Wednesday, July 13, 2011

10 Days of Radiation & My EyeBrow Hates Me!

Yay! Today was Day 10 of Radiation. 
10 down... 30 more to go.

Day 10 and my husband's throat on the outside is red. Inside, he says it hurts and hurts bad. Swallowing is beginning to be painful and difficult. The radiation is also kicking his butt. Tired and worn out just to walk to the car. 
 I have read that by Day 12 it will be like entering hell.
By 3 weeks, He will feel like he has a Weber Grill inside his throat turned on to High Roast. Right now, all he has to drink is GatorAde and water. The rest I give him via his tube. I named it Franklin. "Time to feed Franklin."
I am up to giving him 6 cans a day of the Iosource liquid food. It's a breeze. I have the process down to 10 minutes per can and or feeding.
Tomorrow begins Chemotherapy.

Why has it taken this long to begin the chemo if chemo kills the cancer cells? That has been my burning question since this whole nightmare began. If radiation shrinks the tumors and chemo kills them... Why the delay.
You will never believe the reason WHY.
Yes, money.
We have insurance out the wahazoo.  3 different polices to supplement the one before it. None of the three would approve the chemo since they had never heard of Large Cell Undifferentiated NeuroEndocrine Cancer. 
Right... They think we are faking this crap or what? We needed to start chemo 2 weeks ago!

Cancer is big business. Really big business and we are just one tiny cog in the wheel of how this money making machine works. So... Until they approved it today at 4:45 we weren't able to get the treatments. Amazing and so sad.
Not that anyone wants to worry about money when your health is concerned but just for the Emends Capsules to fight nausea, those must be taken for three days and one packet of 3 capsules is $375.00 to be given once a week for the next 5 months.  
$10,000.00 just to keep from puking.
Sigh, tomorrow is the big day.
Radiation treatment at 10:00 a.m. then right to the Chemo lab to sit for 6 straight hours of chemo therapy. The chemo port is in place.  It has a wire that runs into the artery under the collar bone and into the main artery that leads to the heart and sits there right at the top of the heart. "Why can you not take chemo in the wrist vein?" I asked the doctor. 
"Because it would shred them in 10 minutes. This Cisplatin is a tough drug. Much like Mustard Gas. It keeps cancer cells from dividing and kills the bad cells but unfortunately kills good cells as well. I just want the dirty bastards gone!

In the meantime, I had to go to the doctor myself. I REFUSE to ever go back to our family doctor because of that witch secretary and have no time to search for another family doctor so I called my Gynecologist. He ordered chest x-rays for a persistent cough. I truly believe it's all stress. 
Today I laughed until I cried. 
I was telling my husband as I coughed up a lung that I hope this x-ray shows nothing. 
He pipes up and says "Oh Lana, I cough all the time and it's nothing to worry about. Trust me."
I peered up at him and lost it! 
I am going to take medical advice from a man with a chemo port, feeding tube, tumors the size of life vests in his throat and two rare forms of cancer? Ha! I'm not sure why but I found that hysterical and most especially so since he was dead pan serious!
It was good to laugh. I thought I had forgotten how....

Speaking of stress... I now have this bewildering twitch in my left eyebrow. 
OMG. I sit and talk to doctors and nurses and techs and the entire time they are explaining upcoming  procedures to me, my eyebrow is twitching. Tic tic tic. It's so hard to concentrate while my eye is going all over the planet. I feel like such a dork. tic tic tic.
I wonder if they notice.
As the day it goes on it gets worse. tic tic tic..... Argggh. All day long! My eyebrow doing the booty dance.  Salsa.
Have some chemo and knock it off! Lame eyebrow. 
I swear.


