He's eating well. Still weak but he looks so much better.
Rested mostly all morning but walked to the mailbox in the afternoon!!! Our mailbox is quite a trek!!!
Saturday, November 29, 2014
Friday, November 28, 2014
Update - Nov 28
Still having diarrhea this morning.
He's so weak. Took a shower, stayed mostly on shower seat. Said he wondered if he was going to be able to get up to dry himself off.
Appointment with Dr. Assikis –
Dr Assikis is astounded that Rudy doesn't need pain meds after just one week. He said he wasn't hoping for that til week three or maybe two at best.
Dr. Assikis said Rudy is very sensitive to chemo - no surprise - and the next will be less strong. He'd rather see slower results with less upset to Rudy.
He had suggestions for getting his system back to normal. The main issue right now is diarrhea. He'll avoid dairy including ensure and no sweets. He'll eat breads rice and meat to bulk up. His weight is now 178. Ugh!
He said Rudy was doing great with drinking. Since the diarrhea is still going on he wanted Rudy to go ahead and get more fluids today. Rudy is super weak today. That's another reason dr A wanted to do fluids.
He'll be off pretty much all meds except on an as needed basis. One thing he wants him to stay on is the ear patch which is kind of like Dramamine.
Results came back on the Cancer cells. There are no activating mutations. If there had been we could have attacked Cancer with pills rather than chemo.
He had 2 ham sandwiches today (lunch and dinner) and said they were the best he’d ever had.
He's so weak. Took a shower, stayed mostly on shower seat. Said he wondered if he was going to be able to get up to dry himself off.
Appointment with Dr. Assikis –
Dr Assikis is astounded that Rudy doesn't need pain meds after just one week. He said he wasn't hoping for that til week three or maybe two at best.
Dr. Assikis said Rudy is very sensitive to chemo - no surprise - and the next will be less strong. He'd rather see slower results with less upset to Rudy.
He had suggestions for getting his system back to normal. The main issue right now is diarrhea. He'll avoid dairy including ensure and no sweets. He'll eat breads rice and meat to bulk up. His weight is now 178. Ugh!
He said Rudy was doing great with drinking. Since the diarrhea is still going on he wanted Rudy to go ahead and get more fluids today. Rudy is super weak today. That's another reason dr A wanted to do fluids.
He'll be off pretty much all meds except on an as needed basis. One thing he wants him to stay on is the ear patch which is kind of like Dramamine.
Results came back on the Cancer cells. There are no activating mutations. If there had been we could have attacked Cancer with pills rather than chemo.
He had 2 ham sandwiches today (lunch and dinner) and said they were the best he’d ever had.
Thursday, November 27, 2014
Thanksgiving
Rudy had some diarrhea this morning but no vomiting all day. Yeah!
Miracles never cease. Rudy slept a lot this morning and then we made a very quick visit to his sister's house where lots were gathered for Thanksgiving.
We didn't stay long, but it sure meant alot for Rudy to be able to see his family. He was weak and tired and didn't have the energy to join much in conversation. People who hadn't seen him in awhile were probably worried by his appearance. Those of us who had seen him over the last few days (Nancy, Linda and I) thought he looked so much better.
Rudy came home with a sampling of favorite family dishes. His tastes have changed thanks to chemo, but hopefully, he'll find some things that still taste right. He's only trying a little at a time. Linda's stuffing was the first thing he tried and so far it's his favorite. The fruit mix still tastes good, too.
It's a good thing we didn't stay long. He crashed as soon as we got home. He's still too weak to do much.
Miracles never cease. Rudy slept a lot this morning and then we made a very quick visit to his sister's house where lots were gathered for Thanksgiving.
We didn't stay long, but it sure meant alot for Rudy to be able to see his family. He was weak and tired and didn't have the energy to join much in conversation. People who hadn't seen him in awhile were probably worried by his appearance. Those of us who had seen him over the last few days (Nancy, Linda and I) thought he looked so much better.
Rudy came home with a sampling of favorite family dishes. His tastes have changed thanks to chemo, but hopefully, he'll find some things that still taste right. He's only trying a little at a time. Linda's stuffing was the first thing he tried and so far it's his favorite. The fruit mix still tastes good, too.
It's a good thing we didn't stay long. He crashed as soon as we got home. He's still too weak to do much.
Wednesday, November 26, 2014
More Fluids
Vomiting continues this morning. Diarrhea, too.
Rudy is pumped full of fluids again - 3rd day in a row.
We still haven't seen a doctor - just nurses. When we went in, we were hoping he'd be admitted to the hospital. Surely, the over-the-top side effects are about over.
He was nauseous all day but is beginning to eat just a tad – things like jello.
We're really hopeful that tomorrow we won't need a trip to the ER for fluids and that we can stay home and sleep. That would be something to be truly thankful for!
We'll really miss spending the day with our family, but we know we'll see them all soon. Meanwhile, everyone have a fabulous Thanksgiving and take the time to truly appreciate how many wonderful people you have in your life.
Rudy is pumped full of fluids again - 3rd day in a row.
We still haven't seen a doctor - just nurses. When we went in, we were hoping he'd be admitted to the hospital. Surely, the over-the-top side effects are about over.
He was nauseous all day but is beginning to eat just a tad – things like jello.
We're really hopeful that tomorrow we won't need a trip to the ER for fluids and that we can stay home and sleep. That would be something to be truly thankful for!
We'll really miss spending the day with our family, but we know we'll see them all soon. Meanwhile, everyone have a fabulous Thanksgiving and take the time to truly appreciate how many wonderful people you have in your life.
Tuesday, November 25, 2014
Fluids day 2
Just after midnight another bout of vomiting.
It was time for a Zofran, but he said he didn't want to take it anymore because it made him sick
5am another bout of vomiting. At what point does he get put in the hospital?
6:45am another bout of vomiting
Spent day in infusion room again, More saline – 1 ½ bags. Steroid. Pepcid AC thru IV and two bags of Ativan, which made him talk absolute nonsense. He thought he was installing glass in the infusion room.
He came home and slept and talked gibberish for a while. Then he at a tiny bit of jello. He vomited shortly after – around 6:30. He sipped water a little while later then vomited again.
