03/27/2015
It was a tough second round of chemo. Jimmy went into this round still having a lot of pain and barely able to get around. The car ride to treatment creates a lot of discomfort for him. He got really tired and took a lot of medication during this whole round. To make matters worse, on all 3 days we had to go to Philadelphia, we left at rush hour and it took forever to get home. All in all, we are glad that round 2 is over.
We were both looking forward to Jimmy starting to feel better and have a week off from treatment and on the off week, his port incision opened up and his port was exposed. We had to head back to the hospital in Philadelphia on 3/17 for them to surgically remove the port. There is always an issue getting an IV in because his veins are shot. The nurses stuck him 5 or 6 times before someone informed them at the doctor was going to give him a local anesthetic and he wouldn't need an IV. Thanks for the unnecessary pain nurses. They decided that they couldn't put a new port in for fear of infection, so they put him on antibiotics and sent him home. The replacement port was scheduled the following Monday, 3/23 so that he could continue with chemo as planned. Jimmy was not looking forward to this procedure. He has already been through so much and having 2 surgeries in one week is so taxing on his body. Jimmy continued to have pain and trouble getting around throughout the week. Needless to say, this was not a good round of chemo physically or emotionally.
The new port was put in on 3/23 as scheduled. Since Jimmy was an add-on for this procedure, we waited about 2.5 hours before they finally took him back. Once they started, it didn't talk very long at all. And, thanks to one great nurse there was one stick and the IV was in with minimal pain. It was a very long day but it went well. Jimmy is ready for Round 3.
Throughout all of this round, I've been living in insurance hell. Every single time I go to the pharmacy, there is an issue with the insurance, either with prior authorization for the narcotics or them saying the the pill limit for the month has been met. I have literally, again, spent hours on the phone with the insurance company and the doctor's office and at the pharmacy waiting for medication. The doctor's office say they requested the prior authorizations from the insurance company and the insurance company say they never got the request. I get to the pharmacy and they try to get the prior authorization. If that does happen, there is always an issue where the insurance won't approve the total number of pills in the prescription because Jimmy's already gotten so many for the month. Therefore, he gets a partial prescription and the rest of it is voided. And the cycle continues. This is so stressful when I have several medications a month to get for Jimmy, including the 3 narcotics. It is a never ending vicious cycle which seems like there is no end in sight. You would think it wouldn't be so hard because we are still on our private plan insurance which is Blue Cross and expensive, but its really terrible. Since we did get on Medicaid, we can stop paying for insurance which will be one less expense we have to worry about every month. However, Medicaid does not go into effect until 4/1/15. I can only hope that it gets a little better.
4/5/15
Well, Round 3 ended this week and it was tough. The chemo is really hitting Jimmy very hard. After the treatment on Day 1 of the cycle, Jimmy is wiped out. He is tired and still in pain. Most days he's in the bed and others he alternates from the best to the sofa. For the next week, he had to use ice packs on his knee and groin area and the swelling has returned to his knee and foot. The good news is that he has been able to shower standing up as pee standing up most of the time. Ok, I know that was TMI but its all part of it. Another good thing is that he hasn't totally lost all of his hair. We are truly grateful for these positive little things.
As expected, I had more issues getting Jimmy's medicine again. I really unloaded on the secretary at Jimmy's doctor's office because I have had just about enough of fighting to get him his medicine to keep him from being in so much pain. She actually started arguing with me on the phone telling me that the pharmacist never calls the insurance company...which they do every time. She insisted that she had sent in the prior authorization and pill increase requests to the insurance company. Frankly, I don't believe she did. If she did, then why would the insurance company say they continually didn't have it? I spent an entire day calling her and the insurance company trying to finally get it all straightened out to no avail. While I realize that we are not their only patient, we are still a patient and they need to do their part to make sure Jimmy is comfortable and not in pain. Its uncomfortable when we are in the office and the nurse laughs about the amount of medicine he is taking to keep the pain under control. I feel like she is mocking us or thinking that we are making up the amount of pain that Jimmy is in every day.
