2/25/15
Well, last Wednesday, Jimmy completed the first full round of chemo. We had to postpone the treatment from Tuesday because of the weather. Its not bad enough Jimmy is going through chemo, we have to worry about the weather allowing him to even make it to the treatments. This time he got both chemo drugs, Gemzar and Taxotere, along with a host of other drugs. This treatment took about 4 hours and left Jimmy tired afterwards.
The next day he was scheduled for his Neulasta injection, the shot that helps boost his immume system and costs $3,000 for one shot. That morning he had a severe pain episode and we weren't sure whether or not we would have to go to the ER or not. I called Jimmy's oncologist and they said to come in as soon as we could so they could evaluate him. They said he may need to have IV fluids for hydration or that his pain medication wasn't working well enough. Well, we made it there and he was able to get his injection. It was determined that he wasn't getting enough pain medication to keep the pain under control. Here we go again...I see another fight with the insurance company in my future.
As predicted, I spent 2.5 hours and when to 2 pharmacies to try to get his medication...this was done during treacherous driving conditions...why wouldn't it be?! Of course, due to insurance restrictions, I wasn't able to get everything that Jimmy needed. This is such bullshit. I am so tired of fighting to get Jimmy the medication he needs. If I call a pharmacy to see if they have what I need, they either tell me they can't tell me if they have it or that they don't have it at all. I guess I'm just expected to drive around from pharmacy to pharmacy until I find one that a) takes our insurance, b) has the medication in stock and enough to fill the medication (most don't have enough), and/or c)is willing to call other pharmacies if they can't help me. It is a nightmare every time I have to get medication for him. If I get to a pharmacy that doesn't have enough of the medication and I decide to get what they have, it voids the rest of the prescription so I have to go back to the doctor to get another one...of course, that means driving an hour to Philadelphia to get it. Ugh.
In the past week, Jimmy has continued to be in pain...off the charts kind of pain...and we have contemplated the ER a couple of times. He is feeling very weak and chemo'd out. The metallic taste in his mouth is back and food is starting to taste funny to him. At this point, Jimmy is either awake and in excruciating pain or asleep and out of it from the medication. He is having a zero quality of life right now. I just want him to have some pain relief...and soon. It seems like the pain in his left groin/hip and knee area is in pain all of the time. He has started having pain around to his back on the left side as well. It seems like the chemo isn't doing anything. I thought by now, some of his pain would start to subside...not get worse, which is what is seems to be doing.
Yesterday, I had to take Jimmy to have blood drawn to check his levels and it was all he could do to shower and get out of the house. Just showering (he's using the shower chair again because he can't stand for that long) wipes him out. Getting around the house is very hard and he walks so slow...like a little old man...and sometimes he has to lean on me to walk. It breaks my heart to see him this way. I still can't believe this is our life.
Jimmy has been very depressed and I know he is ready to just give up. While I know he won't, he realizes that Logan needs him for as long as possible. That is both of our priorities...making sure Logan's life stays as close to normal as possible. Its been hard and, especially since Logan is aware of everything that is going on, it continues to be hard. Logan, however, seems to be doing okay. I know he is sad and is tired of seeing his Dad so sick but he really does seem to be handling it well.
As for me...well, here goes my selfish rant about how I feel...its been a rough couple of days...
I am so sick of this shit. Our life sucks. I am tired and exhausted every single day and there are days I wish I could just stay in bed with my head under the covers and pretend that this isn't happening to our family. I am tired of being a grown up. I don't like feeling lonely but I need time alone. I want someone to take care of me once in a while. I'm tired of not being able to cry in my own home, because it isn't fair to Jimmy or Logan. Jimmy has said he doesn't want to see it and that he needs me to stay positive. For obvious reasons, I don't want to get upset in front of Logan. I want to guilt-free leave the house to do something fun once in a while. I wish we had disposable money to spend or, at this point, just money to pay our bills. Jimmy doesn't want me to say anything about that but, guess what, this is my blog and my rant. We are struggling financially in a way I never thought possible. We used to be able to take two vacations a year and buy what we needed and more. Since Jimmy got sick 2 years ago, thankfully we had savings we could use to live on when he couldn't work and the business wasn't working. We were very lucky to have a backup to help us because I know so many people don't but now that reserve is gone. It scares the shit out of me that we now worry about how to pay our household bills. Jimmy can't get social security disability and there are hardly any programs out there to help us. We fall through the cracks...we don't have money now but because we did in the past, we are excluded from help. Our next step is county assistance...talk about embarrassing. I can't go to work right now because Jimmy needs me to take care of him. I will post our fundraising link here because, at this point, I have no pride left. This is not who I am...I don't like to ask for anything but we need help and I am asking you to help my family. I hate this. I also find myself being envious when I see my friends doing fun things with their families. I can barely hug Jimmy without causing him pain. I see life moving around me but feel very disconnected to it. Right now, I don't want to know if anyone else is sick, or hurt, or tired...frankly, I don't give a damn. Unless you are living our life, you have no idea what its like. It sucks like nothing you could every imagine. I am tapped out for sympathy for others right now. I know I sound like a selfish bitch but, guess what, I don't care. Tomorrow, I may feel differently, but right now I don't give a shit about anyone else. My only concerns right now are Jimmy and Logan. Okay...bitchy, selfish rant over.