  1. It sounds like Henry is starting through a real hell with chemo on top of radiation. He'll never forget how strong you were and how you were his support when he was at the bottom. You are a dear, sweet, very strong woman and you'll get yourselves through this.
    Love to you both, Vicky

  2. There's a whole LOT of us out here sending up lots of prayers & sending positive, healing vibes & energy your way!! I hope all turns out well for you, too, dear Lana! You MUST take care of YOU so you can take care of Henry! Oh, and the twitchy thing ... I get that often, and I think it's stress related. And yanno, they say laughter is the best medicine!! Find some comedic books, CDs, DVDs, or something, that you can read to Henry or watch with him! Lots of Comedians on YT, yanno! Anything to lift y'alls spirits!! ;0)

  3. Oh sweetie!! I'm so sorry to hear all of this. It breaks my heart and makes me sick to my stomach. My Mom, Sister and I battled the same thing with Doctors and Insurance Companies when my Dad was battling Cancer! My parents too had to pay $10,000.00 for some nausea drug that in turn my Dad was allergic to and caused him to break out into terrible oozing blisters all over his body!! He to them had a rare form being Pancreatic Cancer they're very text book about it! And basically told us he's gonna die in 3-6 mos peace out!! Well, we weren't gonna take that so we sought out specialists and took him to UCLA!! We've found that with rare cancers you have to seek a specialists whether it be at UCLA, John Hopkins, Cancer Centers of America, or MD Anderson! They're so advanced with treatment and so on! My Dad lived for almost 2yrs when they gave him 3-6 mos! The thing was is that in the end he ended up in a 'regular' hospital and they did NOTHING FOR HIM! He's was there for over a month and they never even gave him Chemo, etc!! It was a horror story I can't even being to tell you! Please just know I'm praying for you and your husband!! Try to seek a specialists or University Hospital or one of the ones I listed!! I'm so sorry you're going through this sweetie!! If you need to talk just send me a message, I'm here for you!!

    XOXO, CC

  4. Lana~

    I had to laugh at the thought of your dancing eyebrow. I have had that happen to me too...only it is my! It happens at times when I am exhausted or very stressed and I can imagine that you are both of those things right now. It will go away as randomly as it showed up!

    Love you, pretty girl. My thoughts and prayers are wrapped tightly around you!

    Kisses abound on your sweet face~~Karen

  5. Just makes me sick to see people work most of their lives and pay for medical most of their life and then when you really need their health insurance they don't want to pay!!! UGH!!!! That's just awful. Well on a more positive note... sometimes laughter is the best medicine along with prayer of course :) xoxo

  6. Henry sounds like a man I'd like to get to know!!!! Funny, but doesn't know it.

    Positive vibes to you both from the New Orleans girl.

  7. Lana ~ That insurance mess makes me so darn mad! I can only imagine how you two feel!

    What Henry said in response to your cough comment made me laugh too :) Don't know if you know it, but Tammy (uppiesbeads59) mentioned you and Henry in a video. You have so many people pulling for you!

    Love to you both, Mary Sue

    Oh...I get the Crazy Eye Twitch when I'm stressed or exhausted. It's annoying!

  8. Lana ...It just makes me sick about the way they "decide" if your husband needs Chemo ..I mean What do the Doctors know ..just make an appointment with your insurance carrier and let them diagnose you and then order treatment. It is sad that things are that way. I know you will be strong through all of this . I know Henry is very very blessed to have you in his life. I am sending you positive energy and Lots of Love and Prayers . Love you dearly ღ Susie

  9. My eye did that for months one time, just the evil stress causing it, but damn it was annoying. Sometimes I would just want to punch myself in the eye. I'm still hearing, lighting candles and praying. Insurance companies are a pain, as an ER nurse I've had to fight with them on the phone. I've had them request to transfer patients from the ER to another hospital, because we weren't on their HMO or PPO list. I not so politely they had to pay if the patient wasn't stable enough to transfer them. But now I live with socialized medicine and it isn't any better, some things they just won't cover. I guess the moral is, you have to fight for proper medical care wherever you are, that's why it's so important to do as y'all have done, and educate yourselves, knowledge is indeed, power.

