Pieces of our life...

I know my last post was 10 days ago and I sure everyone is wondering what has been happening because for a while there something happened every single day, sometimes every hour but honestly there hasn't been much to say until today.

We flew home on the 8th - the travel day was terrible, Jarod was sick at the airport and in a lot of pain on the fight and the car rides but we made it home around 3:30 pm.

From the time we arrived home Jarod has been sleeping, taking pain medication and eating just enough to keep the nausea away from the meds. He is in a lot of pain and they increased the mg of the percoset he is on. He is just trying to focus on resting, the soreness is deep into his mussels and organs and talking even hurts. It takes all his energy to focus on healing and the pain medication makes him out of it and very tired.

Sleeping, eating, pain meds has been the routine for 8 days until this morning. Today was day 15 out of surgery and was his 1st scheduled post opp appointment here in Atlanta. Dr. Mims said he looked great, no infection and the staples were ready to come out. Jarod said it gave him some relief to get them out but still feels very weak, tired, and in deep tissue pain. The doctor said for the next 4-6 weeks Jarod will not feel like doing anything, all the food he is taking in is going toward healing the incision and will make him feel weak and tired and take all his energy for at least another month.

Now we are in the recovery process. Since all of this began in March there has been so many logistics, appointments, things to do, transportation, etc and so much that needed to be done we were in action mode, always moving forward and fighting and we would not have been able to do it without the help of friends and family. We are so grateful for the support, cards, calls, emails, help and things that were done on our behalf through out the last 5 months.

But now the action steps are behind us. We have fought the battle as best we could and now we must wait out the next two years to see if we did it. There isn't any cancer in Jarod right now and they will closely monitor him over the next 2 years to make sure that it doesn't come back. The chances are very much in our favor that this over but we just have to be patient and wait for that time to come and hopefully at the end of the next 2 years truly put all of this behind us.

What Jarod and I need to focus on now is piecing our lives back together. He needs to heal, and have the pain subside. Then we need to take a look at ourselves and figure out where we go from here. It's not about going back to the way things were, its about how this has changed us and our direction and what we want out of life as individuals and with one another. The past 6 months we have required the help of those around us and we won't ever forget the generosity that has been shown to us, and make no mistake we are truly grateful, but the next 6 months is a journey Jarod and I have to do ourselves.

Right now both of us are having a hard time talking and sharing, him because it physically hurts and most likely a little emotionally too and me because I need peace and time to reflect on what has just happened and each day we get up, we get out of bed and thank the lord we are at home with each other and day by day we begin to pick the pieces up and lay the road for rest of our journey.

When there are improvements or changes, I will share them here but things will be far more gradual from the point forward.

We thank you for everything and now ask your patience and understanding with as we focus on our health and moving forward with our lives.

Lindsey & Jarod

Road to Recovery

After Jarod's hiccups in the hospital he improved over the night of the 4th and the doctors said he was strong enough to be released yesterday.

We arrived at the hotel around 12:00pm and got him up to the room. He thought he was up for eating a little bit so he a little chicken noodle soup and then laid down for a nap.

Later in the afternoon he wanted some mashed potatoes so I went to get him some, he had about 2 bites and they had too much flavor for him just introducing food back into his system.

He took his pain meds at 5:00pm and then another nap, around 7:30 he woke up hungry and wanted some more chicken noodle soup. I heated up about 1/2 cup of soup and Marcy and I sat with him as he ate. His body wasn't ready for food apparently because he vomited right after finishing it. With an incision extending from the top to the bottom of your torso this REALLY hurt and moved his pain up several degrees and also set back his healing by about 24 hours.

He didn't sleep much at all and we were up about every hour trying to make him more comfortable.

I was planning on calling Dr. Beck this morning to go over what had happened and after I took Jarod down to have a yogurt for breakfast he and Marcy sat while I came back to the room trying to get the doctors on the phone, as I was writing an email and calling - Dr. Beck reached me first.

He had promised to call when the pathology came in and he did. Jarod's full pathology on all the nodes and masses that were removed came back as necrotic tissue which means no more chemo!

Why I had him on the phone I asked him about Jarod's pain, and vomiting he told us to just do liquids and let him rest it will set him back about 24 hours and we don't want to push him into food as long as he is drinking to stay hydrated he should be Ok.

So Mom and I walked to get him more pain meds why Marcy spent a few hours with Jarod alone before leaving.

When we got back with the medication Marcy told Jarod she would see him on Thursday when she picks us up at the airport and I walked with her to get some food and get on the Indy bus to go to the airport. She got on a little after 2 without a problem and should be home this evening around 7.

I am so thankful for everything that Marcy and my Mom have done over the last week to help Jarod and I and we are all so so so tired, so so so ready to be home and move forward from this.

Jarod took a good nap and at 4:30 felt well enough to walk around the hotel floor before taking his meds again at 5:00pm.