Today, some wondered if the vomiting was being caused by the Fentanyl 50mcg. No one ever really did more than wonder because he put the patch on Friday around 1 and didn’t begin vomiting til early Sunday morning.
I looked up Fentanyl and vomiting this evening and from what I read, it’s a distinct possibility that’s what’s causing the major vomiting. I called the after-hours number and Dr Menninberger said it would be fine to remove the patch and we’d soon know if that’s what was causing the vomiting. I also wonder – the patch really took care of the pain, but was the 50 too strong to start off with?
Removed patch at 11pm
Vomited 11:20. It'll take 12 or so hours for the Fentanyl to get out of his system.
It was time for a Zofran, but he said he didn't want to take it anymore because it made him sick
5am another bout of vomiting. At what point does he get put in the hospital?
6:45am another bout of vomiting
Spent day in infusion room again, More saline – 1 ½ bags. Steroid. Pepcid AC thru IV and two bags of Ativan, which made him talk absolute nonsense. He thought he was installing glass in the infusion room.
He came home and slept and talked gibberish for a while. Then he at a tiny bit of jello. He vomited shortly after – around 6:30. He sipped water a little while later then vomited again.
Today, some wondered if the vomiting was being caused by the Fentanyl 50mcg. No one ever really did more than wonder because he put the patch on Friday around 1 and didn’t begin vomiting til early Sunday morning.
I looked up Fentanyl and vomiting this evening and from what I read, it’s a distinct possibility that’s what’s causing the major vomiting. I called the after-hours number and Dr Menninberger said it would be fine to remove the patch and we’d soon know if that’s what was causing the vomiting. I also wonder – the patch really took care of the pain, but was the 50 too strong to start off with?
Removed patch at 11pm
Vomited 11:20. It'll take 12 or so hours for the Fentanyl to get out of his system.
Monday, November 24, 2014
Fluids Day 1
Rudy slept for a while overnight, but as soon as he got up around 4am, he felt nauseous. He took a nausea pill and soon after had a horrible bout of vomiting. We're going to get fluids this morning. I'm hoping they will give him anti-nausea stuff thru the IV as well. He feels terrible.
4:45am - He's still getting sick and now having diarrhea as well. He feels terrible. Said he feels like he’s running a fever but doesn't want a thermometer in his mouth
7am - I called the on-call service again. I asked if we could just be at the office when they opened at 8. She said no - we have to call at 8 and make an appointment. ^%$#@! Hopefully, they'll see him fast. I'm ready to go.
I thought about just taking him to emergency, but that process would likely take ages. In the end it may be faster and more efficient to call the office.
We really feel left to fend for ourselves. My advice to anyone having chemo for the first time - do it towards the beginning of the week so if trouble hits, you'll be able to get help from the office without waiting over a weekend.
The on-call PA was nice this morning. I don't want to make her out to be cold and heartless. She said they would likely make a number of adjustments in chemo 2 and that chemo side effects should not be this bad.
7:30am – try another Zofran – it dissolves in mouth – easier to do than swallowing a pill with water, which would likely bring on another attack of vomiting
After 8 - Went to Dr’s office this am. Had IV fluids and Phenergen and Attavan thru IV. He vomited again around noon while getting fluids.
Came home with 2 new Rx for nausea – Prometh/PLO wrist gel and Transderm-Scop ear patch.
He's a tiny bit better after the fluids. I think his color is better, but he still says he feels awful and he's weak as can be. He got fluids, nausea meds thru IV and now has two additional nausea meds that are not oral. One is a patch. The other a cream. We started those around 1pm. They said each of the drugs approaches nausea from a different angle. Hopefully, we have all the angles covered now.
Went 9+ hours without getting sick but sometime in the evening vomiting started again
ALSO - if anyone needs to talk to me over the next few days, text, message or email me and I WILL CALL YOU soon. I'd like to limit incoming phone calls if possible to give Rudy a chance to rest undisturbed. He's exhausted.
4:45am - He's still getting sick and now having diarrhea as well. He feels terrible. Said he feels like he’s running a fever but doesn't want a thermometer in his mouth
7am - I called the on-call service again. I asked if we could just be at the office when they opened at 8. She said no - we have to call at 8 and make an appointment. ^%$#@! Hopefully, they'll see him fast. I'm ready to go.
I thought about just taking him to emergency, but that process would likely take ages. In the end it may be faster and more efficient to call the office.
We really feel left to fend for ourselves. My advice to anyone having chemo for the first time - do it towards the beginning of the week so if trouble hits, you'll be able to get help from the office without waiting over a weekend.
The on-call PA was nice this morning. I don't want to make her out to be cold and heartless. She said they would likely make a number of adjustments in chemo 2 and that chemo side effects should not be this bad.
7:30am – try another Zofran – it dissolves in mouth – easier to do than swallowing a pill with water, which would likely bring on another attack of vomiting
After 8 - Went to Dr’s office this am. Had IV fluids and Phenergen and Attavan thru IV. He vomited again around noon while getting fluids.
Came home with 2 new Rx for nausea – Prometh/PLO wrist gel and Transderm-Scop ear patch.
He's a tiny bit better after the fluids. I think his color is better, but he still says he feels awful and he's weak as can be. He got fluids, nausea meds thru IV and now has two additional nausea meds that are not oral. One is a patch. The other a cream. We started those around 1pm. They said each of the drugs approaches nausea from a different angle. Hopefully, we have all the angles covered now.
Went 9+ hours without getting sick but sometime in the evening vomiting started again
ALSO - if anyone needs to talk to me over the next few days, text, message or email me and I WILL CALL YOU soon. I'd like to limit incoming phone calls if possible to give Rudy a chance to rest undisturbed. He's exhausted.
Sunday, November 23, 2014
Chemo: Anti-Nausea Menu
Rudy woke up 3am and vomited soon after.
Started Zofran (anti-nausea) at 3:50am.
Vomited again around 8am.
Thought the nausea might be over. He had a big breakfast (bacon, eggs, rolls) around 9:30 or 10. I didn't think that was a good idea, but it's what he wanted. He slept a long time.
Vomited 1:50pm. Tried Zofran again.
Vomited 3:30. Called the after-hours number and talked to the on-call physician's assistant.
