Pneumonia...Hospital...Scans...Bleeding...Hospital

4.28.15

April 2015 = Hell Month

It has been a few weeks since I last wrote but this month has been so hectic that I just haven't had the time or energy to write.

The week of April 6th is Jimmy's week off from chemo and its time for scans to see how the chemo is working. As usual, it seems like nothing is going Jimmy's way. I took him to the ER on the 6th because he had started to run a fever and was coughing constantly. This was very concerning since he had just finished a round of chemo. It turned out that he had pneumonia in his right lung and the doctor admitted him to the hospital. It ended up being a 4-day stay so he could get constant fluids and IV medication.

While he was in the hospital, it was time for his CT and MRI scans. The good news is that the nodules in the lungs seem to be a little smaller. However, the bad news is that the tumors in the abdomen, pelvis and thigh are significantly bigger. Of course, this indicates that the 3 rounds of chemo have not worked the way we had hoped. Ugh. This sucks. We spoke with the oncologist at the hospital as well as Jimmy's oncologist from Penn and the conclusion was to have Jimmy start inpatient chemo with VP-16 and ifosfamide treatment. This would not start until he was healthy and recuperated from pneumonia. Jimmy is not looking forward to this treatment. We know this won't be easy for him because this is a very harsh treatment. He has already been through so much and his body isn't what it was when he had inpatient treatment two years ago. Jimmy came home from the hospital on the 9th and it took several days for him to start feeling better and his cough to subside. He was expected to start chemo on the 20th, provided he was healthy enough to do so.

Here's Jimmy being a little silly with his shirt on his head while getting ready to leave the hospital...



On April 17th, our friends hosted a Designer Bag Bingo fundraiser for us and it was a lot of fun and a night out for me with friends. Jimmy could not make it because he still wasn't feeling well. I can't say enough about how grateful we are to our friends who went above and beyond to make the evening a success. There are too many to name individually, but I would like to thank everyone for all of their hard work. On a side note, there was only one tie of the evening in a round of bingo and, as luck would have it, I was one of those in the tie. Sadly, the other person won the tiebreaker and got a beautiful handbag. :( All in all, it was a great night.

Jimmy was feeling better from the pneumonia as the days went on but decided to postpone chemo for another week. His oncologist agreed with this and felt like Jimmy should be healthy enough to start the regimen or it would have to wait anyway. So, the plan now is for chemo to start on April 27th. Although the symptoms from pneumonia were better, Jimmy had also started to have severe pain and swelling in his right side. The pain got progressively worse and the swelling continued and by the 21st he was in the bed literally screaming in pain. This went on for a couple of hours until Jimmy finally decided that he needed to go to the ER. I called the ambulance and in they came once again. I swear I feel like I should add them to my Christmas card list at this point since they've been here so much. Even though Jimmy has a port, they needed to start an IV because their protocol does not allow them to access the port. Jimmy's veins are so beat up that it is very hard to get an IV started. It took the EMT a few tries and he still couldn't get it in before they left for the ER. The absolute worst part of all of this was Logan being there to see all of it. He has never seen Jimmy being dragged out of the house on a floor stretcher nor having to watch while all of the people crowed around Jimmy and invaded our house. I kept asking him if he wanted to leave the room and he said he wanted to stay. I was trying to be there for Jimmy and Logan at the same time. I continued to make sure Logan was okay during all of the mayhem. Please don't judge and say that I should have gotten Logan out of the room. It was all I could do to try and make sure everyone was being taken care of, including find a place for Logan to go spend the night so he wouldn't have to go to the hospital. I truly didn't have time to second guess my decisions. Even the dog seemed to be incredibly worried. He has also been very clingy in the days leading up to this and I truly believe that he knew something was wrong.

It was 11:30 p.m. before Jimmy got to the hospital. His pain continued to be through the roof. It took a few hours to get it under control. Since he had gotten scans about 10 days before, the doctors wanted to take a look at them to see if there could be any reason why he was having so much pain. Everything has been on his left side up to this point and his having pain on the right side is new. I got Jimmy's on-call oncologist on the phone and she told me that she received a message that the scans showed abdominal bleeding and that they could be consistent with metastatic disease. Not the news we wanted to hear. I told Jimmy and he was devastated. How much more can we take? He said that he wouldn't do chemo if it was a new tumor. By 4 a.m., the decision was made to admit him to the hospital and transfer him to Pennsylvania Hospital the next morning.

