Tuesday, June 30, 2009

Stage 2, Week 2 is Underway

Morning VP's...I think it was all your collective minds that woke me up this morning yelling..."WE WANT AN UPDATE, NURSE DEE!!!" OK, OK, OK! So here's the scoop for Tuesday morning.

Well, it was a hell of a week last week and it really took us until Sunday to recover. Sunday Brenda and I were just tired of looking at this apartment's wall and she wanted to get out a little...if nothing else, just to have me drive her around. She has just been so exhausted that the thought of trying to sit up for any amount of time in the car was just too much. But she also knew that it was important to try and get up and walk around to get some exercise. Considering how hot and humid it is outside...we headed to one of our favorite Houston locations...the big air conditioned Galleria. We walked and did a little shopping, but as you can imagine, in no time she was really pooped and I needed to get her back to the couch.

So I got Chemo-sabe back to the apartment and tucked her in with her pillows and blanket on the couch. I took off for the grocery store to pick up some supplies and a movie for our evening enjoyment. We rented "Henry Pool Is Here." It's a really good movie about "believing" and "miracles." We really are trying to tap into all that so the movie was really a good one for us. Rent it. You might enjoy it.

Yesterday we were back in the "clinic" mode. Bren had an audiologist appointment at 9:00 am so we had to get up and out much earlier than we do usually. Dr. Hall (the audiologist) was a really, really great guy. We had a nice time talking to him. He was really friendly, funny, talkative, and very informative. Because of the Cisplatin (the harshest of the chemo drugs) Brenda's hearing is being permanently affected. Right now it's in the high frequency ranges, but there is a definite change. We might both be visiting the hearing aid store sooner rather than later!! Most of you know my hearing is going too...we're already asking each other what folks said!! We're quite the pair!! Ha! No one likes loosing any of their senses but that's why God helped brilliant minds create things like hearing aids.

We did have a food emergency on our way back from the clinic after that appointment. Brenda really struggled with her radiation appointment on Friday for a lot of reasons...discomfort, dry mouth, lack of focus to deal with the treatment, med routine off, exhaustion. You really do need the weekend to try and recover. All weekend her system was just "off" and we just couldn't get it under control before Monday. She didn't sleep well at all Sunday night and got up around 5:30 am Monday. She had a bowl of cereal in the morning but it didn't stay with her and by 10:30 am she started getting a stomach ache and shaky. By the time we got home she was in total food, bad stomach, overload. We got into the apartment and immediately got her an EAS Protein drink to help. This was not good at all and just sort of put her over the edge. The good thing was that she got to rest and recover until we had to go back to the clinic for the radiation treatment at 6:30 pm.

Thank heaven, her XRT (radiation treatment) went OK and she didn't experience the problems she had on Friday. You might think, "How difficult could it be to lie on a table while they treat you?" But remember that her head is back, her already dry mouth is forced open by the mouth stent for the entire duration of the treatment (usually 20 minutes) and the thing is almost gagging her without everything else that goes on. Then her arms are strapped down and a big mesh mask is put on her face and bolted to the table. Frankly to me it sounds more like the Inquisition than a treatment thats supposed to help and heal you. YIKES!!! It takes a lot of focus to get through each treatment. I think you get the picture.

So I figured out a system that we can keep Brenda's very delicate system under some sort of control. We talked about her need to eat some small amount of food every 2 to 3 hours. Since she's not eating the volume of food she did before, it was important to get small amounts of protein and calories in sooner rather than later. Than I put together an"emergency backpack" that we can take with us everywhere...especially the clinic where we're usually held hostage for HOURS. So the pack has water, crackers, energy bars, sugar-free gum and mints, her rinses and anything else we can think of. The is constantly changing and so we're really getting good at adapting.

That brings us to today. Bren got a good nights sleep and that makes all the difference in the world. I think all the VP's can relate to that. We got a bowl of cereal with some peaches in her tummy and she's feeling much better today. These are the ups and downs of cancer CURE treatments. Thank the Lord, we only have one appointment today...and that's XRT (radiation) at 1:45 PM. So we'll eat lunch and I'll call ahead to see if their treatment schedule is on time or not. Doing that really cuts our having to wait around. We have another movie to watch..."Bedtime Stories"...so hopefully it'll be an easier day. Tomorrow is going to be a nightmare...way too many appointments that we'll try and adjust.

