Treatments Not Working...Sad and Depressed...Last Resort is Clinical Trial

7.5.15

For those of you who might be new to my blog, here's a recap of my husband's journey...

Jimmy was diagnosed with Stage III high grade undifferentiated pleomorphic sarcoma in February 2013. It started in his left hamstring. He had chemo, radiation and surgery in September 2013. Lung mets were found in March 2014 and he had them surgically removed in April 2014. Metastasis to his lungs meant that he was now Stage IV. In August of 2014, a groin/pelvic tumor was found and then he had radiation and surgery in November 2014. This surgery lasted 10.5 hours and he was left with 3 feet of incisions. In February 2015, he was diagnosed with recurrent hamstring and groin/pelvis tumors as well as lung mets. This recurrent disease means that he can't be cured and that his condition is terminal. He had 3 rounds of a chemo treatment (Gemzar/Taxotere) that didn't have positive results. The chemo was given with the hope of stopping the growth of the tumors and prolonging his life. This has been a very tough ride for our family and every day cancer continues to live in our life.

On May 4th, Jimmy started his new chemo regimen. Thankfully, the doctor is allowing him to have his treatments on an outpatient basis at a closer location to where we live, so Jimmy won't have to be in the hospital and I won't have to travel so much. He started him on a lower dose of one of the drugs, ifosfamide, since he was in the hospital for two weeks last month. He wants to make sure he can tolerate the treatment before giving him the larger dose. This was a long day. We were at the doctor's office for over 5 hours that day and Jimmy felt the effects of the chemo right away. Aside from the normal pain he has, he instantly became tired after the treatment. The next day was only 4 hours and Jimmy was really out of it and already felt like he had "chemo brain". That night, he had a really bad fall in the middle of the night while getting up to go to the bathroom. He tripped over the dog and fell hard on his knees. The round of chemo seemed to hit Jimmy hard. His body is already so weak and with this being a harsher combination of drugs, its getting harder and harder for him to tolerate it. He just came home every day and stayed in the bed until the next morning when he had to do it all over again. Jimmy was also very nauseous and even vomited. I've known Jimmy for nearly 20 years and have only seen him be sick that way twice.

Mother's Day came and went very quietly this year. Jimmy was worn out from chemo so Logan and I just went out to dinner to our favorite hibachi restaurant. It seemed weird to be celebrating without Jimmy but that's kind of what our life has become. We brought him some food home but it just isn't the same anymore without all 3 of us together celebrating.

On May 12th, we were back at the local emergency room because Jimmy started running a fever. Fever can be dangerous with Jimmy's blood counts being so low. His pain is still a huge issue and they continued to keep him on lots of pain meds. Jimmy ended up having to have 2 blood transfusions and was in the hospital for several days. He came home on heavy duty antibiotics for fear of infection. They had also been keeping his heavily hydrated in the hospital and they set us up with at home IV hydration and an at home nurse and physical therapist.

Jimmy has been sad and depressed lately and its been very hard to watch him be that way. He even went so far to say that he felt like he was dying. All I can say is thank goodness for my therapist. She is wonderful and it really is a big help to me being able to talk about how all of this makes me feel. Jimmy said he would like to talk to someone as well and I think that's a good idea.

Jimmy's next chemo treatment was supposed to start on May 26th but as luck would have it he started running a fever on May 23rd. I called his doctor and he said to watch it and, if it got worse or did not go away, he would want him to come to Philadelphia to the hospital. The fever persisted and I took him to the emergency room at Pennsylvania Hospital on May 24th because of the fever as well as severe pain and swelling...this time his right leg...the good leg...was swollen larger than his left. They did an ultrasound on Jimmy's right leg and found that he had a massive blood clot in his right leg. It extends from his groin area to his ankle. WTF...and the hits just keep on coming. They admitted him to the hospital and I decided to stay the night since it was so late already. Let me just say that hospital cots suck. I hardly got any sleep but it was worth it being able to be there first thing in the morning. Jimmy's doctor put him back on blood thinners because of the blood clot but Jimmy has to be watched closely because of the previous bleeding in his abdomen. Since he was in the hospital, the doctor thought that Jimmy could go ahead with the next chemo treatment too. It started a little later than planned because of pain but at least he didn't have to wait to continue treatment.