    Please light your candle for Lana and Henry here:

  10. "Hear" not "hearing". My keyboard must be broken. :)

  11. This is such a tough time for you both but each day youre getting a step closer to getting rid of this thing.Onwards and upwards. Carole x

  12. 1. try making gatorade popsicles. might help numb the throat. avoid red gatorade...hard to tell if he coughs if blood or not. Once he starts chemo, his blood counts will drop., making him at risk for bleeds. Watch for bruising. He may need a transfusion if he is getting rads and chemo

    2. as for the insurance. dont put up with any crap. Lots of things you can do (i know a pain when you just want to tend with your hubby). You can have your oncologist contact the insurance medical director and speak directly. Avoid alot of bs paperwork. use the ombudsmen if you have to and also use some of the advocacy groups. cancer society and candelighters can provide you with some great resources

    3. you are right cisplat is a tough drug, but good drug...makes sure he gets lots of fluids. It can affect the smooth muscle of the bladder and you want to flush out the chemo from the urine. they will also give him meds to help protect the bladder.

    4. he will feel crappy when getting the chemo and then about 7 days post. make sure he takes his zofran ( or any other med for nausea/vomiting. no being tough. take it around the clock until he can figure out what he needs. he doesnt want to be throwing up with a raw sore throat.

    5. did they order him nystatin for his mouth? he shouldn't spit it out..should swallow it..because that sore throat usually goes right down the esphagus and it will help with thrush. check with your doc if it was not ordered that way. Hospitals also have these lemon gycering swabs on a stick that are nice for him to suck on ..see if they have some

    6. I have seen your bed in the videos..looks awesome. If when he gets weaker, see how it isfor him to get he loses weight with the chemo and rads, he may be more prone for pressure sore and pain. You may want to look for a bed topper, or maybe an alternate bed until he gets stronger

    7. check and see if you can get a occupational therapist to come and assess your home for you. they can give suggestions as to what may make it easier for him to get around the house (eg a higher toilet seat. easier to get up. a bath chair, to avoid falls in the tub. ) help to keep in him that he has some independence even if he may be a bit resistant at first

    8. Did they link him with candlelighters? great support group if in your area. not only for him but you.

    well just a few suggestions for you to consider and consult your md.
    take care lana. You and your dh are in my prayers

  13. A good stress "B vitamin" supplement formula from the health food store will help the twitching. If you don't get any results, increase it slightly until the twitching stops.

    Also, when your husband is well enough to eat real food, you might want to look into the Dr. Weston program which I believe is the optimal way to eat and stay well.

    God bless.

  14. Oh Lana, insurance companies and their money. They all make me sick. We went through the same thing with Dad. Some of the bills he got (and he had insurance!) we so full of garbled English, I don't see how anyone could read them. I swear, if they could have charged him if he passed gas, they probably would have! Just know that we're all out here, praying and hoping for the best for you and Henry. I have to agree with those who say laughter is the best medicine. I know it's so easy for me to sit here and say that...I'm not in your shoes. But I was once. I felt lower than a snake belly when Dad started his radiation/chemo, but the laughter will come again. The best thing in the world to me was to see him laugh. I visited him one day on my lunch hour and he told me he couldn't sleep so he turned on the little radio that was on his bed. He said at three in the morning, he heard his least favorite singer! He said "If I wasn't sick before, I was then." His sense of humor, and he had a great one, really impressed me. He was one in a million like your Henry. I'm sending you sparkles, twinkles, confetti, pixie dust, hugs and light. God Bless You and take care. P.S. I'll also add extra prayers that you're ok, too!

  15. The twitch is likely anxiety-related, love, which would be understandable. In my practice we see patients but also their loved ones who are going through their own brand of hell. Are you sleeping? Eating? Please take care of you, sweetie. I know it's hard. Continuing prayers for you and Henry <3

  16. Hi Lana, another tough day for you and Henry but you are still keeping those wonderful spirits up. Give him a gentle hug from me and a big strong one for you! It's amazing how stress shows up on our bodies. My friend said her eye twitched for 2 years after her divorce. (she was kidding of course!) I hope you get a good report from your doctor. Lots of love, Lana! Connie xoxo

  17. Ciao Lana,

    I am still praying for you and your husband, and just stopping into see how things are going for you. Although things are still not at their best, it is good to laugh in the midst of it all, it sometimes keeps us sane.

