6 Weeks Post-Op...Pain...Tears...Complications...GRAPHIC PICS of Open Wound

Let me start by saying that I have been a big procrastinator this time...I apologize to everyone who has said prayers and given their support to us for not following up as usual.

This has been a very difficult surgery and life has been very hectic and traumatic because of it. Also, there really hasn't been a day that I felt like writing. Normally writing is very cathartic for me but, for some reason, I could find my focus this time. I would constantly think in my head that I needed to write a blog post and what I would say but I couldn't bring myself to write anything down. You will see below that I wrote in detail about the day they let Jimmy come home from the hospital but that was as far as I got. I had no idea what we were up against this time around...being a full-time caregiver for someone who can't do anything is hard, very hard. Hence, this very long overdue post.

Here's the day Jimmy came home...

11.18.14
On Sunday, Logan and I had a relaxing day at the hospital with Jimmy. Just being together is so important to us and I'm so grateful that we got to do that on Saturday and Sunday.

Jimmy had physical therapy again today...Boris...who kept joking that he was KGB...haha. Well, Jimmy had a long walk...about 100 feet to the stairs with his walker. He was in pain and a little lightheaded and did have to stop when he got to the stairway and sit for a few minutes but it was a long walk for him. Once in the stairwell, he used crutches to go up and down two steps. He seemed a little wobbly but he did really well. He then had the long walk back to his room but he did it. By the time he got back to the room, he was wiped out. While walking, his incisions started to bleed but we were told that the more he moved around, the more this might happen...it wasn't anything to worry about.

Speaking of his incisions, the doctors have determined that Jimmy has a skin infection, cellulitis, and they will continue to watch it. Right now, they believe the antibiotics he is taking will help get rid of it.

Today they took Jimmy off of his IV pain medication and the transition to oral pain medication begins. While this is good for being able to go home, its not so good when Jimmy's pain level is very high. The other good thing is that the more they unhook you from machines, you are that much closer to going home.

The doctors are starting to talk about him going home. Hopefully, by Tuesday they will let him go. We are told that the plastics team will have the final say since they are in charge of wound care. Dr. Weber (the ortho surgeon) did say that maybe he could go home on Monday...depending on how his night went.

Well, Monday came and I got to the hospital by 6am so that I could talk to all of the doctors that morning. By 10am, the decision had been made that Jimmy could go home. There were still some logistics to work out but at some point, he would go home. We were really surprised when Dr. Weber told us because the plastics team came in first that morning and said they wanted to wait another day to give him more time on the IV antibiotics.

So happy today is the day but...we are not prepared. First, I drove the wrong vehicle...our SUV is much more comfortable that my car is but we will make it work. Hopefully, Jimmy's walker, crutches and other fun, new stuff will fit! And, second, I don't have any clothes or shoes for Jimmy to wear home. Oh well...home, here we come!

It is now 12.23.14...this is what's been going on since we got home...

When Jimmy first got home, he was in a lot of pain and everything was so swollen...leg, knee, foot, abdomen and groin. Since he couldn't get around without the walker, he decided it would be easier to sleep on the couch. In case he had to get up to go to the bathroom in the middle of the night, he could just use the urinal the hospital gave him instead of having to worry about falling on the way to the bathroom. I know that is probably too much information but its the truth. Needless to say, this was not going to be easy. I slept with my cell phone with me in case Jimmy needed me during the night...sometimes I still do.

Jimmy also came home with the three drains that were put in during surgery. I had to empty each of them twice a day and keep track of the measurements. Here's my "cocktail" of measurements...I like to think of them as Zinfandel, Merlot and Rose...hahaha. I know, I know but I have to get humor where I can these days.

The first week was extremely difficult but Jimmy was able to stop using the walker and begin to use the crutches. He said the walker was too cumbersome. One positive step. I still had to do everything for Jimmy...bathe him, wash his hair, help move him and prop his leg up, dress him and more. He couldn't yet stand alone, so he could not take a shower and I had to give him sponge baths. Trust me they were no fun. About a week later, I borrowed a shower chair from a friend and it enabled Jimmy to at least sit in the shower and enjoy the warm water. One of many baby steps he has taken along the way since surgery.

Jimmy continued to have severe pain and swelling and was taking a lot of medication for it. Between the pain meds, nerve meds, antibiotics and anxiety meds, it seemed like he was taking medication all day and night. Thank goodness we were having a nurse and physical therapist coming to house twice a week each to help monitor Jimmy's care.

I can't even tell you how hard it was for me to be a 24-hour nurse to basically an invalid. A few people said to me..."you should have been a nurse"...no way! The only reason I was doing what I was doing because Jimmy is my husband and I love him. He is my other half and taking care of him is my responsibility. Thankfully, his upper body is strong and that helped a lot. Just having to lift his legs for him, whether to re-position him on the couch or to get him dressed was hard for me. Helping him bathe and go to the bathroom was very stressful because I was so worried I was going to hurt him.

On 11.25.14, we had our first post-op appointment with the plastic surgeon so he could check on the 3 incisions...nearly 3 feet of incisions and the drains. Thankfully, one of the drains was able to be removed since it had all but stopped producing any fluid. As a side note...we put Jimmy in a wheelchair when we got there so he could get to the doctor's office much easier. It was a little weird for both of us but we learned how nice people can be...we got a lot of help with doors and the elevator. I learned that I am not very good at navigating a wheelchair...hahaha. Back to the visit...the incisions on his abdomen and groin were very swollen and bright red and the skin surrounding both were very hard to the touch. The other incision on his right leg where they were going to harvest blood vessels had just been closed back up and it is healing nicely. The abdomen incision had spots of scabbing already. All in all, the visit went went and the doctor said he seemed to be healing relatively well. The only incision of concern was the groin. The healing seemed to be going much slower but this was due to the fact that the area had been heavily radiated before surgery. The radiation retards healing significantly.

Jimmy continued to have a lot of pain and swelling, especially from his knee to his foot. Any time spent standing or walking (which was only around the house) caused this. He has been wearing a compression stocking and wrapping his leg. It works for stability but starts to aggravate after a while so he can only do that in short intervals. He's not allowed to use hot or cold for the pain/swelling because his leg tissue cannot regulate the temperature well enough to know if it is too much or not.

By this time though, Jimmy had started to be able to take showers by himself and that gave him a little more independence and me a little relief. Another baby step.

Thanksgiving came and went and we spent it quietly at home. I cooked a full turkey dinner for us and Jimmy's family came over for dessert. Jimmy was unable to get out yet and I enjoyed cooking...it was nice...just what we needed.

On December 7, Jimmy noticed that his groin incision looked like it had a hole in it. Yes, I said hole. It looked like three staples weren't really even attached to anything. Here's a picture of how it looked...its not pretty and is somewhat gross but it is a real complication that can have astronomical issues if it gets infected. Not only did this look really horrible, the wound had really started to smell. We knew that something was happening, we just didn't know exactly what yet.


This is almost the full length of the groin incision...about 8 inches.


Closeup of the part where the staples are coming detached.

Even though it was Sunday, we called the plastic surgeon right away, since he is the doctor in charge of wound care. We sent him the pictures we took and he wanted us to come in the next day, first thing in the morning so he could take a look at it. Jimmy was scheduled for 12/9 anyway for his staples to be removed and the doctor removed them while we were there on the 8th. I don't remember how many staples there were but it was somewhere in the neighborhood of 50. There were, in fact, 3 staples that were only attached to the white/yellow, fatty looking material...the doctor refers to this material as "slough". It is necrotic (dead) tissue that needs to be removed so the wound can heal. At least now we knew why the wound had started to have an odor. The doctor removed all of the staples but left some of the sutures as support for the incision and said we need to start with a wet/dry dressing that would help remove the slough easily and safely. The main concern with the wound opening is that the flap of muscle under this incision could get infected and create all sorts of problems for the prosthetic artery and vein. Thankfully, the doctor seems to think this is just a superficial opening due to all of the pressure from the swelling. The doctor also decided to remove the remaining two drains as well...more baby steps. The least amount of things to worry about the better it is for all of us, especially Jimmy.

During that week, the incision continued to open up and tunnel further out. I sent more pictures to the doctor but they insisted the opening was still superficial and to just keep doing what we are doing with the wet/dry dressing.


A couple of days later and the wound is opening more 12.9.14


You get a better idea of the width and depth in this picture...you could actually fit 2 quarters side by side 12.9.14

I know its gross and all but this is our reality...every day. I just wish I could wake up and it all be a dream and that Jimmy was healthy and strong. Jimmy has been getting depressed and feeling like he isn't getting better. It has been like taking two steps forward and one step back. Every new day seems to bring on another challenge...more swelling...freezing cold and then cold sweats...temperature...excruciating abdominal pain...and the list goes on.