Rudy now has a 2nd nausea med to take – promethazine (taken around 4:10pm). My mom had this from her cancer treatment a few years ago and the PA said that was what she would prescribe so it’s fine to take it, even though it’s old. The PA advised sticking to liquids for the next 24 hours - like with a stomach flu. She said taking him to ER for fluids was not necessary today, but if the vomiting continued thru tomorrow, I should call the office. The PA also said he'll likely need stronger nausea IV meds with chemo round 2. Plus, we'll be sure to start taking the pill form BEFORE he gets queasy.
He had another bad bout of vomiting around 6pm. I went out and picked up Sea Bands (acupressure wrist bands). Found them at a drug store 20 minutes away! Funny - while there the pharmacist got a phone call asking if they carried Sea Bands. It turns out, it was Linda calling. She was trying to help me locate some.
I'm putting out an all-call in case anyone can think of other ideas I may be missing.
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Started Zofran (anti-nausea) at 3:50am.
Vomited again around 8am.
Thought the nausea might be over. He had a big breakfast (bacon, eggs, rolls) around 9:30 or 10. I didn't think that was a good idea, but it's what he wanted. He slept a long time.
Vomited 1:50pm. Tried Zofran again.
Vomited 3:30. Called the after-hours number and talked to the on-call physician's assistant.
Rudy now has a 2nd nausea med to take – promethazine (taken around 4:10pm). My mom had this from her cancer treatment a few years ago and the PA said that was what she would prescribe so it’s fine to take it, even though it’s old. The PA advised sticking to liquids for the next 24 hours - like with a stomach flu. She said taking him to ER for fluids was not necessary today, but if the vomiting continued thru tomorrow, I should call the office. The PA also said he'll likely need stronger nausea IV meds with chemo round 2. Plus, we'll be sure to start taking the pill form BEFORE he gets queasy.
He had another bad bout of vomiting around 6pm. I went out and picked up Sea Bands (acupressure wrist bands). Found them at a drug store 20 minutes away! Funny - while there the pharmacist got a phone call asking if they carried Sea Bands. It turns out, it was Linda calling. She was trying to help me locate some.
The nausea and vomiting is unreal. I know we'll get this in hand, so I just have to keep telling myself that. But it sure is hard watching him suffer. It's horrible and I feel helpless. There's nothing I can do to help. Surely next time will be better. I'm documenting everything so I can hand it all over to CTCA for Round 2.
The medical oncology community try real hard to make sure patients don't go thru this awful vomiting anymore. I guess the first round is often a gamble. I know I said this before - 1st time chemo patients should not have their chemo on a Friday and be left adrift over a weekend (when offices are closed).
I'm putting out an all-call in case anyone can think of other ideas I may be missing.
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Next time, he'll take the anti-nausea stuff BEFORE it hits. Meanwhile, I'm trying to get organized for dealing with the appetite and tummy issues.
We've already been dealing with loss of appetite and nausea for a week or two because of the pain meds. Now, the pain meds have changed, but the chemo nausea is kicking in. At least we had one good day between.
For chemo patients experiencing nausea and/or vomiting, it's recommended to:
- eat more often in smaller quantities
- avoid things that are greasy or spicy
- eat with plastic utensils if there's a metallic taste
- try things that are cold if smells are the problem
When he knows he needs to eat, he hates me to start naming things. But I can tell he's frustrated because he can't think of anything to have. My solution is to have a menu of snack or mini-meal ideas. I've started working on it. * These are not the high-nutrition things I'd love to see him eat the majority of the time. These are "get something on your stomach that won't make you nauseous" things.
Below is the list I have so far. If you can think of anything else to add to the list, please let me know! * I am updating this list every so often with suggestions from others.
Fruit
- Banana (room temp OR FROZEN)
- Apple
- Applesauce
Breakfast
- Toast
- Eggs
- Roll + Apple Butter
- Pancakes
- Cereal
- Oatmeal
- Grits
Snacks
- Yogurt
- Popsicle
- Crackers
- Orange Sherbet
- Pudding
Drinks
- Gingerade
- Tea
- Water
- Smoothie
- ENSURE
- Instant Breakfast
- Boathouse Farms Green Goodness
Anti Nausea Candy
- peppermint
- lemon drops
MORE
- Cornbread and Buttermilk
- Soup or broth
- Rice
- Baked Potato
- Pasta (plain or with a little broth)
Additional Resources
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| Link to Recipe |
Saturday, November 22, 2014
Fentanyl
Great day. No pain thanks to new pain patch they prescribed for Rudy yesterday – Fentanyl
Knock on wood, but it looks like this may be just the ticket for now. Hopefully, soon, the tumor will begin shrinking and meds can be reduced.
He slept last night. He seemed relaxed and comfortable and seems good this morning, too. Woo Hoo!
Bedtime – he began to feel a tiny bit funny in his tummy – he SHOULD have taken Zofran!
So many have mentioned that they'd like to visit. As great as it would be to see friends and family this weekend, Rudy really just wants to recuperate from yesterday and relax as much as possible while he sees how the long list of chemo side effects plays out. Hopefully, the effects won't be too bad - especially since this is just his first round.
Knock on wood, but it looks like this may be just the ticket for now. Hopefully, soon, the tumor will begin shrinking and meds can be reduced.
He slept last night. He seemed relaxed and comfortable and seems good this morning, too. Woo Hoo!
Bedtime – he began to feel a tiny bit funny in his tummy – he SHOULD have taken Zofran!
So many have mentioned that they'd like to visit. As great as it would be to see friends and family this weekend, Rudy really just wants to recuperate from yesterday and relax as much as possible while he sees how the long list of chemo side effects plays out. Hopefully, the effects won't be too bad - especially since this is just his first round.
Friday, November 21, 2014
Chemo 1
Rudy had his first round of chemo today at Piedmont Newnan today. Linda and Nancy were with us the whole time. It was a long day. We were there from 8:45 to 4:15.
Tuesday, November 18, 2014
Looking for an Acupuncturist
My dear friend, Judy, gave us an amazing care package yesterday. One of the things in it was the book, Welcome to the Cancer Club by Myles Beskind. I have already finished it. It was a really funny take on the "joys" of cancer and included lots of tips for both the patient and caretaker. The sub-title is Surviving... One Laugh at a Time :-).
One tidbit I can't stop thinking about, probably because it's been on my mind lately, is about an acupuncturist.