Tomorrow night Doc Vic arrives and on Thursday, I head back to Phoenix for my union break. Vic will fly home on July 6th and our dear friend Toni will fly in and take over nursing duties until I get back on July 11th. Brenda said that I couldn't have any more union breaks until we were ready to head home TOGETHER with the CURE!! That's just absolutely fine with me. I want to take us home in the worst way but only when she is CURED. AMEN!!

Brenda's over there playing Scrabble on the computer...watch out Vic and Rhonda, the girl continues to practice daily. I think I'll head over to the gym and work out before my soap comes on!!! HA!! STOP LAUGHING ALL OF YOU!!! We hope that your day is wonderful. We send good tidings and blessings to each of you. Thanks for hanging with us through this LOOOOOONNNNNNNNNNGGGGGGGGGG journey! Write on the blog and let us know what you all are up to.

Hugs all around...
Nurse Dee and Scrabble Queen Chemo-sabe


  1. Hey thank goodness for your great orginazational skills Dee... otherwise you both might be going a little bit "crazy"...

    Well it is definitely summer in the High Country.. we actually had to use our AC last week but you know it is a dry heat... oh no but I forgot it is Monsoon season so it is not so dry in fact it is down right humid... uh! And it was 111 in Phoenix on Sunday so with the humidy it will feel just like TX... sorry about that!

    We had friends here last week-end from Tucson (via NM & originally NYC) and did some BBQing and a great trip to LaPosada in Winslow for some fabulous food... yummy!

    My brother is coming this week-end from Prescott and we are doing a BBQ at Marianne & Jan's on Saturday with hopefully a guest appearance from Nurse Dee & mom... film at 11...

    Special thanks for all of the fill-in respite nurses... we love you and you are the best!

    Hopefully today will go smoothly and the week will get easier or at least that is what we are visualizing!

    Lots of Love, Hugs & Blessings for you both,
    CAthie & Evelyn

  2. I'm getting ready for the trip. I heave a few loose ends to tie up and a bag to pack and I'll be on my way right after work tomorrow. Sorry to hear you day is so full tomorrow because a trip to the airport will probably be the last straw. At least there will be hugs!

    Love to both of you!


  3. Dee, your are a saint we are praying for you two all the time. is there anything we can send to help cheer Bren up?
    xxoo to you both

  4. Brenda and Dee...Oh my, we read your recent activities and are over the edge with compassion and disbelief! It makes my recent three day stay in the hospital with pneumonia look like a walk in the park (arrived home last night). However, I have a new appreciation for your life in a very small way. You get every award that's ever been created for bravery, fortitude, courage, humor and determination. Unbelievable has a new meaning!!

    Michele...glad to hear that you've migrated to the Mac. You will never look back! By the way, Jackie messed up her slots score, so never reported it...sorry!

    Let the union break begin, but I do understand that 'dependency' on the well one even more than ever. The count down to recovery continues.

    Bonnie and Jackie

  5. Okay Dee... inquiring minds want to know... which soap are you watching??? come on confess!
    I do have a reason and then I will make a confession... HA!

  6. Peeker,
    We love you beyond words. Don't know what Bren would do without you!!! She is lucky to have you! Glad your getting a nice break, you deserve it! Was nice to talk to you guys :) The wedding went so well but would of been better with both of you there. You were missed deeply! oxoxoxo
    Thinking of you both always, hope today is a good day Sista....
    Love ya

  7. Hi dee and scrabble-sabi,

    Scrabble is my favorite game to play on the internet. I use the Internet scrabble club, just google that,and install the little applet and you are ready to roll. My handle is tennisgal. Get yourself signed on to this site and let me know your handle and I will look for you so we can play against each other. Any other Scrabbleites out there? Join on in, and we can all play together. Such fun and way too addicting. I answer the addicting question with well its good for the brain. Thanks for the update, and I hope the week gets better for our dearest Brenda, and of course the union nurse extadoinare as well. big kisses to both of you.
    love, Jodie