At this point, it has been four weeks after surgery and Jimmy just stopped wearing scrubs all the time. I did buy him a "fancy pair" of scrubs that were dark gray...very suave they are...hahaha. That pair was for leaving the house and going to the doctor's appointments...pair them with a nice pullover, Crocs and we are all set...if you knew Jimmy, you would know that this is so far from how he would ever leave the house normally...boy, how times have changed. He has now moved up to sweatpants...another baby step!

Two days later...12.11.14...I was rushed to the emergency room for what I thought was a heart attack. The pain started gradually around noon and continually worsened until about 3:30 p.m. when I said I couldn't take it any more and we had to go to the emergency room. I actually drove to Logan's school to get him (with Jimmy in the car) but by the time I got there I couldn't drive anymore. I wanted to go home and call an ambulance but Jimmy insisted he could drive us to the hospital...so he did (at least we found out he can drive in the event of an emergency...does that count as a baby step)?! When we got there, he immediately got in a wheelchair and I went to the counter...the poor hospital staff didn't even know who needed medical attention. I have never had such pain except for labor pain and this was just as bad or worse. They ran some tests...EKG and ultrasound...and determined that I did not have a heart attack but a gall bladder attack. Thank goodness and holy moly! They told me there was nothing to do but if I continued to have these episodes I could choose to have my gall bladder taken out. So, basically, by the time we left the hospital, I was in no pain and drove all of us home.

WTF?! Can anything else go wrong? Like we really don't have enough on our plates right now. I swear I feel like sitting in a corner, rocking and beating my head against the wall sometimes...no, seriously, I have...this sucks. We are all being effected by this and it is taking its toll. Jimmy is depressed and has severe abdominal pain on top of everything else...I am sad a lot and can cry at the drop of a hat...even Logan is having his own issues with all of this, not to mention that he was sick last week too. I seriously don't know how much more I can take. I will say that now that I have actually sat down and started writing, it does make me feel better...just getting to that point wasn't easy this time around.

The last couple of days, Jimmy has begun to have severe abdominal pain and night sweats as well as being extremely cold. The nurse that comes to the house said that she suspects the abdominal pain is from the mesh that was placed there during surgery where the abdominal muscle was removed. The mesh area runs the length of the abdominal scar...about 16 inches and a width of about 4-5 inches. As for the temperature issues, this is most likely a side effect of Jimmy's body's way of trying to heal itself. I wish he would start feeling better soon...as least well enough to leave the house and stop having to live on the couch. He tried sleeping in the bed last week a couple of times and my moving around at night is painful for him so back to the sofa he went. After 18 years of him sleeping next to me, I miss him at night.

Today, 12.23.14, we went to the plastic surgeon's office again for another check-up. The ride, as always, is hard for Jimmy. All of the jostling around is painful. A doctor from Dr. Weber's team was also at this visit. When the doctor examined the incisions, he said that they all look good, even the groin incision. In the last few days, it seems to have really started to look a lot better. There is still a lot of healing left but it doesn't look nearly as bad. It is much drier looking and does not seem to be as red or swollen. Thank goodness! Jimmy also wore jeans for the first time since before the surgery...a huge baby step! Every new step makes life a little bit better.

Needless to say, this has been a very traumatic time for our family. I was not even in the mood for any Christmas decorations this year but Logan really wanted to decorate so he and I did it together. Once the tree was up and decorated, I was glad that I did but the holidays are just so different this year. I will say in closing that I am thankful that my husband is still with me and that he is healing and getting stronger each and every day. I can't imagine going through this life without him.

Also, I would like to wish you and your family a very Merry Christmas or whatever holiday you are celebrating this time of year. I hope you find peace, love and happiness in your life and that you allow yourself to treasure each and every moment you spend with your family and friends.

Thank you for letting me share my family with you and we truly appreciate all of your support.

Much love...Susan

Pain...Swelling...Physical Therapy...Pathology Results...Incision Pics

11.15.14

The last few days have been very long and tiring but Jimmy is feeling a little better every day.

The plastic surgery team wanted Jimmy to be on complete bed rest with no movement for at least 48 hours after surgery. They wanted to make sure to give his incisions time to start healing and they especially didn't want the incision with the graft to bend at all. It is critical that the graft site heal properly since the grafted area is covering the prosthetics. This meant that Jimmy was to stay on his back at all times under told otherwise. The plastic team is also keeping an eye out for infection at the incision sites.

The vascular team wanted to continue to have the blood flow to his left foot monitored on an hourly basis to make sure the prothestics were functioning properly.

The orthopedic team is the head team for Jimmy's care and they have been waiting for pathology on the mass to check the margins. They are working in conjunction with a pain team to try and keep his pain under control.

On Wednesday afternoon, 11.12.14, the plastics team gave Jimmy the okay to be moved from ICU to a regular room since the pulse in his left leg was consistent and regular and they felt that monitoring less frequently would be okay. They were finally able to manage his pain and it didn't encompass every minute of the day for him. Since he had not been allowed to eat anything for the first 48 hours after surgery, he had now been told he could have clear liquids.

I also have to mention this. The nursing care in ICU was superb but today the nursing care stinks. Since Jimmy couldn't move or be moved until today, he had a catheter and had been having to used a bed pan. Sorry to mention but its a reality. The pad underneath of him wasn't changed between incidents and was dirty. The nurse told me that they would get to it next time. This made me angry. All of the doctors are concerned about infection and the nurse seemed very unconcerned. Well, needless to say, I brought it up with Dr. Weber, his orthopedic surgeon who did his surgery and is in charge of his care. She said she would take care of it and to please let her know if anything else seemed inadequate or detrimental to Jimmy's care.

Physical therapy came by on Thursday, 11.13.14 and wanted to get him started. Jimmy is only allowed to sit up to a 45 degree angle but he's been given the okay to start PT. The goal for today is to get out of bed and into a chair, since he is now off of complete bed rest. Well, it took two people to get him out of bed. For him to just sit up causes excruciating pain. The abdominal incision is pulling and the groin incision is compressing...neither of which are a good thing. He is not allowed to sit straight up except to get up and down for fear of bending the groin incision where the graft is located. To see Jimmy so helpless and to have two people help just sit up is hard to watch. Even though the chair is right next to the bed, they gave him a walker so he could have some stability on his own and allowing him a little bit of independence at the same time. Well, he got in the chair and they wanted him to stay there for about 30 minutes to an hour. He lasted 15 minutes before he was in too much pain to continue sitting in the chair. Then he had to get back in the bed. Thankfully, they had given him instant IV pain medication to help take the edge off before even starting the process of getting out of bed. Finally, he was back in the bed and he was exhausted.

Jimmy had also been cleared for regular food on Thursday but wasn't really that hungry. I had hoped he would have more of an appetite but with the pain and the medication, he just didn't feel like eating very much.

The doctors are now concerned about infection. They removed the bandages and his incision sites are very red and very swollen. The plastic surgeon seems to think he does have an infection even though he is on two strong antibiotics. Jimmy has also been running a fever over 100 and that is somewhat concerning. This is something that will have to monitored closely. They are also concerned about his healing properly. Since he had radiation, the healing process is much slower. Below is a picture of two of his three incisions. He does have an incision about 7 inches long on his right leg where they were going to try and harvest veins but decided to use the prosthetics instead.


Groin and abdomen incisions


Close up of the groin incision

The swelling and pain in his leg, abdomen and groin have been a constant factor and most likely will be for a while. Jimmy was on a morphine pump for pain but today, they believed that he was okay to start the transition to oral pain medication, since he obviously can't go home on the IV pump. Jimmy didn't want to get rid of it but they didn't give him a choice. The sooner he progresses in the steps it takes to go home, the better. They have also started to transition him to oral medication for his blood thinner as well. They are continuing to monitor his blood levels to make sure they have the right dose.

Thursday also brought physical therapy again. We are all concerned about the steps in our house that Jimmy will have to climb. That's the end goal for him...to be able to navigate steps. They therapist got Jimmy out of bed today and the goal was to get out of bed and just walk to the bathroom and sit in a chair for a while today. Woo hoo! He was able to do both. It wasn't easy or quick but he did it. He is very, very sore and his left leg is very weak. He was able to sit in the chair for about an hour though and that was really good. We do know that Jimmy will lose some mobility in his leg but at this point, we don't know how much.

