Friday, May 27, 2011

Fun visit!

Momma and Daddy were able to come up for the day today. It was great to visit with them and that they got to spend some time with Fred as well. They used to come up early when he was small so that they could be the ones to get him out of his crib first thing in the morning, with his curls all crazy...Skipper always called him his "mountain man"!!! Momma brought lunch of pasta salad, pickled beets, green beans, and cucumbers all fresh from the garden! Delicious!!!

Rosie has been working hard getting back into the swing of a very compressed summer schedule. I was able to turn in another 12inches from her last hair cut to Locks of Love yesterday. Her second time to donate!!! How cool is that?!!! We are moving Freddie back to K'ville for the start of his summer studies tomorrow. We've been so busy with everything else that Brent and I were surprised to find that we are both off on Monday!! So that will be a nice day to settle down for us.

We will be off to Tampa, yet again, on Thursday. Legs have been very lumpy and just found a rather large lymph node on the leg opposite the last injections! Rash has been pretty itchy along with a fair amount of joint aches this time. On the up side, the mouth stuff has faded to a low roar so I am glad about that. We finally got the last leukophoresis scheduled for the 1oth of June, with scans in Chattanooga on the 6th. Hopefully, we will get a bit of a break after that!!!! Having, in theory, only to go to Tampa every 3 months for the anti-PD1 infusions. Who would have thought I would find that schedule, so appealing?!!!!!

Perspective is everything! - c

Sunday, May 22, 2011

Chemo Limo!

So....despite a busy week with the kids and busy week at work with a new computer/paperless system installed in the office for less than a week, by Wednesday, I was beginning to feel pretty good. Must be time to go back for more poison! And sure enough...for some reason, this session hit me hard. I had mouth ulcers by the time I reached Marietta and couldn't walk for shit by the time we got to Rosie in Atlanta! By Saturday, we realized that my knee on the leg with the injections had significant edema on one side along with the swelling and tenderness that usually accompanies the injections at the thigh. (A nifty and new side effect!!) What a mess... If you're interested in feeling rather depressed and a comradery with my situation...check out: Chemo Limo by Regina Spektor on YOUTUBE.

At any rate, the only down side of my last trip with Ruthie was our attempt to deal with some billing issues (of which there should be none) and get my last leukophoresis scheduled (which was a known entity 6 months ago!). Brent and I have been leaving messages for the people we were told to contact in billing and in the patient care coordination section for weeks with EXTREMELY minimal response and ZERO resolution! Ruthie and I thought that surely, being there, in person, we could achieve some result! But, NO!!!!! No one we were supposed to speak was even there (supposedly!!!). My leukophoresis is STILL unscheduled!!! It is to occur in 3 weeks, I have to buy plane tickets...you get the picture..... We spoke with a wide variety of people. Some listened and acknowledged, but had no power. Some listened and were absolute imbeciles. Some gave info because they were so ditzy they didn't know better. Some lied to our face....without blinking. I thought someone might care. I thought someone might want to do their job caring for desperate, dying people a little better. I thought they might want to do something about the fact that one nurse was superb and others could stand a bit more training. I thought they might want to fix a system in which a social worker appears on day one...and is theoretically concerned with your mental health as a stage 4 cancer patient and lab rat...and says that they will be getting back to you with info about hotel contracts Moffitt is making with various hotels to diminish the costs incurred by these same desperate, lab rat patients.....but....who never shows hide nor hair again....nothing....in 6 months......

Oh, well.... I think all of you who know me...feel that I am a fighter. (As you may remember, I write letters to asinine school principals with a halo drilled into my skull on behalf of children other than my own. One of whom the Red Bank principal was trying to keep out of the National Honor Society because he didn't meet her "standards" just graduated as the Valedictorian!!!!! Thank you very much!!!! Way to go Justin!!!!) Yet, I wish Ruthie and I hadn't bothered. The effort just put a damper on the Perky Petide Posse and did absolutely no good.

I do think that being a patient is the BEST training for those who care for patients. And I am happy to say, that though I haven't been perfect, I have done a pretty good job over the past 27 years in providing care to patients and their families....as judged by someone who has walked more than a mile in their shoes!!!! I also feel that everyone administering and ordering the administration of the peptide vaccines should have to take an injection of same. Now mind you, I realize that that is NOTHING like what I and the other patients on this trial have had to endure. Having six at a time puts an incredibly different slant on it. Having to deal with the ever escalating, contralateral side effects and granulomas will not be realized with only one injection! But still....it is a step toward reality. This is NOT like a flu shot. This is NOT a pain that is diminished with ice. This is NOT something that Benadryl orally or topically can improve. This is NOT for sissies!!!