There are some positives though...I do have one girlfriend who has gone over and above to make me feel special and pampered without pitying me...thanks Jade! I have another friend who helps me constantly with Logan and for that I am so grateful...thanks S. And, of course, without you, Lisa, I have no idea what I would do when I feel like crying my eyes out...even though you live so far away. I am grateful for all of the support and prayers we have gotten from people we know and people we don't know. I have found making friends from the Facebook Sarcoma groups has been helpful. There are people going through the same thing at the same time and there is comfort in that so you don't feel so alone. I am grateful that Jimmy is still here and I can touch and kiss him and tell him I love him. I thank God every day for my son, who is so sensitive and caring and does everything he can to help me and make me feel better. A hug from Logan seems to make it all better, if only for that moment and that's good enough for me.
Jimmy's next chemo treatment is next Tuesday and I will keep you posted on how that goes...thank you for listening...again. xoxo
Wednesday, February 25, 2015
Thursday, February 12, 2015
Major Breakdown This Weekend...1st Chemo Treatment Over
2/12/15
Well, I knew it was coming and there was nothing I could do to stop it...the BREAKDOWN. This past Saturday it hit me. My husband might die soon. The anxiety of it all became too much for me to handle. I was a crying mess all day long. To make matters worse, our son was having one of his "I'm not listening" days too. As for Jimmy, he was crying too. It was one of those days where none of us were able to help each other.
I had to run an errand that morning and I cried the whole time I was out. I don't always feel comfortable crying in front of Jimmy. He needs me to be his rock and the voice of optimism. Honestly, I can't always to that. I need to have a pity party of my own and he often doesn't understand that since I'm not the one who is sick.
While I was out, Jimmy decided to tell Logan what was really going on. He told him everything. For those of you who think this wasn't a good decision. Well, it was a right decision for our family. Logan is a need-to-know kid and telling him was a good thing. I'm very glad that it came from Jimmy alone. I believe that Logan needed that time with Jimmy to process the information. Jimmy said Logan got upset and cried a lot but that he seemed okay with it. I know this is something that a boy should never have to deal with and my heart hurts for him.
Sunday wasn't really any better. The anxiety of Jimmy starting chemo on Tuesday, February 10th I'm sure is a big part of all of this emotion. I know we all are hoping beyond hope that this chemo works and will do so for a long time to come. As much as I didn't feel like having people over, Jimmy's Dad and his best friend came over to visit. I know Jimmy needs this interaction and support and I'm glad they came.
The reality is that this treatment is only a way to prolong his life, not cure him and that makes me very, very sad. It makes me sad for the things Jimmy won't be able to do with Logan and I. We may not go on another family vacation, which is something that we love to do as a family. He won't be here for Logan graduating from high school. He won't see Logan go to college. He won't see Logan get married or have children of his own. He won't grow old with me. I know this might seem selfish and make me sound like I'm being a defeatist but this is our life.
I feel so overwhelmed and helpless right now. I almost feel like I am grieving for our life as we once knew it. We are on the verge of closing our business because Jimmy is unable to run it. I am still looking for work and can't find anything. We have bills that just sit because we can't pay them. Almost daily these days, I deal with an endless list of problems with our insurance company and getting them to cover prescriptions for Jimmy. I am still having migraines. I am depressed and just want to sit on the couch all day. I feel like crying all the time. I see Jimmy having such a tough time getting around and in so much pain that I wish I could just take it all away for him.
I have made friends with people on Facebook through pages for people also battling sarcoma. It is comforting to be able to talk to people going through the exact same thing. As sad as it is, only people going through this truly understand the pain and anxiety cancer brings.
I am relieved that Jimmy had his first chemo treatment this past Tuesday. His port incision is healing nicely but was a little sore when they accessed it for treatment. His treatment cycle is 21 days. On day 1 he gets Gemzar and on day 8 he gets both Gemzar and Taxotere. He gets pre-medication too and there are other drugs but those are the main drugs to treat the cancer. His neulasta shot is given on day 9 (that's the injection that boosts his immune system). He will have 3 cycles of treatment and then more scans to see if it is working.
The treatment on Tuesday went without incident. Jimmy had blood drawn before the treatment and we saw the doctor just so they could confirm that his blood counts were okay for him to start treatment. The pre-meds lasted about 15 minutes and the Gemzar took about an hour and a half. The next treatment will be much longer because the Taxotere will be given too. The drugs have to be given in succession. They cannot be given simultaneously.
