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diabetes etc.

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

I started a new thread because it's easier for me. I meant to reply to each of the comments on the last thread because they all really touched me, but i'm overwhelmed and don't feel up to writing very much...well, that's what I say but watch this post be huge like all of my other ones....

David's chest cold progressed to the point that I ended up taking him to ER for a chest X-ray because I was afraid he had pneumonia. Nope, just an upper respiratory tract infection, otherwise known as the common cold. Not a big deal...unless you are weak from chemo and Avastin and fighting brain tumors. Then it's a whole different issue...so David couldn't do Avastin last Tuesday and he won't be able to do it this Tuesday either. He has Abuteral (msp?) in an inhaler but it's taking a long time to get over this cold. He also has thrush on the back of his throat so he has to take medicine for that too. I think it's so bad to postpone the treatments but our NO says absolutely no treatments while he has an infection.

While we were in ER for the chest cold, they did urine and blood tests and David's blood sugar was really high. He is now a diabetic. It's caused from taking steroids. I have to prick his finger 3 to 4 times a day and test his blood. Remember when I said I didn't have regrets? Well, I have a big one...I wish I would have done something different about David's diet. Our NO and all the drs we saw at NIH all said that diet had no impact on cancer and David could eat whatever he wanted (within reason) but I always felt guilty about the way I cooked. Real butter, real whipping cream, lots of cheese and meat and bread, pasta, etc. I mean, I served salads and fruit and veggies too, but we did eat a lot of sweet stuff, and a lot of carbs. So now I'm a food Nazi and I'm freaking out because I know next to nothing about diabetes. I'm learning on the fly.....and I am not having much success in getting his blood sugar down. He is on Metformin for the diabetes, and we are seeing our new primary care doctor tomorrow to address the diabetes issue. It shouldn't be a big deal, but eating was one of the few pleasures that David had left, and even though I hate to cook, I loved making special things for David that looked tempting and tasted great, that he enjoyed. Now that simple pleasure is out the window. He hates diet soda and sugar free stuff. No more Starbucks....it's dumb to feel as bad about it as I do.

I won't go into details, but in the middle of all of this new stuff, David's insurance 'termed out" as of 4/30. I found out on 5/2 when his blood thinner (enoxaparin) was denied. I had no idea that it would "term out." I had the worst experience with David's case manager. A horrible person who was absolutely no help and really callous and rude too. I'm filing a formal complaint about it. I spent so much time on the phone last week, and talked to so many different people, with no success. I can't believe how crazy stressed it made me. It was bad. I felt like I was going to have a nervous breakdown. I cried at the pharmacy, I cried on the phone (from anger) with the insurance people....my sister came over and just spent the entire day with me, two days in a row. My daughter Christy came over a bunch of times and made some calls but didn't get anywhere either. Finally I got ahold of a different person who walked me through the process of getting different insurance. But for the month of May, David will only have Medicare and it only pays 80%. The bill for just David's outpatient Avastin and carboplatin for March was over $20,000. The two drugs cost $18,000. That doesn't count trips to ER or MRIs or the palliative dr care...etc. Anyway, I decided to refuse to let it bother me and I'm just going to get the treatments for David. The drs and institutions can just accept 80% as their full payment or they can work out a payment schedule and we will pay it off over 50 years. They have all already made a fortune off of David. David will have insurance again as of June 1st. It's going to cost us, and there's a $2,500 out of pocket, but we can manage it.

The really bad part of all of this is that David was taken off the enoxaparin. That's the special expensive (over $4,000 a month) blood thinner shots that I had to give him 2x a day. His insurance denied it and Medicare didn't want to pay for it, so our NO took him off of it. The non-dog nurse said that David can take Pradaxal instead. She said, "It probably won't make any difference now." We talked some more and then I said to her, "What exactly did you mean when you said that?" She said it was a poor choice of words and she meant that Pradaxal would work as well as enoxaparin. I don't think that's what she meant. I think she meant that they don't have to worry about stopping the blood thinner for a BBBD because it's obvious that David will never get another BBBD. I told her that I didn't want to take David off enoxaparin unless the alternative was just as good for him as the enoxaparin. She said Pradaxal should work well for him. I don't know how I feel about it. I think it's all about the money, not what's best for David. Pradaxal is way cheaper. But David is so relieved not to have the enoxaparin shots any more. His stomach is a nightmare of horrible huge purple bruises from the shots. And his stretch marks are so awful too. I took a picture but I don't know if I should post it on this site....

