It has been a week of emotion and realization that this is really happening. The running theme is pain, some nausea, fatigue and a slight fever. Some days are definitely better than others. The beginning of the week Jimmy was very tired and in a lot of pain and he even had a mouth sore. He has stayed in bed most of time and his mood has been optimistic. I am grateful that he hasn't been throwing up like we expected. Thank you God for small favors.
On Thursday, February 21, 2013, he had a follow-up visit with the oncologist to check his progress and blood counts. He has lost 30 pounds and as expected, his white blood cell count is non-existent and he is very susceptible to anything and everything at this point. If he were to get sick right now, it could be very dangerous for him. I don't like that we have had to tell people that they can't come visit, but I know they understand. By the middle of next week, his counts should be back to normal. The nurse also said that Jimmy would definitely lose his hair. I really don't want this to happen but I'm not holding out much hope since it already appears to be thinning. I can't believe that my "Samson" won't have hair. That's his trademark. Well then, he will just have to rock the Kojak look.
Friday, February 22, brought a day of Jimmy feeling really good. He even wanted to get out of the house and do a little driving around. However, he has now paid the price for all of that running around. Today, Saturday, February 23, 2013 is not a good. day. He is depressed and in pain, both in his leg and his back. He is having some other issues as well and the chemo has caused any little nick or abrasion he gets to become a raging mess. The cold, rainy weather isn't helping his mood either I imagine.
This morning was a morning of a lot of negative conversation. It is very hard for me to hear when Jimmy starts to become negative. Where is my strong, positive husband? I wish that this wasn't happening but its too late for what ifs. I hate cancer. It is controlling our lives right now and there is nothing we can do about it. We WILL beat this and I will do everything I can to make sure that happens.
As for Logan and I, I continue to be exhausted but want to continue to be the rock that Jimmy and Logan need through this process. Logan is having a tough time controlling his emotions and has been acting out. It truly hurts my heart that I can't shield him from all of this because I know he doesn't really understand.
I do want to continue to thank everyone for their prayers and support, including those who have brought us food and offered to help and have helped with Logan. Thank you also to my friends (you know who you are) who have let me vent when I needed to do so.
Saturday, February 23, 2013
Sunday, February 17, 2013
February 17, 2013 - Round One Down
February 14 - Happy Valentine's Day. I never thought I would ever have to say that my husband would have cancer but it is at a time like this when you realize how much you love someone. I can't imagine life without Jimmy and I pray to God that He will make him well and whole again.
Jimmy called me this morning to tell me that the doctors thought he had a urinary tract infection and that there were a couple of other things going on. I wanted to get to the hospital asap but Logan wanted to see his Dad for Valentine's Day. It really meant a lot to him (even thought he would miss his class party), so I let him get out of school early. Logan made Jimmy a card in the morning and I picked up a dozen balloons and some candy and off we went. Logan was very excited to see his Dad and Jimmy was just as excited to see Logan. Aside from the location, it seemed normal for all of us to be together. Our Valentine's dinner included cafeteria burgers and fries and a heart-shaped box of candy for dessert. It didn't matter what we ate or where we were, but that we were all together. I could tell Jimmy was in better spirits during the visit and Logan seemed more at ease after he saw Jimmy (he was relieved that Daddy still looks like himself)...very comforting to see.
February 15 - I got to the hospital early and wanted to spend the entire day just in case something else came up. Today is the last chemo treatment for this round. Jimmy is feeling nauseous this morning and is very tired. This seems to be getting worse as the days go on. His leg seems to hurt more every time he gets up too.
The oncology nurse came before I even got there and gave Jimmy all of his medication to take home and continue to take until the next treatment...11 different ones every day, some more than once. It is overwhelming in both volume and cost. Thankfully, the doctor gave us the first dose of the most important medicine that has to be taken after chemo ends...it costs $3,600.
I am exhausted and stressed beyond belief. I just want this to work and to be able to get through it with a positive result for Jimmy. It is really hard to see him in a hospital bed every day getting weaker and constantly in pain.
I decided to spend the night at the hospital since the doctors anticipated Jimmy going home the next day and so I wouldn't have to go back and forth again. We just talked and watched television all day. It was nice to just be together but Jimmy seemed a little agitated today. I'm guessing it was anxiety about just wanting to get the chemo treatment over coupled with the fact that he hates being sick. During the treatment, (which is 3 hours for the one medicine) the medicine didn't want to drip properly into the PICC and instead of 3 hours it took almost 4 to finish.
