A Year and 1 Day...

Its been a year and one day since I was diagnosed with Stage 4 Neuroendocrine Insulinoma. This year has gone so fast for me and yet very slow for others going through this with me.

I remember the day I went in to the ER. It was October 8th, 2014. My girls 4th B'day. My blood sugar had continuously dropped all morning. When it finally hit 30 I asked my mom to take me in. The Hospital ran tests and scans, and the next day transferred me to Indiana University Hospital, and then on October 14th I was given my diagnosis of cancer. I spent five and a half weeks at IU Hospital in Indy. Since then, I've been in and out of the hospital for various reasons (treatments, surgery and for pain), from short stays of one night up to stays as long as 11 days.

An update you since my last post in April:

Click here to read my last post for a more information on what's previously happened and information I'm receiving from my Drs.
http://livingrare.blogspot.com/2015/04/surgery-scheduled-and-real-conversations.html

On April 30th I had surgery to remove a third of my pancreas (which included the main tumor), some lymph nodes and my spleen. They also did a biopsy of the tumors in my liver that I had treated with radiolembolization to see if the radiation truly did kill the tumors. They found with the biopsies the tumors were still viable. My recovery from the surgery was supposed to be 4-6 weeks and ended up being 4-6 months, due to complications from the surgery. After several trips to the ER for unbearable pain, it was discovered I had a blood clot and three large sacks of fluid in my abdomen and back. This took place over a couple of months this past summer and kept me in bed majority of the time. I was given pain medicine to help control the pain and was told my body should just absorb the fluid, but I ended up being admitted to the hospital several times and finally they decided to put in a drain. As of my last scan at the end of July, I had no new tumors and the fluid and blood clot are getting smaller. Its just been in the last month or two that I've finally been able to get out of bed, and out and about. I still wear down easily and have some pain from time to time, but I'm getting stronger every day. I'm enjoying being able to spend time with my husband, girls, family and friends.

What's next:
On October 26th I will have a CT scan of my chest and an MRI of my abdomen. Followed by appointments with my radiologist and oncologist, where I'll receive the results of the scans. In my last post I wrote how my oncologist believed that the cancer has already spread to other areas in my body that only an MRI could see and not by PETCT scans. As you can imagine this makes us all very nervous to have this MRI. Although we are scared we know God is in control and we choose to believe he will take care of us no matter the outcome.

Prayer request:

• For the upcoming appts. on the 26th. This will be a long day for me, Josh and the rest of my family and friends waiting to hear the results.
• For continued daily strength and emotional states for all of us. This is just as hard on Josh and the girls. Although they are young they know their mommy is "sick." They pray for my "ouwies" everyday. They are such sweet girls! Josh has been amazing. He is a great husband and father. He takes such great care of us! I couldn't love anyone more!

I feel very blessed to have you all in my life. So many people have stepped up by sharing a kind word, visited with us, prayed with us or for us, been a shoulder to cry on or vent too, taken my children on play dates or just took them for a couple of hours, cleaned my house, ran errands for us and cooked us meals, amongst so many other things. We are truly grateful! The list could go on and on.

God is Bigger!
Jessie

Surgery Scheduled and Real Conversations

Surgery Scheduled:

Since my last post, I made the decision, with lots of prayer and thoughtful consideration, to have surgery and not have a transplant at this time. I go in this Thursday (4/30) morning to have 1/3 of my pancreas removed, along with some lymph nodes and my spleen. My time in the hospital will be about 4 days or so, depending how it all goes. While the Dr. is doing the surgery he will also take a biopsy of some of the tumors treated in my liver to see how they truly did with the last embolization treatment. I will have another PET/CT scan at the beginning of June to see how things are looking.

