I am sure most have already been filled in on the latest in the DeCoster saga. I didn't write about the last Dr. apt for a while for personal reasons that I will share at the end. Then I had every intention on recapping but I just got busy and tired.
We went back the pulmonary specialist a week after the last biopsy which showed no new information. They took another X-Ray and the doctor said he felt like the nodule and inflammation was lessening. Given that all the tests were still coming up negative and that the spots were not growing he was finally ruling out cancer. He said he was going to call it some sort of weird pneumonia and to come back in two months. He did not offer any kind of treatment at this time except to just wait it out till the next appt and see if there was any improvement. This conversation took all of 5 minutes and we left just kind of dumb founded(or at least I was).
I struggled driving to pick up the kiddos from church/school with too many emotions to really pin down. Part of me struggled with guilt. I should be jumping up and down and shouting from the roof tops that cancer didn't seem to be part of our lives as it looked like it was to be. From what I could collect from my emotions I really think the stress of the last 2 months came flooding in a wave. Driving home on I-44 is always a good place to have a flood of emotion. I hadn't had a choice but to keep going and not dwell on the what ifs or the reality of what might be taking place.
I struggled with the mix of gratitude of Roger not having cancer and the frustration that he still had a terrible cough and had no energy. If you know Roger he is one that normally has the energy and drive to do anything. I didn't understand that after everything there was no REAL diagnosis therefore no treatment or promise of relief.
These are the reasons that I was not ready to really share the update. Inward confusion and lack of faith, hope and trust. Those are three things that if you are without every situation can look very grim and hopeless.
After hashing some of these emotions out with Roger and working through them the next few days the faith and the hope and the trust started to return. I ordered some of the specific oils for pneumonia and basically anything wrong with your lungs and airways might help with. So we are going that route until the next appt to see if there will be any changes.
The reassurance that cancer is not the culprit continues to sober me. The thought that we could be doing chemo right now is a big reality check. Grateful does not even begin to describe that emotion. I am thankful for the stress that this has lifted off of Roger.....ok and me.
Thank you friends, family and loved ones. Thank you for your support, prayers and encouragement. I know our storm of the past few months is so small compared to what others have and are going through. Our God is close to the brokenhearted. For that I am thankful. The DeCoster's are ok. We are more than ok. We have hope in the future. That hope is not based on a healthy lung or normal airways. Trying not to sounds to cliché.... It is the foundation that is our God. He is big no matter what happens in our tiny little lives. We are looking forward to the next appt to see how God is going to tie this thing up.
Stephanie
Tuesday, September 30, 2014
Thursday, September 11, 2014
Unexpected Blessing
As most know(especially if you are reading this blog), the past 2 months have been some of the longest months of our lives. I realize I have lived a pretty cushioned life so far but it is what it is. The blog is to share the good that is in our lives right now. We think we can plan and we sometimes think we can control....and God chuckles.
My friend, Mindy came to the hospital during Roger's second procedure to sit with me. We were talking about the typical topics : kids, how I was handling, crazy hormones of being a girl in general. I heard these words come out of my silly big mouth...."oh my goodness I am so glad I am not pregnant..I couldn't handle it right now." Granted it was a hard week. Emma started kindergarten and hubby might have cancer so give me a break I was being honest. HAHA.
One week later.... "why are my clothes not fitting...I need to cut out that sugar." "oh man I do not feel good.... but oh my goodness I need a hamburger like right now." "Why am I crying in Frozen....I have only seen this movie 50 times." oops
Yep! Baby number 4 is on the way! We were shocked, excited, happy, nervous and basically any other emotion ya throw out there we were. I go next week for an ultrasound but so far everything looks good and we are 9-10 weeks along. I love the idea of four kids. I am counting on the rumor I hear that 4 is no harder than 3. It was obviously not our timing with Roger's health issues but that is what makes it so exciting. And have you seen my kids.... I think they are pretty cute and as different as all get out.
I had to share the news publically because I'm pretty sure Emma's school is well informed thanks to her over excitement and once she enters the church building it might as well be in the bulletin. And because I'm pretty sure I'm going to have to bust out maternity clothes before to long. So that's where we are! We like things crazy I suppose.
My friend, Mindy came to the hospital during Roger's second procedure to sit with me. We were talking about the typical topics : kids, how I was handling, crazy hormones of being a girl in general. I heard these words come out of my silly big mouth...."oh my goodness I am so glad I am not pregnant..I couldn't handle it right now." Granted it was a hard week. Emma started kindergarten and hubby might have cancer so give me a break I was being honest. HAHA.
One week later.... "why are my clothes not fitting...I need to cut out that sugar." "oh man I do not feel good.... but oh my goodness I need a hamburger like right now." "Why am I crying in Frozen....I have only seen this movie 50 times." oops
Yep! Baby number 4 is on the way! We were shocked, excited, happy, nervous and basically any other emotion ya throw out there we were. I go next week for an ultrasound but so far everything looks good and we are 9-10 weeks along. I love the idea of four kids. I am counting on the rumor I hear that 4 is no harder than 3. It was obviously not our timing with Roger's health issues but that is what makes it so exciting. And have you seen my kids.... I think they are pretty cute and as different as all get out.
