Sunday, March 27, 2011

Back to work!

In the two weeks that I have been off...I have traveled 8 days, 9 if you count back and forth to Atlanta today, had three sets of visitors, three 'fun' treatments, a day of scans, eye doc appointments with Roo, a day of shopping with Roo, a day of shopping with Fred-o, one dog surg (Karm had benign tumors removed from both front legs), and a partridge in a pear tree!! I'm going to have to go back to work to get some rest!!!

Sweet notes from all my Peds Care peeps adds to the allure!! You girls are a mess and mean so much to me! See you tomorrow!

333 in 15 min!

'Nuff said!

P. S.

Not feeling as bad after therapy on Friday as I have the past couple of times. Maybe not having a whopping sinus infection, upper respiratory crud, and getting my asthma under control is the key!!! Whatever the reason, I'll take it. Sitting here doing my nebulizer like a good patient and about to do a bit on the elliptical before heading back to Atlanta with Roo.

By the way....pretty sure the muzak at the Tampa airport plays on a loop. Sitting there waiting on our flight Friday evening I suddenly knew that Melissa Etheridge was up next....and sure enough. Now what does that say about my brain?!!!!

"I would dial your number, just to listen to your breath......" c

Saturday, March 26, 2011

First of second set...done!

Brent and I had a pretty easy trip down to Tampa on Thurs. On Friday we were off to Moffit, same nurse as last time, did well for my IV start. Saw a new (both to us and fairly new to Dr. Weber) NP who did a really great job. Her review of systems and history were excellent. Her exam rivaled Weber's....perhaps with a little less verve! :>) She was very knowledgeable and I didn't have to hear anything about spackling! She did a complete eye exam which is good since Weber told me last time that at least one patient had developed retinitis on the protocol but was responding well to steroids. She also told us that my case (or at least my lung films) had been reviewed at the "discussion board" where the NP's, surgeons, radiologist and Weber go over patient findings and such. It was determined that the right lower lobe lung fluff was again...nothing is good. When talking about my skin changes which include more vitiligo as well as the increasing size of some darker nevi/moles, she listened well, examined closely, and told us that other patients on the study were also experiencing similar skin changes and she didn't think that there was anything negative to worry about at this time (and I agree). So...I will be happy to see her again on my next several visits.

It seems that neither of the two Kim's, who were study coordinators, are around anymore. We met the new one, Latisha, I believe, who though new, seems much more together and forthcoming than the other we'll see.

Labs were good. My LDH, a tumor marker of sorts, has never been above the high end of normal. However, its peaks were just after my bronch and about 4 weeks ago. This time it was the lowest it has ever been....for whatever that's worth. My hemoglobin is a bit low....probably thanks to the leukophoresis last week...which might be contributing to my tiredness. Otherwise, all else looked fine.

Got home fine. Got a few chores done and plan to veg out the rest of the day. Roo has to head back to Tech tomorrow. Have to admit that I feel rather frustrated and a bit gypped that I didn't have more time with either of the kids on their respective breaks...but that's the deal I suppose.

Cold and rainy here...but April showers bring May flowers... Atlanta is bursting with red buds, dog wood blooms, wisteria and a fair amount of pollen! Happy spring to all of you! with love - c