Jimmy was having a very tough time getting in and out of bed and walking wasn't even an option. He hadn't been able to go to the bathroom in days either. Of course, I have to help him with everything because he doesn't want anyone else to do it but me. On 5.27, I decided to take a day off from the hospital to get some things done around the house and to spend some time with Logan and Jimmy ended up having a bad day and night. The next day I was giving Jimmy a bath and I pulled his port out. He sat down on the bed and I didn't give the tube enough slack and the needle came right out...of course, he was getting chemo at the time and the medicine went all over him. Thankfully, he nurse said that the drug was not a skin irritant or it could have been a lot worse. It seems like the bad just never stops. We could all really use a break.

While at the hospital, Jimmy's doctor wanted him to meet with the palliative care team about his pain. Jimmy didn't want to but we talked to them anyway. FYI...Palliative and hospice are similar methods of care. The difference is that palliative care is given when treatment is still available to the patient, such as chemo. Hospice care is given when no more treatments are available. It was very confusing to us and it seemed so drastic and sad to be talking about these types of care already. The palliative care team suggested that methadone might be a better drug to use instead of using morphine, dilaudid and oxycodone together. They seemed to think that the methadone would control the pain better and that Jimmy could use oxycodone only for breakthrough pain instead of worrying about dosing 3 different drugs all day long. Of course, there's the stigma of "methadone" and it being used for heroin addicts. Nonetheless, Jimmy decided to try it. They said it would take a couple of days to build up in his system but our fingers were crossed that it would be the drug that finally got the pain under control.

By 5.31, Jimmy's pain seemed to be getting a little better. The doctor had said the day before that he wouldn't be able to go home unless he got out of bed and sat in a chair for an extended period of time, got up and tried to walk and poop...haha. Well, that's what he said. Jimmy definitely managed to meet all 3 of his goals...woo hoo! His blood counts were still low and he had to have another blood transfusion but, on June 1st, Jimmy was able to come home. He came home with a dilaudid pain pump just to be on the safe side. He wanted to have the option of having the medicine if he needed it in case the methadone didn't work. Jimmy's next scans were scheduled for the following week and we would find out if this chemo was working.

On June 6th, we celebrated our 16th wedding anniversary. Since Jimmy had just finished another round of chemo, he wasn't feeling well so we just stayed in and ordered take out. I was just happy we were all together and Jimmy was not in the hospital.

With Jimmy being in and out of the hospital so much in the last couple of months, Logan is really having a hard time. His school work is suffering and his behavior is showing the stress. It seems like ever since we found out the regimen of chemo in February and March wasn't working that he's taken a turn for the worse. I don't know how to help him. I can't do anything to stop what is happening to Jimmy and it makes my heart hurt for Logan. I want to protect him but there is nothing I can do. I just continue to watch him crumble and make bad choices. If we just got some sort of good news, I think it would go a long way in helping Logan deal with all of this. The only way I knew to try and help is to have him spend some quality time with Jimmy and to get him more therapy. So, even though there were only a couple of weeks left for Logan at elementary school, I opted to take him out of school for several days. He still participated in all of the important events but was able to take a break, chill out and spend some quality time with Jimmy too. Jimmy was even able to make it to Logan's 6th grade graduation and Logan was extremely excited that he did. Even Logan's friends were happy to see Jimmy. Now that summer is here, Logan is keeping busy on a swim team, hanging out with his friends and going to a couple of camps. I just want Logan to enjoy life and be a kid this summer.

Jimmy had his scans on June 10th and 11th. I had to disconnect his pain pump so he could get the MRI and he decided that he didn't want it reconnected. That's a good sign that the methadone is working. On the 12th, I met with his doctor and we went over the reports. Sadly, this chemo didn't work either. The tumors are still growing and there is an additional tumor in his abdomen. This tumor is in the same place where his abdominal bleeding was previously so I tend to believe that the bleeding most likely masked the appearance of the tumor at that time. Jimmy's doctor said he would try to get us in to talk to the doctor at Fox Chase Cancer Center about an immunotherapy trial (Keytruda is the drug) that has just opened up there. This trial is actually being done for people with Jimmy's specific sub type. He said there was a slim possibility of getting into this trial because of the high demand but it was worth a shot. There really is no other alternative but a clinical trial for Jimmy at this point.