By Friday the pathology results were in on the tumor. Dr. Weber said that the tumor was 90% necrotic thanks to radiation but the 10% still alive had been continuing to grow. The said the margins were good except for some microscopic cells that were still active. She did not expect Jimmy to have anymore radiation because the statistics did not indicate that radiation would help. She did say that Jimmy would most likely have to consider chemotherapy again sometime in the near future. Since the cancer is in his bloodstream, there is still that possibility that it will come back again. Have I mentioned how much I HATE CANCER?! Jimmy is adamant that he won't do chemo again but I want him to at least consider it if it will save his life.

The concern all day today is to change one of his two remaining IVs. It has been in for 5 days (they are only supposed to be in for 4 days) and needs to be replaced. The problem is that Jimmy literally has no veins that are viable for an IV. They are all collapsing. Two nurses came in today to try and find a new location for the IV without success. They said a doctor will most likely come by and figure out a way to get a new IV inserted. They said ultrasound may have to be used.

Friday also came with some emotional ups and downs. Jimmy has said all week that he didn't have any idea how involved this surgery would be and he had not expected all of this. Today he was really depressed. I want to help him but today I did not know how. I just told him that everyday was a day that he was taking a step toward getting better and being able to go home. He's worried about his mobility. He's worried about working. He's even a little scared but I'm sure he won't admit it. I know I am worried about all of those. Today was a bad day emotionally for me. I felt like just breaking down all day long but knew I couldn't because I didn't want Jimmy to see. I have been running nonstop since Monday morning. I'm worried about shuffling Logan to and from school, while still making sure he gets to swim practice and keeping his life somewhat normal. I'm trying to make sure I'm at the hospital early in the morning to talk to the doctors and I stay all day so I can help Jimmy and keep him company. I'm getting about 4-5 hours of sleep a night and the traveling back and forth to the hospital (about an hour each way) is definitely starting to take its toll. I am completely stressed out. I'm exhausted and I have a constant headache. I cried as soon as I left the hospital today and called my best friend. I can always depend on her to cheer me up...that's what over 30 years of friendship can do for you...so, thank you Lisa!

Well, it is now Saturday 11.15.14. Logan gets to come and spend the day with his Dad. He is looking forward to just hanging out today in the room today with us. I have missed him so much this week and I feel a little guilty for shuffling him around but I know I didn't have a choice.

Jimmy had physical therapy again today and he walked down the hall about 20 feet and back using the walker. It was slow going but he was doing it. He is having trouble moving his left leg forward because the muscle that was removed controls the ability for him to lift his leg. She physical therapist also wanted him to try a step on crutches as well. It was such a tedious and difficult process for Jimmy but he managed to do the one step. By the time he got back in bed, he was completely pooped. Each day has been a little better and everyone is happy about his progress.

The doctors have been in and out all day and of course, another nursing issue has come up. Last night when they changed Jimmy's bed, they put the linens in a chair. They actually had to change his bed twice because they washed him up in his clean sheets and got them wet, so they changed them again. There was also a couple of pillows with blood on them in the pile too. Well, it turns out that these dirty linens stayed in his room all evening and ALL NIGHT LONG. When the plastic surgeon came in this morning, he was pissed. Since Jimmy's incisions are uncovered and more susceptible to germs, not to mention the fact that he already has an infection, this was completely unacceptable care. Sometimes I wonder how some of these people have jobs. Maybe they are just desensitized to it all.

Jimmy did have quite a few family visitors today and has seemed in good spirits all day. We have had a nice day just being together. I can't wait for Jimmy to come home so he can sleep in his own bed and he can eat his own food and I won't have to worry about Logan getting to and from school and activities.

Thank goodness Jimmy is getting better every day. He is alive and the doctors did not have to take his leg and for that I am grateful. I appreciate my friends and family helping me out all week. I don't know what I would do without you. Thank you again to everyone that has sent their support and prayers to our family. We are eternally grateful.

I will continue to post and update on Jimmy's progress.

Tumor is Out...10 1/2 Surgery is Over...FYI...GRAPHIC PICS from surgery below

11.11.14

Well, surgery is over. It took 10 1/2 hours...much longer than we expected but with a positive outcome.

I briefly described in the previous blog about how the surgery might go. Well, here's how it went...

After Jimmy went into surgery, the first doctor to work on him was the vascular surgeon. He placed an IVC filter in Jimmy's right leg. This filter is designed to catch blood clots before they reach his lungs. The filter is a little less than an inch long. Here's a pic...


He had to stop taking his blood thinner one day before the surgery and has not yet resumed taking it. Also, since he has a history of blood clots in his lungs and deep vein thrombosis, the doctors decided this filter was necessary.

After the vascular surgeon put in the filter, the orthopedic surgeon, who is the Chief of Surgical Oncology at Penn and in charge of Jimmy's case, she proceeded to take out the tumor. She found that the femoral vein and the femoral artery in his left leg, along with nerves were completely encased in the tumor. She had to remove an entire muscle from his leg...the iliopsoas muscle. This muscle controls the ability to lift your leg up like when you climb stairs. She did have to cut both the vein and the artery and take those pieces with the tumor (the vascular surgeon would repair them later). When she came out to talk to me after her part of the surgery, she said it was a very hard surgery and took longer than she expected because of the size of the tumor. She said the tumor was really deep and she had to remove a mass larger than the size of a softball from his groin. She sent the mass to pathology to confirm that she got clear margins around the tumor. The pathology will take a couple of days to complete. The incision is about 10 inches long.

The vascular surgeon was taking a second turn and his job this time around was to repair and/or replace any vessels that has to be taken out with the tumor. Since the main vein and the main artery in his left leg both had sections removed, he needed to repair these. They had already prepared an incision in his right leg to harvest veins from but soon found out that this was not an option due to the size. The vein and artery are both larger than the veins they wanted to harvest and would not provide adequate blood flow so the surgeon decided on a prosthetic for both the femoral vein and the femoral artery. The prosthetics are made of a material similar to Gore-tex and have ridges for flexibility. I am posting pictures of what they did during surgery...THEY ARE GRAPHIC but I think very interesting to see. Again, this is very GRAPHIC. The picture on the top is before the prosthetics were put in. The middle white thing is just gauze but you can see on the top and bottom of the incision the vein and artery where they have been cut. The artery is the one with the thicker wall. The bottom picture has the prosthetic. It kind of looks like PVC pipe. You can also see a little piece of his right leg where it had already been prepped for vein harvesting. I hope I didn't offend anyone with this pictures but there are people going through this who do want to know what to expect and that's why I'm posting them.

Before prothestics

After prothestics

Now that the vascular team has done their job, the plastic surgery team can begin. While it sounds like "Oh, they are just going to make his incision pretty and close him up", let me assure you it is no joke what they did.

They had to close up the incision on his right leg where they had planned to harvest the veins. Its crappy that that was an unnecessary incision but an easy one to close up. It is about 7 inches long. The tumor site, however, was a different story. As you can see from the pictures, the incision was really big and really deep. In order to fill up the space, they needed to insert another muscle from somewhere else in his body. Given the length and the strength of the muscle needed, they decided to take one of his abdominal muscles...the rectus abdominus (also known as the six-pack muscle). In doing so, he now has a 3rd incision down the length of his abdomen also about 10 inches long.

Each doctor told me separately how difficult of a surgery it was and the reason it took so long. Each team of doctors seemed optimistic that Jimmy will have a good outcome after he heals.

After surgery, I was finally able to see him...he was sent to the ICU. I was so relieved just to lay eyes on him and see that he was okay. He was very groggy and in an incredible amount of pain. It is so hard to see him that way since he is always so stoic when it comes to pain. He is now hooked up to several monitors, has four IVs and is hooked up to oxygen. Here are a couple of other pics I took...the second one is a picture of his 3 drains. A little gross I know but they are very necessary.






11.11.14
I went home really late last night and came very early to the hospital...only getting about 4 hours sleep but I wanted to be at the hospital when the doctors arrived to check in on him. Even though I spoke to them yesterday, now that I've been able to process everything, I have some questions and need some reassurances.

The doctors have collectively said that his incisions look good and he has had a consistently good pulse in his legs and feet. They have put him on complete bed rest for 48 hours to give the muscle they transferred time to start healing. As for eating, Jimmy was only allowed ice chips last night and this morning but he has been given the okay for clear liquids now. The big problem today has been pain. He is in horrific, horrific pain. All day long they have been trying to get a cocktail of medications that will work for him and give him some relief. They switched things around a couple of time and in doing this, the pain got ahead of him and it has taken a while to get it under control. He has also been running a slight fever most of the day as well. Finally though, it seems like they have found the magic potion. He is resting and even getting some sleep. I'm very happy to see him sleeping.

