of the hospital. That helps with the lack of taste and smell; re-booting the system. They gave me a couple of units of whole blood and plateletes daily; again, re-booting the system.

2007-05-29T04:45:00.000-07:00

OK Well it's time to get up an take care of some business. I am what they term Neutropeonic, which means I'm low on neutrophills, the WBC that goes after the more common bacterias, and light stuff. So that means It feels like I have the flu or some mild food poisoning for the time. I also am very low on platelets, which we knew would happen. Most likely what that means is they have some transfusions in store for me if it does not turn around. They said that is pretty common, and not to worry about it, that these are all pretty much symptoms they's seen on successful patients. Hope everyone had a nice Holiday weekend. Thanks for all the prayers and thoughts I've received by using this blog. Sincerely, Chris

2007-05-27T05:31:00.000-07:00

Well, I'm nearly at the end of this treatment. They've hit me with Chemo, Total Body Radiation, Have administered the TIL Cells, administered the Stem Cells, and now I'm receiving the Inerluken-2. Last night at about 12:00 after they gave me the 5th dose of IL-2, I had the shakes. At first it was mild, then the entire bed was shaking and walking. They got a fix for everything; a little Demerol, and I was good as new. What they are looking for is a sign of confusion with IL-2. That means my body is generating toxins, such as out of the kidneys that they pull me off the procedure. It's not as bad this time, for some reason; the affects don't seem to be so severe they tell me because my Immune System is shut down. I have noticed that for one reason or another the searing pain with these tumors is already subsiding. There is hope here. Molly went to a party with one of her workers who just achieved his PhD. She brought some chicken and noodles from the party. Wow that was good. It has been so long since I've had anything that tasted like food that I was surprised I still had taste buds. Chris

2007-05-23T10:32:00.000-07:00

Well I'm half way thru the Radiation process now and as I told Carrie Quigley, a good friend of ours, who just stopped by that it feels like Hannibals 7th Division of Elephants have just marched through my mouth. I have them stumped however, Molly has come by every evening and they have given me a pass to go out and eat...or walk. Molly has been so supportive in helping me get out, which has made my out look so upbeat. She comes early in the morning on her way to work and then stops by in the evening and we will go get a bite to eatand walk around. Hospital food. Yuuuugggcch!

2007-05-21T13:44:00.000-07:00

Well today I finally felt better. They unplugged me from Dorothy, my infusion bag holder. Then they gave me a drug that makes my stomach feel better. No I don't like praying to the porcelain God. I took a walk on campus and got outside of the hospital for a while. That got the Dr.s and Nurses all excited for a while, but they understood it and were OK with it. Molly visits me a couple of times a day and goes to work in the middle. That keeps her mind on something else. I know this is driving her crazy, and it's hard on everyone. Anyway, tomorrow we start on Radation. They tatooed (just kidding they used a sharpie) my chest with the outline of my lungs, where they protect that tissue, as it only gets half the dose of other parts of the body.

Started

2007-05-21T09:19:00.000-07:00

They started the chemo on Friday night. The first 2 treatments were big ones. The next 3 will be smaller, but the last one overlaps with two radiation. I don't want to mention it but he did see McDonald french fries floating around Friday night. He feels better today so hopefully he may blog for himself. He says he will be working on line today..we'll see. The fun part for me is that I get to wear rubber gloves all the time. At least we are not to a mask yet. The gloves are funky...you can't change the TV channel with them on...now, that is bad! For your future information, the purple ones are a lot more comfy then the flesh ones...those suckers stick to the skin. Saturday after making a fast inventory of the area I found a chair! First walk thru the rooms were all full and they have only three comfortable chairs on the ward. HA! Second search I found someone had been let out, and they had the good chair in the room! Yes I grabbed it and pushed it to Chris' room. Very big and comfy, it even folds out to a bed! Now that makes the 5 hour visits more comfy. Chris isn't eating of course, but if you tasted the food there you would understand....it really is bad. So while you are writing Congress to increase the funds for medical research, please mention food too :)

2007-05-17T05:54:00.000-07:00

Here we go. It's 17 MAY 07 and NIH is pulling me in to start a very successful Melanoma treatment. Specifically the protocol they have me in is 06-C-0136 for those of you with an obsurd sence of curiosity. NIH is very good about putting details on their Web site at www.cancer.gov. They removed a tumor from my neck a couple of weeks ago, grew it in the lab and have been harvesting a specific White Blood Cell that attacks tumors (TIL Cells). The next step is to shut down my immune system via Chemo and Radiation so when they introduce the TIL cells there is no interference. Then they restart my immune system, by introducing Stem cells, collected a few weeks ago. Then they give me Interlukin-2 and a couple of other things to kick-start the immune system. The treatment should take 3 weeks and recovery time is about 3 months. So much for a summer of riding our motorcycles.

Going in!!

2007-05-15T09:15:00.000-07:00

Since Chris is so slow writing his blog I will write today :) They have enough TIL cells to start the procedure. He will go in Thursday late and they will start his chemo on Friday. We are happy they have enough cells, finally. He was in there on the May 2nd and 3rd being prepped for the treatment, but Friday they decided not to start because they didn't have enough cells. This is a one shot thing....He will be in three weeks receiving chemo, radiation, TIL cells and Interlueken 2, and starting recovery. This is his second round of Interlueken.
I am working on making it comfy when he comes home in three weeks. We bought a nice lounge chair for the back porch last night. You know Chris loves to sit outside, so chair and fan are ready.

2007-05-07T07:16:00.000-07:00

This is my first blog and an easy way to keep everyone in touch. Things change so fast at NIH it's impossible to let everyone know all the plans. Melanoma is a disease that just keeps on giving. The good thing is that only 8,000 people this year will be diagnosed with it. NIH is one of the best resources in the world for Melanoma. Early detection is still key to the treatment of any cancer. If there is never a cure for me, NIH still offers hope, something that's hard to live without. Not enough can be said about NIH's staff. The US Government has appropriated its funds wisely for NIH. I'm encouraging you to contact your Representatives and Senator to ask them to fully fund all the causes at NIH.