February 16 - It is Saturday and the day Jimmy gets to go home. Thank goodness. It was a long night in a very uncomfortable cot but I got to be with Jimmy all night and I was getting to take him home...finally. This was another long week. Poor Logan got shuffled around all week and I know he will be happy to just be at home. Even the dog acted weird all week.
The doctor came in and told us that the results of the urinary tract infection test were negative. A little good news...we'll take any we can get at this point. He also told us that all of Jimmy's blood counts were still normal but that we should expect them to drop dramatically as the week went on. Jimmy was very tired but ready to go home.
For those of you who have asked about visiting, Jimmy isn't really up to visitors just yet. He just wants to relax and try to feel better right now. We want to thank everyone for all of the kind well wishes and prayers, and those of you who have dropped off food and goodies. It really means a lot to all of us.
Jimmy spent the rest of the weekend in bed. He was still very nauseous and tired. He is pale and continues to lose weight. The hair loss should start in the next 10 days or so. Even though round one of the chemo treatment is finished, his body is still dealing with the consequences. He says he is having weird, nightmarish dreams at night too. It feels like we are on a runaway train...I wish I could do something, anything to make it stop.
The bills have started coming in too...$10,000 worth of bills before the chemo treatment ever started...ugh.
Jimmy called me this morning to tell me that the doctors thought he had a urinary tract infection and that there were a couple of other things going on. I wanted to get to the hospital asap but Logan wanted to see his Dad for Valentine's Day. It really meant a lot to him (even thought he would miss his class party), so I let him get out of school early. Logan made Jimmy a card in the morning and I picked up a dozen balloons and some candy and off we went. Logan was very excited to see his Dad and Jimmy was just as excited to see Logan. Aside from the location, it seemed normal for all of us to be together. Our Valentine's dinner included cafeteria burgers and fries and a heart-shaped box of candy for dessert. It didn't matter what we ate or where we were, but that we were all together. I could tell Jimmy was in better spirits during the visit and Logan seemed more at ease after he saw Jimmy (he was relieved that Daddy still looks like himself)...very comforting to see.
February 15 - I got to the hospital early and wanted to spend the entire day just in case something else came up. Today is the last chemo treatment for this round. Jimmy is feeling nauseous this morning and is very tired. This seems to be getting worse as the days go on. His leg seems to hurt more every time he gets up too.
The oncology nurse came before I even got there and gave Jimmy all of his medication to take home and continue to take until the next treatment...11 different ones every day, some more than once. It is overwhelming in both volume and cost. Thankfully, the doctor gave us the first dose of the most important medicine that has to be taken after chemo ends...it costs $3,600.
I am exhausted and stressed beyond belief. I just want this to work and to be able to get through it with a positive result for Jimmy. It is really hard to see him in a hospital bed every day getting weaker and constantly in pain.
I decided to spend the night at the hospital since the doctors anticipated Jimmy going home the next day and so I wouldn't have to go back and forth again. We just talked and watched television all day. It was nice to just be together but Jimmy seemed a little agitated today. I'm guessing it was anxiety about just wanting to get the chemo treatment over coupled with the fact that he hates being sick. During the treatment, (which is 3 hours for the one medicine) the medicine didn't want to drip properly into the PICC and instead of 3 hours it took almost 4 to finish.
February 16 - It is Saturday and the day Jimmy gets to go home. Thank goodness. It was a long night in a very uncomfortable cot but I got to be with Jimmy all night and I was getting to take him home...finally. This was another long week. Poor Logan got shuffled around all week and I know he will be happy to just be at home. Even the dog acted weird all week.
The doctor came in and told us that the results of the urinary tract infection test were negative. A little good news...we'll take any we can get at this point. He also told us that all of Jimmy's blood counts were still normal but that we should expect them to drop dramatically as the week went on. Jimmy was very tired but ready to go home.
For those of you who have asked about visiting, Jimmy isn't really up to visitors just yet. He just wants to relax and try to feel better right now. We want to thank everyone for all of the kind well wishes and prayers, and those of you who have dropped off food and goodies. It really means a lot to all of us.