As for me, I am extremely exhausted and I need to go home and spend time with Logan. Thankfully, friends let Logan spend the night last night so he was taken care of and had a little fun in the process with an unplanned sleepover. It also allowed me to be with Jimmy and for that I am grateful. But, tonight I want to hang out with my son...I miss him.

I want to acknowledge all of you who have supported us and sent us your well wishes, thoughts and prayers. They are so meaningful and I truly believe the prayers are working. So THANK YOU! xoxo

I will update again soon.

Fever...Shaking...Swelling...Pain...and now SURGERY TODAY!

11.10.14

The last few weeks have been stressful and again I have found myself not wanting to write anything. I think I've been in denial.

Anyway, the week after Jimmy got out of the hospital last month, he started having these violent shaking episodes accompanied by a high fever. They would start like a cold sweat shiver and increase to a full blown violent shaking of his entire body. They would last about 20 minutes and were very scary to watch. Jimmy would be freezing cold during these episodes. We thought he might be having some sort of seizure the first time he had one and called the doctor right away. They said to monitor him and, if they persisted and his fever was 101 or above, to let them know. Of course, we knew that this would most likely mean he would have to go back into the hospital, which is something neither of us wanted, especially Jimmy. After the first episode, he would have them about 3 or 4 times a day and this lasted almost a week. Jimmy was adamant about not going to the doctor or the hospital but I was so scared that something bad might happen if he didn't. He is very stubborn and he dug his heels in on this one (even though I didn't agree). I think it made him feel like he had control over something, since all of this has been completely out of our control.

Jimmy has also been having a lot of swelling in his leg and foot, due to the accumulation of radiation and constriction of the tumor. Here are a couple of pics of how his leg looked.


Swollen, red and irritated

This skin was dry and starting to crack

Its was so much bigger than his right foot

With the help of Logan, we wrapped his leg with antibiotic ointment and put fun Spongebob and Crime Scene band aids on his foot where the skin had already broken...haha

Thankfully, the fever, shaking episodes have gone. The swelling comes and goes depending on how much time he spends on his feet...more than he should, of course.

In the last week or two, the pain has come back with a vengeance. We found out that the tumor grew a lot even though he had 25 rounds of radiation. There is some concern about this because it means there will be more area to remove during surgery and the fact that the tumor was not all necrotic. Having active cancer cells is never a good thing to have during surgery. His pain medication has increased and I have had to drive Jimmy around a little bit, since he can't function very well on the medication.

As for Logan, he's been really busy swimming and getting ready for the season. He practices 3-4 times a week and is getting pretty good, if I do say so myself. He loves it and that's what's important. Because of that, we've decided to take a break from karate for a while and concentrate on swimming. Since I can't get him to both, he had to make a choice and he picked swimming this time around. The first time, he wanted to do karate. As long as he's enjoying it and having fun, I'm okay with what that. Right now, he needs to keep busy and enjoy life as an 11-year old boy. He's got way too much on his plate already worrying about his Dad. He is so sensitive and caring that I worry about him too. I just want him to be a kid and not feel like he needs to be strong or worry about anything.

As for me, I a stressed out mess. The last few month or so has been hard. With two near-death emergency room visits, the fever and shaking episodes, the increased pain and swelling and with surgery looming, I have been depressed, sad and anxious all at the same time. Thank goodness for anxiety medication, therapy and friends who don't mind listening to me vent. I know sometimes you might get tired of hearing it, but I am grateful for your friendship and compassion. For those of you also going through this kind of thing as a caregiver, I highly recommend taking time to evaluate your own health and do what you need to do to stay sane and healthy.

Last week, after we met with Jimmy's doctors for pre-op appointments, the sadness really set in. I think I was trying to pretend like this wasn't happening again but talking to all of the doctors made it all very real again. It was like a slap in the face of reality...here we go again. When they start talking about all of the risks of surgery, it is very scary. We know that Jimmy will have some permanent loss of function in his left leg and we are hoping that's all he will have...of course, there is always the risk of him losing his leg. The doctors seem certain that this won't happen unless he develops a severe infection that can't be controlled. All in all, it was a very long and draining day...we literally spent over 8 hours meeting with the different doctors and for Jimmy to have final scans before surgery. We were glad to get that over.

Well, TODAY IS THE DAY OF THE SURGERY. I am writing this at the hospital since I have plenty of time. We've have been at the hospital since 6am and the surgery is planned to last at the very least 6 or 7 hours. If they run into anything out of the ordinary, it will go longer. Since the tumor has grown and it is encasing veins and the main artery in his left leg, this is not going to be a fun surgery or recovery. There is quite a team in the operating room today...an orthopedic surgeon, a vascular surgeon and a plastic surgeon will all be working on him. The vascular surgeon will be putting in a filter in his right leg to prevent clotting. Since Jimmy has deep vein thrombosis in his left leg and blood clots have already broken off from the tumor before, they want the filter as an extra precaution in addition to the blood thinner medication he has been taking. He will most likely be on this medication for several months after surgery. Once the filter is in place, the orthopedic surgeon will remove the tumor. She said she will take whatever she needs to get all of it out. That means she will take any tissue needed, including muscle and veins and a portion of the artery may have to come out too. The vascular surgeon will be on hand for reconstruction of any blood vessels. Of course, they won't know exactly what they will have to do until they get in there. That's the scary part...the unknown. After the orthopedic surgeon is finished with removing the tumor, the plastic surgeon will come in and close things up. Again, he won't know how he will be able to do that, until the orthopedic surgeon is finished with her work. There are two types of flaps that he can choose from for closure...one where he can close the incision with remaining tissue or another where he has to remove tissue from another portion of Jimmy's body to close the incision. Nobody really knows how its all going to go until the surgery starts.

So, as I wait today, I am again asking for your thoughts and prayers. Jimmy was very nervous this morning (me too but I tried not to show it to him...he knew though) and I am praying for an easy surgery and a positive outcome. I pray that this is the last of cancer that we will have to see...only God can decide that but I hope He's going to give us a break.

I will update as soon as I can.

TOUGH MONTH...RADIATION...PAIN...KIDNEY FAILURE...SEPSIS and ICU

10.17.14

This has been a very busy yet trying month since I last wrote. I haven't had time and when I did, frankly, I just didn't feel like writing.

Jimmy has thankfully finished radiation but the side effects are still around in full force. Since the radiation was targeted in Jimmy's groin area, his organs got zapped in the process, including his colon, intestines, bowel, kidneys and bladder. This past month has been so hard for him. The pain is still around in his groin area, but has been very severe down his left leg. He has had pain behind his knee all the way down to his foot. The swelling has gotten really bad in his half, ankle and foot. The blood vessels and capillaries are breaking and his ankle and foot have been swollen to twice their normal size. He has had to be careful to make sure that the skin doesn't break and get infected for fear of serious repercussions. The radiologist said that he would have side effects but nothing we never imagined all that's been going on. The doctor explained the edema in his leg is a result of a leaking lymphatic system and the fluid settles in his foot and can't be pushed back up, therefore, it just swells. This causes his leg to be hyper-sensitive, painful and numb all at the same time. Of course, he doesn't stay off of his feet like he is supposed to be doing and that doesn't help anything.

Jimmy is still having night sweats and isn't getting much sleep. The medication has been really messing with his system. The steroid has caused him to eat all day and all night. In less than 3 weeks time, he gained 25 lbs. and has been feeling very bloated. The pain medicine has to be taken so that he can function during the day but taken enough to help alleviate pain. There have been days that the combination of medication didn't work at all. Jimmy has also be cramping in his hands and feet. They would spasm and become gnarled in positions that were completely unnatural. The cramps were very painful and happened often. He kept drinking water to prevent dehydration but the cramps continued. The exhaustion of all of this has taken its toll emotionally as well. Jimmy is so tired of being sick and having to deal with all of this. He has good days and bad days all the while trying to stay positive through all of this.

This week we had another 911 scare. Jimmy started running a high fever, along with lightheadedness, dizziness, nausea and back pain. He was beet red and his skin was sizzling hot. I had to call 911 to take him to the emergency room. He did not want to go and fought against it but I knew he had no choice. Again, he had to be carried out of the house because he was so weak. When he arrived at the hospital, his fever was still high and his oxygen levels were very low. We spent several hours in the emergency room before he was admitted to the hospital. They weren't sure what was going on. They suspected a bacterial infection or a virus. They started him on IV fluids and gave him some strong pain medication and antibiotics and took lots of blood samples for testing. He had a chest x-ray and ultrasound looking for the source of the fever.

