The Next Steps – Where Do We Go From Here?
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.
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- I Am Done with Chemo and Radiation! This morning I finished the last dose of chemo and...
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As if being diagnosed with cancer wasn’t a big enough shock there is another part to my story that delivered almost as big of a blow to my wife and I. See, I was laid off from my job back in January. As apart of being laid off I was offered Cobra which would have allowed me to continue my company-sponsored health insurance. I would have to pay the whole amount of the policy which was about $950/month. Being recently unemployed and unable to find a job I elected not to participate and we had kids covered under a local Medicaid program (funny, the kids qualified but Elsy and I did not).
to participate. Our monthly total for insurance would be around $350. It would still be tough to come up with that extra money every month but it would be worth it we thought. When we got the first bill to start the Cobra coverage it was $1250. See they wanted us to pay for the ~3 months of coverage that we never used. While $350/month would be tight, but possible, $1250 was unattainable after being unemployed for almost 4 months. We did not take the coverage.
In August I was offered and accepted a position with a new company. The pay was similar to what I made before at my previous company but because of the economy they could not offer benefits for 90 days. Fine I said. I like the company and was happy to have the offer after almost 8 months of being unemployed. I was already having symptoms of my condition but thought if I could just hold out for 3 months I could go see the doctor and get it take care of.
While at the hospital we applied for government help through Medicaid and some other local sources. We were denied for all of them. The reason? I now made too much money. Lovely. Another side effect from lack of insurance was that the cancer doctor who diagnosed me now would not treat me because I did not have insurance. They were nice enough though to refer me to a cancer center in Austin named Shivers that possibly would.
As part of the process of diagnosing and treating cancer my doctor order a PET/CT scan. This scan measure activity in the body which tells them whether the cancer has spread. Unfortunately Shivers does not have the equipment to do such a scan so they referred me to another medical facility. They were happy to do the ~$8000 scan with 20% down and a prearranged payment plan. Or if we want to pay up front we could get a 40% discount. We needed the money in 2 days and thus sold our paid-off van to cover the cost. The good news is that the scan showed that the cancer had not spread.