Jimmy spent the rest of the weekend in bed. He was still very nauseous and tired. He is pale and continues to lose weight. The hair loss should start in the next 10 days or so. Even though round one of the chemo treatment is finished, his body is still dealing with the consequences. He says he is having weird, nightmarish dreams at night too. It feels like we are on a runaway train...I wish I could do something, anything to make it stop.
The bills have started coming in too...$10,000 worth of bills before the chemo treatment ever started...ugh.
Wednesday, February 13, 2013
February 13, 2013 - 1st chemo treatment
NOTE: I am writing every few days so some info will be in past tense and other will be in present tense. I wish I could write every day but so far I just haven't had the time.
We did have a nice weekend...we even took Logan and a friend bowling. Jimmy came along and watched and it was nice for all of us to get out and do something even if Jimmy wasn't able to participate in the actual activity.
Monday came and we were headed to the hospital. We got a call that morning saying a bed was ready for Jimmy and that we could come anytime. We got to the hospital around 11 am and went to registration. They told us to have a seat and they would be with us soon. We waited and waited...for 2 hours...and I finally went back up to the desk. They said a bed wasn't ready but they called to check and...lo and behold, it had been ready the whole time...ugh! By the time he got to his room and was settled, it was about 1:30 p.m. Of course, by this time, it was too late to get his PICC line and start chemo. Basically, he stayed overnight in the hospital when he didn't even have to be there. Oh well, just one more bump in the road, right?.
Tuesday, February 12 - 1st chemo treatment. Jimmy got his PICC line put in early in the morning. We were very nervous about his first treatment...mostly because we didn't know what to expect. There is about 45 minutes of "prep" drugs before the chemo even starts. Then, the first chemo drug starts...it is bright red and the nurse pushes it through the PICC in just a couple of minutes. He said he could taste it and feel it going through his chest, into his heart and start traveling through his body. The second chemo drug takes about 3 hours. His treatment started about noon and he was finished by 4:30. He felt a little lightheaded most of the day but I think it was from not eating. We also spoke to a social worker about a lot of different things and I feel so overwhelmed with all of the information we have been given. All in all, it was a good first day...even with Jimmy taking about 10 or 11 different medications.
It is Wednesday morning and I'm trying to get to the hospital early so I can bring Jimmy his Starbucks Venti Bold. He said it makes him still feel normal. They tell us that chemo may change his taste buds and that things won't taste the same...I can't imagine the day when Starbucks coffee won't taste good to him.
He is feeling a little nauseous this morning and isn't very hungry. He did have a little something for breakfast but by lunch time he hardly ate a thing. Jimmy's Dad came for a visit and I was able to leave a little early so that I could come home and spend some time with Logan. I hate having to ask people to watch him for me. It seems like he's been shuffled all over the place this week. Poor kid. He really misses his Dad but we Skype Jimmy every night so Logan can "see" him and talk to him. Logan and I did have a fun night...we even had "breakfast" for dinner...blueberry pancakes...yum.
Tomorrow is Valentine's Day and my Honey is in the hospital. This sucks. I hate cancer.
We did have a nice weekend...we even took Logan and a friend bowling. Jimmy came along and watched and it was nice for all of us to get out and do something even if Jimmy wasn't able to participate in the actual activity.
Monday came and we were headed to the hospital. We got a call that morning saying a bed was ready for Jimmy and that we could come anytime. We got to the hospital around 11 am and went to registration. They told us to have a seat and they would be with us soon. We waited and waited...for 2 hours...and I finally went back up to the desk. They said a bed wasn't ready but they called to check and...lo and behold, it had been ready the whole time...ugh! By the time he got to his room and was settled, it was about 1:30 p.m. Of course, by this time, it was too late to get his PICC line and start chemo. Basically, he stayed overnight in the hospital when he didn't even have to be there. Oh well, just one more bump in the road, right?.