At 6:30 a.m. the following morning, the doctor called me to let me know that he had been put in ICU because of the severity of what was happening, coupled with the fact that he has cancer. They even called in an infectious disease doctor to evaluate him. Jimmy's liver enzymes were elevated as were his lactic acid levels. We soon learned that a virus was not the problem. Jimmy was very dehydrated and his kidneys were starting to fail as well as showing the beginning signs of sepsis. Had he not gone to the hospital when he did, it would have only gotten worse very quickly and the results would have been a lot worse. Thankfully, his chest x-ray and ultrasound were clear, which meant that there was no sign of pneumonia or blockage anywhere.

By the second day, Jimmy felt so much better and really wanted to leave the hospital...no surprise there. Even though he was definitely feeling better, the doctor wanted to see the blood culture results. By the following day, we found out that the cultures were clear and the doctors cleared Jimmy to go home later that day. I am so grateful that we got him in the hospital so that we could find out what was going on and that they thought he was well enough to go home.

As for Logan and I, Logan was awake when Jimmy started feeling so crappy before he went to the hospital and for that I am relieved so that he knew what was going on. I didn't want a repeat of having to tell him after the fact and have him feel like I was hiding something from him. As for me, these emergency room visits are so scary and I am so afraid that something is going to happen to Jimmy. I have had many sad days in the past month because I am so emotionally drained from having to deal with all of this for almost 2 years.

10.18.14
This morning started off like any other morning but Jimmy has started running a fever again and is having some issues leading us to believe that he still may have an infection...maybe bladder or kidney. We checked in with the doctor and he has to monitor his fever and if it continues over the next couple of hours, we will be back at the emergency room. Jimmy is feeling pretty badly right now and he looks about as bad as he feels. Please pray that this is just temporary and that he won't have to go back to the hospital.

Surgery note...Jimmy has two surgeries scheduled in November. The first surgery is the insertion of an IVF filter in the femoral artery in his leg. This is to help prevent blood clotting. Even though he is on blood thinners, clots are still a very real possibility. This surgery will be done about a week before the tumor removal surgery. That surgery is scheduled for November 10th and that day can't come soon enough. This time around, the treatment has been so much worse that the first time around and I just want this to be over and for Jimmy to be healthy.

I have to say a big thank you once again for all of your support and prayers during our journey with all of this. They are truly felt and very much appreciated.

Its a New Week...Less Pain...Less Pity

9.18.14

It has been several days since my Pity Party Post (say that 3 times fast!) and I want to update how Jimmy is feeling.

In the past week, Jimmy has been going to radiation...he goes 5 days a week...and yesterday, the radiologist said he believed the tumor looked like it has gotten a little smaller.  Woo hoo!  The pain seems to be a little better too, which is a relief.  Jimmy is very tired though.  The doctor believes it is a combination of the medication and the radiation making him so tired.  They are weaning him off the steroid and the nerve blocker medication hoping that will help somewhat with the side effects he's been having.  Speaking of side effects, this week has been a rather stinky week...I don't mean crappy either. ..well that's really a poor choice of words.  Apparently, the radiation is causing some gastrointestinal issues for Jimmy.  Since the radiation goes through his pelvic area to get to the tumor, it also goes through his bladder, colon and intestines.  Therefore, some issues come along with that, which is something the doctor told him to expect.  Let's just say that I haven't been spending too much time in the same room with Jimmy for any length of time...if you know what I mean!  LOL

I also wanted to post a couple of pictures of what one of Jimmy's medications is doing to his body. The medication is his blood thinner that is given as an injection.  He has to get these injections twice a day.

This is a bruise on his left side.  This bruise is about 6 inches long and about 2 inches wide.

This are the needle marks on his right side from the injections.  They bleed and leave little scabs...yuck I know.

Other than the ongoing bruises, the only scary thing that happened this week was yesterday morning.  Jimmy was sleeping on the couch (he often goes out into the living room to sleep when he wakes up in the middle of the night).  He has been having trouble sleeping and is having really bad night sweats again.  The night sweats are so bad that when he wakes up his clothes are soaked as well as any pillows or covers.

Anyway, I made coffee and went to bring Jimmy a cup.  He was sitting up on the couch but when I tried to hand him his cup, he didn't respond.  At first, I thought he was teasing me and just pretending to be asleep.  I kept trying to wake him up but he didn't respond.  I made sure he was breathing...which he was...but I started to get scared thinking that something was wrong.  I squeezed his left leg (the tumor leg) and he didn't move.  This was very unusual since there is pain/numbness in this leg and he doesn't like for me to touch it.  I smacked his cheek and he still didn't wake up.  I even pulled his eyelid up to try and get him to respond.  This went on for a minute or so (even though it seemed like forever) and then he finally woke up.  He was really groggy and it took him a few minutes to become fully awake.  Talk about scared...I was scared.  Logan was in the room and he even came over to see if he could help.  Of course, I was trying not to show how scared I really was in front of Logan.  I don't know what happened or why Jimmy wouldn't wake up but, hopefully, that won't happen again.

As for me, I'm not so weepy this week.  I am still very sad about what Jimmy is going through but it has not consumed me this week.

I also want to mention a couple of other people that live near me.  A young mother with children in Logan's school passed away this past week from cancer.  She was way too young and she left behind a husband and three children.  I did not know her but from everything I've heard, she was liked by all who did know her.  Also, good friend's wife has been diagnosed with cancer.  It was originally found in her lungs and eye but it is now in her pelvis and spine.  She is a wonderful wife, mother and grandmother.  I mention these two families because I ask that you add them to your prayers.  This is such a horrific disease and, as you know, it is not selective in who it chooses.

Thanks again for those of you who have reached out to me personally and expressed your thoughts and support.  Your prayers are appreciated more than you know.

Having a Pity Party

9.12.14
It has been a very emotional week for me.

Before I get into that, let me update you on how Jimmy is feeling.  His pain is being managed pretty well with medication at this point.  He has had 7 of his 25 radiation treatments so far.  Hopefully, the radiation will kill the tumor and maybe even shrink it (even though it didn't shrink the last one in his leg).  He has a slight limp when he walks and he gets tired easily.  If you knew him and saw him now, you would think he looks a little tired.  All of this is very taxing on his body and it literally wears him out.

We talked to Jimmy's surgeon this week and she seems very concerned about him.  Given the emergency room incident last week and the blood clots in his lungs, she is afraid the blood clots might come back and is thinking he may need a surgery to place a mesh insert in the femoral vein to keep blood clots from traveling to his lungs again.  The doctors literally told us that he would have died because of the blood clots if he had not gotten to the hospital when he did.  Jimmy's surgeon is afraid of a repeat performance of the blood clots if this surgery isn't done and she wants to make sure that he makes it to the big surgery to remove the tumor.  We trust her...the surgeon is Dr. Kristy Weber at the University of Pennsylvania Hospital.  She is the Chief of Orthopaedic Oncology and Director of the Sarcoma Program at the Abramson Cancer Center.  Basically, she is really the best at what she does and, if she says Jimmy needs this surgery, he will have it done.  She told us that she has consulted with other experts and will make a decision soon about scheduling this surgery.

Now, on to my pity party...

The day after Jimmy came home from the hospital I lost it.  I don't mean a few tears either.  I mean heaving and crying so hard I was shaking that lasted a long time.  I did it while clinging on to Jimmy in full sight of Logan.  While that might not be the right thing for some, it's what happened.   I just couldn't help myself.  It ended in one big group hug with me, Jimmy and Logan.  That was the best part of my breakdown.  Me and my two boys know that we are in this together, no matter what.

As for me now, I am incredibly sad.

I met with my therapist this week and she told me it was okay to be sad and to feel sorry for what is happening in our lives.  There is a part of me that feels really guilty for being so sad.  I mean...how dare I not be strong?  Does it make me weak for being sad?  What kind of wife/mom am I that can't be depended on to make things right?  What I realize is that its OKAY to have these feelings.  It doesn't make me weak or inferior, it makes me human.  That was a very hard realization for me.  I always want to be the one to take care of things and to realize that sometimes I can't do it all is hard to accept.

Every day this week has been very depressing for me and I have done a lot of crying.  I am just so scared that I'm going to lose Jimmy.  I am not ready for that.  I am not ready to face life without him nor am I ready for Logan to face life without him.  After last week, that's all I think about.  And, after talking to the surgeon and her being so worried about the blood clots, that didn't help either.