The following excerpt is about the author's Uncle Joel, a three time cancer survivor, and concerns his experience with his third round -
When I was advised by my oncologist that I would have to go through 5 months of chemotherapy after my hospital stay for Non-Hodgkin's lymphoma, I was not happy but I agreed. At the time I was going to an acupuncturist for something other than cancer. She said that if I came to her while undergoing chemo, she would guarantee me no ill effects from the chemo (she did not promise to cure my cancer). At the end of 5 months, my oncologist sat me down for a final conference.
He said that in all his years of treating cancer patients, especially Non-Hodgkin's lymphoma, he never had one that had zero side effects. I then told him about my acupuncturist. He looked at me and said, "She is full of shit!!!"...
I paused for a moment and said, "That's funny, she said the same thing about you!" (She never said that but I thought he deserved it)
I got up and left him sitting alone... to ponder.
Acupuncture increases the blood circulation in the body. They feel that blood is the healer. I cannot vouch for the theory but I know there is something to it.
I had been pondering finding an acupuncturist for Rudy's pain, but hadn't considered that it might help with chemo side effects. Wow.
Cancer Treatment Centers of America has acupuncturist services, so after mid December, we could go there. However, I'd really love to get Rudy started with one right away for his pain. Maybe one could even help me with my IBS and/or sleep issues.
So now I'm looking for an acupuncturist who is not too far away - preferably in Coweta County or Fayette County, GA. Does anyone know a good one?
Monday, November 17, 2014
I talked to CCTA
CTCA stands for Cancer Treatment Centers of America, but I'm hoping to call it Can Take Cancer Away.
As posted before, I have a number of friends with contacts there and I got a call from one more friend today - Renee - and now the ball is rolling. If there are no snafu's, Rudy should have his second chemo at CTCA - Friday, Dec 12, the same time we would have had the 2nd treatment with Assikis. Please pray that the transition goes smoothly!!!
Renee called to tell me about her contact, Amy, and after several phone calls and emails, Amy helped put everything in motion. Rudy is now in their system, Release papers are being faxed. I have talked to 3 patient advocates and ended talking to a man named Ryan who took me through the whole process. I have been given LOADS of information. Everyone was wonderful.
There were several standout points.
When we go for our first meeting (around Dec 10), we will meet with the lung team, including several doctors from the oncology dept, a nutritionist, a naturopath, and a mind/body specialist. He explained the importance of each one of these people and the inclusion of the naturopath and nutritionist, in particular, will be important for me. Not only will the nutritionist and naturopath tell us what to eat/what to take, but they'll also tell us what to avoid. There are some herbs and supplements that conflict with certain chemo treatments. They can cause side affects, or worse, cause the chemo to be far less effective. He told me an example of this and it touched on the very thing that scares the heck out of me. I am reading about this and that and, to me, it all sounds like what Rudy needs, but what if what I give him is hurting him? I could kill him with kindness! So having the help from people trained in these areas will be wonderful. Even better, they are trained in what is good for you AND what works with chemo!!!!!!!!!!!!! Most nutritionists and naturopaths don't have that extra piece of the puzzle and it's a very important component!
They will have specialists who will be working directly on pain reduction and there are many other options that are less debilitating than hard narcotics and they can be even more effective. Rudy would be thrilled. He wants to drive that Challenger when it arrives!!!
In case you are wondering why we aren't switching sooner, it has to do with an agreement with the state of Georgia. CTCA was required by GA to take at least a certain number of patients from out of state and no more than another amount from GA. I don't know if they are trying to bring in more out of state business or what. The bottom line is they have maxed out their GA residents for November. Since chemo is set to begin this Friday, they felt it was important to not put that off and I heartily agree. A patient feels best just prior to the next chemo, so that's when he'll be brought in for the transition meetings.
One more tidbit that I found sweet - they have what they call a "Mother Standard of Care". They want their people to treat every patient like they would want their mother (or father or child or sibling) treated. From what I experienced today, they are on target.
I want to thank Renee and Amy for their help today! Shirley is also contacting David Kent, who I hope will be able to make sure the transition is swift and smooth. Having his extra push will be icing on the cake!
Also, to Kathy H, Kathy G, and Lorraine - Amy knew Dr Schuler and said EVERYONE loves him. She also knew Bruce love and spoke highly of him, too! It sounded like they must be friends. We have some great contacts and I feel like we're going to be in loving hands.
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| Rudy and I are very blessed. We have MANY people who have special places in our heart! |
As posted before, I have a number of friends with contacts there and I got a call from one more friend today - Renee - and now the ball is rolling. If there are no snafu's, Rudy should have his second chemo at CTCA - Friday, Dec 12, the same time we would have had the 2nd treatment with Assikis. Please pray that the transition goes smoothly!!!
Renee called to tell me about her contact, Amy, and after several phone calls and emails, Amy helped put everything in motion. Rudy is now in their system, Release papers are being faxed. I have talked to 3 patient advocates and ended talking to a man named Ryan who took me through the whole process. I have been given LOADS of information. Everyone was wonderful.
There were several standout points.
When we go for our first meeting (around Dec 10), we will meet with the lung team, including several doctors from the oncology dept, a nutritionist, a naturopath, and a mind/body specialist. He explained the importance of each one of these people and the inclusion of the naturopath and nutritionist, in particular, will be important for me. Not only will the nutritionist and naturopath tell us what to eat/what to take, but they'll also tell us what to avoid. There are some herbs and supplements that conflict with certain chemo treatments. They can cause side affects, or worse, cause the chemo to be far less effective. He told me an example of this and it touched on the very thing that scares the heck out of me. I am reading about this and that and, to me, it all sounds like what Rudy needs, but what if what I give him is hurting him? I could kill him with kindness! So having the help from people trained in these areas will be wonderful. Even better, they are trained in what is good for you AND what works with chemo!!!!!!!!!!!!! Most nutritionists and naturopaths don't have that extra piece of the puzzle and it's a very important component!
They will have specialists who will be working directly on pain reduction and there are many other options that are less debilitating than hard narcotics and they can be even more effective. Rudy would be thrilled. He wants to drive that Challenger when it arrives!!!