On Day 8 of the chemo, Jimmy went in already very tired. The benadryl they give him in the beginning really made him very sleepy and groggy. While he was getting his chemo, I wanted to go to the local pharmacy down the block from the doctor just in case there was a problem with the insurance again. As expected, there was a problem...yet again. So, I ended going back and forth to the pharmacy 3 times before I finally got medication for Jimmy. I didn't even care that I was bugging the nurse at the doctor's office anymore. I wanted her to understand just what I've been going through and I think she finally got it. Because I could only get partial prescriptions, the rest of them were voided out and the nurse said she would have new ones waiting for us when Jimmy finished his chemo. You can't imagine how angry I was that I spent the entire 3 hours of Jimmy's chemo trying to get Jimmy's medication. Well, chemo was over and we went to pick up the scripts at the desk on the way out. Guess what?! You guessed it! They weren't there and the nurse was nowhere to be found. O.M.G. Jimmy is exhausted and feeling like he's been hit by a truck after 3 hours of chemo and the nurse made us wait for AN HOUR to bring us new scripts. I was ready to spit nails at this point. Lucky for her, when she finally did come out, I was on a phone call that I couldn't get off of and I completely ignored her. If I didn't, I swear I would not have been responsible for my actions. The office's patient services is sorely lacking and I'm fairly certain they know I think that.
Jimmy has been feeling pretty bad all week. The Neulasta shot I gave him on Day 9 has really made every bone in his body hurt. He is really chemo'd out and has been in the bed most of the week. Since the weather is getting nicer, I did get him to go for a ride one day to just get out of the house and get some fresh air. He said that it felt good to get out to go somewhere other than the doctor or the hospital. Of course, as luck would have it, I've been sick for about a week and a half with a sore throat, headache, body aches and exhaustion. I was afraid I was getting strept throat so I finally went to the doctor. Instead, I have a vicious sinus infection and the doctor put me on antibiotics and nasal spray. Thankfully, I am now feeling much better and happy to not have had strept. We can't afford for Jimmy to get sick, especially while his white blood cell count is down. HOWEVER, yesterday Jimmy said that it hurts to breathe. He has started wheezing and there's a whistling sound when he breathes. I'm worried it will turn into something else. He hasn't been running a fever so that's a good sign that it might not be anything to worry about. Of course, I take his temperature about 10 times a day just in case.
As for how Logan is doing, I know he misses doing things with Jimmy and hates to see his Dad laying around all of the time. When we went out for a ride, Logan was really happy that all three of us were going out together. We were only out about 1/2 hour but it was good for all of us to just be together outside to enjoy the nice weather. Also, this week was Logan's parent/teacher conference. When I looked through his paperwork, I saw a report he wrote about cancer as well as a poem he wrote about his Dad having cancer. I really hate that he is so effected by all of this and that he has to carry this burden with him all of the time, even at school. At least he is venting about it and that's good.
As for me, I'm still an emotional mess. I worry all the time about Jimmy. Every time he's sleeping, I always look to make sure he is breathing. I'm worried about Logan and how to keep his life as normal as possible. I'm worried about money and bills all of the time. Thankfully, friends are putting together a Designer Bag Bingo fundraiser on April 17th for us. I've never been to one but it should be fun to get out for a night and maybe win a new purse. The fundraiser couldn't come at a better time too. I mentioned earlier that we were able to get on Medicaid, which we are eligible for through the county and that started this week. Thank goodness. We were also eligible for food stamps, which is another big help, especially since we still have no income. Its embarrassing and very humbling but so many have reminded me that we have earned this help by paying into the system all of our working lives. It doesn't change the fact that I still cringe every time I have to go to the grocery store. I'm so self-conscious about paying and I feel like the cashier looks at me weird or something. Friends have also given us gift cards for various places for food and gas and we are so grateful for the help. Many people have also donated on our fundraising site and we thank all of you for your kindness and generosity. It makes it a little bit less stressful for us.
Well, now that Round 3 is over, Jimmy will have scans this week to see how the chemo is working. Best case scenario is that the chemo is shrinking the tumors. While we know that sarcoma is resistant to treatment and didn't really shrink the tumor last time, there is always a chance it will. If the tumors aren't shrinking but haven't grown any, that's a win. That means the chemo is stunting the growth of the tumors and that's a good thing. But, if the tumors are still growing, the doctor said he would have to try something else...maybe another treatment of chemo or even a clinical trial, if one is available. I'm choosing to believe that the tumors are not growing any more. I'll stick with the happy medium which is still good news. Fingers crossed! I will post when we know something.
Lastly, it is the evening of Easter Sunday that I am finally finishing this blog post. It was a quiet day at home with Jimmy's Dad coming over for dinner. I want to once again thank all of you for your prayers and support. Through God's strength, we have certainly felt your presence in our life and for that we are eternally grateful. Please continue to pray that Jimmy's scans next week show positive progress and that the cancer is not growing. Much love.
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