Friday, March 25, 2011

OMG!!! Silkie Chicken... named for its black feathers that look more like slikie fluff, rather than actual an experience to cook! We got one at the Asian grocery, H Mart, in Atlanta on a whim. Had no recipe in any of my Asian cook books. Nothing to be found on the web except that it was usually braised. So....Rosie was ready for the adventure with me. We took the dramatically black rather small bird (a bit smaller than a fryer chicken, though larger than a Cornish hen) from the plastic shrink wrap bag to find that the head, attached to an extremely long neck, was still intact. On even closer were the feet! Which had been tucked up into the body cavity and were attached to unusually long legs. Rosie exclaimed, while holding up the rather unfortunate looking creature, "Mommy! This is what you would look like if you were a chicken!". We managed to remove the unnessesary parts and turned him into a little half chick. So here's my best Black Silkie Chicken recipe: While cleaning and chopping your bird, soak some dried shitake mushrooms in hot water. Peel about an inch of fresh Ginger, cut into about four slices. Peel and bash two garlic cloves. Clean and slice about four leeks and two carrots. Add those veggies, along with the now rehydrated shrooms, cut only in half with the woody stems removed, in a heavy pot with a lid. Place your half chicks on top of the veggies. Add two tablespoons of soy sauce and the water the mushrooms soaked in to the pot. Be careful not to pour in the last bit of your shroom water cause it can be gritty. Then, add chicken broth to just barely cover all. Bring to a low boil and then turn down to a simmer four a couple of hours or until the chicken is really tender. That done...let cool a little. Remove the chicken, debone and tear into bite size pieces. Take your shrooms and carrots out of the mixture. Strain the broth, discarding the leeks, garlic, and ginger pieces. Use part of the broth to make rice...about 3 cups broth to 2 cups rice. Use the rest of the broth to cover chicken pieces in a small pot. Place enough mushroom pieces in the chicken pot so that each person will get two per serving when you bowl up your chicken soup. Once your rice is done...stir in your reserved carrots and remaining shrooms. Bring your soup to a boil. Serve very hot with some thinly sliced green onions and a drop or two of hot chili oil on top. It was really good if l say so myself. Not sure I'll use a Silkie Chicken again....l think plain ol regular chicken will do
just fine! Happy cooking! C

Thursday, March 24, 2011

Living in the cracks...

...of melanoma It is one that is dealt with by far too many and in so many different ways. Though, for all of us, I think we all try to live the best life we can in the cracks between melanoma evaluation and treatments. It is frustrating. It can be terrifying. It is my life. It is part of the life of all of those who know me...yet, I am the only one who knows what it is really like...sort of. Lately, I have looked at the way others have been dealing with the all too familiar therapies, evaluations, and insulting incursion of melanoma into their lives and in the lives of their families. Oddly enough, I am an old-timer, compared to most of them...having been given my diagnosis in 2003. I don't know if that is a comfort of not!

Below is a list of blogs and sites you might find interesting.
If you some of the following:

Melanoma Missionary: A blog written by a guy in a technology field, diagnosed in 2005. It is filled with data that is accurate and connections to many other sites. I am not sure what treatments he has utilized personally, but the information is thorough to say the least. Brent checks it regularly as part of his DAILY melanoma research, but I don't think anything here has been news for him, but many of the articles, links and writings explain things very well.

Gentle and/or Melanoma Madness: Both of these sites are maintained by a lady in the exact same trial at Moffitt that I am in. She was diagnosed in 2009 and just completed her second 3 month round of anti-PD-1 and vaccines this month.

Smelanoma: A blog by a guy who might be a little younger than myself. Diagnosed in 2008. Has tried a special diet to treat his melanoma and is currently undergoing treatment with ipi.

Melanoma Road trip USA: Go to u-tube and type this in if you're interested. Two guys diagnosed with melanoma from Australia have traveled here in the states interviewing people with melanoma, allowing them and their families tell their stories. One that interested me was, Bob Lawrence, who has had multiple gamma knife radiation treatments to the brain (no special Halo like mine!! HA!) and is now undergoing treatment with ipi. He has been diagnosed for 23 months.

Who knew? Live whatever cracks you have. love - c

Saturday, March 19, 2011

Clear enough....

Back from another whirlwind trip to Tampa! Met with Weber first thing Fri am. After a complete exam, he clearly didn't want to get into a lot of details, but looked us rather pointedly and said that he didn't see anything of concern on the films and that "Nothing is good!" After a lengthy, repeated history on the whole deal with how I've been feeling, specifically related to my cough and lungs, he did recheck the area on the lungs since we brought him the written reports from the local radiologists and that had figured so largely. Before checking he told us that several patients on ipi had had funny inflammatory places show up in their lungs that most of the radiologists had deemed recurrent disease. One poor person had a large section biopsied only to find that it was inflammation and immune cell reactions. So, he was postulating that the same thing could happen with the PD-1 as well and unless I was symptomatic (which at this point I am much better) we would just scan later and carry on. However, after checking the film again, he didn't think the area was remarkable as anything. So....I am set for another 3 months of PD-1 infusion and vaccines every other Friday starting next!