On June 22, we went to see the doctor at Fox Chase about the immunotherapy trial. We went over all of the details of the trial and the doctor determined that he would be eligible for this trial, as well as another one, but they had to check with the host facility to see if there was room in the trial for Jimmy based on his sub type of sarcoma. The next day they called us and told us that the trial only had 10 spots available for his sub type...9 were taken and there were 10 people on a waiting list for the last spot. So, this trial is a no go. Another setback. We scheduled another appointment to see the doctor on June 25th to talk about the other trial...a chemo drug (Yondelis) that is already approved for other use in other countries but not in the United States. We met with the doctor and Jimmy was preliminarily accepted and is in the screening process. They said the screening will take about 2 weeks. Since this really is the last resort of treatment, I hope that Jimmy gets into this trial. Even though this trial is not specific to Jimmy's type of cancer, it is better than no treatment at all. With lots of prayers and a little good luck, he will get accepted and it will help to prolong his life a little longer.

This has been and continues to be such an emotional roller coaster for all of us. Jimmy and I have certainly had our moments over the past 2 1/2 years. The past few weeks are no exception. With both of us being scared, stressed and worried, we have been arguing a lot lately and that's not something I want to do. I think being in the waiting pattern about the clinical trial is making it harder for both of us. Jimmy is dealing with his mortality and I'm dealing with the potential loss of my husband and my life partner. I want Jimmy to want to get out of bed more. There are days when I feel like he is dying before my eyes. I want him to enjoy every minute he can while he can. Summer is our favorite time of year and I don't want to waste a single minute of it. Sometimes, I feel like I am already a single parent. I no longer even feel like a wife...only a caregiver. I know he hates that I have to do so much for him. I know that he wishes he could provide for us the way he used to do. We argue about money or rather, the lack thereof. I've tried to go to work twice at part time jobs just to bring some money into the house but can't because I'm unable to be dependable since Jimmy's been in and out of the hospital so much. Its a vicious catch-22. Jimmy and I have also done a lot of crying together lately and I am grateful that we have each other to lean on because no one truly understands what this life feels like. I also feel like I'm caught in the middle between Jimmy and Logan a lot. I have found myself in situations where I feel like I'm disappointing one or the other of them. I don't want Logan to feel slighted because I have to spend so much time taking care of Jimmy and I don't want Jimmy to feel neglected or left out when I have to do things for Logan. Again, another catch-22.

Like I'm not already tired of going to the emergency room, yesterday (July 4th) I had to take Logan at 5:00 a.m. to the ER because he was having severe ear pain and pinkish discharge coming from his ear. Because of all of the swimming he's been doing, he's developed a bad case of swimmer's ear. Thankfully, it was a quick trip and we were in and out in about 2 hours. By ER standards, that's like the express line at the grocery store...haha. He is on antibiotic drops and is feeling better today.

Despite everything, I am happy to say that in the last couple of weeks, Jimmy's pain has seemed to be much better under control. Apparently, the methadone is working. It is also a relief to see Jimmy wanting to get out of the house a little. There are days he doesn't want to (like yesterday) but he has managed to get out and sit at the pool a couple of times and to take a couple of walks (in a wheelchair) outside. It might not sound like much but I'll take it. Any chance to do something normal these days is a good thing.

My honey at the pool last week...he appears to be giving me the evil eye...


Today, he sat at the pool for a couple of hours even though he was nauseous and vomiting this morning. He probably should have eaten something before taking his medication with just coffee. His appetite isn't that great anymore and he has to force himself to eat sometimes. Of course, sitting outside wears him out and as I type, he's taking a nap...and snoring...haha.

Again, thank you to everyone that has been praying for our family. Please don't stop. Your support truly means a lot to us.
xoxo