So there!!!!! c

6 months down...1 more trip to go! (Well, 2, if you count the follow-up leukophoresis trip...but I'm not, right now!!)

Ruthie and I just finished the next to last Peptide Vaccine and Anti PD1 infusion trip! The trip down went fine....no scans, no hostility. The visit was fine with the NP (everything is always fine with her!). Then, we won the lottery and had our bestest one nurse Jackie!!! IV's were started..and didn't ache the entire time. Vaccines were given as painlessly as possible and all medicine invested was injected!!! (If that's a good thing?!!!) The trip back was easy peasy, got an earlier flight, seats together, NO scans, AGAIN, even though we were brain dead and didn't even remove our packets of explosive hair spray, shampoo and mousse into our lovely grey buckets....leaving them to be scanned in their special, less-than-3-ounce-containers, ensconced within their super duper plastic zip lock baggies, WITHIN, the confines of a suitcase!!!! HORRORS!!!!! Yet, no one cared in the least!

We dealt with yet another bizarre rental car employee. Second time, actually. When renting from Alamo (which I don't really advise, though it is better than Budget) you have to make a reservation. Woe be unto those who fail to complete THAT step. You MUST appear with the SAME credit card in which the reservation was made. (They don't tell you that...neither do the other guys...though they all require it!!) You have to deal with a person at the counter who is usually in a bad mood and angrily insists that you buy extra insurance (which you don't need if you use a credit card...which you must....and if you have car insurance on your car at home...Readers Digest even says so!!!) and really expensive gas from them. But, if you are lucky, which we were this time, the kiosk thingy will be functioning, and you can do this step without human intervention, by punching computer buttons and sliding various cards in slots. Still, after this, you must walk out to the cars and go to the section with the label of the car type you have rented. You must understand this is a very fluid label. I have driven all manner of cars over the past 6 months. Sometimes they are parked in the "mid size" section, sometimes they are designated as "compacts". The past is irrelevant. Where the car is parked today is all that matters. Once you have picked your car, you must drive to the attendant in the glass box and start over. They must inspect your credit card, driver's license, rental ticket, and a hangy label thingy from the car itself. After a certain amount of fluster they will give you back some of these things and tell you that you may leave. Sometimes there are "floor walkers" (if you remember these from the children's book, Babar the Elephant). They are not always present. Some are helpful and others are not, but they are there to assist you in finding the cars you have ostensibly rented. Last time, a chubby, hale and hearty gentleman, yelled at me and Ruth from across the car park, "Are you with them?" Looking about, we replied, "No." "Are you with them?" he yells again. "No, we are just us!" "Good!" he says, while the people he indicates are still in view and within hearing. (We never knew what that was about!) "What can I do for you two ladies? Nice hair. You can see I don't have any!" Slightly bemused, confused regarding whose hair, and why, I reply, "We are just looking for the compacts." "Compacts? No way! Let me upgrade you!" (Who does he think he is? Beyonce?) Ruth says, "We don't need any extra space or charges." "Oh, no, no!! This is on me!" This went on and on. We picked a horrifying orange Dodge something....merely because on the time before we had had a grayish Toyota, as has everyone else in the world, and we would lose it every time we left it anywhere!!! He seemed a bit incredulous about our choice, but WOULD NOT LEAVE!!!! I whispered to Ruth, "Am I supposed to tip him?" A procedure we had never seen used in that circumstance, but I stood ready to invest in it if it would make him go away....which, FINALLY, he did. Low and behold....as we are walking in on this trip....who do we see canvasing the area?.....BALDY!!! We try sneaking in the direction we know we need to go on our own... "What can I do for you ladies?!!!!" "Just looking for the compacts." "Where are you coming from?" (A. What's it to you? B. This is a trick question for us because Ruthie is from Alabama/Prattville...I am from TN/Chattanooga/Signal Mountain....) I pause. Ruthie steps up to the plate..."Chattanooga," she says, with remarkable calm! "Oh, Chattanooga! I love your aquarium! It's marvelous. I was there with my wife. I am divorced now. I love the aquarium in Chattanooga. When I got back from that trip with my wife (I divorced her and..) I called our aquarium and I told them they were nothing but a fish bowl! Nothing but a fish bowl!!!" Ruthie's calm has departed. "Really?" I reply. "It IS nice. Glad you liked it." "Yeah. Ours is nothing but a fish bowl. That's what I told them!" "Well, that's OK. You've got the ocean." "We don't have the ocean, that's on the other side." "Well, OK...(Weird little fat man!)...you have the bay. Large body of salty water with fish in it!" (That part I really said!) "Nothing but a fish bowl!"......OMG! We are getting desperate now! No cars have been discussed. Ruthie and I have been walking steadfastly toward the compacts of which there are 3 sad varieties. All looking like the kind of cars little kids draw. We opt for a red one....which turns out to be a Chevy Cobalt.....(Whatever you do...don't invest in one of those...better than a Volkswagen Jetta....yes...but barely! Just don't!) And...as odd as it may sound, Ruthie and I like to smell our cars before we commit to them...we really hate the smell of old cigarette smoke...and other odors can be alarming as well!! But, we were in dire straits! We hopped in! Smells be damned! We adjusted mirrors and set up the GPS with lightening speed! I couldn't see out of the windshield because it was so nasty, but damn the torpedoes.... we plow straight ahead. But, what to our wondering eyes should appear? Someone is already in front of us and stopped at the little glass box, and Fatty Patty Chatty is standing right along side. We are now a captive audience with the window rolled down! "So....where are you ladies off to in Tampa?" "Oh, here and there", Ruthie answers in a vague, disinterested sort of way. "Oh, shopping?" "No, cancer therapy," I reply. "Sort of the opposite of shopping...really." The man starts swimming through the air backwards...his face looking much like I imagine his nether regions were puckered...."Oh, well, you'll be next, right after this car!" I almost guffawed with hysterical laughter right in his face, but worked hard not to do so....lest he think it was a joke and start up talking again.....but, as far as I know...he is still walking backwards...his face in a pucker!!!!!