He is still uncomfortable and in pain but I see a huge improvement from his pain level last night.

Hopefully tonight he will be able to get more sleep and tomorrow rest before our flight on Thursday.

Thank you for all the thoughts and prayers, thank you to all of you who have helped with Georgia and traveling and work related items, now with a good path report hopefully we can began the road to recovery both physically and mentally.

July 4th

During this entire process from the beginning of March we have been in a day by situation doing what needs to be done to get through the day. It is a very hard thing to understand that each day is so different from the next and there are good days and not so good days. Its a yo-yo of emotion and is totally exhausting and also frustrating because as soon as you get one situation out of your mouth - it's already changed.

Well here in the hospital after a MAJOR surgery - its not day by day, it HOUR BY HOUR and that is even more intense and a much more dramatic roller coaster.

Yesterday when I updated the blog, facebook in the morning things were advancing rapidly and extremly well and later in the afternoon I had a chance to return a few calls outside while Marcy and Jarod were taking a nap by the time I got back to the room at 3:45 - things were different.

Jarod went from being sore but comfortable to being in EXCRUCIATING pain due to the fact the IV drugs wore off and he was not ready to be on just oral medication. His heart rate increased, he began wheezing his oxygen dropped and he couldn't even move he was in so much pain. They put him back on oxygen which helped stabilize his heart rate, and breath easier.

We then had the nurse come in who gave him a shot of dalaudid for pain, he needed heartburn medication and something to calm him down. It took until 6:00pm before he was OK enough to get some rest.

Marcy, Mom and I let him rest, left to shower and get food and came back later in the evening. They decided to keep him on the dauladid for pain control through the night, which helped but was not taking it away.

He also developed some redness around the lower part of the incision which we were a little concerned about and he left foot was cooler was the right.

Mom and I went to bed around 12 to rest, Marcy stayed with him again - and during the night they drew his blood at 3:00 am and gave him a breathing treatment around 5:30 am. He had a hard night getting up all the time and being in pain.

I was back in the room a little after 8 and Dr. Beck's team came in at 8:30 we told them since they had seen him 24 hours earlier we had some changes - we pointed out all the issues, breathing, leg, redness, pain, and going home. Dr. Cary one of Dr. Beck's chief team members looked at everything. The leg issue is a short term side effect from nerve damage and will go away, he drew a circle around the redness near the incision and put him on antibiotics to prevent a serious infection. They listened to his chest and said the fluid was not deep in his lungs and was OK. They had received the blood work back from 3:00am and everything looked fine giving us a lot of comfort.

They also increased his oral pain meds, and keep him on the IV pain med. Dr. Cary said he was going to call Dr. Beck to come by and see Jarod. Dr. Beck arrive about 45 mins later and confirmed everything that Dr. Cary said and overall told us Jarod was looking good. Although the ideal situation would to have surgery and go home 2 days later - every patient is different and this was such a dramatic surgery and only 72 hours out is really OK to be where he is. Dr. Beck also promised us that he will not be released until all of us are comfortable with Jarod leaving and his number one concern was controlling Jarod's pain and then once he is off of IV pain meds -at his own pace he will need to be on oral medication only for at least 18 hours before being released. This means it will be at least late tomorrow or Tuesday before we are leaving.

Overall Jarod is OK Dr. Beck has confirmed we just have to pace ourselves and make sure the pain management is under control. Jarod also has not had anything to speak of other than clear liquids and apple sauce to eat, we have ordered him some chicken noodle soup for lunch so hopefully that will go over well.

Even though we won't be able to do anything for the 4th - there is a place here in the hospital we will be able to see fireworks tonight. As I said in the beginning hour by hour then day by day and hopefully soon week by week, we just have to get through it.

RPLND at IU

Well some of you have been following facebook and have a general idea of where Jarod stands today but for those of you who don't have facebook or would like to know more about what has happened since Wednesday here it is.



Wednesday we met with Dr. Beck at his office he is very young and seemed very knowledgeable about Jarod's case. He drew a diagram of he was planning on doing during surgery for Jarod, Marcy and me. He explained that the 2 masses were located on the upper Venacava and the lower part of the vena cava. They would need to move his small intestine out and lay it on his chest and then very carefully cut out the 2 masses, fell through all the organs and remove all nodes on there retro peritoneal cavity.



Although this is still a huge surgery there was some good news to this - originally they told us that they might have to remove all the nodes on both sides which is harder recovery, more time, and more risky for long term side effects. He also told us that there was 90% chance that the masses would come back as something other than active cancer. There is a 45% chance it would be dead tissue and a 45% chance it is a local growing abnormality that is not spreading but still needs to be removed and only 10% chance that it is active cancer.



If any of the pathology shows active cancer then Jarod will need to under go 2 additional 3 week treatments of the same type of chemotherapy that he just finished.



So we finished up our appointment with all of questions answered and with that we went out for a light dinner before heading to bed early.