Tuesday, February 12 - 1st chemo treatment. Jimmy got his PICC line put in early in the morning. We were very nervous about his first treatment...mostly because we didn't know what to expect. There is about 45 minutes of "prep" drugs before the chemo even starts. Then, the first chemo drug starts...it is bright red and the nurse pushes it through the PICC in just a couple of minutes. He said he could taste it and feel it going through his chest, into his heart and start traveling through his body. The second chemo drug takes about 3 hours. His treatment started about noon and he was finished by 4:30. He felt a little lightheaded most of the day but I think it was from not eating. We also spoke to a social worker about a lot of different things and I feel so overwhelmed with all of the information we have been given. All in all, it was a good first day...even with Jimmy taking about 10 or 11 different medications.
It is Wednesday morning and I'm trying to get to the hospital early so I can bring Jimmy his Starbucks Venti Bold. He said it makes him still feel normal. They tell us that chemo may change his taste buds and that things won't taste the same...I can't imagine the day when Starbucks coffee won't taste good to him.
He is feeling a little nauseous this morning and isn't very hungry. He did have a little something for breakfast but by lunch time he hardly ate a thing. Jimmy's Dad came for a visit and I was able to leave a little early so that I could come home and spend some time with Logan. I hate having to ask people to watch him for me. It seems like he's been shuffled all over the place this week. Poor kid. He really misses his Dad but we Skype Jimmy every night so Logan can "see" him and talk to him. Logan and I did have a fun night...we even had "breakfast" for dinner...blueberry pancakes...yum.
Tomorrow is Valentine's Day and my Honey is in the hospital. This sucks. I hate cancer.
Saturday, February 9, 2013
February 2013 - It Begins
On Friday, February 1, Jimmy went in for a biopsy at Pennsylvania Hospital. It was an outpatient procedure that would require a "twilight" kind of anesthesia and would take a few hours from start to finish. Jimmy was nervous about the anesthesia. His experience at the dentist with anesthesia had always been a terrible one, so he was not looking forward to this at all. I have had several surgeries and told him it should be fine. Take a deep breath and just relax I told him.
We brought Logan with us, since he only had a half day at school and because I really needed the company and the distraction. Logan and I walked around and had some breakfast while we waited. We read, played games and watched television to pass the time. Jimmy finally came out and was a little woozy but not in pain since the anesthesia was still working somewhat. We had been told that we would most likely get the results of the biopsy in 3-4 days.
So, we waited.
And waited.
This was the longest weekend that either of us could ever remember. We laughed. We cried. We were positive. We were negative. We were still in shock.
Finally, on Tuesday, February 5, Dr. Hartner called. Our worst fear was true...it was CANCER. He confirmed that it was a sarcoma but that the subcategory had yet to be determined. He gave us a lot of information to digest but said Jimmy would start treatment as soon as possible, the following week. He would have 6 rounds of chemo, 6 rounds of radiation and then surgery. After the first 3 weeks of chemo, he would be checked out to see how he was tolerating the chemo and if it was working or not. If it was working, chemo would continue. If not, radiation would begin. Chemo is a 3 week cycle. The first week would include 4 days of chemo with the following two weeks off. That night, we both cried as we held each other, not knowing what the future would hold for our family.
The wheels were in motion. More tests were scheduled on Friday, February 8...a CT scan to see if the cancer had spread to Jimmy's lungs as well as an Echocardiogram to see how healthy Jimmy's heart was and whether or not it could withstand the chemotherapy drugs the doctor wanted to use. A outpatient procedure was also been scheduled at the hospital for Monday, February 11, to put a port in Jimmy's chest for the ongoing chemo treatments. The doctor also wanted home health care to monitor Jimmy's fluid levels and white blood cell counts. He told us they would contact us directly to set that up.
How everyone is doing at this point -
Logan is having trouble digesting all of this information. He is only 10 years old and is worried. He asked this morning if it (cancer) was contagious. He also had a really tough day at school today. I feel really bad for him and want to make it better so he is not so afraid. He knows what's going on but doesn't really know what's going on.
As for me, I'm terrified of what the future holds. Jimmy is the strong one who takes care of us. We have our own business and I'm worried what will happen to the business since Jimmy runs it. How will I keep the household going without Jimmy's help? How will I keep things normal for Logan? I have posted what's going on on Facebook and everyone has been so supportive. The thoughts, prayers and comments from friends and family mean more than I can ever say. It doesn't seem like "thank you" is enough. I have to be strong and positive...that's what I keep telling myself whether I believe it or not.