    Keeping you in my prayers at all times my dear sweet friend. Keep strong!!

    Hugs & Kisses

  18. Dearest Lana, It's a rough and tough ride you and Henry are going through but you will both come out in one piece with your love for one another and your humour. Even as little as a month or two ago, if someone told you you would be able to feed your husband through a tube you would have been horrified and here you are, more efficient than any waiter or nurse feeding those precious calories into your even more precious husband and quicker than we can do our eye make-up sweetheart!!! The human body and mind is something extraordinary Lana, we surprise ourselves during times like these, finding the strength to go on and room for laughter along the way......this is what we are all praying for and will continue to pray for. You'll get through this, oh yes you will. Something my dear mother told me Lana while she was having her chemo and radiotherapy.......there is no denying it is draining, exhausting and she felt she was battling physically AND emotionally but the fight was worth fighting for and all the pain that came with it was as she put it, like a piece of cake, when she compared the pain of leaving us and not being there for us. Life is worth fighting for Lana, especially when someone is loved, adored and knows it. WE all love and adore you, we cherish each and every one of your videos and the genuine, warm, adorable person you are in them. Our prayers continue for you and Henry........God doesn't ignore our tears Lana. Warm hugs to you both, Leyla xxxooo

  19. P.S. Your eyebrow twitch is just a nervous thing - good for you it's only one that's twitching otherwise you might be accused of giving off the wrong message sweetheart!!! The more you think about it, the worse it will get - ignore it, it's insignificant. As for your cough? Henry's response is hilarious without him even meaning to be. What a man bless him, what a card. Warm hugs and prayers. Leyla xxxooo

  20. We are all praying so hard for you and Henry. Keep up your own strength Lana. The one poster told you about the Gatorade popsicles, what an amazing idea. You have all of us pulling for you out here, God will work a miracle. Just know that is true. Like I said before you just don't realize how many good people there are in this world. Take care.

  21. Oh, Lana, what a kerfuffle with the insurance company. Here in the UK where we have free health care, people really, really don't know they're born. Of course, the free health care doesn't supply all the top-notch treatments that a person with cancer might need, and that's why desparate people have to fund treatments they can get in other countries like the US. So one way or another, sourcing funds for treatments is something we really shouldn't have to do.

    I've always wondered why we pour billions into medical research which, when a 'miracle' treatment is found - nobody can actually afford to have! We can look but we can't touch.

    It's a funny old world.

    Every day, I think about what your husband Henry is going through and say a little prayer for him - and for you. Your eyebrow's dance is a sign of stress and tension - obviously! Your cough is probably another sign and anyway, hanging round is hospitals is not healthy!

    Prayers & hugs
    Lou xx

  22. Dearest Lana, I have been awaiting an update.
    Thank you so much for taking the time.
    Make sure you are taking your vitamins, drinking H2O, etc.
    Henry needs a strong, healthy nurse. A dancing eyebrow is a must! :-)
    Keeping you in our prayers,
    G-D bless,

  23. I'm there for you in spirit Lana, though not able to hold your hand. Or your eyebrow down in place.

  24. Oh Lana, hearing about your cough and twitching eyebrow just breaks my heart. You are at the top of the stress charts. Please, please, take care of yourself. I know you will shake your head and ask how can I worry about myself when Henry is so sick. The answer is, Henry needs you well, and you need you well. Please GO to your doctor, take care of yourself sweetheart. Yes, the road ahead is long, but we are all praying for the sunshine at the end. Hugs, Deb

  25. Lana, I heard that a multiple B vitamin supplement with vitamin C will help with twitching.

    While you continue to 'feed' your husband.........don't ever get lax with using sterile technique. It is MOST important that everything remain sterile, especially since he is having chemo and radiation. His immune defenses will be down and you don't want anything 'dirty' to get into his blood stream. Ask a medical person who taught you what to do or a knowledgeable medical person on proper sterile technique and make sure you follow them ALWAYS. (Disposables are good as they don't require cleaning and are always sterile...unless you touch them with ungloved hands!!!!!!)

    You are doing a GREAT job. Hang in there and keep it up.

