Monday, July 27, 2009

Monday Update

Hi VP's...Time for another update. The most important thing to report is that the feeding tube is still holding in the correct position so we can get meds and formula into Chemo-sabe. Thanks the heavens!! We're almost at the correct calorie intake per day. Because of naps, and appointments, we've seemed to be one can sigh of our goal each day, but I think we'll make it today. You're probably asking...has poor Chemo-sabe lost weight? The answer is yes, but not at an alarming rate. We've seemed to have lost the most ground in that area while we struggled with this tube. Please tube...keep working!!!

We're at a milestone with today's radiation treatment...only 10 more days of treatments left!!! Yep! We can see the light at the end of the tunnel. We have 2 issues that we are working to minimize...The biggest is the pain. She describes the pain in her throat like swallowing broken glass. Add to that a dry, constructed throat, and you have a big painful problem. We upped her pain medication last Friday to a pain patch and after discussing this issues with Mary, Dr. Hong's PA...we're going to up it again tonight. This will only get worse as we work through these next 2 weeks so it's important to keep the pain managed. Mary is also going to try to get us into the pain clinic as soon as possible to help us manage this.

The other issue are the radiation burns on Chemo-sabe's neck...they are now starting to blister and weep and itch like crazy. This afternoon we got some gel strips that are used to soothe these burns on radiation patients. They are somewhat soothing to her, but the itch is still maddening. I think I'll get some aloe and work with that as well. You have to be careful what you use these on the burns. These next several weeks will be tricky. Even after the radiation treatments end, the radiation is still working so we probably will have to deal with these symptoms for about a month. The proper amount of pain meds are critical to keeping her comfortable. This radiation stiff is definitely the hardest part of the road to the CURE.

Brenda doesn't sleep well at night at all because she can't breathe well and her mouth dries out so quickly. Consequently she sleeps lots during the day...that's makes the time go fast. I'm being very careful NOT to overdose her on the pain meds so I'm watching her like a hawk. My motto...let her sleep!!

We saw Mary this afternoon...Dr. Hong is on a Disney Cruise with his grand kids, but will be back next week. I think I told you this but next Tuesday we start DOUBLE radiation treatments each day for 4 days. Dr. Schwartz said these were booster radiation treatments to the lower lymph nodes in Bren's lower neck and collar bone area. That heaven it's only 4 treatments and he said that these would not add more misery to the equation. The good news is that Mary said they would not do chemo while she was having these double treatments. The question remains...will she have to go through another round of chemo when the radiation is over?

We also asked about what would come next and when they would scan. Of course this is all up to the main man, Dr. Hong, but we think that they will tell us to take Brenda home to heal after the radiation and/or chemo is over and to come back in 6 to 8 weeks for the scans. The reason they do that is because all the tissue around the tumor sites are so inflamed that they just wouldn't get good scans on any remaining cancer cells until all that calmed down. That made perfect sense to us. Right now I'm thinking that we'll have to stay here for about 2 weeks when all the treatments are over so we can be close to MD Anderson who will help us manage the side effects until things begin to calm down and she's strong enough to fly home...she's pretty weak right now. You know, if our angels continue to remain with us we might be able to be home by the end of that's MUSIC to our ears!!! The light is getting brighter.

I thought I'd send you a picture of our kitchen pharmacy...most of these are for poor Chemo-sabe. I've got quite the system worked out and yes!!! I have more CHARTS! The red machine in the middle is my wonderful Kuerig Coffee Maker...that's MY drug! Ha! The second picture is our girl just trying to get through the day...closer to the end and the CURE. I'm not trying to strangle her...the white gauze is to keep the cooling gel packs on her neck. It is what it is! BUT we're closer to the end then we were yesterday! Thank the Lord!

So there ya have it VP's...the food is dripping and "Garbage Girl" is trying to eat up the food in the freezer, frig, and the cupboards so we don't waste stuff. Thank heaven I'm not a picky eater. Please continue your contact, prayers, and good thoughts as we work through these last hard days. You all really make a difference.

Hugs to you all from Houston Central...
Nurse Dee and a very burned and pain filled Chemo-sabe


  1. Talk about a test!!! Now we know why the doctors said most guys quit at this stage. It is surely a test of true strength. Thank goodness chemo sabe has strength, courage, rock hard will-power, a remarkable Nurse Dee and a most supportive healing village. Now if we can all channel real hard a message to the feeding tube - keep working and no more flipping".
    I might be overly optimistic, although that is something I have never been accused of, but I think once the actual radiation is over, the negative impacts will minimize. I know the effects are cumulative, but no new impacts. At least that is what I am sending in terms of positive vibes. In the meantime, drugs, gel patches and feedings should keep her comfortable enough to get through this last nine days.
    I hope you can feel the love we are sending all the way from Jersey.

    Two weeks to some calmer waters and a smooth sailing.

  2. Like the rest of the village I wish I could say or do something to make this easier for you. I hope it helps to know you are loved and cared about by so many people. There is light at the end of the tunnel but it's a miserable tunnel to go through. Ten more treatment days left. Two weeks from now you will be done with the worst part of the road to the cure. Keep that vision of home in your head! May the next two weeks go by quickly so you can concentrate on healing and going home!