I went home and slept a few hours but was able to see Logan before school and bring him his lunch. He was incredibly worried but I assured him that Jimmy was in the best place possible.

Finally, good news. The doctors decided to re-scan Jimmy and have the local oncologist and his Penn oncologist review them. They determined that it was not another tumor but a hematoma, which a a collection of blood outside of a vessel. The doctors seem to believe that it was caused by all of Jimmy's coughing with pneumonia. Since his left abdominal muscle is missing, the right one had to take on all of the pressure from the coughing. This caused a tear and significant bleeding into his abdominal area and created lots of pain. The reason the bleeding was so significant was because of the blood thinners he has been on. Needless to say, he's no longer on the blood thinners. Thankfully, through all of this they were able to keep his pain somewhat under control. His side continued to be extremely painful as well as the tumor sites. Here's a picture of the bruise on his side where the hematoma is located...



By the second day in the hospital, Jimmy was still feeling pretty crappy and was very pale and weak. His hemoglobin level was extremely low so he had to have a blood transfusion. It was a little weird to know that he was getting someone else's blood. It did seem to work and his blood level came up a little bit and he was looking a little better. However, the doctor decided that the level wasn't where it needed to be so he received a second blood transfusion the next day. Thankfully, by the next day, his levels were at acceptable levels and he didn't need another transfusion. Also, he was off of his IV pain medication. Every little thing they disconnect means that he's one step closer to coming home.

The only other thing that was a setback was the fact that Jimmy was back walking with a walker and using the shower chair again. It seems like two steps forward and one step back. I'm sure it will be a short-lived setback and that Jimmy will be getting around without the walker soon. Jimmy is tired of being in the bed all of the time and I know this will be motivation for him to get up and about as soon as he is able. Well, by Saturday, April 25 in the late afternoon, he was able to come home. He was very tired and still very sore but relieved to be home and sleep in his own bed.

It is now April 28th and Jimmy is getting around, for the most part, without the walker. The chemo that had been scheduled for the 27th has once again been postponed. As much as we want chemo to start so that, hopefully, it will slow down the growth or even stop the growth of the tumors, Jimmy has to be healthy enough to withstand it. This week Jimmy is just resting and letting his body heal. The doctors said the area where the hematoma is will take months to fully heal but we are already seeing improvement just with Jimmy's ability to move around a little better. We meet with his oncologist later this week and he will determine then if Jimmy is able to start chemo next week. I hope so.

As for me, I feel like a broken record continually saying that I'm tired and exhausted but its the truth. I take a nap almost every day. I know its because I'm truly tired and a little bit depressed. I feel like I'm barely holding it together these days. Thank goodness for therapy and medication. With Jimmy in the hospital twice this month, it has been hard to keep life normal at home. I am wearing a boot on my left foot because I have an Achilles tendon issue at the moment and it slows me down, not to mention my ankle hurts. I can't afford to be sick or hurt and this is supposed to take the pressure off of my foot and let the tendon heal. Logan has a swim clinic going on right now and he swims 3-4 nights a week. Its very important to me that he stay with his regular routine. He is effected by this too much already. This means I'm out of the house on my way to the hospital when Logan leaves for school just so I can be there when the doctor makes his rounds. I stay there all day and make sure Jimmy has breakfast and lunch because he wants coffee from home and he won't eat the hospital food. I then have to get home for Logan and let him do his homework, feed him and take him to swimming. Logan has had a doctor's appointment this past week and visited Jimmy in the hospital too this past week. Whew! I'm tired all over again just typing it. What I am most tired of is having to do everything. I feel like a single parent with two kids, with one being disabled, at this point. Don't get me wrong, I love Jimmy very much and I don't mind taking care of him at all but instead of his helping me with the normal day-to-day things, I'm taking care of him because he can barely get out of bed. Just bringing in the groceries or taking Logan to and from swimming by myself seems so much harder without his help. This may sound trivial but we've been dealing with this for two years and things aren't getting any easier. In fact, things seem to keep coming faster and with more negativity these days. Basically, I'm tired of this shit. I want my husband back. I want our life back. I want to stop being depressed. I want to be less stressed. I want to stop worrying about what the future holds for my family.

Thankfully, Jimmy is home. He is having an okay day and for that I am grateful. It is beautiful out and the temperature is warm. I choose to look at the bright side of life today and not dwell on the negative.

As always, I thank all of you for your support and kind words of encouragement. Please ignore the typos and please continue to pray for my family. xoxo

Oh, and...

Round 3 of Chemo is Over...Insurance Hell Again

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.