Then to top it off, the woman at the new pharmacy (I had to switch) told me that she felt like the nurse from our NO office (that would be the non-dog nurse) just didn't want to fill out the paperwork to get prior authorization for the enoxaparin. I don't believe it but it sure messed me up. The whole insurance thing, on top of David's worsening condition, just about did me in. I said to the receptionist at the NO's office..."What is going on? Are you guys giving up on David and cutting us loose?" She was super annoyed that I said that, but tough. That's how they are making me feel. The non-dog nurse is especially full of doom and gloom whenever I talk to her. I finally told her that I was not done fighting for David and if he could have a year left, then I wanted to do everything in my power to make sure he gets a year. I think they don't think he has that long and they are just waiting for me to come to the point where I give up and accept it. They haven't even seen David since we were discharged from the hospital after the cellulitis episode. That was in February. He hasn't even had one MRI yet since he's done the Avastin and Carboplatin. How can they possibly know what's going on with David? The non-dog nurse acts like David's issues are from the tumors, but I think that he might be so weak from the steroids. That nurse told me that steroids reduce muscle mass, especially in the upper thighs, and David's legs are so skinny and weak, and he has way more strength in his arms than in his legs. With the diabetes issue and the leg weakness, I would really like to reduce his steroids, but I'm afraid of brain swelling. David has been totally coherent and he hasn't been doing the weird repetitive stuff. That's why I don't think the weakness is from tumors. I think it's from the drugs...the steroids, the chemos, the painkillers. Maybe I'm in denial....I don't know....

I re-read my last posts on my last thread and I am shocked and saddened to realize how much David has gone downhill. I can't believe that he actually went to church last week. Now he is so weak that he can't move his legs to get out of bed. I have to pick them up and swing them over the edge of the bed for him. He can't walk even one step without a lot of support. I lift his arm up over my shoulders and have him lean on me so he can go to the bathroom. It's only about 3 steps away from the bed. I stand with him leaning on me while he tries to pee. It takes almost all of my strength to keep him upright. Yesterday my son Dallas (David's older brother) was helping me and he was standing there with David while David tried to pee, and David started to have a bowel movement while he was standing there. It just dropped out of him, down his legs and onto the floor. He is so sick and so weak. He's 28! I scream that inside of my mind, but on the outside, I am all calm and collected. I tell David, "You're sick. You are taking high powered medicine that's making you really ill. This is no big deal and in seven minutes, this will be all cleaned up and it will be like it never happened." And I clean it up. Dallas held David up while I washed him off, and when it was all over, Dallas went into another room and wept. My whole family is so devastated....

My older daughter Cathy is getting married on June 30th. It took her boyfriend about 4 years to decide he was ready to take this step. This should be a happy time....Cathy and Christy and I went to a craft store to buy decos for the wedding. We were walking in together and I saw our faces reflected in the window...we looked so grim and strained. We should be laughing and happy and having fun planning her wedding and it's so not that way. I feel bad for how cancer is robbing Cathy (and all of us) of the joy she and we should be experiencing right now, getting ready for her wedding.

My sweet little 4 year old granddaughter Kaylie sees a lot of me because she lives right next door. I never grocery shop or run an errand without Christy going with me, and usually Kaylie goes too. Kaylie has seen me crying in the car so many, many times....she draws pictures all the time of her and me and David. Little stick figures holding hands, going camping, under rainbows, with flowers and trees and the sun shining. It just breaks my heart. Even the little kids in our family are impacted....

I crept quietly into David's room today to check on him while he slept. He is all propped up with a bunch of pillows so it's easier for him to breathe. I stood there for a long time, looking at his face, wondering if he was dreaming of playing basketball. I just cannot believe that this is his life, that this is what it's like for him. May 15th will be 3 years since he was diagnosed. It was just a few years ago that he was so healthy, lean, ripped, coming in my front door, laughing and joking around, carrying in his laundry to do at my house while he had dinner with the family. He was the life of the party....telling funny stories about his week, making us laugh so hard... we thought he had his whole life ahead of him.....

I went to a caregiver/survivors group meeting last week. I met a really nice lady whose 64 year old husband has IV colon cancer. They both attend the meetings. Diagnosed 7/11, just got a call on Tues. from his jerk of an NO saying his MRI showed more cancer and they would talk about it at his appt. on Monday. You would never guess that he's sick...he looks great, about 53, I'd guess. His wife talked to me a lot and we had some of the very same feelings. I don't know why, but just knowing that we understood how the other felt, really helped me. I hope to attend the meetings every week but it will depend on how David is doing. There were only 6 of us, counting me and my sister.