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A Real Conversation with my Oncologist:

A couple of weeks ago I had called my oncologist to discuss my upcoming PET/CT Scan with him. During the phone call he mentioned that after I had the surgery I might be able to join a clinical study to treat my tumors. Instantly this conversation threw me for a loop and I was completely confused. I was under the impression that my surgery and previous radiation treatments would make me considered "cancer free" for the time being. No one had actually said those words to me when discussing my treatments but that's what I just assumed. He informed me that although my last PET scan showed the tumors in my liver are dead. He said I still have cancer that's not showing up on the scans. He said no matter what treatments and surgeries I do I will always have cancer. He said that the next year will determine how aggressive my cancer is and the treatments necessary. He informed us that my liver can only handle one more round of radiation (one treatment on the left side and one treatment on the right side of my liver). He said we may need to revisit the idea of a transplant depending how things go. He's confident that when he does a MRI it will show cancer in places the PET/CT scan doesn't show. He also said that my cancer has also more than likely spread to other areas in my body and that if I did end up doing a transplant that the immunosuppressants I would be on would cause it to spread more. He said the tumors will continue to come back and grow and eventually get to a point where they can't control or treat them. This was a very real and honest conversation. I have to say I love my oncologist and although our conversations aren't always fun. I appreciate his honesty with me when I ask him questions. He's very kind and easy to talk to. This means a great deal to Josh and I.

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I continue to pray for God's healing and lots of time. I've been having more good days than bad, but I know that will flip with this up coming surgery, but hopefully only for a while. We continue to receive lots of love and support and are so very appreciative of it.

This next year will tell us a lot about my cancer, but I know God is big and He still heals!

Isaiah 53:5 (NIV)

⁵ But he was pierced for our transgressions,
    he was crushed for our iniquities;
the punishment that brought us peace was on him,
    and by his wounds we are healed.

Decisions Made ?????

People keep asking me "are you going to update your blog?" and the truth is... I've been procrastinating.... for a while.

My last radioembolization treatment went great. I was not sick afterwards like I was the first time which was wonderful! I've also had a pet scan since then that revealed all the tumors in my liver are dead from the treatment. My Dr. referred to this as a Miracle. There were no new tumors and the ones in my lymph nodes and pancreas haven't changed.

I thought my decision was made, but I'm struggling to commit to it. In my last post I said I was doing the transplant, but since then one of my doctors has talked to me several times about waiting and watching. This Dr. has also brought my case to other Drs. who also agree I should wait on the transplant, due to my age, possible complications that can come with a transplant, and life expectancy statistics that come with a multi visceral transplant. My options haven't changed. This option is just being brought up more and more, which has just confused me more about what is the best decision.

Option One:
Wait and Watch
In this option I would have the tail of my pancreas, where the main tumor is, removed, along with the lymph nodes with tumors. I would then just get scans every few months to look for possible new tumors or changes. Hopefully there would be none.

Benefits: This would not be as hard on my body as a transplant. I would have a shorter recovery time. The surgery is far less risky than a transplant.

Risks: waiting and watching; if it shows up again (they said I could have microbial tumors they can't see and might not make their appearance for up to years from now.) or spreads to any other organs I can never have a transplant if I got to a point where I needed one. I could still need a transplant at some point even if I go this route.

This option offers low risks up front but possible high risk down the road.

Option Two:
Transplant
With this option I would have my liver and pancreas transplanted and the lymph nodes removed. I would get scans with this every 6 months to a year to see if any cancer has returned. As I've said in my previous posts, they would have a liver, pancreas, stomach and intestine ready for me in the surgery in case they found anything else while they're operating. They would also remove my appendix to avoid any possible intestinal surgeries in the future.

Benefits: This option would be the best option to get any cancer they are aware of out.

Risks: There are major risks with a multi-visceral transplant, life risks during surgery or recovery, infections and lifestyle changes post transplant. I would be on an immunosuppressant for the rest of my life, which puts me at a higher risk for other types of cancer and the cancer returning. The recovery time for this would be 4-6 weeks in the hospital along with needing 24hr care post transplant for 2-4 weeks. A lot of people do fine with a transplant and I need to stay positive if this is my choice that I will be fine too. Its just scary to think of all the not so positive things that can happen.