In case you are wondering why we aren't switching sooner, it has to do with an agreement with the state of Georgia. CTCA was required by GA to take at least a certain number of patients from out of state and no more than another amount from GA. I don't know if they are trying to bring in more out of state business or what. The bottom line is they have maxed out their GA residents for November. Since chemo is set to begin this Friday, they felt it was important to not put that off and I heartily agree. A patient feels best just prior to the next chemo, so that's when he'll be brought in for the transition meetings.
One more tidbit that I found sweet - they have what they call a "Mother Standard of Care". They want their people to treat every patient like they would want their mother (or father or child or sibling) treated. From what I experienced today, they are on target.
I want to thank Renee and Amy for their help today! Shirley is also contacting David Kent, who I hope will be able to make sure the transition is swift and smooth. Having his extra push will be icing on the cake!
Also, to Kathy H, Kathy G, and Lorraine - Amy knew Dr Schuler and said EVERYONE loves him. She also knew Bruce love and spoke highly of him, too! It sounded like they must be friends. We have some great contacts and I feel like we're going to be in loving hands.
Sunday, November 16, 2014
Cancer Treatment Centers of America
All things seem to point to Cancer Treatment Centers of America right now. I plan to call there this afternoon.
I have a number of contacts to start with there.
The first contact appeared a couple of weekends ago. Lorraine, the owner of Rockin B, sent me this - ... Last week this guy bought a book...long story short... [Bruce Love is a chef at CTCA]. I just asked him if we had someone very dear to us that needed an "in" there would he help..Without a word he wrote his number, said to call and he would direct you to the best Dr for the situation. I know, funny how things work. Kathy and I just looked at each other and teared up. We knew he was supposed to come buy that Cajun cook book... People come from very far away because they are so talented there. I couldn't find his name on the site, but I liked what I read about their Culinary Services!
Shirley, my wonderful friend who is the Team Rudy organizer, shoulder to cry on and much more, has met David Kent, the Chief Operating Officer at CTCA. She has emailed him the most wonderful note asking for assistance.
I also got plenty of calls, emails, messages, and comments from people who had friends with CTCA success stories or people they knew who work there. Here are excerpts from a few I could put my hands on quickly -
When I first researched them several weeks ago, I didn't go there at that time because they don't take you until you have an actual diagnosis and completed tests. We were still involved in the endless testing and trying to get the confirmed diagnosis. I was so frantic and wanted to get Rudy's treatment started fast. The process of getting a confirmed diagnosis and getting started with treatment always seems to take sooo long.
Even though I chose a different path to get started, I always kept CTCA in mind. I knew that if we ever felt the need to change, this place was a definite possibility.
Most any good oncologist can prescribe a chemo/radiation/surgery protocol that best suits a patient's particular cancer. What I want for Rudy are the additional services. I want MORE than just traditional treatment. I want the pain management. I want the nutrition therapy and the acupuncture and the naturopath services. I want cheerleaders and professional people who will boost his HOPE. We need the extras than can make all the difference in the world. The people who surpassed all expectations after being told they wouldn't survive always did MORE.
By the way, if someone you know is going the traditional route and their doctor feels confident in the expected success, that's a different story altogether. Still, I think every cancer patient should at least study the impact nutrition has on cancer. It's been a real eye opener for me and I thought I knew a good bit about nutrition.
I have a number of contacts to start with there.
The first contact appeared a couple of weekends ago. Lorraine, the owner of Rockin B, sent me this - ... Last week this guy bought a book...long story short... [Bruce Love is a chef at CTCA]. I just asked him if we had someone very dear to us that needed an "in" there would he help..Without a word he wrote his number, said to call and he would direct you to the best Dr for the situation. I know, funny how things work. Kathy and I just looked at each other and teared up. We knew he was supposed to come buy that Cajun cook book... People come from very far away because they are so talented there. I couldn't find his name on the site, but I liked what I read about their Culinary Services!
Shirley, my wonderful friend who is the Team Rudy organizer, shoulder to cry on and much more, has met David Kent, the Chief Operating Officer at CTCA. She has emailed him the most wonderful note asking for assistance.
I also got plenty of calls, emails, messages, and comments from people who had friends with CTCA success stories or people they knew who work there. Here are excerpts from a few I could put my hands on quickly -
- A friend's husband went to one in another state before they built the one in Newnan with stage 4 lung cancer that had spread to his ribs and they did several combined traditional and alternative treatments and he survived for 11 years before getting sick with an unrelated illness.
- I do know that our favorite doc ever works there. John Schuler was our fam doc for years. - This message was from my wonderful friend Kathy H. She introduced me to our favorite doc ever Barry Hull. That man was a saint. He changed fields, otherwise we would have stayed with him for life. If John S was her favorite, even over Dr. Hull, then this guy must truly have wings.
- I had a friend who went thru numerous rounds of chemo, experimental chemo and went in remission for awhile. then cancer returned. Oncologist said nothing else to do. She went to cc of America and she has found new hope. She is currently ok. Just one story but a good one. She had colon cancer that spread to her lungs and I don't know where else.
When I first researched them several weeks ago, I didn't go there at that time because they don't take you until you have an actual diagnosis and completed tests. We were still involved in the endless testing and trying to get the confirmed diagnosis. I was so frantic and wanted to get Rudy's treatment started fast. The process of getting a confirmed diagnosis and getting started with treatment always seems to take sooo long.
Even though I chose a different path to get started, I always kept CTCA in mind. I knew that if we ever felt the need to change, this place was a definite possibility.
Most any good oncologist can prescribe a chemo/radiation/surgery protocol that best suits a patient's particular cancer. What I want for Rudy are the additional services. I want MORE than just traditional treatment. I want the pain management. I want the nutrition therapy and the acupuncture and the naturopath services. I want cheerleaders and professional people who will boost his HOPE. We need the extras than can make all the difference in the world. The people who surpassed all expectations after being told they wouldn't survive always did MORE.
By the way, if someone you know is going the traditional route and their doctor feels confident in the expected success, that's a different story altogether. Still, I think every cancer patient should at least study the impact nutrition has on cancer. It's been a real eye opener for me and I thought I knew a good bit about nutrition.
Saturday, November 15, 2014
Wrapping Our Head Around Bad News
I find it repulsive to write our bad news on the internet, but hopefully, putting it here will keep me from having to repeat it over and over. I would have rather talked to MANY of our friends and family personally, but I CAN'T repeat the bad news.