I am going to talk with David and try to fill out an advanced directive with him. Also going to get power of attorney. I should have done it a long time ago, when David wasn't so sick. I told him I just thought we should take care of business, and that I don't think he's dying, but there's no way I can take away the depression that doing this stuff brings. But I need to do it. It will take some stress and worry from me. And David needs to be the one who decides what he wants to have done when he can't speak for himself. So many painful aspects to this dreadful, horrible, cursed disease.....

That's where we are at. I'm sorry that this is so long. I guess no one is forced to read my posts, so I need to get over feeling bad about writing so much. It's a form of therapy for me, I think.

Thank you for being here for me.

Love and blessings,
Cindy in Salem, OR

chicken2799's picture
Posts: 105
Joined: Nov 2009

Never feel bad about your posts! Long or short, whatever you need to release some of the things you have to bottle up inside. I admire you for the strength you show in front of David! You are truly an Angel, Wonderful Mother, and a very Strong Woman!! It does not seem fair that anyone should have to go through this terrible disease! This month is Brain Cancer Awareness Month, but every day for all of us is Brain Cancer Awareness! My heart is breaking for you and your family and especially for David. I really wish there were words I could say, but know that you and David are always in my thoughts and prayers!


Mobile, Al

Please don't feel the need to reply to every post, just know that I want you to know we are here to listen!!!

BenLenBo's picture
Posts: 145
Joined: Feb 2012

Cindy and David,
We were just informed by Benjamin's doctors, that one side effect of
radiation to the brain is the development of pancreas problems(Diabetes). Benjamin's Radiation Oncologist, has a checklist of symptoms that needs to be filled out every
visit- at first we were laughing about some of the symptoms like (nipple discharge), but then we were informed that the pancreas can be damaged by brain radiation. So, far Benjamin had a clean MRI and has no problems, keeping our fingers crossed. There are question's I would love to ask you about David, but unsure how you would feel answering.
David is so lucky to have you for his mother, your strength and commitment is priceless. I enjoyed reading your directness to non-dog nurse- at least you didn't
punch her :o) You are right in questioning their motives- are they offering top-notch
treatment or just sustaining. Has anyone evaluated all the medication your son is taking, does he really need it. Is the medication causing his current problems? Insurance should not dictate what medicine is appropriate for a patient- claims adjusters do not have medical degrees. Nurses do get lazy when filling out paperwork, and need to be held
accountable for their actions. You are paying them for their services, without David and your family, they would not have their job.
It is good that you can vent on this site, and glad to hear you have been attending
a support group. As great as family and friends are, they just do not understand what
we are going through on a daily basis, with a child suffering from cancer. Does David have
someone to talk to - get his feeling out, express his desires? Benjamin is closed mouth about his feelings, saying "it is what it is", I want more, we have discussed his future,
desires, but not the nitty gritty yet, we just can't go there. I know where your coming from, about approaching David about his directives - it doen't have to be family. Our love for our son's is so great, it hurts! Stay strong and scream!

(((Hugs))) Prayers are with your family!


Zucchini Pizza- great for diabetics!
4 cups shredded zucchini, 1 lb ground beef,
1/2 tsp salt, 1/2 cup chopped onion,
2 eggs , 1 15 ounce can pizza sauce,
1/2 cup parmesan cheese, 2 cups mozzarella cheese,
1 medium green pepper chopped
Place zucchini in strainer, sprinkle with salt. Let drain 10 minutes, squeeze out
moisture. Combine zucchini with eggs, parmesan cheese and half of the mozzarella cheese. Press into greased 9x13 pan. Bake 400 degrees for 20 minutes. Meanwhile cook beef, with onions, drain add pizza sauce. Spoon over baked zucchini, top with cheese and sprinkle with green pepper. Bake 20 minutes. Serves 6-8.

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Hi, Carol.

Thank you for your note. I will try that pizza..it sounds delicious! I just got a diabetic cookbook and I'm getting ready to try a few dishes. I described a few to David...he wasn't that excited. He's a picky eater. :)

Please feel free to ask me any questions that you would like to ask about David. Or about anything at all. I'm an open book. My only concern is if you think your questions and/or my answers might be difficult or upset other readers on CSN, then please just ask me via private messaging on this site.

