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...