We took a scenic route, in our nasty red Chevy Cobalt...we kept feeling it should be blue...and clean...with an incredibly odd and annoying cricket-like sound when the air conditioner was on. A sound that could be temporarily diminished by twisting the air up to full force for a few minutes and back down again....to a nice restaurant Kik had suggested. Then, we headed back to the better La Quinta....which had supposedly been booked last time and we had stayed in a sketchy La Quinta...so much so that we put the large overstuffed chair in front of the door to bar intruders....but I digress.... We were back to our home away from home and the treatment went as well as it could as I noted before.

Here's to you, Ruthie! And our combined ability to adapt!!!! c

PPP = Pinky Pink Power Women...or...




...Perky Peptide Patient with her Perky Peptide Posse!! the story behind the Tee's:



Last time Ruthie and I were down to Tampa for my treatment, a nurse other than "mine" came in to deal with my IV pump that was beeping and while she was working on it "my" nurse came in as well. The first commented to the other, "She is always so perky and smiling." My nurse said, "Yes...and she's a PEPTIDE patient!" They left the room and Ruthie looked at me..."You're a perky peptide patient!" I said, "Well, you're the Perky Peptide Patient's Posse!" And so the Perky Peptide tee shirts were born!! During her break between semesters Rosie made us cool Tee's, with an added bonus. On the back of mine is: TROUBLE. But on Ruthie's it says: DOUBLE. She made Brent and Fred shirts as well. Fred-0 just has PPP on a sleeve. Bent's has PPP on a front pocket, but "I'm with Trouble!" on the back! We had fun with them. Funny thing....nobody thought they were inappropriate!!! Rosie had hers on to celebrate the next to last peptide (vaccine) treatment with us when we stopped by her dorm in Atlanta to take her to supper after my treatment. LOVE MY GIRLS!!!! (Brent and Fred were wearing theirs too, when we got back home later that night!!! Such cool boys!!)



May your posse be pink and powerful like mine! c



Sunday, May 15, 2011

Munchkins home again.....

It has been a crazy, wonderful week. Got to be with Roo! Then went to K'ville to help Fred bring his stuff home for a bit, on Wed. Rosie got to see some of her friends graduate with honors!!! Go Justin and Dania!! Had fun with the kids...even special birthday cake ("SPECIAL" because it wouldn't come out of the pan!!!!...but it did taste good!) on Friday with a mutual b'day for my now 19 and 21 year old babies!!! (Though Fred won't technically have his birthday 'til June 11...we went for it while we were all together!) Had to deal with car repairs, a dead Rosie computer, and take doggies to the vet...but I had good helpers for all of it and all machines and pooches are running fine again. Brent and Fred did a marathon fix on a new computer for Rose. Then...it was packing Rosie back up. Fred was a trooper and did most of the hauling. We all went down to Atlanta today to get Rosie ensconced in her new place. She is so excited to have a bedroom of her own, share a bathroom with only one other person, and have a kitchen and living area she shares with four girls. We got it all purple and stylin'!! Fred got the computer going and Brent saved the day, running to Target for towels that had been forgotten and a step stool for the tall kitchen cabinets. We are missing our Rosie already, but will get to have some time with Fred for a couple more weeks!!