Jimmy is also experiencing fever and chills every night. When he wakes up the sheets are soaked. He is in pain. Thank goodness for the medication. He cries in the early morning hours when Logan and I are asleep. He is still processing the fact that he has cancer. Everything is moving so fast. Less than 2 weeks ago, it was just a hamstring issue, or so he thought. Never did he think this would ever happen to him.
In the afternoon on February 7, the home health care company contacted us. They told us there was a problem getting a pre-authorization from the insurance company "due to a pre-existing condition". WHAT??!!! What does that mean? Jimmy has never had cancer before so what was going on. I contacted the insurance company, Blue Cross Blue Shield, and was informed that there in fact was a problem. They told me that the pre-existing condition was not because of the cancer diagnosis but because we had had a lapse in coverage. We did go without insurance for a period of time before obtaining this policy, however, I didn't understand how this could be happening. The cancer diagnosis was well after the policy went into effect. The policy language regarding this is very broad and non-specific, so it appeared that we should be covered without question. The customer service representative told me that he would look into it further and call me the next day.
On February 8, which would turn out to be a day filled with lots of emotion and turmoil, from beginning to end. First thing in the morning, Blue Cross called. They said that they considered any treatment that Jimmy had for the cancer, would not be covered at all since they considered it to be pre-existing. OMG! I was mad. I was scared. I cried. Jimmy was mad and scared. Would Jimmy be able to get treatment if he essentially had no insurance? We both felt defeated. Now what?
I immediately called the doctor's office. I told Carla, Dr. Hartner's secretary, what was going on. She said she would contact the billing department and see what she could find out. I asked whether or not Jimmy could be denied treatment and she said she didn't know.
Wasn't it already bad enough? We are already terrified of Jimmy having cancer and wondering if it has spread. We are worried about having an income since Jimmy is self-employed and I stay at home. Now this?
Jimmy went to his CT scan and Echo appointments with his Mom while I stayed at home and made phone calls trying to straighten out this insurance mess. I even called a lawyer and got papers to file a claim with the PA Insurance Commission.
I got a call from Laetitia, Dr. Hartner's nurse, assuring me that Jimmy would not be denied treatment. Thank God! She said she was working with the billing department to see how to work this all out. Finally, after many phone calls, it was decided that Jimmy would not get his chemo on a outpatient basis. He would now be admitted to the hospital for the entire week of treatment. He would also not need the port put in since he would be in the hospital and not travelling back and forth every day for treatment. Home care would not be needed either.
Laetitia and I talked for a long time and she assured me that Jimmy would get the care he needed. She said that a hospital social worker would talk to us about billing and try to help us get some sort of assistance for the bills.
Jimmy got the scans done and we were again waiting for news of whether or not the cancer had spread. Laetitia called late in the day...the cancer has NOT spread. Thank you Lord Jesus! Some good news at last!
Today was very emotional and I'm glad its over. We will relax over the weekend and get ready for our family's new normal starting this Monday, February 11.
So, we waited.
And waited.
This was the longest weekend that either of us could ever remember. We laughed. We cried. We were positive. We were negative. We were still in shock.
Finally, on Tuesday, February 5, Dr. Hartner called. Our worst fear was true...it was CANCER. He confirmed that it was a sarcoma but that the subcategory had yet to be determined. He gave us a lot of information to digest but said Jimmy would start treatment as soon as possible, the following week. He would have 6 rounds of chemo, 6 rounds of radiation and then surgery. After the first 3 weeks of chemo, he would be checked out to see how he was tolerating the chemo and if it was working or not. If it was working, chemo would continue. If not, radiation would begin. Chemo is a 3 week cycle. The first week would include 4 days of chemo with the following two weeks off. That night, we both cried as we held each other, not knowing what the future would hold for our family.
The wheels were in motion. More tests were scheduled on Friday, February 8...a CT scan to see if the cancer had spread to Jimmy's lungs as well as an Echocardiogram to see how healthy Jimmy's heart was and whether or not it could withstand the chemotherapy drugs the doctor wanted to use. A outpatient procedure was also been scheduled at the hospital for Monday, February 11, to put a port in Jimmy's chest for the ongoing chemo treatments. The doctor also wanted home health care to monitor Jimmy's fluid levels and white blood cell counts. He told us they would contact us directly to set that up.