Jimmy felt tired after the treatment on Tuesday night. Since he is still taking all of his other medication, he was a little out of it that night. Yesterday found him also being very tired and in pain. The pain seems to be getting worse and he really has to stay on top of the pain medication or the pain becomes unbearable.
This is so hard to watch. I want to just hold him to make it somehow better but I can't really get close to him because of the pain. His left side is in pain because of the tumors. His abdomen is still sore and now his right side has the port on it. This makes me sad that I can't hug him without him having pain.
I know was a very depressing post but my thoughts right now are indicative of my feelings about our life. I am not asking for anyone to feel sorry for me but merely to have empathy for our situation.
I ask for your continued prayers and support. xoxo
Well, I knew it was coming and there was nothing I could do to stop it...the BREAKDOWN. This past Saturday it hit me. My husband might die soon. The anxiety of it all became too much for me to handle. I was a crying mess all day long. To make matters worse, our son was having one of his "I'm not listening" days too. As for Jimmy, he was crying too. It was one of those days where none of us were able to help each other.
I had to run an errand that morning and I cried the whole time I was out. I don't always feel comfortable crying in front of Jimmy. He needs me to be his rock and the voice of optimism. Honestly, I can't always to that. I need to have a pity party of my own and he often doesn't understand that since I'm not the one who is sick.
While I was out, Jimmy decided to tell Logan what was really going on. He told him everything. For those of you who think this wasn't a good decision. Well, it was a right decision for our family. Logan is a need-to-know kid and telling him was a good thing. I'm very glad that it came from Jimmy alone. I believe that Logan needed that time with Jimmy to process the information. Jimmy said Logan got upset and cried a lot but that he seemed okay with it. I know this is something that a boy should never have to deal with and my heart hurts for him.
Sunday wasn't really any better. The anxiety of Jimmy starting chemo on Tuesday, February 10th I'm sure is a big part of all of this emotion. I know we all are hoping beyond hope that this chemo works and will do so for a long time to come. As much as I didn't feel like having people over, Jimmy's Dad and his best friend came over to visit. I know Jimmy needs this interaction and support and I'm glad they came.
The reality is that this treatment is only a way to prolong his life, not cure him and that makes me very, very sad. It makes me sad for the things Jimmy won't be able to do with Logan and I. We may not go on another family vacation, which is something that we love to do as a family. He won't be here for Logan graduating from high school. He won't see Logan go to college. He won't see Logan get married or have children of his own. He won't grow old with me. I know this might seem selfish and make me sound like I'm being a defeatist but this is our life.
I feel so overwhelmed and helpless right now. I almost feel like I am grieving for our life as we once knew it. We are on the verge of closing our business because Jimmy is unable to run it. I am still looking for work and can't find anything. We have bills that just sit because we can't pay them. Almost daily these days, I deal with an endless list of problems with our insurance company and getting them to cover prescriptions for Jimmy. I am still having migraines. I am depressed and just want to sit on the couch all day. I feel like crying all the time. I see Jimmy having such a tough time getting around and in so much pain that I wish I could just take it all away for him.
I have made friends with people on Facebook through pages for people also battling sarcoma. It is comforting to be able to talk to people going through the exact same thing. As sad as it is, only people going through this truly understand the pain and anxiety cancer brings.
I am relieved that Jimmy had his first chemo treatment this past Tuesday. His port incision is healing nicely but was a little sore when they accessed it for treatment. His treatment cycle is 21 days. On day 1 he gets Gemzar and on day 8 he gets both Gemzar and Taxotere. He gets pre-medication too and there are other drugs but those are the main drugs to treat the cancer. His neulasta shot is given on day 9 (that's the injection that boosts his immune system). He will have 3 cycles of treatment and then more scans to see if it is working.
The treatment on Tuesday went without incident. Jimmy had blood drawn before the treatment and we saw the doctor just so they could confirm that his blood counts were okay for him to start treatment. The pre-meds lasted about 15 minutes and the Gemzar took about an hour and a half. The next treatment will be much longer because the Taxotere will be given too. The drugs have to be given in succession. They cannot be given simultaneously.
Jimmy felt tired after the treatment on Tuesday night. Since he is still taking all of his other medication, he was a little out of it that night. Yesterday found him also being very tired and in pain. The pain seems to be getting worse and he really has to stay on top of the pain medication or the pain becomes unbearable.
This is so hard to watch. I want to just hold him to make it somehow better but I can't really get close to him because of the pain. His left side is in pain because of the tumors. His abdomen is still sore and now his right side has the port on it. This makes me sad that I can't hug him without him having pain.
I know was a very depressing post but my thoughts right now are indicative of my feelings about our life. I am not asking for anyone to feel sorry for me but merely to have empathy for our situation.
I ask for your continued prayers and support. xoxo
Saturday, February 7, 2015
The Cancer is Back...Again
2/6/15
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...
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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