Friday, June 19, 2009

Medical Bullet - Stage 2 / Part 2

Morning VP's...what a @$&%&$# week this has been. Remember that "rabid sky-diving" we did and wrote about in the early stages of our journey. Well some son of a $#%^ left the keys to that plane out and just when we sort of had our guard down, that damn insane pilot found them, and took us on another wild-ass ride that scared the absolute &^$# out of us. Do you have any idea how much we HATE that?

Michele's visit was like an IV of "Happy, Encouraging, Witty, Hyper, Determined, Scholarly, 'Really' Juice." It was sandwiched between 2 horrible clinic days and really did a lot to temper how brain-fried both Brenda and I were after those doctor visits. If we could just bottle some of this juice Michele produces, we could all retire and live happily ever after on a beautiful Tahitian island. Having dinner with Koko just helped bring back some of the sun and fun we all had on our last 2 Olivia Cruises to Barbados and Tahiti. Skyping with Karen and Michele and the Aussies just helped us sooooo very much fell closer to you all. Seeing you and being able to see your expressions is priceless. We laughed till our sides hurt. Really & your new MAC are fantastic...don't be afraid...walk to the light!!! Ha!

OK...OK...I'll get to what we learned yesterday from the main guy...Dr. Hong. The chemo regime is a little different than what Mary first told us. Things are CONSTANTLY changing!! It's the norm and really frustrating, but Bren and I learned a long time ago to move with things and not get too hung up when paths changed...everything always worked out and most of the time it was for the better. Instead of chemo once a week, like we thought, chemo infusion will be on the same schedule, with the same drugs, as Stage 1 only at a lower dose. So she'll have another 3 rounds of chemo. Each round is on a 21 day cycle with the first 3 days of each cycle as infusion days where she actually gets the drugs. The other 18 days the drugs just work through her system. Needless to say, it's going to be a VERY busy time going back and forth to the clinic for infusion, radiation, office visits because both Dr. Hong and Dr. Schwartz want to see her weekly. Then I'm sure there will be Nulasta shots, blood draws, educational clinics and heaven knows what also inserted in there. Pray for us a lot...PLEASE!!

We tried to pin Dr. Hong down on several issues, but he's just taking a very conservative approach when discussing outcomes and side effects with us. In retrospect, I think that's all he can do safely. He said that Brenda's tumor's presented some significant challenges and that her cancer was quite advanced when we arrived. That is why they are hitting this so hard...every one is after the CURE!! He said that...we are in the CURATIVE mode. He said that is the main mission right now and even with all the scans and knowing Brenda's case so well...he still feels that her cancer is "POTENTIALLY CURABLE." He said that he will worry about long term side effects AFTER the CURE! He said there was no other approach to take right now. He's wants to take the less invasive route to see if they can kill the cancer...especially the small lesion in her brain, and avoid having to do that cranial surgery. We totally get that part. He felt all around Brenda's neck and said that the treatments were affecting the tumors "satisfactorily." It's just one day at a time and we HAVE to be patient with that. It's a very slow process, but we're ALL working toward the CURE!!!!

We haven't gotten the chemo schedule yet but I can envision that most likely starting next week along with radiation. I'm thinking we should hear from Mary today or see that on the MD Anderson scheduler. While Brenda is feeling so well, we're going to try and get out and have some fun and eat some good meals. We're both still pretty exhausted right now so we'll be trying to recharge our batteries in preparation for the days ahead.

To all of you who are hanging in there with us on this long walk...a thousand thanks from the bottom of my heart. Words just can't describe how comforting your efforts are to us. I can't imagine having to travel this path alone. Many do unfortunately. We see them wandering around the clinic and it's so very sad. We really do feel your presence and know that we can reach out for you when we need something specific and you'll be there even though hundreds of miles in some cases might separate us. I really don't know how we could do this without you. It DOES take a village to get through this.

So I need to get off my keester and go for a walk while it's still just warm outside instead of oppressively hot and humid. Brenda is napping and thats good...she needs to build up all the strength she can muster for the days ahead. She is such a brave and determined soul and will remain, forever, my hero.

Love and blessing to you all...
Nurse Dee and our favorite Chemo-sabe


  1. Well the Universe is certainly teaching you about flexibility and in case you didn't get it the first few hundred times here we go again...