  8. We too want to know which SOAP you watch as i've watched one for years AMC....

  9. Chemo sabe,
    The treatment sounds tough. Mask sounds like it "could" be a bit of fun in a different context. The waits sounds ridiculous, yet the process - plan to a cure - sounds in tact. I am on board. (Just bring the mask:)
    I giggled at the directional signs and thought, how clever of our Nurse Dee to think of our friends from OZ. She included a 'keep to the left sign'. That was so considerate of Kim and Wendy and their need to deviate from the norm and drive on the left. Wendy - I still have to drive on the left side of the car. Safety first :) BUGGER!!
    I am a tad bit scared about the thought of Dr. Vic and Chemo sabe alone. Health wise - no issue. Devious - many issues. Although I have a funny feeling Cal is behind a lot of the antics with the 'Marshall Vic videos, I am still concerned. Add to that - flip video, digital camera, etc., now I get worried. If I see a video of a bald broad, sitting on a commode, spitting
    Here's to the end of week two.
    Dee - travel back home safely.
    All involved in taking care of our gal, rest assured that you are always in our hearts and our thoughts. Travel well. and Chemo sabe - get well!!!!

  10. Okay true confessions... about 30+ some years ago I met at work and became friends with someone who got one of the original acting parts on AMC - since I worked nights at the time I would watch it all of the time and over the years I would periodically watch (although I have not done so for the past few years) to see what was going on even though my friend had left the show fairly early in its production to do movies... So time for others to 'fess up!

    Wishing Dee a safe and pleasant trip back to AZ... Love & Blessings... Cathie

  11. OK...OK...OK...Here's my confession but with an explanation!! I come from a long line of soap watchers. My Grandmother started it and my Mom followed suit. When my Mom and I were in Denver in the summer of 2005, taking care of my brother and getting his house ready to be sold, Mom had to stop our work and watch "her program." It was "The Young and the Restless" and I watched it with her as an excuse just to sit and relax a little. OK...so I got hooked and still use the silly show as an excuse (well maybe I just like watching all the crap going on in someone else's life!!...) to take a break out of the day's activities.

    Hey! Wait! I'm retired!!! I can take a break whenever I want to. But I do have a new job these days and my nursing duties do demand a lot of my time and attention...the patient comes first!!! A nurse's work is NEVER done.

    Vic is here and we've had a great time this morning just laughing and talking. We'll head out to the airport in another couple of hours. Bless Vic's heart...she's brought some recipes and they've already talked about what Brenda can eat. I've gone over all my charts and logs with her, the schedule for the upcoming week, and the needed dressing changes for the PICC line. Hey Karen...is there anything else I have to do when I change shifts with other nurse???

    OK...so now you have my soap confession...OH! I also watch "The Bold and the Beautiful" on occasion but that one is getting totally stupid...hell...they're all totally stupid, but why do we keep watching them?? Ha!

    Keep smilin VP's
    Nurse Dee

  12. Hey Chemo sabe and Marshall vic,
    By now nurse Dee is on her union break and you two are hopefully not causing any trouble.
    This should be the end of week two and I was wondering how you were feeling. I was also curious about the recipes. Care to share? Not that I would cook myself, you see, but I have a pal :)
    The past few weeks at work have been absolutely horrendous. I'm bored but as busy as heck. I absolutely hate end of quarters as all the animals spring from their cages and wreak havoc; and that is just my co-workers. The customers are even nuttier.
    My new mission is to find a new job. I think I want to do something totally different and stimulating. Thank goodness the market is stable and jobs are plentiful - right?? Karen's daily mantra is - "please do not do anything unless you already have another job lined up." I keep promising I won't but I hate being bored. Anyway let me not bore you with my occupational issues when I can bore you with other things.
    Oh wait - compared to soap operas my work opera might be refreshing ;)
    This is the Fourth of July weekend when fireworks and b-b-que's abound. I am not a firework fan, mostly because I can't stand people (goodness - I am crabby today), but I do like to eat. NY has decided to host the fireworks this year right on the Hudson River. sounds wonderful right? One would think but that means everything in NJ that is near or can see the Hudson will be on lockdown. If I want grilled food, I will have to be at my Mom's no later than 9am and stay until after the fireworks. I am just not sure I am that hungry. I am thinking we will stay home and do absolutely nothing. That is very enticing.
    How is everyone else planning to spend the long weekend.
    Oh and I have not had a lot of time to play my slots, but I am at $11,525.25. How is everyone else doing?
    Okay I will try to sleep now in hopes of waking up in a better mood. Think Tahiti, think Tahiti, think Tahiti, think Tahi zzzzzzz