This option has high risk up front, but could be good for me in the long run as long as everything goes smoothly.

All the Doctors are telling me its my choice and there is no right or wrong decision, but they each have their opinion as to which would meet my current need the best. They also still can't tell me what my prognosis would be with either option. I plan on going on the transplant list either way. I've completed all my transplant work ups. I will also have a consult with a surgeon to discuss the non transplant option. Josh and I are praying about both options. One option isn't necessarily better than the other. There are risks and benefits to both. I just need to decide. That is my prayer request, that I can make a decision and go with it. I need to decide quickly as I'll be on the list in a couple of weeks and I was told after that I would get the call quickly saying they have organs for me, like within a few weeks of being on the list, so I need to know what I'm going to do. Once I make the decision I need to trust the Lord is going to take care of the decision that's been made and that its all in His hands. He only wants the best for me!
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Decisions Made

Hey all, I hope everyone enjoyed their Christmas and New Years. I spent Christmas at Disney with Josh and the girls and rang in the new year with family and friends. We had a great weather and a great time!

                                                                Josh and Peyton

me and Parker

This past Monday I met with my main Dr in Indianapolis and had further discussion about my options. Basically he talked about four options that span from just radiation in my liver and cutting out my tumor in my pancreas to the other spectrum of transplanting my liver, pancreas and removing my spleen. We went into depth over all these options. He told me how he presented my case to other Drs. to get their opinions. It was a very emotional appointment where I shared with him that I just wanted the decision made already and that I hated that I even had to make this choice. I asked him what was the best choice, ultimately to live longest, where as he replied, with a transplant. How much and what to transplant would be up to the transplant team. He shared that if I just did radiation and remove the part of my pancreas that holds the main tumor that I would live around 8 years. I was told that if I was given the option of transplant that I should take them up on it because not all people get that option. Most are given the other option. 8 years doesn't seem nearly long enough to me. By the time the appointment ended I had decided on transplant. Transplant would be done with the intent to cure but there's no guarantee. If it works I could still possibly live decades. This choice comes with its own risks though. Not all people make it out and with having two organs transplanted at once runs a higher risk of dying during surgery, around 10% or so, but this percentage is not exact. Its really a choice of early risk with the surgery but longer life span in the end, or little risk with the other surgery option, but a shorter life span. With my choice I'm trusting the Lord is in control no matter what the outcome. My next steps are to get my prep work done (more Drs. appts) in the next 2-3 weeks so I can officially get on the list. I will meet with this Dr and my Oncologist a month after my radiation to further discuss my transplant plan.

I will also be doing a second round of radiation (radioembolization) this Friday. It will be an outpatient procedure. I will go home in the evening. If it goes the same as last time I plan on being sick for about a week from it. I'm praying though it will be different this time.

Thank you to everyone who continues to reach out to us, pray for us, those who bring us meals, and those who have been so generous with their time. We can't thank you all enough. I know we've received cards, letters and gifts and I haven't always thanked everyone personally but please know we are truly grateful and we feel God's love through each one of you. We also have enjoyed receiving all the encouraging comments through this blog and social media that you leave us.

Prayer requests:
-For my radiation that it goes well and that I don't get sick like last time.
-For the decision we've come to, that it goes well and all future prep for it and surgery goes well and that I get the organs at the right time God has for me, and for the family donating these organs when the time comes.
-For Josh, the girls, my family and friends while I go through this, because truth be told we are all going through this one way or another.
-For more energy. Each day I feel different sometimes okay and sometimes not. This leaves a lot on Josh's plate and I know he is feeling extremely stressed from having to work all day and then come home and also manage our finances, the cooking, cleaning and taking care of the girls and me. I want to be more helpful. We have help but I know its still hard on him.

All my love, Jessie