How everyone is doing at this point -
Logan is having trouble digesting all of this information. He is only 10 years old and is worried. He asked this morning if it (cancer) was contagious. He also had a really tough day at school today. I feel really bad for him and want to make it better so he is not so afraid. He knows what's going on but doesn't really know what's going on.
As for me, I'm terrified of what the future holds. Jimmy is the strong one who takes care of us. We have our own business and I'm worried what will happen to the business since Jimmy runs it. How will I keep the household going without Jimmy's help? How will I keep things normal for Logan? I have posted what's going on on Facebook and everyone has been so supportive. The thoughts, prayers and comments from friends and family mean more than I can ever say. It doesn't seem like "thank you" is enough. I have to be strong and positive...that's what I keep telling myself whether I believe it or not.
Jimmy is also experiencing fever and chills every night. When he wakes up the sheets are soaked. He is in pain. Thank goodness for the medication. He cries in the early morning hours when Logan and I are asleep. He is still processing the fact that he has cancer. Everything is moving so fast. Less than 2 weeks ago, it was just a hamstring issue, or so he thought. Never did he think this would ever happen to him.
In the afternoon on February 7, the home health care company contacted us. They told us there was a problem getting a pre-authorization from the insurance company "due to a pre-existing condition". WHAT??!!! What does that mean? Jimmy has never had cancer before so what was going on. I contacted the insurance company, Blue Cross Blue Shield, and was informed that there in fact was a problem. They told me that the pre-existing condition was not because of the cancer diagnosis but because we had had a lapse in coverage. We did go without insurance for a period of time before obtaining this policy, however, I didn't understand how this could be happening. The cancer diagnosis was well after the policy went into effect. The policy language regarding this is very broad and non-specific, so it appeared that we should be covered without question. The customer service representative told me that he would look into it further and call me the next day.
On February 8, which would turn out to be a day filled with lots of emotion and turmoil, from beginning to end. First thing in the morning, Blue Cross called. They said that they considered any treatment that Jimmy had for the cancer, would not be covered at all since they considered it to be pre-existing. OMG! I was mad. I was scared. I cried. Jimmy was mad and scared. Would Jimmy be able to get treatment if he essentially had no insurance? We both felt defeated. Now what?
I immediately called the doctor's office. I told Carla, Dr. Hartner's secretary, what was going on. She said she would contact the billing department and see what she could find out. I asked whether or not Jimmy could be denied treatment and she said she didn't know.
Wasn't it already bad enough? We are already terrified of Jimmy having cancer and wondering if it has spread. We are worried about having an income since Jimmy is self-employed and I stay at home. Now this?
Jimmy went to his CT scan and Echo appointments with his Mom while I stayed at home and made phone calls trying to straighten out this insurance mess. I even called a lawyer and got papers to file a claim with the PA Insurance Commission.
I got a call from Laetitia, Dr. Hartner's nurse, assuring me that Jimmy would not be denied treatment. Thank God! She said she was working with the billing department to see how to work this all out. Finally, after many phone calls, it was decided that Jimmy would not get his chemo on a outpatient basis. He would now be admitted to the hospital for the entire week of treatment. He would also not need the port put in since he would be in the hospital and not travelling back and forth every day for treatment. Home care would not be needed either.
Laetitia and I talked for a long time and she assured me that Jimmy would get the care he needed. She said that a hospital social worker would talk to us about billing and try to help us get some sort of assistance for the bills.
Jimmy got the scans done and we were again waiting for news of whether or not the cancer had spread. Laetitia called late in the day...the cancer has NOT spread. Thank you Lord Jesus! Some good news at last!
Today was very emotional and I'm glad its over. We will relax over the weekend and get ready for our family's new normal starting this Monday, February 11.
January 2013 - The Diagnosis
On January 18, 2013, Jimmy went to an orthopaedic doctor. He gave the same diagnosis...hematoma due to a hamstring tear. He wanted Jimmy to get an MRI and start physical therapy.
Scheduling the physical therapy was easy...one phone call for an appointment on January 21.