  13. This is Doc Vic checking in. Nurse Dee left me with a book of instructions and I was so overwhelmed I flushed it down Marshall Vic's toilet and Brenda and I went shopping. I'm working on a Beck's buzz right now and thought I'd check in. Seriously, Brenda looks great and is an absolute trooper. She had radiation this morning and then we went through McDonald's drive through for an ice cream cone. She says that it tastes and feels so good going down. Yesterday she had one on the way to take Dee to the airport and again after radiation. She's walking on the wild side.

    I talked to my cousin Marshall Vic yesterday and she has some more advice for Chemo Sabe so stay tuned.

    As for Michele worrying about what trouble we might get into here.....just mind your own business! You're just jealous you can't join in.

    Doc Vic

  14. Okay everyone, don't let the nurse fool you. She watches those soap operas every day and looks forward to the Young and the Restless and Bold and the Beautiful. I have drama sensitivity and get enough of it at work and don't need to watch it on TV. I have to laugh because it is so hokey and all that I can say is, "DeeDee" in a what the hell tone. She's right her grandmother was hooked and now her mother is totally hooked. When Dee can't see the Young and the Restless her mother takes notes for her, especially on Fridays. She said that you can't miss Fridays because that's what hooks you for the next week. I have to laugh. She deserves every soap opera she ever wants to watch because she is growing her angel wings by taking good care of me.

    I call Dee Nurse Ratchet and she trained Vic so well that I have dubbed her Dr. Ratchet. Toni is coming for shift relief on Monday as Dr. Ratchet flies home and I am already calling her Student Nurse Ratchet. Last night I was barely done a small meal and Dr. Ratchet asked if I was going to brush my teeth and rinse. We laughed and she was given a new personality, Dr. Ratchet.

    Radiation is doing a number on my mouth. Imagine not being able to produce saliva and then put a cotton ball in your mouth. If that's not enough imagine all of the muscles in your mouth tighten and constrict to the point that you can't open your mouth more than an inch or so. Then add a few sore spots like swallowing diamonds. Yep, you got the picture.

    Since my ability to swallow is getting worse in a quick way Dr. Ratchet is going to make me home made macaroni and cheese with a bread pudding desert. I need a lot of liquids to get soft foods down. This is a recipe Cal's mother used to make. I am game for anything that is protein and is something that I can get down.

    My entire medical team thinks that I won't be able to go the full 7 weeks of radiation without needing a feeding tube in my stomach commonly called in the medical field a PEG tube. It is a minor procedure but it will allow me to add nutrients like Ensure through the feeding tube. I can also keep up with my hydration through this tube. I called my nurse practitioner today and said lets see if we can get it done next week. I am coming up from the chemo and would prefer to do it before my next round of chemo on July 13th. She is going to work on it for me. She has been taking great care of me and said that most people who get PEG tubes say that they waited too long to have it put in. I don't want to get to that point and by the time that I would need it I would be in chemo week and those are brutal. This is not something that general anesthesia is required. They put you in twilight and use an endoscope to put it in.


  15. Otherwise I am hanging in there and doing the best that I can. Nurse Dee really needed to rejuvenate herself and I am happy that she could go home and take care of things there. She really needed a perm and that makes her feel better.

    Radiation is another trick with sinus cancer. As soon as I am on my back with the stent in my mouth my sinuses want produce a thick mucous. Then I am locked down to the table with my mask and my wrists are bound to pull my shoulders down. Then have a dry mouth...well, some days are really tough to get through radiation. I am learning to trust guided imagery and keep myself relaxed. The good news is the tumors are responding to the radiation and chemo. They initially were over an inch to 1.5 inches in diameter so they had a long way to go. I visualize the tumors melting away and pray, pray, pray as I go through radiation.

