diabetes etc.

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