The MRI was a different story. I called the place the doctor recommended and they wanted $800 at the time of the MRI since our insurance (which had just gone into effect) deductible had not yet been met. I called the hospital, since I knew they would bill us for the service, and got an MRI appointment on January 22. Jimmy showed up 10 minutes late for his 8 am appointment and they wouldn't see him even though they didn't have another appointment following him...central scheduling at the hospital confirmed this. So, they told him to come back that afternoon at 2:45 p.m.. He did. However, when he got there and started to fill out the paperwork, there was a problem. Since he had had a piece of metal lodged in his eye many years ago, they wouldn't do the MRI until he got an x-ray of his skull, specifically, his eye socket. Just something else to have to worry about now. The x-ray was clear and showed no sign of residual metal shards. The MRI was then rescheduled for January 29.
Frustrated.
The diagnosis with never wanted to hear...
In the early morning of January 25, Jimmy developed a fever that went to 101 and 102 all the while dealing with severe pain in his leg. He would take Advil for the fever...it would work and the fever would break but when the Advil wore off, the fever would come right back. This went on for two full days and nights. On the third day, January 27, our son, Logan, had a karate tournament and a swim meet, so we were in for a busy day. However, that morning Jimmy and I both realized that something more seemed to be wrong than just a hamstring tear. We feared that something had gotten infected, hence the fever. We decided to go to the karate tournament in the morning and then head over to the hospital. Jimmy didn't want to disappoint Logan by not going so he endured the pain and the fever that morning. Logan did great by the way...one gold medal and one silver medal. He did, however, miss his swim meet.
We went to the hospital after the tournament with Jimmy barely being able to walk...even sitting hurt at this point. The doctor came in and we explained what had been going on. He didn't seem too concerned that it was anything other than a hamstring issue but he ordered a CT scan anyway. I took about an hour for the doctor to get the results of the CT scan. When he came in, we were very anxious to see how Jimmy's hamstring was doing. Little did we know that he was about to change our lives forever.
He said..."I think you have a MALIGNANT SARCOMA". I swear I looked at him like he had 3 heads and asked "you mean like cancer?" I could not even process what he was saying. I was as if he was speaking a foreign language that I could not understand. I looked at Jimmy and he looked at me...we were in shock.
The doctor started talking about a lot of things and I really don't remember a lot of it except that he said he would put us in touch with a local oncologist the next day and they would help us expedite the next step.
We came home in disbelief. Jimmy is 46 years old. How could this be happening? He is healthy. He works out. He eats well. Jimmy immediately got on the internet looking up information on sarcomas. He found anything and everything he could so try to inform himself on what he was in store for should he actually have cancer. He was a man obsessed...driven by fear and the need to know.
The next day, January 28, I called the oncologist's office. They were expecting our call and, instead of coming into their office, they got an appointment in Dr. Hartner's office in Philadelphia for the next day, January 29. He is affiliated with Pennsylvania Hospital which we were very happy about.
We went to see Dr. Hartner on January 29. Jimmy was in extreme pain in the office and the nurse gave him a Percocet to help. She assured him that pain was their specialty and it was something they could help him manage. The doctor and his nurse, Laetitia, were so informative and calming at the same time. They scheduled a biopsy for that Friday, February 1 that would tell us for sure if Jimmy did have cancer. They spent a significant amount of time with us going over what we would need to do and what would happen if cancer was indeed the diagnosis. The doctor seemed 98% sure that it was just by reading the results of the CT scan. The tumor was about the size of a tennis ball and intertwined in the muscle. They sent us home with prescriptions for pain medicine....this is serious.
And so it began...
Scheduling the physical therapy was easy...one phone call for an appointment on January 21.
The MRI was a different story. I called the place the doctor recommended and they wanted $800 at the time of the MRI since our insurance (which had just gone into effect) deductible had not yet been met. I called the hospital, since I knew they would bill us for the service, and got an MRI appointment on January 22. Jimmy showed up 10 minutes late for his 8 am appointment and they wouldn't see him even though they didn't have another appointment following him...central scheduling at the hospital confirmed this. So, they told him to come back that afternoon at 2:45 p.m.. He did. However, when he got there and started to fill out the paperwork, there was a problem. Since he had had a piece of metal lodged in his eye many years ago, they wouldn't do the MRI until he got an x-ray of his skull, specifically, his eye socket. Just something else to have to worry about now. The x-ray was clear and showed no sign of residual metal shards. The MRI was then rescheduled for January 29.
Frustrated.