One of the side effects of David's condition is that talking is really, really hard for him. He is totally articulate and able to talk...it just takes a huge amount of effort. He hates when people (including me) ask him questions. Dr visits are torture for him. I tell the doctors to ask me the questions because David hates to answer. They always ask him if that's okay and he nods yes. Even simple questions like, "Would you like eggs or pancakes for breakfast?" are tiring for him. He prefers yes or no questions, and not a lot of those, either. So we don't talk about what he is feeling. He and I have always been really close, all of his life, and before he had the recurrence, we talked a lot about his tumor and his situation. We spent literally hours on the phone, talking about it and about what we believed and what we needed to do. How to fight, what our attitude should be. He totally believed that he had beaten the cancer and that it would not ever come back. He was living his life that way. Going to college, planning for the future. He said that his life was better since he had been diagnosed with brain cancer, which amazed everyone. He felt like he had more purpose, more ambition, and a new appreciation for all the good things in his life. It was so devastating when the cancer returned. At first, he was very strong and he was determined to fight, and he believed he could beat it a second time. But he kept getting worse and worse, and now he's so sick and so impaired that he doesn't talk very much about anything like this. He did tell me that he knows he's dying. I feel like I am dying too, when he says that. But.....I believe that there is a better life waiting for him and for me. I believe in Heaven and I trust God that one day all of our suffering will be over and we will be in a better place with no tears, no pain, no suffering. Those aren't just nice religious words for me either. I really believe it. And so does David. I just HATE where we are at right now.

Anyway, please feel free to ask me any questions at all. I would be really glad to think that I was able to help you in any way possible.

Love and blessings to you and Benjamin.
Cindy in Salem, OR

LeslieLand's picture
Posts: 49
Joined: Feb 2012


I'm so sorry you had to deal with that insurance mess on top of everything else. I wish you could just catch a break.

I'm glad that you were able to get to a support group. I hope it continues to help you.

I had no idea about the possibility of diabetes. Just about a month before my husband was diagnosed, we radically changed our diets to start eating a more paleo/primal diet. It's a great diet/lifestyle for dealing with diabetes. In your "free time," (LOL, I know!) you should look up Primal Blueprint or marksdailyapple (a blog) and it has tons of great information. I think for diabetes, if you were to cut out grains from your diet, that would be huge. (And you can keep up with all the meat, butter and cream- just try to get them from a healthier source.) Since he's only on met and not insulin, it should be able to be managed through diet. I used to have to take met for insulin resistance, and since changing what we ate, my blood sugar and insulin levels are right on and level. It's pretty amazing. Plus, I absolutely HATED taking metformin. I know, I know, this is just fyi if you have the time or inclination, but I thought I'd try to be helpful in the one area that I could.

I hope the albuteral helps him and he gets over that cold soon. I just started that this year due to all of the vog here irritating me and that's another one that takes a while to adjust to... who am I kidding? All of these meds just suck.

I'm thinking of you every day. Write whenever you feel the need or want. There are many of us here who wish to support you.

Love to you and your family,

Posts: 19
Joined: Dec 2011

Cindy - I have not been alone long enough to be able to read your whole post but I read some of it and I just wanted to say that I am thinking about you and wish I could give you a big hug.


Edit: Cindy I finished reading your post and it is horrible to have to deal with insurance issues while trying to care for your son. Also finding out he has diabetes is just one more thing you did not need. I am glad you found a group you can go to so you can vent your frustrations. I wish there were magical words that I could type to make you feel better but I am at a loss to find them. Just know that I am thinking about you and your family.


cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Thank you for your kind words and support...I really appreciate it, and thank you for reading my posts when you are so busy taking care of your son, your husband, and dealing with your own battle... I do not know how you do it!

I think we have a grip on the diabetes issue. I am resigned to getting some huge medical bills for this month, but our NO said that we can wait until the first week of June for our MRI and NO appointment. We will have better coverage in June. But better than that..... David is slightly better, for which I am very grateful. I wrote to you on your Avastin thread and I don't want to make you read the same info twice but I did want to be sure to say thank you for thinking of me.

Please let me know how your husband does on Avastin. I wish we knew if it was helping my David or not. Maybe the MRI in June will give us an idea about what is going on......last week David was so bad that I was afraid we would have to stop treatments...this week I am wondering if maybe the treatments might be doing some good....it is such a roller coaster of a life. Even though David is doing better, he is certainly not what I would call "good." He's just not as bad as before. It's all relative...

Hang in there...
Love and blessings, strength and peace to you,
Cindy in Salem, OR

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Hi, Leslie.

Thank you for thinking about me and David, and for the advice on the paleo/primal diet. I'm going to check it out. It sounds....cool. Prehistoric haha! David's blood counts have greatly improved, and the diabetic dr helped me a lot. He said that he is not concerned with one or two high readings, but on a trend of high counts. So far the spikes have been few and far between. But I want to lower the overall counts so I will definitely be continuing to make changes in our diet.

My week was a little better because David is doing a little better. I went into more detail on Katie's Avastin post. When I see even a slight improvement, I am just so grateful.

