Thank you for those that have called or texted to check on me. I am as a matter of fact doing okay. Fell off the grid for a bit, but hopefully getting back on track. Like the saying "I fell off the wagon, but I'm back on." That is me. I didn't see it coming either. For as high as Don and I still were from the benefit, I really didn't see a bad time coming for awhile, but like cancer is unpredictable, so is my life I guess.
Last week I was to start my new chemo of Avistan and Abraxane. I knew I needed my fix as my pain was getting worse and worse. That is the one true sign that I am going by right now to say if the chemo is working since I (with my doctors okay) decided a scan is not something I want to go through at this time. So I was anxiously awaiting chemo and in the mean time was taking more pain meds than I wish to even discuss just to keep me going. I ranted a bit about it on Facebook, but because people abuse the use of pain pills, you unfortunately can not have your doctor call you in something any stronger than Norco. It has to be a paper prescription. So along with chemo I was anxiously awaiting seeing Dr. Phillips to get a prescription for a stronger pain medication. When I arrived at chemo on Wednesday, it was taking longer than usual to get my drugs. Finally Dr. Phillips came to chat about my pain and prescribed me a stronger pain medication. This was when I learned that my insurance had declined Avistan as a drug for them to give me. I was VERY upset and because the pain was so bad, I was not sleeping much so this was not the news I wanted to hear. The hospital had almost 3 weeks to work with my insurance to get this approved. Of course no one is going to take blame between the insurance and the hospital and it really didn't matter, all I knew was not getting a drug was not going to help the cancer or pain situation. I even asked if they could put it on my bill, but that was when I learned that this greedy drug manufacturer was going to charge $18,000 for 1 (ONE) treatment. I will take back the greedy comment if it works, but this is partially what is wrong with the cancer front….The astronomical amounts that the companies and the doctors can charge when you are 100% at their mercy. It is just so sad. Not to mention (again) not being able to get a darn pain medicine over the phone when I have no hair and would have gladly shown the pharmacy, police, FDA, whomever how much pain I was in to show I was not selling, sniffing or putting in someone Else's drink. Just doesn't make sense and is so unfair given my circumstances.
Okay I'm off my soap box….So Wednesday I received one drug and was sent on my way. Whitney graciously agreed to turn in my prescription to Walgreens that I have used for the past 2 years. We go home and an hour later Walgreens calls and says that they do not carry the number of pills I needed, but that they had contacted another Walgreens in the area and they do. I say great, so will they fill it? Nope, you will need to come here to pick up the prescription and provide an ID that matches who is on the prescription and take it to the other location. I am off my soap box, but just imagine what was going through my mind. So I do this and take to the next Walgreens only to be told, I must wait their hour to fill the prescription. Even though they are the same company as the one down the street, even though these are pills and have to be laying around in a locked room I'm assuming, I had to wait the hour….Again I'm breathing when I say I'm off my soap box, but cancer pain doesn't go away while you guys go through your silly formalities. So off I went for a milkshake and a stop at Walmart. Why not feed my pain with more pain of going to Walmart….
Home Wednesday night and I start my meds and I'm loving them. Unfortunately I woke up Thursday and had a very bad chemo hangover and was tired. I didn't know if I should contribute it to the new chemo, the new pain meds or my levels sinking into the tank. So I was left to just take medicine and sleep it off. I woke up Friday and mom had arrived but was feeling about the same. We were heading to Don and Wendy's lake house that evening for Memorial day weekend. Of course we left when the rest of Chicago was leaving and I took my pain medicine as scheduled but my pain started increasing rather than going away. It got so bad and I was so tense that my back cramped up and my toes were stuck curled up. I was crying hysterically so we turned around. This scared me so much. I am not a weeny in my opinion. I feel like I push myself more than some that have not gone through something nearly as close to what I have. So this was very unusual for me. Because it was after hours, I paged the Doctor on call. She advised me to take my original pain meds on top of my new meds and instructed if it was not gone in an hour, I was to go to the ER to get an IV of pain meds and (WAIT FOR IT) a prescription for a new pain medicine since they could not call in something different over the phone. So I did this and when we got home, Whitney massaged my back to get some of the tension out and eventually I relaxed enough to allow the pain medicine to work.
Saturday Don took the kids up to the lake and Whitney stayed home with me to watch over me since I was scared to death that I was going to over dose with the high amounts of pain meds the on call doctor wanted me to take over the weekend to stay pain free. Mom and dad had gone to visit their mothers. The quietness of the house was awesome. I did hallucinate one time that I recall and to me it is funny, but I would prefer not to do that again. Sunday was much of the same with relaxation add in a massage which completely helped my back and neck to feel better from being so tense. I have signed up for monthly massages just for that and to keep me in check. Something that used to be a luxury item for me has turned into a necessity.
Wednesday of this week I went back to the doctor and saw Dr. Phillips because it was decided with the on call Doctor from Friday night that I needed more of a long acting pain medicine rather than one that I need to take every 4 hours. So Dr. Phillips and I discussed and she completely agreed. She also hopes it will take away some of my anxiety. I do get anxious around the time of re-dosing because the pain is coming back but I try to make the 4 hour mark and not do them earlier. (I'm such a good patient) So she has put me on a 12 hour pill that I take 2 times a day. So far it has gone okay. I'm still needing to take some norco for small amounts of break through pain. It didn't help that when I went back Wednesday evening for chemo, even though I was not due for medicine, after leaving chemo I had a pain attack just like last Friday. Completely tense, couldn't find anything to help relieve my pain. So why they happen every so often can't be explained. I don't like that because I feel like I'm on guard at all times and scared it will happen again. I did receive both chemos on Thursday as the insurance decided it was necessary to cover the drug. (Applause) So far I feel good. I'm tired, but that again could be due to the pain meds, my low red blood cells (Dr. orders that I will need a transfusion probably by next week) or the chemo. All I know is I am getting the best help around here with dad and Whitney. My laundry is done, the kitchen is kept clean, dinners are prepared and the kids are shuttled around. I feel silly, but if it helps me regain my energy and have good times with the kids, that is what is important. When they move out and get jobs, I may be in trouble because I may forget how to do all of these things:) But they are awesome!
Please pray that this new chemo is doing its thing. Pray that my pain medicine will finally work to keep me out of pain. Pray that dad and Whitney find work. For dad so mom can get up here as we all miss her so much. For Whitney so she can begin her life as a big girl. Both have things in the works so I think your previous prayers and future prayers will get them to where they need to be! Oh and prayers that the house next door or across the street goes up for sale so my parents can buy it…..Kidding totally kidding! They will find something close so they are there when we need them. Just like Don and Wendy.
Love to all! Have a great weekend.