    On the positive side its nice the docs are being so open and flexible about how to treat and cure this "thing"... that is definitely a good thing that they are not locked into only one way to go...

    As always we are all here and signed on for the ride & the duration... around and round we go and were it stops no one knows!
    Oh yes... "better than new!"

    Love, Hugs and Blessings always

  2. PS does this mean we are still doing the original radiation schedule... with this new added chemo? Sorry I got confused along the way... oh and of course you are not confused! HA

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  4. Hey there, Nurse Dee and Chemo-sabe...
    Conni and I just heard about your "village" and thought we'd let you know that thoughts and prayers are coming daily from the Oregon contingency.

    Love and Prayers,
    Kathy and Conni

  5. Hey there Kathy and Conni...nice to see you both on the blog. Good to have another state joined in :) Brenda can use all the mojo she can get these days !!Thanks for sharing those Turks pics they were great. Hope all is well with you 2.
    Rhonda in Idaho
    P.S. how is your niece and softball?? Did she graduate this year?

  6. Hey's a name from the past that will make you pee your pants!!! Robin Welch....we were laughing at work today telling school days you remember that one? HA HA Hoping today is a good day for you :0
    Love ya,

  7. Okay VPs here's the latest. I am starting my chemo on Monday at 0800 and the chemo is not that lower than the first "high dose." Essentially, one chemo, Cisplatin, is really hard on they system and has the most side effects. The oncologist reduced that a "little" and the other chemo, Etoposide, is the same dosage. So, this is going to be a kicker for sure. I will be on a 21 day schedule with chemo on M-W every 21 days. On top of that I will have radiation 5 days per week. The chemo makes the cancer vulnerable to IMRT (radiotherapy). So with a high dose of radiation they are going with a relatively high dose of chemotherapy.

    Tomorrow I have chemotherapy for 7 1/2 hours and then I will go to dental where they will fit my stent and mouth guards. After that I will have a dry run of radiation. Then I will go home and get some sleep. Yikes. My schedule is pretty full already and on chemo weeks they are going to be insane. And yes, more Neulasta shots and butt kicking steroids.

    Mary, my oncology nurse practitioner told me that she will do everything she can to help me through this. She has been an awesome ally in keeping my side effects to a low roar. She told me again today after telling me the dosage of chemo that this is going to be tough and she's sorry that she is making me feel so bad. I just don't know what "tough" is going to be. Tough to an 75 year old is different than tough to a 47 year old that was in shape at the beginning of this treatment. I have a good body mass to fight this and I have already been scheduled for a nutrition class. Apparently I will be getting some delectable dishes through a straw in the coming weeks. Stand by my VPs I wll have some blender recipes to live for. ;-)

    So keep those well wishes coming because I am about to go back down with chemo and radiation as well. I am keeping my eye on the ball and after the torment of this week I just want to get started so that I can get it done. With luck and prayers all of the cancer will be gone and I won't have to wait around for any other surgery. I am going to do my best to keep viruses at bay and accept the fact that if I lose 7 1/2 pounds I will have a surgically placed feeding tube in my stomach and not fight the issues that will occur in my mouth, sinuses, and throat as a result of the high dose of radiation.

    With love and gratitude,

    Chemo Sabe

  8. Hi Chemo Sabe and Dee,

    I'm so glad you guys are at MD Anderson with Dr. Hong. It sure sounds like you are getting such wonderful care. I know it has to be so hugely overwhelming to think about what's coming next. Hang on to the fact that you have the best team in the world working on this for you. I love that they have their eyes on "the cure!!" There is no place on earth that's going to have better resources to help you deal with the side effects of the coming treatments. I know that you already feel confident that they are on top of what is the best treatment for your disease. Also, know that in the last 10-20 years the way that they can support you for the side effects, as you get this treatment, has advanced too. The dental care their already on top of. The meds we have to help bring up your blood counts and fight the infections, and deal with appetite and nausea....all are so much better. Hang on to that too. It sounds like Mary will be there with you every step of the way AS WELL AS Dr. Hong himself. They'll be on top of that. You will ALWAYS have us, your Village too. You can lean on us in any way that you need. We will hold you both up and laugh with you and cry with you, on the good days and the tough ones.

    You are amazing and inspiring and courageous. You're gonna come through this. No doubt.

    Just like riding that roller coaster, they have to tell you all the icky stuff up front. It probably will be easier emotionally to deal with all this when you are underway with this next phase.