I'm not sure why but today was the first day all week that I didn't feel quite so sad.  Today was the first day I didn't cry this week.  The sun was shining and the sky was blue and I'm thinking that may have been one of the reasons.  The day was so bright and seemed so full of hope.  Whatever it was, I'm glad that I felt a little better today.

Again, I am going to say thank you to all of you who continue to support my family...both near and far...all 56 countries of you.

In closing, I have one thing to say...

From Jimmy

9.6.14
This is from Jimmy...

I am sharing this not for sympathy for me. I am sharing this for all of the people who take the time to read this. No matter how much life seems to make you angry, money problems, someone cuts you off on the road, dealing with brain dead idots. Be VERY thankful you are alive and your family is healthy. Life is good. Enjoy every second. My wife has been a rock in the past week, and has done a wonderful job of expressing what we are dealing with. Bottom line, be thankful for what you have. I am. It can get worse. FAST. So please, relax, tell everyone you love them, it's okay. Enjoy life!!

Cancer Pain is Hell

9.3.14
The good news is that Jimmy's chest pains have subsided...so the assumption is that the blood thinner is working on the clots in his lungs and his femoral artery.

He did have a fever last night as well as night sweats so that is still a little concerning but not altogether unexpected.

As for the pain, can you say...O.M.G?!   The pain has been excruciating for Jimmy and he is having a tough time of it.  The pain at the tumor site is a constant pain but he has also been getting these sharp, burning pains that go from 0 to 60 in the snap of a finger where it feels like his knee cap is going to explode.  I have never seen anyone is so much pain while taking so much pain medication.  Nothing is working...and I mean NOTHING.  I talked to the nurses and doctors and tonight the doctor decided to stack one of the stronger pain medications to give it a little umph, along with an anxiety med and IV tylenol so he could get some rest.

9.4.14
Thankfully, the med stacking last night seemed to work enough to let Jimmy rest a little but he can't continue to take the medication that way.  It is just drugging him up and making him loopy but not really getting to the root of the pain.  He is taking 3 different pain medications, something for anxiety, a blood thinner, a nerve pain medication and an antacid because a couple of the meds can cause stomach problems.  It sucks to have to take more medication because of the side effects of the original medication.

The pain seems to be getting worse instead of better and the tumor site appears to be getting bigger and bigger every day.  Please God help Jimmy!  The medication is not working and something needs to be done now.  I can't bear seeing him like this.  He is literally writhing in pain and cannot get out of bed without help.  He is having to sit to take a shower and brush his teeth because he cannot stand because it hurts too much to stand.  Jimmy is such a strong force in my life and to see him like this makes my heart very sad.  He is my rock...its not supposed to be the other way around.

I have also been talking to the radiation oncologist on a daily basis, since Jimmy was supposed to start his radiation yesterday.  Because of his pain level and the blood clots, they wanted him to wait.  It is a catch-22 right now because radiation is the one thing he needs because it would be the thing that would help to alleviate his pain but because of the pain, they don't want to start it.  In my conversation this morning with the radiation people, they said they could fit him in if he felt up to it.  He still had to do the dry run for radiation but they said they could do that as well as his first dose of radiation.  THANK GOODNESS!  Finally, some good news...radiation has started!!!

Jimmy decided to go ahead with the treatment despite the pain.  The nurse gave him in medications so that he would get optimum relief while getting is radiation.  He has to lay flat on a hard table and that is not something he can do easily given where the tumor is located, even without the pain he has been having.

Later in the day, the chief oncologist came in to visit to discuss options to manage Jimmy's pain.  It seems that the pain is stemming from the tumor pressing on nerves.  That is causing the constant pain and the intermittent sharp, burning pain.  He and the internal medicine doctor decided to give a steroid a try to see if it would take the pressure off of the nerves.  They would continue the other pain meds as well.  They also said that once they were able to get the pain under control, he could go home.

Well, within a couple of hours after Jimmy took the steroid, the pain began to subside.  By dinnertime, he was feeling so much better.  I can't believe it...this is working!  Something is finally working!  Thank you Jesus!

By the time, Logan and I left to go home, Jimmy looked more relaxed and relieved that the medication had finally started working.  Fingers were crossed that he would continue to feel better throughout the night.

9.5.14
When I called Jimmy this morning, he said he had a good night and was able to finally get some restful sleep.  Woo hoo!!!

He had his second radiation treatment and then the doctor said he could go home today, since he was feeling so much better...and that makes all of us very happy.

This has been a very stressful week.  Jimmy was literally at death's door.  If he had not gotten to the hospital when he did, he most likely would have died due to lack of oxygen.  That thought terrifies me.  I am so exhausted from being so stressed out all week...I'm even feeling a little numb too.  This has been our life for almost 2 years.  It feels like this cancer is taking bits and pieces of our lives slowly and painfully.  This cancer is unrelenting and it is so draining on all of us.

I HATE CANCER.

I know how hard it is for Jimmy and I to deal with, so I can only imagine how hard it is for Logan.  He came home yesterday from school with this questionnaire to fill out about his likes and dislikes regarding school, his friends, his free time, etc.  There was also a question "What makes you sad?"  Logan's response was "When my Daddy's in the hospital."  It brought tears to my eyes when I read that.  I wish so much to be able to shelter him from all of this but I know I can't.  I will say again what Logan said the other day on the way home from the hospital..."I just want this to be over."

Please continue to pray for Jimmy's healing and for Logan and I so that we have strength to get through this horrendous battle once again.  

xoxo

Had to call 911 last night...off to the Emergency Room

9.1.14
Well, last night around 9:00, Jimmy called to me from the bedroom.  I went in to find him drenched in sweat and white as a ghost.  His color was so pale that it seemed to have a green tint to it.  He breathing was shallow and he was dizzy and nauseous.  He said the pain in his leg and chest was excruciating.  He couldn't even sit up.  He said he went in to kiss Logan goodnight and when he stood up, his symptoms started all at once.  I knew as soon as I saw him that we needed to call the hospital.  Jimmy said no...my strong husband trying to pretend its going to be okay. Within a couple of minutes, he said "call 911".  I was terrified and just knew this was it.  I have never been so frightened in my life.  I was so scared I forgot how to dial "911".  My fingers just froze.  I finally snapped out of it and called for an ambulance.  It seemed like it took them forever to get here but I'm sure it was only minutes.

In the meantime, I ran to tell my neighbor to see if she could stay home with Logan, so I could go to the hospital with Jimmy.  I called my in-laws to let them know what was happening.  I put the dog outside per instructions from the 911 dispatcher.  I put clothes on (since I was already dressed for bed) and all the while continued to check on Jimmy to make sure he was still breathing.  And then the panic set in.

The ambulance finally came and because Jimmy could not sit or stand, they literally had to drag him through the house and down the stairs on a stretcher.  Finally, the ambulance took off with lights and sirens blaring while I attempted to keep up with it without breaking any traffic laws.  Of course, everyone on the road insisted on driving slow in the passing lane...ugh.

I finally got to the hospital and went to Jimmy's room in emergency.  He looked really, really bad.  He was still very pale and his oxygen level was about 3/4 of what it should have been.  Jimmy got poked and prodded, had blood drawn and they took a chest x-ray.  The x-ray came out clear but they also wanted to do a CT scan to make sure.  They gave him more pain medicine to try to get that under control..  I ended up staying at the hospital until almost 2 a.m. when he was admitted to the hospital and brought to a regular room.

9.2.14
My first thought this morning was Logan.  He literally slept through everything that went on last night...the ambulance people, the police officers, my neighbors and my mother-in-law.  He never even moved...thank goodness.  Today was his first day of school and he was so excited to go back.  And, I didn't want him to worry about Jimmy.  The morning went by and Logan just assumed Jimmy went to work, so I never mentioned anything to him.  He was so happy and excited that I didn't want to ruin his day.  Please don't judge...I felt like it was the right thing to do.

The morning was crazy...I had to get Logan off to school...talk to numerous doctors, including the surgeon and the radiologist... not to mention family and friends.  I felt like I was putting out fires with bare feet all morning long.

When I talked to Jimmy, he said he had gotten some rest but that he still had a lot of pain in his leg and that it was hard to breathe.  He said they had put him on oxygen overnight too.  By the time I got to the hospital, he had already had his CT scan of his chest.  The doctor came in and told us there were blood clots in his lungs and that is what was causing him to have shortness of breath and pain in his chest.  He said they would start him on a blood thinner to help dissolve the clots.