    P.S. I know this is not the time to say for sure have a natural talent for writing. I never thought I would be intrigued when reading about a person discussing their beginning adventure with cancer. But I was. Your writing talent is indeed a gift. Use it.

  26. Hi Lana,

    I check for your blog updates every night to see how things are going. Isn't it funny how invested we become in the lives of people we have never met? Many of us, I'm sure feel as though we know you through YT. I'm glad Henry is getting his Chemo finally and that you are getting moments of laughter. You are such an inspiration to me. Your strength and love will get him through this.
    Keep fighting and Keep Laughing.

    Hugs to you, Henry, Izzy and Paris


  27. Positive thoughts and prayers coming your way.

    Hugs, DeDe

  28. I get so angry when I think people in your position have to fight red tape and insurance companies. Like you said, do you think we are faking it????
    Anyway, again, my prayers are constant for you and for Henry. Hang in there and like Deb said, please take care of yourself. You are one in a million and we all want you healthy. Give Henry hugs from all of us. xoxo Jeanie Yayayoga

  29. It's always better to laugh! I hear you on the $$$. When my mom started chemo I went to fill her RX for the ant-nausea drug, and the clerk said, "that will be $575". I said, "no she has a prescription card" and she said, "the insurance won't approve it without a doctor's letter saying it's necessary". "Um, he wrote the RX, doesn't that mean he thinks it's necessary?". Unbelievable. But on the bright side for you - at least you got in to see the oncologist right away! It took two months for my mom to get her first appt - all the while i was thinking the same thing as you - shouldn't we be getting this started?

    Laughter IS the best medicine!

  30. I'd just like to say that Henry is a very lucky man to have such a wonderful woman like yourself Lana. Someone to be there while he goes through such a difficult time. Regardless of everything I think the most important part of this for him might be that he has someone there for him. I know you feel as though you can't do too much in this situation and you feel helpless, but you're what's going to bring him through all of this the treatments and horrible times through out this process, you and your family just being there to support him will make all the difference. And while you support him we'll be right here supporting both of you.

  31. Ohh..Lana....thank you for the update. Yes..laughter is the best medicine. I have a chonicillness and I've been watching "Mr.Bean" a british comedy. Perhaps you can try headphones with relaxing music during treatments, auroma therapy works too.. always thinking of you both...

  32. Dear Precious Lana, Thank you for keeping us updated as you go through this journey. Henry is such a witty guy. He is so lucky to have you in his life. You are going to make certain that he never gives up--and you will both win this battle--together!

    Don and I bought our first house ever in 2009. The Realtor's husband had the same cancer that Henry has. He beat the cancer-- and came along with her to show us this lovely little home. It was difficult to believe that he had been that sick, because he is now so healthy and active.

    I'm sorry that the Insurance company is giving you such a difficult time. I'm thankful though that they finally approved Henry's chemo treatment.

    Please take care of yourself, Lana. Make certain to eat some of your favorite foods. Try to do at least one thing each day to pamper YOU.

    Remember, Henry is probably more worried about you than he is worried about himself. It will make all the difference to him to see you remain healthy. You are always in my prayers!!!


  33. Lana I just cry for you and your husband. He's going through hell right now and so are you. Please let people help you. I was reading the comments and there's so much good information in them. Always ask the doctors for help with insurance. Can't believe the idiocy of the insurance company. You really have to be strong and angry to deal with everything. Today is the day my Mom died 23 years ago. I miss her still. I had to fight for her also. I'm a very shy person but when it comes for my loved ones I will fight to the heavens for them. Keep up your humor.Watching a funny movie always helps. I was in hysterics and went to my brothers. He dried my tears and hugged me. The TV was on and the movie The Odd Couple w/Jack Lemon & Walter Mathau was on. I love the movie and was laughing like hell very soon. Made me feel so much better. Maybe TV & movies are the last things you feel like watching. Watch something funny it does help. I had to laugh at what Henry said about your cough. Don't forget your health. We don't want anything to happen to you. You need all your strength. God bless you both. Feel the arms of God and all your readers and watchers around you. We love you both and are praying hard.