I had to share the news publically because I'm pretty sure Emma's school is well informed thanks to her over excitement and once she enters the church building it might as well be in the bulletin. And because I'm pretty sure I'm going to have to bust out maternity clothes before to long. So that's where we are! We like things crazy I suppose.
Roger Update#??
I have to go back and read where I left off on the blog concerning Roger's lung and procedures. Sometimes during the week it is just easier to post a quick update on facebook from my phone. It seems we are always waiting for just a little more information or test results so I want to wait to make sure I can update the blog with the most information at one time. To keep a long story short... we are still waiting. The results from the last procedure were again inconclusive. Below is more detail of the past few weeks that you are more than welcome to read if you have time (but it might have been more for myself to actually write down the journey).
Past month recap since the 2nd procedure (needle biopsy)
After the results of the needle biopsy were inconclusive they did another catscan and found that the mass had broken into two. The doctor was still concerned with the lymphnodes being enlarged and inflamed but we were encouraged non the less. Roger consulted with a lung/heart surgeon to see if he thought surgery was needed to further examine what is going on. The doctor had put together a team of 9 highly esteemed doctors,surgeons, oncologist and physicians to go over Rogers case. This was very encouraging to have so many "smart eyes and brains" looking at Roger. However, they all seemed to be stumped at how this wasn't making sense. They told Roger it appeared to be lymphoma or sarcoidosis. Sarcoidosis would be the much better option but the tests done so far had not leaned that way. So we headed out of town on vacation to try to get away all the while trying to not let the word lymphoma have any hold on us.
The following week a new pulmonary specialist conducted another procedure where they inserted a tiny ultrasound device down his throat into his airways to look and biopsy the lymph nodes. Basically they poked a needle through his airways into 18 lymph nodes 7 times each. They also took samples from the upper lobe of the left lung. They got PLENTY of samples. They put Roger completely under for this procedure. Recovery was a little more rough this go around for him. He is still coughing heavily and just overall miserable.
This brings us to this past week where we found ourselves waiting once again (however, more hopeful all the poking would bring some sort of answer). The doctor who performed the procedure contacted Roger and was a little stunned to say that everything they tested for came back inconclusive. So here we are again. The lovely word that on one hand gives relief because they haven't found cancer for sure and on the other hand is the worst word ever. The doctor is meeting with the other pulmonary specialist to see what should happen next and to try to grasp what is going on. They won't rule anything out on paper because they haven't found the cause. It makes sense to Roger more than it does to me.
Amazingly, we are ok. Well, Roger is just tired..... I don't blame him. He doesn't complain. He works hard at his job when he is not getting poked. He handles it better than I would. I am praying and asking prayer for wisdom. The options that I feel are coming are not ones that sound good to me given the success rate of the procedures so far. We are thankful for all the prayers and encouragement from people spread across the Arklatex and possibly farther. We do not take them for granted. As always I will update as we learn more. Fear is not an option for me at the moment and I know it will all work together in the end. So for now we take one day at a time and are becoming pros at waiting. What a hard thing but a blessed thing to learn.
Past month recap since the 2nd procedure (needle biopsy)
After the results of the needle biopsy were inconclusive they did another catscan and found that the mass had broken into two. The doctor was still concerned with the lymphnodes being enlarged and inflamed but we were encouraged non the less. Roger consulted with a lung/heart surgeon to see if he thought surgery was needed to further examine what is going on. The doctor had put together a team of 9 highly esteemed doctors,surgeons, oncologist and physicians to go over Rogers case. This was very encouraging to have so many "smart eyes and brains" looking at Roger. However, they all seemed to be stumped at how this wasn't making sense. They told Roger it appeared to be lymphoma or sarcoidosis. Sarcoidosis would be the much better option but the tests done so far had not leaned that way. So we headed out of town on vacation to try to get away all the while trying to not let the word lymphoma have any hold on us.
The following week a new pulmonary specialist conducted another procedure where they inserted a tiny ultrasound device down his throat into his airways to look and biopsy the lymph nodes. Basically they poked a needle through his airways into 18 lymph nodes 7 times each. They also took samples from the upper lobe of the left lung. They got PLENTY of samples. They put Roger completely under for this procedure. Recovery was a little more rough this go around for him. He is still coughing heavily and just overall miserable.
This brings us to this past week where we found ourselves waiting once again (however, more hopeful all the poking would bring some sort of answer). The doctor who performed the procedure contacted Roger and was a little stunned to say that everything they tested for came back inconclusive. So here we are again. The lovely word that on one hand gives relief because they haven't found cancer for sure and on the other hand is the worst word ever. The doctor is meeting with the other pulmonary specialist to see what should happen next and to try to grasp what is going on. They won't rule anything out on paper because they haven't found the cause. It makes sense to Roger more than it does to me.
Amazingly, we are ok. Well, Roger is just tired..... I don't blame him. He doesn't complain. He works hard at his job when he is not getting poked. He handles it better than I would. I am praying and asking prayer for wisdom. The options that I feel are coming are not ones that sound good to me given the success rate of the procedures so far. We are thankful for all the prayers and encouragement from people spread across the Arklatex and possibly farther. We do not take them for granted. As always I will update as we learn more. Fear is not an option for me at the moment and I know it will all work together in the end. So for now we take one day at a time and are becoming pros at waiting. What a hard thing but a blessed thing to learn.
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