The Bad News
The PET scan showed cancer in 14 places, including bone and liver. It’s stage IV, non-small cell, “not-otherwise specified” whatever the hell that means. Rudy will have “Standard 1st” chemo every 3 weeks. After 3 months they will evaluate to see if that protocol is working. There’s a Standard 2nd and a Standard 3rd which can be used if the 1st stops working. There was more said about chemo and such but my brain (and heart) had left the building and I didn't bother to write any more.
We all – Rudy, me, Linda and Nancy – took in more than we could handle. Nancy had to leave the room, but the rest of us stayed (turned to stone is more like it) and tried to focus. I think we were hoping for a sentence with a glimmer of hope. The best that was offered was to work towards living a bit longer and living a bit better – quality and quantity.
After we left the doctor’s office, our emotions were all over the place. I talked to a few people on the phone last night and I think I even managed to participate in conversations, even though it felt like I wasn't there. If I sounded weird or off or disconnected, it's because I was. Enough of that.
A Glimmer of Hope
The main information I want to share is that after the news started spreading and so many people prayed for us, at some point Rudy announced with conviction he was not rolling over. We are going to fight. I burst into tears and felt hope. Maybe it’ll work and maybe it won't, but like Rudy said, we have nothing to lose by trying. Rudy is strong willed and despite his diagnosis, he is strong in body. I have enough information about nutrition (and a strong desire to know more) to fight this thing and together, we will, at the very least, irritate the hell out of all the cancer cells.
What We Need
We need continued prayers and love. We need help. I’m questioning every single thing I do. I’m questioning big decisions like if we should jump ship and move to a place where they do more than conventional treatments. I’m questioning small decisions like whether the "nutritious" fruit he eats is turning straight to glucose and going directly to those disgusting cancer cells. I am changing my mind daily depending on the latest article I've read. I don't know what to do. I'm mixed up and confused.
Rudy needs help with pain. One tumor is pressing on a nerve and it’s affecting everything. There’s a chance that the first chemo treatment will ease that and if it does, it could make a huge difference. He also needs peace of mind and continued willpower. We need lots more. God will know what we need even when we don’t.
For those who have the time or inclination, I am going to begin posting (mostly on our Facebook page) specific things we need help with. Not everyone will have the time or the knowledge to help with these. If all you do is pray for us, believe me, that's a major help! Some requests are for the people who are very close to us who have been feeling helpless and not knowing what they could possibly do. Some are just questions in case anyone has a bit of knowledge about one thing or the other - a connection, an antidote, advice. I’m just going to start throwing questions out there because I don't have time to carefully research everything that’s spinning thru my head.
There’s one very specific thing I’d like help with. It’s a biggie in terms of time. It's something that only those who enjoy this sort of thing will want to do. If you don't have a "researcher type personality", then pass on this. I'm sure I'll ask for help in some other way that will suit you better. I would love extra help with reading books focusing on an integrative approach to beating cancer. I have 4 books I am using to help guide me. They are highly-rated and each has information and tips that could prove helpful. I am having a hard time finding the time to read them like they need to be read. If anyone would like to read any of these and pass along key points and pages I should jump to, I would really appreciate it. If this is the kind of thing you feel you would be good at, let me know which book you'd like and I'll buy it for you.
The Cancer Fighting Kitchen - This is a REALLY good choice for ANYONE who likes to cook!!! Cancer or no cancer, there are great tips here! In the case of cancer,it's particularly helpful for what to eat while undergoing chemo. If you know anyone else with cancer, this is a FANTASTIC book to gift them!
Beating Cancer with Nutrition - This one has good info. Some bits that I've jumped to are hard to read and requires more concentration than I seem to be able to muster up. Other bits were helpful and easier to read. I haven't read enough to fairly judge it. Read the reviews and see what you think.
Anticancer: A New Way of Life - Good info. I know this has major helpful info.
Cancer: 50 Essential Things to Do - I feel hope when I read this. He beat a stage 4, "30-days-to-live" lung cancer diagnosis.
Beyond that, I hope everyone will try to put negative thoughts out of your brain. We already know this will be a difficult, seemingly impossible task. We're not stupid. We're not delusional. But we also know that others with a similar diagnosis have managed remission for 14 years and more. They've amazed their doctors. If we could somehow turn this around, perhaps our journey could help others to do the same. We can only do our best with positive, determined people in our inner circle and positive people praying for us. We could both use a healthy dose of hope.
PS - Rudy really doesn't want to do a lot of talking to anyone just yet. This is a lot to wrap his head around and he's trying hard to set his mind on the task ahead. Pep talks, though well-meaning are just hard. On the other hand, you can never hear, "I Love You" too often. And if you need to turn the conversation to something lighter, ask him about his new Dodge Challenger. He ordered this before he got sick. It should arrive soon. He thought about asking the dealer to cancel the order, but I talked him out of it. It's something that will make him very happy and it might help him every bit as much as good nutrition. I find the name of the car particularly meaningful.
The Bad News
The PET scan showed cancer in 14 places, including bone and liver. It’s stage IV, non-small cell, “not-otherwise specified” whatever the hell that means. Rudy will have “Standard 1st” chemo every 3 weeks. After 3 months they will evaluate to see if that protocol is working. There’s a Standard 2nd and a Standard 3rd which can be used if the 1st stops working. There was more said about chemo and such but my brain (and heart) had left the building and I didn't bother to write any more.
We all – Rudy, me, Linda and Nancy – took in more than we could handle. Nancy had to leave the room, but the rest of us stayed (turned to stone is more like it) and tried to focus. I think we were hoping for a sentence with a glimmer of hope. The best that was offered was to work towards living a bit longer and living a bit better – quality and quantity.
After we left the doctor’s office, our emotions were all over the place. I talked to a few people on the phone last night and I think I even managed to participate in conversations, even though it felt like I wasn't there. If I sounded weird or off or disconnected, it's because I was. Enough of that.
A Glimmer of Hope
The main information I want to share is that after the news started spreading and so many people prayed for us, at some point Rudy announced with conviction he was not rolling over. We are going to fight. I burst into tears and felt hope. Maybe it’ll work and maybe it won't, but like Rudy said, we have nothing to lose by trying. Rudy is strong willed and despite his diagnosis, he is strong in body. I have enough information about nutrition (and a strong desire to know more) to fight this thing and together, we will, at the very least, irritate the hell out of all the cancer cells.