The radiation team called too.  They said they are ready to start Jimmy's radiation on the tumor tomorrow.  I really don't think that's going to happen.  As much as radiation needs to start, I don't think Jimmy is strong enough to have it done.  I will be very surprised if the doctors say its okay.  Right now, they just want him immobile and to rest.

I stayed with Jimmy all day until I  had to go get Logan off the school bus.  I was dreading having to tell him what happened and that Jimmy was in the hospital.  When he got home, he was still excited from the day and he said he had a great first day of school.  I then told him what had happened the night before and that Jimmy was in the hospital.  I saw that he instantly got tears in his eyes and he walked away asking why I kept it from him.  He got mad at me because he thought I was trying to keep it from him.  We have always been honest with Logan about Jimmy's cancer so I do understand why he felt this way.  We continued to talk some more and he seemed to understand why I did what I did.  He wanted to go immediately to the hospital to see his Dad so that's exactly what we did.

When we got there, Jimmy told me they had done an ultrasound of his leg where the tumor is located and found a very large blood clot in his femoral artery.  This is the main artery going down his leg and the tumor also happens to be attached to this artery.  Now we knew that this was the reason for the pain, numbness and hypersensitivity he had been having in his leg the past few days.  The hypersensitivity had gotten so bad that if you just touched his leg, he said it felt like you were dragging your nails across it.

Well, we at least know what we are dealing with right now and I am relieved that Logan felt reassured when he went to visit Jimmy at the hospital today.  He told me how much he loved me on the way home and that he just wanted all of this to be over...me too.

Right now, I am asking for your prayers for my family once again.  I am praying that the pain medicine will continue to help keep the pain at a comfortable level, so Jimmy can get some rest tonight and that the blood thinners will work to help dissolve the blood clots.  I pray for the strength to take care of both Jimmy and Logan while we cross yet another hurdle.  Please God, I pray that it is not time for you to take my husband. Not only do I need him but Logan needs him more than anyone.

In ending this post, I say thank you in advance once again for your prayers and support.  xo

Biopsy results...short and not so sweet post

8.29.14
Well, we got the biopsy results.  As expected, it is another sarcoma and it is the size of a baseball.  WTF

We were not surprised, but really??  Again??

Jimmy's leg is so swollen all the way from his hip to his knee.  He is also having numbness in his left leg because of it.  It is so hard to see him in such pain.  I feel helpless.

I HATE THIS!!!

Biopsy went well...I even got to watch!

8.27.14
Jimmy's core biopsy is scheduled for this afternoon.  He is still in a lot of pain, so I drove him to the hospital to have it done even though he wanted to do it himself.  We got there and checked in and only waited a little while before they called us back.  Yes, I mean us!  They let me stay in the room when they did the biopsy.  I couldn't believe it.  I was glad though because it was really painful for Jimmy and I was able to hold his hand during the procedure.  I did have to keep reminding him that he was breaking my hand...haha.  The procedure was very interesting to watch though.  I was sitting right next to the doctor and I was able to watch the ultrasound  to look at the tumor and see how he guided the needles for both the anesthesia (local only) and the core sample.  Jimmy was pretty numbed up at the biopsy site (and would be for a couple of hours) but they gave him an ice pack for the ride home to help with his pain.

Now we just wait for the results.  At this point, it is merely a formality but once the results are in, Jimmy can start radiation.  The sooner it gets started, the quicker his pain will start to subside.  The radiation is expected to kill the tumor and the radiologist said the pain should go away within a few weeks after the start of radiation.

That day can't come soon enough for Jimmy, I know.

8.28.14
The night sweats are back again with a vengeance which means I'm back to washing pillows and sheets daily.  This makes it hard for both Jimmy and I to get good sleep at night.  He tosses and turns and I know he is uncomfortable, hot and in pain.  I wake up throughout the night just to see how he is doing. It makes for a very tiring next day for both of us.

Jimmy is sore and swollen, more so than usual because of the biopsy.  He just needs to lay down and rest because when he gets up that is when the pain starts.  The mornings are getting worse for him.  Right now, he feels the need to work  (we have a construction company) even though he doesn't feel like it.  I get that he wants to work while he can but I hate to see him in pain while he's doing it.

Today has been a better day emotionally for me.  I think I was just extremely anxious about the biopsy the last few days.  Several people have reached out to me the last couple of days and I really appreciate it.  Just being able to talk to people going through the same thing helps a lot.

I also want to thank my friends who have helped me with Logan this past week while Jimmy and I went to see the different doctors.  You have all been so kind and supportive.  I really hate asking for help from anyone because I always think I can do it myself.  I am learning that I can't do it all without help.  This past two years has shown me that.  I really means so much to know I have friends I can depend on.

Also, I have found that people don't know what to say when they find out that Jimmy's cancer is back. Some people actually say "I don't know what to say".  That's okay.  When I have run into friends and acquaintances recently, some have had that awkward silence when they first see me because they don't know what to say or are afraid to say something to me about Jimmy's cancer.  Its okay to bring it up.  Its okay to say something.  I really don't mind.  The more people that know and are thinking about it means that there is more of an opportunity to have people pray for complete healing for Jimmy.

I will update when we get the biopsy results and when radiation starts.

Thank you again to all of you for all of the prayers and support we have received from around the world.

Third time is NOT a charm...

8.25.14

We met with the surgeon to find out how she wanted to move ahead with Jimmy's treatment.  I was extremely nervous before the visit.  I think I just wanted to get the ball rolling.  This has been extremely hard to take...again...and so soon.

The surgeon went over the scans with us and reiterated what the oncologist told us about the tumor.  It is the size of a baseball and it is being very aggressive.  She wants Jimmy to have a biopsy, so they will know exactly what they are dealing with (even though she's sure already) and then wants him to have 25 rounds of radiation with surgery after that.  With that time frame, surgery should be about the end of October.

8.26.14

Last night was not a good night.  Jimmy tossed and turned all night.  He said the night sweats are starting again...tumor fever.  The pain the last couple of days has truly been unbearable for him.  He is having trouble lifting his leg and he is limping pretty bad.  He is taking a lot of pain medication too.  I wish there was something I could do to make it better for him.

Jimmy did go meet with the radiologist today.  While he was there, they went ahead and did the mapping and tattooed the area for treatment.  The radiologist told him that this time around he may have some more side effects than he did the last time.  Given the area where this tumor is located, the radiologist said his bladder and lymph nodes with most likely be in the range of treatment.  This is not going to be pleasant for Jimmy.

The last couple of days have been very emotional for me too.  I feel really depressed and sad.  I feel like crying at just about everything.  I am so scared that I am going to lose my husband to this disease.  I do trust the surgeon and the oncologist and I pray that we will get through this crisis like we have gotten through the other two.  I am also concerned for Logan.  I am very aware of the fact that this bothers him too.  He told me the other day that he is worried about his Dad but that he's okay.  I hope so.  It hasn't been easy for him either and  its so hard to try and shelter him from the things that are going on. 

Tomorrow is the biopsy.  It should be routine and we should have the results pretty quickly.  I will post an update after we get the biopsy results.

I do want to acknowledge all of the people who have reached out to me.  It means a lot and I welcome the support.  My blog has now reached people in 54 countries and I continue to hope that it is as encouraging for you as it is cathartic for me.

Life sucks right now...Cancer is back yet again...

I took a break after the last surgery in April just to catch my breath and regroup.  Here is a recap of how things have been going until now...

4.17.14

I talked to Jimmy this morning and he said that his fever was gone and that he was feeling better.  The doctor even said he might come home tomorrow since he was doing so well.  That is terrific news!  I am taking Logan out of school today so he can spend the day with Jimmy.  He only had a half day anyway and he teacher didn't mind so...off to the hospital we go...Jimmy progressed nicely and he went home the next day.  Recovery was relatively easy.  He had pain in his chest and had a tough time learning to take deep breaths.  It took a couple of weeks before he started feeling like his old self again.

6.16.14
Jimmy had his routine scans...a CT scan of his chest and an MRI of his leg, where the original tumor was located.  ALL scans were clear!  We headed into summer happy and healthy.

7.30.14
Jimmy stared feeling pain in his upper left leg.  He had painted the bathroom and thought maybe he had pulled a groin muscle while doing that.  I was concerned because it was the same leg as before.  He went to his primary care doctor and he said he thought it was a groin pull and gave him some ibuprofen.  The pain kept getting worse.  Finally, I called his oncologist and wanted to know if Jimmy could get his scans sooner than the normal 3 month period.  They agreed that he could and scheduled the scans.

