These are updates from Janelle as she found out information. We will continue to keep you all updated as she starts the next step in her treatment with chemo and radiation. Thank you for your continuous love, support, and prayers on her behalf.
September 7, 2013
We have some many sweet family and friends who have been following our story and so we just wanted to give you all an update of where we are now.
To give you a background of how this all started, in May I developed a chronic cough. Being a healthy, 26 year old, of course no doctor ever suspected cancer. For months we thought it was allergies, asthma, acid reflux, and pneumonia. We tried lots of prescriptions and remedies with no success. Finally about 3 weeks ago on Tuesday night, I started coughing up blood. We went to the ER where they did a CT scan on my chest and saw a whole bunch of junk in my right lung.
After meeting with a pulmonary specialist, he suspected that it was a tumor in my lung and performed a biopsy on it. The biopsy came back to show that it is a carcinoid tumor. We didn't think this was such bad news at first as carcinoid tumors don't usually spread, so we met with a surgeon to see about removing it. Our surgeon had a few suspicions about how my scan was looking and ordered a PET scan.
Unfortunately, this past week we learned from the PET scan that along with with right lung, all the lymph nodes in my chest, my thymus, and a lymph node in my neck appear to be cancerous. This has thrown all my doctors for a loop as these cancers just don't act this way. My doctor actually said that there are no documented cases that have acted as mine, I'm one of a kind.
The scary thing about this type of cancer is that it does not respond to chemo or radiation, so surgery is the best option for removing it. However, because it has appeared to spread, there are questions about whether or not it can all be removed with surgery. Because this is so unusual, my case will be presented at tumor board on Wed this week with all of the specialists. Unless something drastically changes, we are planning on surgery on Sept 17. The plan right now for the surgery is to remove everything possible with cancer, including my entire right lung. The surgery can take up to 10 hours, depending on what they find when they get in there.
A lot of people have asked how this happened and unfortunately we just don't know. I do not have a single person in my family who has had cancer, I've never smoked, and they can't link this to genetics. We've had to just accept that this is where we are and not ask why.
We have had a lot of scary appointments lately with ifs, possibilities, risks, complications, best case, worst case, statistics, mortality rates. To say the least it has been overwhelming. I am grateful for the wonderful support my sweet husband has been and that my parents have been able to be here for most of these appointments.
Our best case is that they get in there and discover that the lymph nodes aren't really cancerous, but just inflamed from infection. The worst case is that they discover it is an untreatable type of cancer- Big spectrum! We are praying for the best case.
We so appreciate all of the love and support we have gotten so far and continue to ask for your prayers.
September 19, 2013
As many of you know, I did not end up having the surgery to remove my lung this week. After my doctor presented my case at two different hospitals, the decision was to first go in and biopsy the lymph nodes in my chest to really understand what we are dealing with.
So on Tuesday morning we went in to the hospital. The doctor made an incision at the base of my neck and went down into my chest and removed several of the concerning lymph nodes for further testing. After a few hours in recovery, I was able to return home.
One of the possible complications of this surgery was damage to my vocal nerve, which seems to have happened. So now I just have a soft whispery voice, but it's something that we can fix down the road.
Today my wonderful doctor called and told me that all of the lymph nodes are negative of cancer!!!! I can't even explain how much of a miracle this is. When every test, scan, radiologist, and oncologist said differently, I know that Heavenly Father stepped in to heal me.
We know that all of our family and friends of all faiths have been praying and fasting for us. I just know that a blessing like this would not have been possible without the faith of so many and the power of the priesthood. I know that I don't always have the energy to respond to every comment, message, or text, but please know that we are just so grateful to everyone.
The surgery to remove my lung and the tumor will now happen on Monday. I just can't wait to get this thing out of me. I will probably be in the hospital for 5 days.
While this journey has been a roller coaster, it is amazing to see the hand of The Lord in our lives and feel his love.
October 3, 2013
Well we've made it through the first week. As far as surgery goes, it went well. The surgeon was able to keep my top lobe on the right lung and had to remove the 2 bottom lobes.
All of the nurses and doctors told me that this is the most painful surgery they do in the hospital, even worse than open heart surgery, and I definitely believe them. There was one night in particular that I honestly didn't think I could make it through.
With lots of praying and support from family and nurses we made it through those days.
The only down side of the surgery is that they found 3 lymph nodes near the tumor that are positive for cancer (something I wasn't expecting and took a toll on all of us emotionally).
So for the next few weeks the focus is recovery and then will be looking to see if further treatment like chemotherapy is needed. We pray this is not the case and ask for your continual prayers.
We love The Lord and and are grateful our blessings.
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