  3. Sister....keep up the "strength"...I know it's in there. Your the strongest woman I have ever known! These next weeks will really try your spirit but don't let it get you down. Let the meds do their magic and may you sleep away your pain. We are all THANKFUL that you are blessed with the best nurse in the world helping you through this. YOU are the lucky one. Like we keep saying who could EVER go throught this alone. I am SO PROUD of you and wishing I was there to hug on you. All of us wish there was something we could do to ease your pain. Should I send you a bigger and better black marker for your calendar to X those days off?? :) We are all counting down with you. Know that we all love you and think about you each day. Hope that light gets brighter and brighter at the end of that tunnel. Loving you from Idaho Sis.

    P.S. keep sending me your drugged up phone messages, you make me laugh out loud. Laughter is ALWAYS great medicine.

  4. Brenda & Dee:
    You two continue to show a strength and resiliency that is awe-inspiring. I am so sorry to hear that you are in such pain, my friend. I wish I could be there to comfort you.

    Your sister Rhonda had me laughing with her blog entry about drugged-up phone messages, and I know you will do your best to laugh, too. That has been your gift to so many of us!

    And, Dee, no worries, you are not the only one who "has a tendency to be rather blunt (30 years of police work and way too many years in police management!! Ha!" I can remember Brenda leaving a NOT-SO-NICE message for someone who kept taking hubcaps off a Patrol vehicle. . . so maybe the drugged up messages she's leaving Rhonda are an improvement! hee hee. And, if your Police Command presence can do ANYTHING at all to alleviate some of the pain, the radiation burns, and the feeding tube problems. . . you go after whomever or whatever with everything you've got! Advocacy is truly what she needs right now. . . But, remember to "take care of the care-taker" best you can. Your love keeps shining through in this story.

    When you both get home in August, if you need ANYTHING, just call. . . .That will be such a relief to have the worst part behind you. STAY STRONG and keep fighting. You have a crowd behind you, cheering you on.

    Much love and SO many prayers, I may not get any sleep tonight. Love you . . .


  5. I skyped Brenda and Dee last night and and I am continually amazed by their strength and ability to stay positive through all of this. Since everyone agrees that laughter is the best medicine Marshall Vic has come up with a new video. She had to go to extremes for this one but it achieved the desired effect.....Chemo Sabe laughed out loud!

    Wishing you more laughter in the days and years ahead!


  6. If Brenda can tolerate the aloe - it really cuts down on pain and itching as well as blistering for regular burns so it may be helpful for her... get the good one in the dark brown bottle from a health food store... one can only hope & pray.

    Ask about her getting acupuncture for pain. I and others I know have had very good results using acupunture not only to alleviate problems but for intense pain that can not be controlled by pain meds. I have been reading a really amazing book (Genie in your Genes) which discusses this & how doctors in the East/Asia use just acupunture while performing major surgery. My acupunturist here in Payson is Dr. Anderson... Anyway its a thought!

    I have had a strong feeling the past few days to step up the healing meditation I have been doing for Brenda. The new meditation mantra is "Brenda has only healthy cells" - and this goes out late evening, very early morning & during the day. As always know that we love both of you and think and pray for you often.

    Lots of Love, Hugs & Blessings, Cathie & Evelyn

  7. You guys are amazing. Stay strong and positive, the worst is almost over! And tube- stop flipping!

  8. What a relief to read that the end is in sight! Your routine leaves me speechless while your strength continues to tweak my heartstrings with total admiration. Just a quck question for Chemo-Sabe and Nurse Dee. What are the things that you're looking forward to the most upon your return home?

    Bonnie and Jackie

  9. Just checking in to send my well wishes. Noticed the open laptop. Is chemo sabe working between naps :)
    I'm sitting here in my hotel thinking of you both and knowing that in a very short time, relief will come. The burns will heal, the energy will return and the cancer will be gone.
    I know it is tough, but most worthwhile things are. Surely this is worthwhile. Stay strong and keep fighting.
    On my flight today, the inflight magazine had an advertisement for MD Andersen and their Number one Cancer Treatment ranking. My heart felt a little warmer knowing that is where Brenda is going for "the cure". I was a little perturbed that number one still has bureaucratic scheduling issues, but I just let that go.
    Anyway, the ad talked about their accomplishments and accolades. Well done, but most striking was their tag line - three photos of apparently ordinary people doing ordinary things. The exception was each had a cancer diagnosis under their photo and a red line through the diagnosis. The ad announced that these three individuals were still here to help them celebrate their accomplishments. That really warmed my heart because I immediately saw Chemo sabe's face in that photo shoot and a very thick red line through her diagnosis.
    Dee, I tore the ad from the magazine and spent the next few minutes trying the find the best Brenda photo (perhaps we should not call her Chemo sabe for her marketing debut) for her spot in this ad. The page will be in the mail as soon as I get home. My gut has not wavered - she is going to beat this disease.
    Keep thinking positive thoughts, think Motu Day in Tahiti and think about Fiji. I know Chemo sabe will probably be photosensitive for a period of time, but I cannot wait to dress her up in the most outrageous hat and sun protective gear imaginable. Think Blue Bonnet in drag. We are not done having fun yet - so let's get through this, get the cure in her pocket and let's get her set for her MD Andersen advertisement close up. I can see it now !
    Give our gal a soft gentle hug from Karen and me. For you a big old bear hug from both of us.
    Sleep well