I haven't written since before the new year got here. We got through the holidays very quietly. Christmas was spent at home as was New Year's Eve. I wish Jimmy would have been able to get out and about but it was nice not having to go anywhere too. So, since Christmas, Jimmy has been just letting his body heal. Logan's swim season was in full swing the last few months, so that kept Logan and I busy while Jimmy has been taking it easy. Jimmy was able to get to one meet and Logan was very excited that he felt well enough to make it. Logan and I both had birthdays...mine was a big one...I turned 50...but we didn't get to do anything because Jimmy was still recovering from surgery and couldn't go anywhere or do anything.
Enough about that and here's the latest news and its not good...
It has been almost 3 months since his surgery and we are still dealing with his open wound. The opening is very small but it is still there. It is healing very nicely though and that's a really good thing. After what we were dealing with, it looks so good now. We will take anything positive these days. Jimmy was feeling better up until a couple of weeks ago. He was getting stronger and any pain he had was being managed by over-the-counter medication instead of anything stronger. Then, during the week of January 19th, he started having pain again at the tumor removal site in his groin. As the days went on, the pain kept getting worse. By the middle of last week, he was barely able to walk and he couldn't take the pain anymore so I took him to the ER...again.
So, on 1.28.15, we were yet again waiting in an ER room and Jimmy was getting CT and MRI scans. He was scheduled to have his next scans this week but it was upsetting to yet again have to get scans before the time they were due. This is the same thing that happened last time. He didn't even wait the full 3 months before he needed to have scans again because of a problem.
Well, it didn't take long to find out why he was in pain...two more tumors in his leg and more lung metastasis. At first, they thought there was only one tumor encased in a blood clot but, after the MRI, they determined that there was also another tumor as well. They also found two nodules in his lungs that are very concerning and a lot of smaller ones. Also, the prosthesis for the femoral vein is blocked.
Dear God...we need a break! This was not the news we wanted or expected. Like Jimmy wasn't already feeling bad enough with all of the pain, now this.
He ended up staying in the hospital for two nights and they were able to get his pain under control while he was there. After have been off of all pain medication, now here we are starting all over again. The oncologist that oversaw his care in the hospital said he believed the next course of treatment should be chemotherapy.
On February 2, we went to see Jimmy's oncologist and his surgeon at Penn Medicine. Dr. Hartner came in to talk to us after reviewing the scans and reports from the hospital. He said it didn't look good and we asked that he be completely honest with us and give us all of the information about what could be done for Jimmy. He also said the chemo was the next logical step. Since Jimmy is still recovering from the November surgery, his body is not able to handle another major surgery right now. Also, since he has had so much radiation in the tumor area already, he cannot have more radiation there. So, here's what he said...there is no cure for Jimmy. The sarcoma keeps coming back over and over again and quicker each time. If Jimmy chose to do nothing and decide not to have any treatment at all, he would most likely not last 6 months. If he chose chemotherapy, there was a possibility of remission. It basically comes down to Jimmy's ability tolerate the treatment, if it worked, and his quality of life. It was incredibly shocking to hear this news. The doctor was telling us that Jimmy is dying and there isn't much they can do but try this chemo. If this regimen of chemo doesn't work, they could try something else but this was best hope for prolonging his life. He said they would know in 3 treatments whether or not it was working and how to proceed. We also talked about clinical trials but there are any that would work for Jimmy's kind of cancer right now.
Later in the day we met with Dr. Weber, Jimmy's surgeon. She agreed with Dr. Hartner in that this was the best course of treatment. She reiterated all that he had told us. She said that if there is anything Jimmy always wanted to do or anywhere he always wanted to go, then he should do it now so long as he felt like it. Here she was telling him that he didn't have much time and that he needed to enjoy his life now. Again, it comes down to Jimmy's quality of life.
We headed home after a long day of information we could barely process. Jimmy is now literally faced with his mortality. This sucks. Jimmy said he wanted a second opinion so, the next day, I made appointments with Fox Chase Cancer Center and MD Anderson at Cooper Hospital. We both wanted to know if chemo really was the best next step or if there was something else out there. Dr. Hartner had already scheduled Jimmy to get his port and his first chemo treatment, so the timing of getting appointments beforehand was critical. I was able to get him in to Fox Chase yesterday and the doctor there agreed with Dr. Hartner's protocol. Hearing that came with mixed emotions for both Jimmy and I. We were really disappointed that there really isn't another alternative for him right now but relieved that his treatment wouldn't have to be postponed. That was a concern we had if we decided to switch doctors. Since, the doctor in the hospital, Dr. Hartner and the second opinion all agreed on the treatment, we decided to cancel the appointment with MD Anderson, which was scheduled for 2/9. I know that some of you reading this might think this wasn't a good idea but we heard from 3 different sources and felt that was enough information for Jimmy to go ahead as planned. My choice of a second opinion would have been MDA and not Fox Chase but that's not the way it worked out.
So, today, Jimmy got his port put in. The procedure took about 2 hours and went well. He has two small incisions and the port is completely on the inside. I have seen people who have tubes on the outside but Jimmy's is under the skin. They used butterfly stitches and surgical glue to close the incisions. Here's a pic of the what it looks like...
Jimmy is very depressed and is having a hard time coming to terms with just how sick he is and that he may die soon. As for Logan, he is 12 years old. He is incredibly sad and he misses doing fun things with his dad. He doesn't know the severity of Jimmy's cancer this time. We have chosen to only tell him that his dad is having another round of chemo right now. I am not ready to have a conversation with Logan about Jimmy dying. That conversation will happen only when it absolutely has to happen. I worry about him so much and I know this is bothering him more than he says, even though he comes to me when he needs to talk. As for me, I am a stressed out, exhausted mess. Even before last week when we found out the cancer was back, I had starting having migraines and began taking medication for them. I truly need a break. This has been so hard on me and I feel like I can't explain to anyone just how bad it is...not even my therapist...because I know they don't truly understand. I can be crying on the way to talk to her and when I get in there I can't seem to cry. I keep feeling like I need to be strong all the time and not let people know just how hard this is for me. I don't want to cry in front of Jimmy or Logan so I feel like I'm alone in this struggle.
This has also been extremely hard financially because we are self-employed with a construction company and Jimmy hasn't been able to work or run the business on a regular basis in the past 2 years. Since Jimmy's surgery in November, we haven't worked at all due to his health as well as the weather here in the northeast. We are considering closing the business because I can't run the business by myself. We are going to see if the chemo works before we talk about it anymore. Even before we found out the cancer was back, I started looking for work. I was a legal assistant for 20 years when I decided to stay home with Logan when he was 4 years old. Right now, I need to find a job but, now that Jimmy is sick again, how do I do that? I am only able to work part time because I still have to be here to take care of him. For now, I will keep looking and hope that something comes along soon.
I feel like I have begun to ramble so I will stop writing for now. As hard as it is to get started writing an entry sometimes, there are times that its hard to stop once I get going...like this one.
Anyway, I really want to thank everyone for their prayers and support. Please don't stop praying because our family needs your prayers now more than ever. Chemo starts on 2/10 and I will post on Jimmy's progress after that.
Thanks for listening...oh, and did I mention that...
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