  34. Sending love, love and more love (must be getting sick of hearing that) but mean every it every time I say it. I scan numerous times a day looking for your updates. Think you you and Henry all the time. You have so many wonderful people praying, sending positive vibes and routing for you two - can't believe some of the fantastic and caring suggestions/responses. Makes me proud to be among your adoring YT family. Take care of yourself - B Vitamins, vitamin C - a good multi, to keep your strength up (and aid the stress levels).
    Hugs xxxxxx Eva

  35. Oh Lana i so know how you feel about insurance companies my mother God Rest Her Soul went through the same thing. My mom ended up with multiple pulmonary emboli and it did much damage to her heart and lungs, she ended up with PPH (primary pulmonary hypertension) was told she would need a heart and lung transplant. She needed a drug that was administered under the skin a continuous subcutaneous infusion. We went through hell getting that drug for her it was several months wasted on the phone fighting with the insurance to several letters written to the insurance company and everyone else under teh sun that we could think of. After 6 months of denial they finally gave in and gave her the drug. The drug cost ALOT several several thousands of dollars for a month. But my point is that these insurance companies suck!!!!!!!!!!!! what the hell do you pay for insurance for if you have to fight for what you need to live in the end??? They dont give 2 shits about your health as long as they keep collecting that premium every month. Much like my mother felt as her health was slipping away every day that she spent fighting on the phone or writing letters to get the medicine she NEEDED!!!!!!!!!!!! Keep fighting Lana and dont let those insurance companies jack you around. They are heartless bastards. Try to keep your self up as hard as its going to be while going through this but you must in order to stay healthy yourself. Drink ensure or something if you dont feel like eating put it in the fridge and make it nice and ice cold. My dad became very frail while my mother was ill and in the hospital for the last time. He couldnt eat, sleep... nothing. Infact at one point i had my mother in ICU and my father down in ER from passing out and hitting his head hard on the hospital floor got himself a nice gash and stitches. I bought him those ensure drinks so he at least got some of the nutrition he needed during the day. We are all here for you. Pulling for you and Henry. Stay strong Sweet Lana. My heart is breaking for you and Henry. I know he is going through hell right now. I can only imagine what he is feeling. I went through cancer when i was in my 20's but not the same kind i went through very vigorous chemo so can relate in the aspect. It will get worse before it gets better but he has a beautiful wife and family that need him. Stay strong strong Lana & Henry. Faith, Hope & Love, Anita aka LaLaBella5a on youtube.

  36. Just want you to know that I pray for you and Henry all the time.

  37. Lana, I know you and Henry can feel our arms wrapped around you. We all love you and pray for you daily.

  38. Lana, your in my prayers. Please take care of yourself, go get a massage, take a yoga class,take a daily walk, learn meditation, get in a support group.Being a care giver is the toughest assignment a person will ever have. To be there for Henry, you have to be at the top of your game. When others offer to help you, let them, they sincerly want to be there. Take care friend,((HUGS)) Klaire

  39. Hi Lana,

    I am glad that you could find a little humor during all of this. You just need it sometimes as it's hard to always be filled with sadness. I am so glad that Henry has you by his side through all of this. Stress is what usually starts the eye twitching and god knows you've had your share of it. i am constantly thinking of you and HENRY and praying that God gets you both through this together. Love, Vickie!

  40. Hi Lana,
    Just letting you know that I am still praying for you and Henry to beat this wretched cancer.I am glad that you are able to find that you have not lost your sense of humour during this difficult period.Stay strong Lana.You and Henry will beat this! You are such a gorgeous,sweet lady with a wonderful sense of humour.So many people love you,Lana.Stay strong.Sending loving,healing thoughts your way.
    Big hugs,Julia xxxx xxxx

  41. Lana,
    Still thinking about you every day. Funny how we can care so much about someone we've never met, but I feel like you're an old friend. I'm glad you're able to maintain a bit of humor, even if it is just for your online audience and about your eyebrows. You have a way with words, and it just spills onto the page.
    May god bless!


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