David seems to be over his cold, so he will do Avastin and carboplatin on Tuesday. He will have an MRI the first week in June, when our insurance kicks in. His NO said that was when he wanted to schedule an MRI anyway. (I was worried that they were postponing it because of the insurance issue.) The MRI will be an important deciding factor on whether or not we will continue with this treatment protocol. I am praying that it will have shrunk or stabilized the tumors. They were growing so aggressively that I will consider the treatment successful if it just stabilizes the tumors.

I hope that your husband is continuing to do well. I think of you and your husband and your little one all the time. I'm praying for strength and peace and healing for you and your husband.

Love and blessings,

Posts: 233
Joined: Feb 2009

My sister-in-law, who is 56, was diagnosed in Nov 2011 with grade 4 GBM - inoperable. She did Temodar, 6 weeks of radiation and one round of Avastin. None was really that effective. As of 2 weeks ago, she has now declined further treatment - she said if it wasn't going to cure her, then she doesn't want it. She wants quality of life - not length of time because she said the medication wasn't giving her quality of life. She is tired of the tests, tired of being dragged to the clinic and tired of the results of the drugs, etc. We all respect her decision.

She is now in hospice and we have seen a new peacefulness with her and that is truly comforting. It's her life - not ours. I think dealing with this issue is difficult on the caregivers who want to have as much time with their loved ones as possible.

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

I will honor whatever David wants to do. I would respect his decision and carry out his wishes if he wanted to decline treatment. Like you said, it's his life, not mine. I asked him about 2 weeks ago if he didn't want to do Avastin and chemo any more, and he said that sometimes he felt like he wanted to quit. But as of right now, he is still willing to do the treatments. I think the MRI in June will be a deciding factor on what he will do next. If it shows that the tumor has shrunk or is stable, then I think that David will decide to stay the course. If it's grown, then I don't know. I hate to think about it. But I am committed to doing whatever he wants to do. It's crazy, but we both still have a little tiny string of hope in us....like, just what if? What if....he suddenly had an unexplained turnaround...you just never know. Someone once said that as long as a person is breathing, there is hope. I don't think we have much of a chance...but you never know....

I did some soul searching after I read your post. Did I want David to continue treatment so I could have more time with him? Did I want that enough that I am willing for him to suffer and put up with all the chemo, needles, being dragged to the clinic? Seizures, headaches? No, I do not want that kind of time with him. I totally believe that I will see him again in eternity. And I HATE seeing him like he is now. But....he wants to fight, so so do I. I think it's difficult for me as his caregiver....but it's NOTHING compared to what he is going through. He's 28---and he's losing his life. And he is facing it with such courage....never complaining, always fighting so hard. I love him so much.....

Posts: 248
Joined: Apr 2011

Just wanted you to know I'm still thinking of you and David and praying. I read your post and I am amazed at your knowledge,strength, and courage as well as David's. Not only do you keep up with David, but you keep up with everyone on this site and you give words of encouragement to us and pass along information to us, and take care of your son and your family all at the same time. Not only are you a blessing to your son, you are a blessing to all of us as well. You have helped so many of us on this site in more ways than you realize. Thank you Cindy for helping me understand this horrible disease better than I did before. Thank you for sharing and caring. I pray for many blessings upon your life. You are truly a caring person.

Posts: 233
Joined: Feb 2009

There is no precedent - no book that says do this and that. It's minute by minute and day by day and hope you are doing the right thing. I applaud caregivers everywhere. As a sister-in-law, I can only offer support to my brother-in-law and listen to him when he needs to talk. He mentions the exhaustion he feels and I can hear it in his voice. I feel absolutely helpless.

I hope you do not think I was suggesting anything to you in my post - I was merely stating where my sister-in-law is in her fight. I wish all the best for David, you and your family.


cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Hi, Debra.

Oh, I didn't think you were suggesting anything.....it was late at night and I was a little more emotional than usual. The whole hospice question and when is enough, enough are so difficult and emotionally charged for me. I'm sorry if I came across as defensive or anything in my reply. When I re-read it this am, it didn't reflect my feelings correctly. I'm just having a hard time in general. I am trying my best to take it moment by moment. Right now David is finishing a meal and having a cup of coffee while we watch Law and Order. So it's a good moment. And we are enjoying it! :)

I'm glad that you are there for your brother in law and sister in law. I know that for me personally, sometimes the best thing anyone can do for me is to just listen.

Love and blessings,

Posts: 358
Joined: Aug 2009

I am so sad as I read your posting. It brings back such difficult memories as we went through this horrible disease with my husband. I remember the many, many times my son and I supported my husband as he used the bathroom, held his head up to drink. I think you are an amazing person. Your love for your son is so evident. My prayers are with you, David and your family.

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