The diagnosis with never wanted to hear...
In the early morning of January 25, Jimmy developed a fever that went to 101 and 102 all the while dealing with severe pain in his leg. He would take Advil for the fever...it would work and the fever would break but when the Advil wore off, the fever would come right back. This went on for two full days and nights. On the third day, January 27, our son, Logan, had a karate tournament and a swim meet, so we were in for a busy day. However, that morning Jimmy and I both realized that something more seemed to be wrong than just a hamstring tear. We feared that something had gotten infected, hence the fever. We decided to go to the karate tournament in the morning and then head over to the hospital. Jimmy didn't want to disappoint Logan by not going so he endured the pain and the fever that morning. Logan did great by the way...one gold medal and one silver medal. He did, however, miss his swim meet.
We went to the hospital after the tournament with Jimmy barely being able to walk...even sitting hurt at this point. The doctor came in and we explained what had been going on. He didn't seem too concerned that it was anything other than a hamstring issue but he ordered a CT scan anyway. I took about an hour for the doctor to get the results of the CT scan. When he came in, we were very anxious to see how Jimmy's hamstring was doing. Little did we know that he was about to change our lives forever.
He said..."I think you have a MALIGNANT SARCOMA". I swear I looked at him like he had 3 heads and asked "you mean like cancer?" I could not even process what he was saying. I was as if he was speaking a foreign language that I could not understand. I looked at Jimmy and he looked at me...we were in shock.
The doctor started talking about a lot of things and I really don't remember a lot of it except that he said he would put us in touch with a local oncologist the next day and they would help us expedite the next step.
We came home in disbelief. Jimmy is 46 years old. How could this be happening? He is healthy. He works out. He eats well. Jimmy immediately got on the internet looking up information on sarcomas. He found anything and everything he could so try to inform himself on what he was in store for should he actually have cancer. He was a man obsessed...driven by fear and the need to know.
The next day, January 28, I called the oncologist's office. They were expecting our call and, instead of coming into their office, they got an appointment in Dr. Hartner's office in Philadelphia for the next day, January 29. He is affiliated with Pennsylvania Hospital which we were very happy about.
And so it began...
Fall/Early Winter 2012
I'm Susan Kulick and I wanted to create an outlet as well as a document to chronicle our journey on a road called CANCER.
In late October 2012, Jimmy (my husband) who has been a bodybuilder for many years, started to feel a pain in his left hamstring. He just assumed it was a pulled muscle. As the weeks went by, the pain started to get worse and he started to feel a large lump forming in his hamstring. Since he has worked out for most of his life, he just assumed he had a pull or a slight tear and it was just taking a long time to heal, so he kept working out.
On New Year's Eve, he woke up with unbearable pain so he decided to go to the doctor. The doctor said that she thought it was a hematoma due to a hamstring tear and sent him to get an ultrasound for deep vein thrombosis at the hospital. So, off he went to get the ultrasound...results showed no sign of deep vein thrombosis and she suggested he see an orthopaedic doctor. We were also somewhat confused as to why she didn't order an ultrasound of the lump in his leg as well. Sadly, we had plans to go to a party to celebrate the New Year but Jimmy's pain could not withstand a night out.
On a side note, we had just applied for health insurance at the end of the year but it wouldn't go into effect until January 15.
In late October 2012, Jimmy (my husband) who has been a bodybuilder for many years, started to feel a pain in his left hamstring. He just assumed it was a pulled muscle. As the weeks went by, the pain started to get worse and he started to feel a large lump forming in his hamstring. Since he has worked out for most of his life, he just assumed he had a pull or a slight tear and it was just taking a long time to heal, so he kept working out.
On New Year's Eve, he woke up with unbearable pain so he decided to go to the doctor. The doctor said that she thought it was a hematoma due to a hamstring tear and sent him to get an ultrasound for deep vein thrombosis at the hospital. So, off he went to get the ultrasound...results showed no sign of deep vein thrombosis and she suggested he see an orthopaedic doctor. We were also somewhat confused as to why she didn't order an ultrasound of the lump in his leg as well. Sadly, we had plans to go to a party to celebrate the New Year but Jimmy's pain could not withstand a night out.
On a side note, we had just applied for health insurance at the end of the year but it wouldn't go into effect until January 15.
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