I am sure as everyone can guess I have spent the better part of this week trying to get everything in order to be able to do the Weisenthal protocol that was recommended specifically for Jody. Before I did that though we had a telehealth appt with our family dr. to try to get the prescriptions that Care Oncology uses. As usual I was met with zero resistance from her and only a person that seems to feel the same as me "if it doesn't hurt, why not try it". Three of the four prescriptions I was able to pick up for 20.00 a month. The fourth is 500.00 a pill we found out. This is for a pill that has been on the market for 50 years and was 3.00 a pill up until a few years ago. A few years back Johns Hopkins stumbled across the fact that this little pill that we have been using for half a century to get rid of pinworms may have cancer curing properties. Shortly thereafter it was bought by big pharma and shot up to 500.00 a pill and is not covered by ins except for six pills a month. We are looking to take the prescription and have it filled mail order out of the country. Quite insane that we will have to do this. This was all Monday morning before 11am.
I then spent the rest of my day desperately trying to find a local oncologist that would administer the chemos Jody needs. With the regimen that has been recommended two of the chemos are approved by the FDA for breast cancer treatment and one is approved for lung cancer. Because they are approved for cancer treatment but, not Jodys cancer they are considered “off label”. Now we know that these are the only three chemos that have shown success in a lab on Jody’s specific tissue and at this point these are the last of the line for us. However, because they are “off label” there are few oncologist that want to do this. We know there is one in Boca Raton and one in New York City. If we have to go to Boca Raton the regimen is calling for three days a week, three weeks on, and two weeks off for six months. On top of this astronomical expense we will have in hotels we will definitely have to get a newer more reliable car to make this trip so often. We know my 14 year old car is not up to this trip weekly. We have stashed a little away in savings that we will put towards the car. The next hurdle is the chemos. Again, because these are “off label” just as the pills Jody needed we will have to pay cash for them. I believe two of them we will be able to get filled for fairly inexpensive but, the third chemo is 1675.00 each week that he will need. Another one we will have to get filled from mail order out of the country. Even doing it this way we are still looking at at least 500.00 a round for chemo. I have no doubt that we will easily be upwards of 20-30,000.00 for the six months of treatment.
On top of being devastated watching the man I love in constant pain and still trying to be strong for me I am sad and angry to see the fight we are going through to get the treatment he needs. Jody has worked his entire adult life. He has had a job since he was 16 years old. We pay a decent amount every month to have his health insurance. To find out when he needs it the most he can’t get the treatment he needs without hitting brick wall after brick wall. We are at a time in our life that we should be starting to enjoy the fruits of our labors. Instead after working a second job through most of our marriage and going back to school fulltime for his doctorate when we hit this point in our lives of kids being gone and time to enjoy with each other we can barely afford to get to the places for his treatment because we also have to pay an astronomical cost for the meds and chemos he needs. We should not be doing this.
I have something to ask of everyone reading this. Look up a different cancer each month for cancer awareness every month of the next year. Pick a cancer that you don’t know much about and if you are on social media post something about it. If you are not on social media tell somebody about it. Part of the reason we have to jump through so many hoops is because Jodys cancer is extremely underfunded and there is not enough research and testing. Last month was “Breast Cancer Awareness” month. I think this awesome that we have brought so much awareness to breast cancer that we now have so many more treatments and we are finding it earlier (because of all the research). Did you know last month was also liver cancer awareness month and the month before that was childhood cancer awareness month (extremely underfunded)? The more we bring awareness to all cancers the more we will see research happen and treatments approved. Treatments that we won’t have to travel 7 hours every week and stay in hotels for but, be able to use a local oncologist. Treatments that our insurance will pay for. We should not have to worry about how we are going to pay for Jodys treatment and if we can afford to get it. My husband should not be concerned that if he gets treatment will I be ok financially because we paid for his treatment, if something happens to him after he has worked so hard to make sure his family would be ok. Many times these are not decisions that can wait for savings to build up. We know that if we do not move on this now we will not have the option to do it later. His cancer is progressing. We have been told that he probably will not make it the year without a treatment. These are words no family should ever have to hear. Especially when we know there is a treatment out there that has already been tested and shows that it killed a significant amount of cancer cells in the short time it was test on his tissue. It seems insane for an Oncologist to question whether or not to do the treatment if it is the only treatment option.