Was pretty tired through Wednesday...though with Rosie's enthusiasm and cheers managed to jog about 2 miles each day. Have also been working out on a new elliptical. Our 'beastly' one finally died the last time Rose was home. The pedal just sheared off while she was using it! The new one is TOUGH! Still trying to find out what "BEAST MODE" is on it...but my new number is making it to 115 in 15 minutes. We'll see how I do...

"But time makes you bolder and children get older and I'm getting older...too. So take this love and take it down. If you climb a mountain and you turn around...and if you see my reflection in the snow covered hills well, the landslide brought it down....well maybe.....well maybe..."

May your landslides be soft and gentle....c

Tuesday, May 10, 2011

The beautiful Roo!!!!!!!!!!!!!!!!!


Have you ever seen such beautiful ROSES?!!!!!



Running through the irises!

Another day, another hair dude!








THE VERY BEST GIRL A MOM COULD HAVE....and Karma too! Love you, Rosie!!!!!

The change begins....


My girls!!!



Locks of love....here we come!

Sunday, May 8, 2011

Tampa...by way of Nashville

We started this trip to Tampa a little early and a little special... Ruthie came up on Wednesday and we took off for Nashville, since Kik would be there as a speaker for the ADL. We got in that afternoon and had a great visit and dinner with her! Thursday morning we got to go hear her speak in person, before we all headed to the airport, where Kik went home to Houston and Ruthie and I went down to Tampa for fun, merriment, and relaxation!!!! It was great to get to spend time with both of them!!!

Chillin' in the garden!!
The speaker with the mostest!!!
Ardent audience members!

The Tampa adventure went ok. Dr. Weber informed me that I am the second person in my cohort to get mucositis (irritation to the mucus membranes). We did learn that all but two patients, who had rapidly advancing disease early on, in my group are still in the study, now 9 months out. (Poor people!) Even the group with my treatment and non-resected disease seem to be doing fairly well. We did not learn any more about the 3 mg/kg group who, 2 weeks ago, had only recently begun with about 8 patients enrolled at that time. We were told last time that one patient had to be withdrawn because of extreme vision loss due to inflammation of the optic nerve that had been improving with the withdrawal of the medication and steroids. Anyhow, no new news about me. IV went well. Injections were a bit sketchy and painful with large amounts of my elmer's glue peptides leaking back out of the injections sites! Makes you wonder why you must go through the pain of the injections if you don't get the full dose!!! Anyhow, got that done, made our way back to the Tampa airport, the Atlanta airport, the Nashville airport...and then we drove home! Rosie and Brent were already there to greet us since Brent had gone down to Atlanta and picked up the Roo and all her stuff for her week off between semesters!


Saturday was Rosie's birthday!!! My baby girl has been with me for 19 beautiful years! I can hardly believe it!!! Her Aunt Ruthie was super cool and gave her an amazing hair dude before she left us on Saturday. Pics to be posted later!!!!


Happy Mother's Day! c

Tuesday, May 3, 2011

To all of you.....

...who said, "Why didn't you tell me?" OR "I never knew..." Yes, you did. Right here. I threw it out there. And...you all knew it was here...just never bothered to look. You could have shared your thoughts. I would have liked that. But... Then there are those who always did. You made my day...everyday. Much love - c

Sunday, May 1, 2011

It's been a(n) ______________ year!

A(n): amazing year? hellacious? horrendous? incredible? beautiful? awful? wonderful?

Not sure how to categorize it really...can hardly believe it's been just over a year since Rosie helped me create this blog and exactly one year ago today that I woke up in the hospital with tubes everywhere! What is one to think about a year filled with brain zappage, lung removal, dear friends, high school proms and graduation, babies who are basically seniors and sophomores in college, and tonsil surgery, experimental drugs, San Francisco, the love of my life, the best fun with Ruthie, a wide variety of pain, getting to be here at all given the odds, and a beautiful spring with others in pain from storms and loss?

It is still a beautiful thing. Love to you all - c