What We Need
We need continued prayers and love. We need help. I’m questioning every single thing I do. I’m questioning big decisions like if we should jump ship and move to a place where they do more than conventional treatments. I’m questioning small decisions like whether the "nutritious" fruit he eats is turning straight to glucose and going directly to those disgusting cancer cells. I am changing my mind daily depending on the latest article I've read. I don't know what to do. I'm mixed up and confused.
Rudy needs help with pain. One tumor is pressing on a nerve and it’s affecting everything. There’s a chance that the first chemo treatment will ease that and if it does, it could make a huge difference. He also needs peace of mind and continued willpower. We need lots more. God will know what we need even when we don’t.
For those who have the time or inclination, I am going to begin posting (mostly on our Facebook page) specific things we need help with. Not everyone will have the time or the knowledge to help with these. If all you do is pray for us, believe me, that's a major help! Some requests are for the people who are very close to us who have been feeling helpless and not knowing what they could possibly do. Some are just questions in case anyone has a bit of knowledge about one thing or the other - a connection, an antidote, advice. I’m just going to start throwing questions out there because I don't have time to carefully research everything that’s spinning thru my head.
There’s one very specific thing I’d like help with. It’s a biggie in terms of time. It's something that only those who enjoy this sort of thing will want to do. If you don't have a "researcher type personality", then pass on this. I'm sure I'll ask for help in some other way that will suit you better. I would love extra help with reading books focusing on an integrative approach to beating cancer. I have 4 books I am using to help guide me. They are highly-rated and each has information and tips that could prove helpful. I am having a hard time finding the time to read them like they need to be read. If anyone would like to read any of these and pass along key points and pages I should jump to, I would really appreciate it. If this is the kind of thing you feel you would be good at, let me know which book you'd like and I'll buy it for you.
The Cancer Fighting Kitchen - This is a REALLY good choice for ANYONE who likes to cook!!! Cancer or no cancer, there are great tips here! In the case of cancer,it's particularly helpful for what to eat while undergoing chemo. If you know anyone else with cancer, this is a FANTASTIC book to gift them!
Beating Cancer with Nutrition - This one has good info. Some bits that I've jumped to are hard to read and requires more concentration than I seem to be able to muster up. Other bits were helpful and easier to read. I haven't read enough to fairly judge it. Read the reviews and see what you think.
Anticancer: A New Way of Life - Good info. I know this has major helpful info.
Cancer: 50 Essential Things to Do - I feel hope when I read this. He beat a stage 4, "30-days-to-live" lung cancer diagnosis.
Beyond that, I hope everyone will try to put negative thoughts out of your brain. We already know this will be a difficult, seemingly impossible task. We're not stupid. We're not delusional. But we also know that others with a similar diagnosis have managed remission for 14 years and more. They've amazed their doctors. If we could somehow turn this around, perhaps our journey could help others to do the same. We can only do our best with positive, determined people in our inner circle and positive people praying for us. We could both use a healthy dose of hope.
PS - Rudy really doesn't want to do a lot of talking to anyone just yet. This is a lot to wrap his head around and he's trying hard to set his mind on the task ahead. Pep talks, though well-meaning are just hard. On the other hand, you can never hear, "I Love You" too often. And if you need to turn the conversation to something lighter, ask him about his new Dodge Challenger. He ordered this before he got sick. It should arrive soon. He thought about asking the dealer to cancel the order, but I talked him out of it. It's something that will make him very happy and it might help him every bit as much as good nutrition. I find the name of the car particularly meaningful.
Tuesday, November 11, 2014
Rebecca Katz and Cancer Fighting Foods
My sweet friend, Shirley, put me in touch with Jaymee, whose husband has been down the cancer road. She has already been a GREAT source of inspiration, support, and information.
She messaged me yesterday and included a recommendation for the Rebecca Katz book, The Cancer Fighting Kitchen: "This was my bible throughout Dave's treatment, and there are so many helpful tips here about how to combat that metallic taste that chemo causes at times, nausea, etc. It felt really good to cook him healthy meals from this book."
I had told Jaymee about how the only thing I felt I had any control over at all was nutrition. She understood completely. I have been feeling particularly out of control this past day because of my husband's increasing pain and the appointments that we can't seem to get soon enough. Jaymee's message was the first thing I saw this morning (on my ipad while still in bed) and it truly put a spring in my step.
The first thing I did was look at the book reviews on Amazon. Wow! Here are some comments that jumped out:
The Rebecca Katz web page includes some of her recipes.
Here are more of her cancer fighting recipes I found online:
She messaged me yesterday and included a recommendation for the Rebecca Katz book, The Cancer Fighting Kitchen: "This was my bible throughout Dave's treatment, and there are so many helpful tips here about how to combat that metallic taste that chemo causes at times, nausea, etc. It felt really good to cook him healthy meals from this book."
The first thing I did was look at the book reviews on Amazon. Wow! Here are some comments that jumped out:
- This is the very first book that I have found that every recipe contained in it will help seriously combat the disease while you are dealing with it.
- The Culinary Pharmacy section in her "Cancer fighting Toolkit" is worth the purchase price alone. It's a virtual encyclopedia of what we're all trying to learn about ingredients that add health-supportive magic to what we slave over in the kitchen.
- This book briefly discusses research that has been conducted with regard to food and cancer, the healing properties of ingredients found in these recipes, strategies for eating before and after treatment, and how caregivers can set up support teams for patients so that no individual feels overwhelmed by the caregiving task.
- From Chapter One's Cancer-Fighting Tool Kit and learning things about the four pantry staples, to easing side effects from treatment to easy recipes to relieving symptoms such as anemia, constipation, fatigue, nausea and vomiting. There is something about everything in terms of easing this tough period of a patients life.
- It is so thorough, filled with concrete helpful tidbits to help ease many of the side effects of chemotherapy in natural ways - which I find more and more people are searching for...