Thursday Marcy and I were both up well before dawn and all three of us arrived at the hospital at 6:45am. We had pre-checked in on Wednesday so there wasn't a lot of paper work. They took him back to prep him before we allowed to come sit with pre surgery. The doctors came back and went over all the procedures and everyone was really nice we were able to stay with up right up to the operating room door.



Marcy and I were shown where the surgical waiting room was and they gave us a pager so we could walk around or go get something to eat and every hour and half the nurses came to give us an update. My Mom arrived around 11:30am.



Jarod finished surgery around 12:45pm and Dr. Beck came out to tell us how it went, why he was still in the operating room being woken up before moving to recovery. He said that the lower mass on the vena cava was so tightly wrapped around the nerve endings going to testicle that there was no way he could save the nerves on the right side because he couldn't risk leaving any of the mass. When he cut the mass away, he damaged all the nerves on the right side and also made a small hole in the vena cava which he had sewn up. Dr. Beck said that the good news was the mass was dead tissue and that there is still a 70% chance he will not have permeate damage but they will just have to see how he does during recovery. Dr. Beck said he was able to move the left nerves out of the way and hopefully save those from any damage but will again have to wait and see as Jarod starts to recover. There was no bleeding during surgery and he felt around all the organs and everything else was fine so that's great.



The smaller mass at the top of the vena cava was easily clipped off but was too small to tell what it is so we will have to wait on the pathology report to come back on that one, which will take several days.



2 hours after that around 4:00 pm Marcy and I were able to go back to see him in recovery for just 5 mins he had good color and seemed comfortable, although he doesn't remember anything about us being there.



Finally around 6:00pm he was put into a room. We had requested a private room but they hospital was so full that none were available, it actually worked out well when we found out who the room mate was.



Jarod was a little upset when he came to and he realized he didn't have a private room and that there was some nerve damage but once he realized that it was a better situation he was OK.



Our room mate was a 24 year old man named Josh who had 2 days prior to Jarod under gone the same RPLND surgery and was up walking with no tubes, or anything other than oral pain meds. He and his wife Amy (who was an oncology nurse) were there with his Mom. They had been diagnosed 1 month prior to Jarod in early February but his was stage 3. His was also on his right side and had undergone the exact same course of treatment as Jarod - orchiectomy, 9 weeks chemo and RPLND. He had been seeing Dr. Einhorn the entire time and was talking about what a great guy he was. Both his wife and Mom nurses and know a lot about what Josh had underwent and all 3 were so positive about how we have the best of the best.



It was so nice to meet someone so young who had experienced the same thing at the same time. We got his contact info and plan on staying in touch with him.



Yesterday as you can imagine was an extremely emotional day for me. I think I am a good planner, and caregiver and for the emotional hardships I feel compassionate and strong, however hospitals and medical problems are things I lack experience and understanding and I have a lot of anxiety. More than anything I hate to see Jarod in pain, or upset or scared and he had been very scared prior to surgery. Marcy on the other hand has a lot of experience personally and professionally in hospitals and feels comfortable and capable in these environments. This was such a blessing for me because I was exhausted, drained, scared, overwhelmed and couldn't do what Jarod needed during the night. Marcy offered to stay with Jarod and let me go to the hotel with my Mom and get some rest.



We came back here and a really nice bellhop named Mike saw us walk in and could tell I was under stress, he asked what was wrong and if anything could help us and we said well if there is a larger room for when my husband's get out of the hospital it would be great. He immediately moved us the a handicap suite which is HUGE and has 3 beds, several chairs, a handicap shower, desk and small kitchenette which is amazing.



I went straight to sleep and then first thing this morning went back to the hospital to be with Jarod. Marcy had been up all night and Jarod had gotten sick which put him in a lot of pain. My Mom took Marcy to the hotel and I stayed with Jarod.



Jarod did really well in less than 24 hours after surgery he was in a chair sitting up, and then 24 hours after surgery walked the entire hallway and 2 more times got out of bed and sat in a chair again, which is great!



Josh his roommate was released from the hospital today around 1:00 pm which is really encouraging to us because he is 2 days away from Jarod so gives us a good guideline to go by. The doctor came by around 2 and said he was doing great. They moved us to a private room at 3 and then Jarod slept most of the rest of the afternoon.



My Mom has been transporting Marcy and I back and forth back and forth back and forth from the hotel to the hospital. She drove 12 hours to get here and it has been really helpful!! Marcy is again staying the night with Jarod so that I can get some sleep for when he is released. I am so grateful that Marcy is good with hospital and medical things and is so willing to stay with him during the nights.



I couldn't do this without either of my Mama's :) and as Jarod said earlier, "I really think it's going to be get better from here."



Thank you all for all the thoughts, prayers, calls, emails, facebooked and comments. We appreciate it! Also Jarod wants people to call him as well even if it is only so he can see who is calling.