Then, it was on to the special lab for leukophoresis. That's the process where an IV is started in each arm. Blood runs from one, into a special machine, where the white cells are extracted, and the remainder is returned to you in the other. Saggy Booby Lady (now rendered: SBL) was there, being rude to the patient next to me as well as the very nice RN who seemed to be in charge of the unit for that shift. She had some smirky remarks to us about how and when we had checked in and our paperwork, etc. She was also rather rude to a clinical nurse specialist who is observing and training at Moffitt for 6 weeks from a unit in Germany. She was very nice and observed at my appointment with Weber as well as my set up for the phoresis. Luckily, the very nice RN started both my IV's, first stick that worked out. Got done in my now usual, hour 15 is done for another 3 months.

Had a leisurely trip home. Ate lunch on the bay. Got an earlier flight home thanks, to Frank-the-bomb counter dude at Air Tran. Drove through atrocious traffic to Roo in Atlanta. Had a fabulous supper with her and got a few veggies and such at H Mart. Back home to the Fred-o who held down the fort while we were gone.

Much love and thanks for all the support and concern that you have all sent my way. It means more than you know. Yours-c

Wednesday, March 16, 2011

Up and down info....

It's been a bit of a crazy ride around here, as usual! It appears to Brent and the local radiologist that the MRI of my brain has a treated met with no enhancement and is missing its prior 3mm what's it! So that's got to be good, right? There was concern noted about an area with "ground glass appearance" in my lung, right lower lobe, that per the radiologist was "probably inflammatory, granulomatous, or neoplastic in origin". I'm sorry, but that sounds more like a description of possibilities rather than probablities since he covered every disease process imaginable. At any rate, when Brent tracked him down in person and asked what he thought about it, he said, "Oh, I don't really think it's much of anything." WHAT? When Brent mentioned that I had asthma, he said, "Oh, well that's probably what caused it." The CT of the pelvis and abdomen were reported out as clear. The neck film was being reformated and its reading remained unrendered. When Brent, having been a complete basket case for the past, days, months, years...poor baby...asked about that, the radiologist said that the right cervical nodes were abnormal, though they looked exactly as they did in December and postulated that the old report might need to be re-written and corrected, but he was going to punt to someone else for that reading. Well...couple of issues.....(1)You're retarded Mr. Radiologist Man! (2) All we need is for things to stay the same as December. I mean...better is good, but we got into the study based on Weber's reading of my December studies and as long as nothing new develops, we're pretty sure I can continue. (3)Another radiologist gave the final reading of the neck CT and merely said, "No new evidence of metastatic disease", not commenting on the nodes at all. the end....things seem to be ok. But, it ain't over til the fat lady sings...and the only lady in this chorus is Dr. Weber in Tampa on Friday.

Brent is very hopeful that all of this is good news. Brent is convinced that the 3mm what's it in my head was, in fact, a met and its current absence means that the medications are working. That would be good because one would assume that it is working in all the other cracks and crannies where melanoma could be lurking.

Had very special guests and a rare treat yesterday when my sister Kik, and her husband Joe and daughter Becca were able to come up for a visit. Given busy lives and distance we have not been able to visit together too often in the past 10 years or so. It was great to be able to spend time with them. They headed back south toward Ruthie and both sets of parents today. Thanks for such a great visit guys!!!! Becca you are the most incredible piano prodigy I know!!!!

Have also been able to spend time with Fred-o! Bless him! He babied me and took me to my scans Monday. He spent the past two days cooking and cleaning and taking care of all of us! Poor dude! He's having the best Spring Break EVER!!!!! He's my cutie patootie and took me "running" (HA!!! Slow jog is more like!) for a little over a mile with Z today.

This round of meds, especially the injections, have been pretty yucky this time. Plus, the sinus infection that I had just beat back, reared its ugly head again. I even have proof on my MRI!! Anyhow, back in treatment for that and I am feeling better both from the meds and that as well!