8.15.14
Jimmy had the CT scan of his chest and the results found some scar tissue but nothing else that the doctors were concerned with right now.

8.18.14
Jimmy had the MRI of the area where he was having pain...his groin and pelvic area.  We got copies of the scans and took a look ourselves.  We could see something big but we didn't know what it was...could be a groin pull or a tumor.  The doctor called  us on Tuesday, 8.19 to let us know that there was definitely a malignant mass about the size of a baseball.  Our worse fears confirmed yet again.  The doctor said he would confer with the surgeon so we could get a game plan for treatment.  We know there will be radiation and surgery but we won't know how and when until we talk to the surgeon.

8.22.14
It has taken a few days but we got a call from the surgeon this morning and Jimmy has an appointment on Monday to plan for surgery.  I will keep you posted.

In the meantime, I am asking all of you prayer warriors around the world to have at it again...we can use all of the prayers we can get.  This is very depressing and stressful for our family.  We have been lulled into a false sense of security by having clear scans every other time they have been done.  Now, the two year time frame to be cancer free starts all over again.

I am worried about Jimmy.  He has had a wide range of emotions yet again this time around.  He's been in denial...been mad...been sad and even anxious and sick to his stomach.  This is really taking its toll on him.  I am worried about Logan.  He is still a little boy and I can't imagine how he is going to deal with this again.  He says he worried but that he's okay.  I hope so.  As for me, I am both mad and sad at the same time.  I am worried for my family.  Not only are we dealing with cancer once again, we are still dealing with bills from the first go-round, when insurance did not cover anything, to the tune of $490,000 that we are responsible for on our own.  I know people say that God only gives them as much as they can handle.  Well, God, I really need you to slow down with the bad news.  It truly is getting to be too much.

Having said that, I welcome your thoughts and prayers once again.  Please feel free to comment because hearing from you makes it just a little easier to deal with all of this.  The Kulicks Kicking Cancer Facebook page is available for comments as well.  Thanks for all of you who have already reached out...your support means so much.   A donation page has also been set up at https://www.youcaring.com/medical-fundraiser/kulicks-kicking-cancer/42802 to help with the astronomical medical bills.  If you would like to send an email, you can send it to kulickskickingcancer@gmail.com.

Surgery Round Two...Jimmy - 2 and Cancer - 0

4.15.14

We had a very nervous night last night in anticipation of the surgery.   It was hard to get to sleep and even harder to get up at 4am.  It was stressful to have to make arrangements for Logan for the day with two different friends and equally as stressful worrying about how my MIL was getting to the hospital.

We got to the hospital at 6am for a 7:30 surgery.  And, yes, you guessed it...surgery didn't start until 9:30.  After 2 hours, we were told that the surgery was going well but they were going to be at least another hour or so.  The surgery ended up lasting for 3 1/2 hours.  The doctor came to talk to me after the surgery and explained that the delay was that they had to make sure they got everything they needed to get with the scope without having to cut him open and take a piece of rib.  This decreases Jimmy's pain and recovery time significantly than if he had had to be cut open.  Pathology did confirm what we knew...that the tumors were in fact sarcoma that had metastasized.  After surgery, Jimmy was brought to ICU and was breathing on his own, which was very good.

When I got to the room, Jimmy looked pretty good.  His face was a little swollen.  He was very tired looking and completely stoned...haha.  He was talking and coherent though.  And, thank goodness for the pain pump to keep him from feeling any pain while the anesthesia wore off.  He has 3 small incisions from the scope and a chest tube to drain the excess fluid and blood from his lung.  He also had a catheter...yuck.  All in all, surgery was a wonderful success.  I can't tell you how relieved we both are that the doctor did not cut him open.  I stayed until they brought Jimmy his oh-so-yummy liquid dinner, which he didn't eat and I didn't stay too long after that.  He really needed to rest and I needed to get home to Logan.  It was a very long and stressful day and I'm glad its over.

After surgery...looking pretty good

With his "lung" pillow for everyone to sign..haha

All hooked up

4.16.14

I went to visit Jimmy and he looked so much better than the day before.  He was sitting up in a chair when I got there and he had walked a few laps around the unit already. The nurse had also removed the catheter by the time I arrived.  Jimmy said it was painful and he was happy it was gone.   I brought him Starbucks coffee to start the day and I brought one of his favorite foods for lunch...chicken cutlets...with my homemade honey mustard sauce, since he was told he could go back to a regular diet today.  I was able to give him a sponge bath as well (hee hee hee) and he looked and felt better just getting clean.  They took him off IV pain meds and started him on meds by mouth, which meant they could remove one of the monitors he was hooked up to...one less thing to drag around when he got up.  It was a relaxing visit...I napped and snored a little while he sat in a chair watching tv...some visitor I was..haha.  I did have to leave earlier than I thought, since my MIL wasn't sure she could get home in time for Logan to get home from school.  I didn't want to leave Jimmy but I had to get home.

I called to check on Jimmy and had started to feel really bad.  He was in pain and had started to run a slight fever.  I was worried, especially since I left early.  When the doctor came in a little later, he said that a slight fever was okay and that they would watch it to make sure it didn't get too high.  If this is the only issue he deals with while in the hospital, we'll take it.  This has been so much better than we expected...thank you Jesus.

As always, we appreciate all of the prayers, support and the outpouring of concern for Jimmy's health and the well-being of our family.  Thank you so much.

Surgery...AGAIN

4.9.14

Well, it has been an interesting couple of weeks.  After we found out that Jimmy's cancer had metastasized to his lungs, we were hesitant to tell our son, Logan, what was going on until we had a plan in place with the doctors.  We waited almost a week to tell him, since he had a big week at school with state testing and a karate tournament that we really wanted him to focus on.  The Saturday after we found out, we sat down with him and told him that Daddy had to have surgery again and that it would take several weeks for him to recover.  At first, he didn't understand that the cancer had come back.  He and I talked later that day and he then realized that the cancer was back and that it wasn't good.  Its amazing what kids remember.  He remembered my husband and I talking about what if the cancer spread to his lungs several months ago. Logan seemed to take the news okay but I know that he is worried about his Dad.

I hate that Jimmy has to go through this again and so soon.  We were given basically two types of procedures to consider.  Surgery or Cyberknife.  We opted for surgery to completely remove the tumors and get them out of his body.  This was not an easy decision but one which we decided was best for Jimmy and for our family.  Here's a little more about how we made our decision.

We met with the surgeon to see what would be done.  The surgery will take out 2 tumors.  The first and largest tumor will be relatively easy to get to and the surgeon can remove it with a scope.  The second tumor might be harder to get to and the surgeon thinks he may have to make a large incision in Jimmy's back that will run under his arm to get to it.  He will also have to take a small piece of rib to do this.  A resection of his lung will be done at this site to remove the tumor.  This does not sound pleasant at all.  With any luck, the surgeon can get to both tumors with only the scope.  Recovery from the surgery will be anywhere from 2-3 weeks with the scope and 4-6 weeks with the big incision.  Ugh.

We did also speak to a radiation oncologist that does the Cyberknife procedure to see if this was a good option.  The Cyberknife procedure itself is non-invasive.  But, there is a needle biopsy procedure that has to be done prior to radiation and is requires a needle to be inserted into the lung.  This does have risks, which might cause Jimmy to be hospitalized with a chest tube if his lung were to collapse.  The Cyberknife procedure is also spread out over several weeks and will encompass a lot of time.  By the time the Cyberknife process would be over, he would have already recovered from the surgery he would have had instead.  Also, there is the exposure to additional radiation with this procedure and the tumors would still be in his body.  Given all of the information we received, surgery was the best option.

Now that is has been decided, we just wait until next week.  The anticipation of waiting is nerve wracking for everyone, especially Jimmy.  He is not looking forward to the surgery at all...not that I blame him.  I pray that all goes well and we won't have to deal with this again.  Again, I am asking for your prayers and support that we get through this next hurdle.

On a side note, the day after we found out about the cancer coming back, I was in the shower and Jimmy has a shaving mirror in there, I saw the word "Believe" as clear as day in the mirror.  I am taking that as a sign that all will be okay even though I haven't seen it again.  Jimmy and I had also planned a date night on April 17th. We have to cancel it but hopefully, we will be able to reschedule it again soon.

Also, my blog has now reached people in 50 countries.  I hope it has given insight, advice and comfort to others who may be dealing with cancer.  I appreciate your emails so much and my prayers go out to those who are also dealing with sarcoma.

I will update again after surgery.