- My dad has been fighting cancer the past six months and chemotherapy has made it a struggle for him to eat due to the fact that nothing tastes good to him. This book has been amazing! He actually looks forward to and asks for things made from this book. Especially helpful are the guidelines given that tell you what to add to a recipe if things are tasting bitter, salty, like cardboard, etc. What I also love is that the food doesn't just taste good but they have meshed it with the science of what someone needs nutritionally to fight cancer.
- The information in the first section -- especially on how to deal with the various ways in which food can begin to taste strange to the patient -- is in itself worth the price of the cookbook.
- What this book is about is helping the cancer patient get the nutrition they need to fight through treatment. As anyone who has been diagnosed with or is a caregiver for a cancer patients knows, nutrition is one of the most complex issues facing them. The patient's tastes will change, the foods they love will be no longer taste "right", and they will have problems with just feeling hungry and wanting to eat. In the longer term, the foods that they find comforting will turn out to be a reminder of their treatment and avoid them. Where this book really shines is telling you it is OK to eat the things the way you like them. Some patients will like sweet, some salty, some acid, etc., it is OK to eat any of them as long as it helps you eat. There needs to be some basis in nutrition for the food, but if it doesn't taste good to you, you won't eat it.
The Rebecca Katz web page includes some of her recipes.
Here are more of her cancer fighting recipes I found online:
- Magic Mineral Broth - If you try only one recipe, let it be Magic Mineral Broth. I've never liked vegetable broth from cans or boxes, but this is delicious -- as a tea or as the basis for a very simple soup -- in a cup or two of broth, throw in a handful of rice or pasta and cook. When it's ready, add a little chopped greenery -- parsley, celery leaves, green onion tops. I'm amazed at how such a lunch keeps me from being hungry all afternoon.
- Beyond Just Good Cornbread note - see this link for more comments on this recipe.
- Gluten-Free Blueberry Mini Muffins
- Cancer Healing Tea - also see link 2 and link 3 According to Katz, this tea is good for fatigue and building white cells.
- Green Tea Ginger Lemonade
- Chicken Vegetable Soup with Ginger Meatballs (will Rudy eat soup?)
- Sweet Potato Soup - One of my favorites is the sweet potato soup - full of flavor (you'll need to replenish and add to your spice collection)!. I make big batches and freeze in mason jars.
- I heard the Vegetable Pinwheels on page 153 were favorites, but couldn't find that recipe online. I plan to get the book (today if possible!) but I'm using a couple of these online recipes to make a grocery list so I can start cooking when I get home with the book.
According to reviews, the recipes are easy to follow, but are not exactly fast-food. One reviewer noted that she made things and froze them so that during times when she was too tired/sick to cook, she could just thaw and heat. I need to start doing that more. Rudy doesn't like leftovers, but maybe if I pull something out a week or two later, it won't seem like leftovers. I sure hope so because I know for a fact that there will be many days that cooking will be really hard.
Katz has 4 ingredients that she says should ALWAYS be in the pantry: lemon, maple syrup grade B, olive oil and sea salt. Hmmmm. I thought we were to give up ALL sugar. However, I have read amazing things about REAL maple syrup in the past. In fact, several years back I went on a kick of only using maple syrup to sweeten things after researching it. So maybe I need to reconsider. I can't wait to get her book to read more about her take on maple syrup and sugar.
And once again, Jaymee, THANK YOU!!!!!!!!!!!!!!! You pulled me out of a pity party and put my focus right back where it needs to be.
Saturday, November 8, 2014
Major Life Changes
Rudy's lung cancer diagnosis changed EVERYTHING and at the same time seems to have clarified my priorities. We have been too close to the trials of cancer twice now with loved family members. One did well. The other didn't make it. We know all too well what we're facing. We're at the beginning of what I call the roller coaster ride (plenty of ups and downs). Treatment will get underway soon.
I have hit bottom several times - so low I felt bizarrely numb. It was a very odd feeling (or rather non-feeling) that I'd never experienced before. Looking back I think I had literally scared myself into some kind of mind-numbing state. But I seem to have come out of it and am feeling stronger and more positive than I ever suspected I could. There are MANY people praying for us and that is the only thing I can attribute my strength to. My husband is being an absolute rock. He's not afraid for himself. He only gets emotional when he thinks of others, especially me. So, yeah, I NEED to be strong.
All in all, we are being positive. When riding this roller coaster, there are very few things you can control. One thing that is under our control is nutrition. Instead of researching the disease itself, which scared the hell out of me, I have researched things we could do to complement medical treatment. The biggest thing is nutrition. We've dropped all sugar and cut out almost all processed foods. Some people may think I'm imagining things, but it seems like it's already making a difference. Or maybe that, too, is prayer.
I have created a new page on this blog with information about the food we are eating. I have IBS and my husband has cancer. Our meals are meant to nourish and heal us both. The page is definitely not complete, but you are welcome to peek. Eating for Cancer and IBS
Also, I have created a "Rudy and Denise" Facebook page to keep friends and family updated along our journey. Join if you like. I hope it will be positive and filled with tips I discover along the way. We are SOOOOO determined to be a success story.
I have hit bottom several times - so low I felt bizarrely numb. It was a very odd feeling (or rather non-feeling) that I'd never experienced before. Looking back I think I had literally scared myself into some kind of mind-numbing state. But I seem to have come out of it and am feeling stronger and more positive than I ever suspected I could. There are MANY people praying for us and that is the only thing I can attribute my strength to. My husband is being an absolute rock. He's not afraid for himself. He only gets emotional when he thinks of others, especially me. So, yeah, I NEED to be strong.
All in all, we are being positive. When riding this roller coaster, there are very few things you can control. One thing that is under our control is nutrition. Instead of researching the disease itself, which scared the hell out of me, I have researched things we could do to complement medical treatment. The biggest thing is nutrition. We've dropped all sugar and cut out almost all processed foods. Some people may think I'm imagining things, but it seems like it's already making a difference. Or maybe that, too, is prayer.
I have created a new page on this blog with information about the food we are eating. I have IBS and my husband has cancer. Our meals are meant to nourish and heal us both. The page is definitely not complete, but you are welcome to peek. Eating for Cancer and IBS
Also, I have created a "Rudy and Denise" Facebook page to keep friends and family updated along our journey. Join if you like. I hope it will be positive and filled with tips I discover along the way. We are SOOOOO determined to be a success story.
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