    I am getting 35 treatments and have 26 more to go. Dee has a calendar that I can scratch off every day for motivation. She also has the most anal retentive logging system in a binder for me or the care taker to mark off to insure that I am doing everything that I am supposed to do. I give her grief about it but quite honestly this chemo brain could not remember it all. She is my angel for sure.

    Enough about me for now. I love hearing what other people are doing because it brings some normalcy to my life. Life goes on even though I am in Houston Texas.

    To the Aussies I loved the NY scratchers. I didn't win a stinkin' thing but the thought is so appreciated. Dee purchased some Mega Lottery tickets and the drawing is tonight. If we win the village is going to celebrate in a good way. If not, then we are going to buy some more. We just couldn't spend it all in one place. So thank you to everyone!

    Jackie, I am so glad that you are out of the hospital. I would give you a big hug to get better. Feeling puny pretty much sucks. I am glad that you are better. I will never take my health for granted. I thought that I learned that when I had a really bad case of Valley Fever, you know that southwest disease? It is an air born spore that is a fungus and wreaks havoc on your immune system with all sorts of fevers, joint swelling, pneumonia, rashes, ear infections, etc. Now I have a new appreciation for good health and living. You hang in there girl!

    I must have a slot machine that's not recession proof because I can't seem to get past $4,000. I go up and down and that's all that it does. That said I can't win more than 2k on my slots. I will keep at it because it is a great distraction for me. I can't retain anything that I read so the mindless slots keep me entertained. I listen to a book on it as well so it is my friend especially during chemo. Thanks to everyone that sent that to me!!! I love it.

    Well that's enough blabbing for now. Michele you hang in there with your boredom. You can come back and see me anytime you want and we won't be bored. Good god with that brain of yours I don't know how you don't keep yourself entertained all of the time. You crack me up. I also know that brilliant people need to be challenged so you go girl if you can find something to challenge that brain of yours. :-)

    Love to all of you. I thought that I would jump in here after Michele wanted to know what we all were doing for the 4th and what we are cooking. Dr. Vic is also Chef Vic so I am the luckiest one for the 4th.

    love, chemo sabe

  16. Brenda...Thanks for your upbeat report and comments to all. You are brave beyond words! We need to encapsulate your attitude and sell it for a fortune. I'm still recovering from pneumonia, but am determined to take a planned week to California on Monday with Jackie to celebrate her birthday on July 7th. We're staying in Big Sur, she'll hike (unless I have a sudden burst of energy), visit the area, continue on to Carmel and end up in Napa with friends who have a place there. If our lips are silent, know that we are thinking of you while you take those baby steps to our mutual goal...the cure!

    Bonnie and Jackie

  17. Okay to the important items first... you tell Nurse Dee to just program that DVR to record all those B&B and Y&R episodes and then she can just have her own little marathon & blip out all of those intruding commercial! HA!

    Now for my favorite Dr. story... when I was very young (between 6-10) I had a series of strep throat episodes and the doctor's prescription (he actually wrote it out for my mother) was that I could have as much ice cream as often as I wanted (yippy) and I should suck lollipops to alleviate the sore throat and could eat jello, rice pudding, etc. for the same reason... needless to say I milked that sucker for all it was worth... although truthfully I was not a happy camper most of the time... so now when I'm not feeling well the first thing I want is ice cream! Maybe you can get your doctors to write you some fun scripts!

    Sooo I can't even image how bad chemo sabe is feeling... but I say... comfort food, comfort food, comfort food or what ever works and keep up those visualizations because I really believe they work wonders.

    Well we are off this afternoon to Marianne & Jan's for a big cookout and the challenge will be to get there since Payson is having this all day affair with parades, events, concerts & fire works along Main St & Green Valley Park and they live on the other side of all this & you know how few roads go there but it should be fun. Well I know Chef Vic will knock herself out cooking up a storm for you.

    Hoping every one has a fun-filled 4th!
    Blessings & lots of Love & Hugs
    Cathie & Evelyn