    I miss your faces and wish I were there to plant kisses all over both of them.

    Love you tons sweeties,

  9. We're a little lost for days and poor Bren is fried with all this. Chemo will start on Monday the 22nd...not tomorrow. Please keep the prayers coming. We just want to get on the other side of this.

  10. Dear Brenda and Dee,

    Donna and I have both been following all the updates, jokes, videos, and honest heartwarming talk. We are here for you in whatever way you may need us. We are sending you both all our prayers and wishes for the CURE -which we know is just around the corner. We both so admire your bravery, undaunted Love for life, and Dee too, and how strong and determined you both are. We love you and would love for you to come and recuperate and relax in lovely Sonoma, California when you are ready and feeling up to it. We think of you both morning, noon and night, and if I could learn how to use my new video camera within my lifetime - I would surely post a video. We did have a flip, but Lucas took it to school for a project and someone stole it from his backpack. I though I had migrated forward for a little more complex digs on the camcorder front - but let's see how long it will take me to post a video.. Have a nice weekend, eat some good food, your ducks are all in row -listening, sending love, karma, wishes, kisses and many hugs to both of you. Keep on doing everything you are doing - the CURE is on the way!!

    Much Love,
    jodie and donna

  11. HI Chemo sabe and Dutiful Nurse Dee (That sounds like a porn name come to think of it :),
    I know the upcoming weeks will be tough. I just cannot help thinking this is the path to the cure. Vic talked back in April about "gut feeling". My gut, and it is bigger since my visit, tells me you are going to get through this with no unwanted side effects - period (no pun).
    I do not want to minimize how scary the unknown can be and regardless of what you do, it is all an unknown - that is a bit duanting. What is known is that medicine has advanced; Dee's nursing skills have advanced; you are in advanced shape both mind and body; with the love and mojo generating powers of your VP's. Please know you can count on Karen and me to help in any way (except cooking) to assist both you and Dee through this next round.
    Now let's start smiling again.
    I saw the schedule. Yes VP's Dee had a printed schedule prepared within two hours of the MD visits. Lovely little chart, with rows and columns, doses and frequencies. Very organized (organised in OZ speak). Kasren would be so proud.
    Keeping up with the appointments for chemo and radiation will be tiring. The challenge will be to keep both of you healthy and in tghe right area on the right day. USE THE GPS. I know you don't think you need it - but you do!!!!
    Chemo sabe - well I know you hate the steroid affects, but you kicked butt the last round and I just know you can do it again. If you follow baseball, the steroids do help "hit the ball out of the park" You just have to hit the ball. Stay focused and think about sticking the landing.
    To keep you occupied, I am prepared to challenge you to a very rigorous game of video slots on the iTouch. When we talk on Sunday, let's set some milestones for this competition. You think chemo is going to give you a whooping, wait 'til you see what I can do on the slots :)
    Dee - oh sweetie you will need to charge you Kindle and your laptop. I'm thinking Chemo Sabe will be busy trying her darndest (is that a word?) to beat me at slots, unsuccessfully of course, which means you might be a bit bored as well as tired. I will try to think of some things to keep you busy that do not require much energy.
    Enjoy the weekend my friends and rest easy knowing you have a support system that is redefining "support system".

  12. We are all here in your corner rooting for this thing to BE GONE....tough days ahaead but thats when the tough get going. While this stage will take some extra effort champions have that ability to pull out that extra bit when it is needed- you are both true champions. We are all out here hoping, wishing and praying for you both.

    We are here or we can be there, at any hour happy to help out whenever we can. Just let us know what we can do.

    We're thinking of you and sending you love, hugs and as much positive energy as we can. We will talk to you soon.

    Chemo-sabe, please make sure you keep us updated on your slot crusade with Michele - we would love to see these results !!!!! (even though she is my new mac buddy we are putting our cash on you to come up trumps girl !)


  13. Hey Aussies - what does "come up trumps mean"? Seems like an awful lot of words to say you hope she wins.
    Now this is a competition and I do not intend to "let" anyone win; not even our Chemo sabe. I will give her my best high school girl cheer complete with high stepping and a split at the end for her to beat Chemo. I amy even have a few tumbles left for her to kick butt on radiation therapy. If not tumbles, definetly a few slips and falls :) As far as the slots competition - I am all in - so to speak.
    Let's get ready to rumble!!!!