Tomorrow Brent and I are heading for Atlanta and Tampa. We will having a meeting with Weber and then the leukophoresis on Friday. On the way home, we will land in Atlanta and pick up the Roo for her Spring Break.

So there you have it...will keep you posted with Weber's song on Friday! Much love - c

Saturday, March 12, 2011

Number 6

In some ways it feels like forever...but l can't believe l've been going to Tampa for treatments for 3 months! Anyhow, Brent and l had a pretty easy trip down Thursday morning. We played around town, driving along the coast, did a little shopping for some critters (a niece and nephew) with birthdays coming up. Had lunch at a little Greek place. Found a restaurant that Kik had recommended, but since they weren't serving til later, may save it for a special treat when (if) Ruthie comes with me again!

Friday morning we had an easy trip to the hospital. Things went smoothly although waits were longer since our first appointment wasn't until 0945. Since our flight out isn't until Sunday that was just fine. Dr. Weber seemed positive about things. Said that the most common problem being reported was fatigue, though he seemed to think that mine was mild since l am still working and exercising and such, giving me a 1 on a 4 point scale with 4 being the higher measure. He did confirm what Brent had said about the half-life of the medication reaching a steady state after/around the 3rd dose. Oddly enough, he was very happy about an enlarged lymph node that had occurred in my right groin after the vaccines in the right thigh last time. As Rosie says, "Yay, for awkward random lumps!" The IV start and blood draw went fine. Brent was worried about it since l will have to have an IV on Monday for the scans and two more for the leukophoresis on Friday. The injections were what they were. Leg hurts like a booger this morning! Nurse was nice, new to us. Saw the famed Jackie though, and Brent was able to thank her for all her help.

So...sitting here watching silly Yankees feed the sea gulls and the dolphins playing in the bay while l do my nebulizer and Brent runs. Some silly ducks are trying to pretend that a large puddle in a drainage ditch is a pond, though one of them said, "Gertrude! This is not how it looked in the brochure!" It's a beautiful sunny day and we are planning to explore a bit more of Tampa. Much love - c

Saturday, March 5, 2011

The B**** is BACK!!!

666 in 29 minutes on the elliptical!!! Here we go............... ;>) c

Friday, March 4, 2011

3/4/11 - March Forth!!!!

My favorite date on the entire calendar!!! What other date could be so enthusiastic and optimistic?

Started my day with 15 minutes on the elliptical for 318 calories burned. Not exactly beast worthy (that would require 333!), but pretty good as a beast in training.....again! :>( Oh well, marching forth nevertheless!

Then, we got to have a fun trip to Atlanta to meet Rosie after she got out of class. She took us to one of her favorite new finds in Atlanta...H Asian market with amazing fruits and veggies...including many I know not what to do with....and every type of meat and fish! It was like a trip back to China town in San Francisco! We got to have a delicious lunch of Benito boxes and noodle bowls....It was GREAT! Rosie looked fabulous as ever...seems to be getting things under control after the wild rush her semester has been this time what with starting 4 days behind due to the crazy Atlanta ice storm. She's a trooper and makes us so proud!

Talked to Fred-o by phone today. He's churning out one paper after another! Looking forward to getting to spend time with him on his spring break in one week and then with Rosie in two weeks. Wish they could have fallen together, but we will have a weekend to share where they overlap!

Busy times coming up. Off with Brent this weekend. Then to work Mon-Wed. He and I will fly out of Atlanta Thurs to land in St Pete. We will have Thurs to putter about and end up in our hotel with a kitchen on the beach in Tampa. Friday will be the final treatment of this session, which is usually done by 1pm or so...then we can laze about that afternoon and all day Sat. We fly back to Chattanooga on Sunday am and get to see Fred-o. Monday is a day of scans. Kik may come for a visit on Tues. But I'll get to do around with Fred. Thurs, Brent and I are off again, leaving for Tampa around 5pm out of Atlanta, because Brent is going to work that morning. Friday will be a meeting with Weber and leukophoresis. But that evening, we will be picking up the Roo in Atlanta for her spring break as we head home for a weekend with both the binga-heads!!!!

So....a busy couple of weeks ahead.....MARCH FORTH! c