As mentioned on my Twitter updates last week we had some significant events happen. The first was that we were finally approved for Medicaid. The approval came with a retro date of November 1st so that means the majority of my radiation treatments will be covered. That was our largest bill to date weighing in at around $20k after the discount so you can imagine how happy we were to finally get approved after 4 denials.
The other thing the approval for Medicaid did was allow us to see another Oncologist for a second opinion. The reason for the second opinion was to determine whether to have surgery or not. The issue that we were having with surgery was that our Oncologist wasn’t sure if it was necessary. He wanted it to be a joint decision with the surgeons. When we went to talk with the surgeons they just wanted to do surgery, no questions asked. As you can imagine this made us a little uncomfortable.
A New Doctor
Now that we had insurance we went back to the original Oncologist that originally diagnosed me. After explaining to him the issue that we had with the other Oncologist and surgeon he asked me about the details of the treatment that I already received. I explained to him the 6 weeks of radiation with the first and last weeks having 5 days of 5FU and 1 day Cisplatin.
At that point the new Oncologist explained that decision to have surgery or not actually happens before treatment is administered and that there were two types of treatment that were available – definitive and neo-adjuvant. He explained that definitive was chemo and radiation without surgery and that neo-adjuvant was chemo and radiation with surgery. He then looked at me and said that I had been given definitive treatment and that surgery was not apart of the treatment plan.
I almost started crying right there in the exam room.
I had been hoping and praying that I would not need the surgery as it was a pretty big deal and would double the time for recovery. Needless to say both the wife and I were and are extremely happy with the treatment that I received especially since it means that I do not need surgery.
Where to From Here?
From this point on I will be having a couple of tests at the end of this month and the beginning of next month to confirm that the treatment did what it was supposed to do. The first set of tests will be a PET/CT scan and a CAT scan. If everything looks good there I will have another Endoscopy (peak down my throat) for a visual inspection and possible biopsy. When that comes back clean then I am cancer free as far as they can tell and just get regular checkups.
Other Items
In the mean time I am also going to be treated for a couple of other items as well. The first is the anemia that got me in the hospital and diagnosed in the first place. My hemoglobin’s are still lower then they should be so I am going to be infused for two days with iron at the end of this week. The other item is that my Testosterone is low as well so they are going to give me a shot every two weeks until that looks better.
How Do I Feel?
For the most part I feel great. I eat better then I have for 6+ months and have no swallowing issues at all. The biggest issue that I face right now is fatigue. I sleep 10-12 hours a night and sometimes take naps during the day but still feel tired almost all the time. Right now I would say I am at about 60% of my normal energy level. By treating the anemia and the Testosterone I think I will get back to 75-80% of my normal energy level. The remaining lack of energy is from the chemo and radiation and the only thing that can fix that is time. The doc thinks that could take 3-6 months. We will just have to see.
The Next Steps – Where Do We Go From Here?
The other thing the approval for Medicaid did was allow us to see another Oncologist for a second opinion. The reason for the second opinion was to determine whether to have surgery or not. The issue that we were having with surgery was that our Oncologist wasn’t sure if it was necessary. He wanted it to be a joint decision with the surgeons. When we went to talk with the surgeons they just wanted to do surgery, no questions asked. As you can imagine this made us a little uncomfortable.
A New Doctor
Now that we had insurance we went back to the original Oncologist that originally diagnosed me. After explaining to him the issue that we had with the other Oncologist and surgeon he asked me about the details of the treatment that I already received. I explained to him the 6 weeks of radiation with the first and last weeks having 5 days of 5FU and 1 day Cisplatin.
At that point the new Oncologist explained that decision to have surgery or not actually happens before treatment is administered and that there were two types of treatment that were available – definitive and neo-adjuvant. He explained that definitive was chemo and radiation without surgery and that neo-adjuvant was chemo and radiation with surgery. He then looked at me and said that I had been given definitive treatment and that surgery was not apart of the treatment plan.
I almost started crying right there in the exam room.
I had been hoping and praying that I would not need the surgery as it was a pretty big deal and would double the time for recovery. Needless to say both the wife and I were and are extremely happy with the treatment that I received especially since it means that I do not need surgery.
Where to From Here?
From this point on I will be having a couple of tests at the end of this month and the beginning of next month to confirm that the treatment did what it was supposed to do. The first set of tests will be a PET/CT scan and a CAT scan. If everything looks good there I will have another Endoscopy (peak down my throat) for a visual inspection and possible biopsy. When that comes back clean then I am cancer free as far as they can tell and just get regular checkups.
Other Items
In the mean time I am also going to be treated for a couple of other items as well. The first is the anemia that got me in the hospital and diagnosed in the first place. My hemoglobin’s are still lower then they should be so I am going to be infused for two days with iron at the end of this week. The other item is that my Testosterone is low as well so they are going to give me a shot every two weeks until that looks better.
How Do I Feel?
For the most part I feel great. I eat better then I have for 6+ months and have no swallowing issues at all. The biggest issue that I face right now is fatigue. I sleep 10-12 hours a night and sometimes take naps during the day but still feel tired almost all the time. Right now I would say I am at about 60% of my normal energy level. By treating the anemia and the Testosterone I think I will get back to 75-80% of my normal energy level. The remaining lack of energy is from the chemo and radiation and the only thing that can fix that is time. The doc thinks that could take 3-6 months. We will just have to see.
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