Well Merry Christmas everyone. I hope you all take a second to think about what is really important, I know kids won’t but it is there day so they do not have to. That will conclude the moral fiber portion of this blog post.
Today my son said “He always gets the best game system for Christmas” I love you daddy. That is when shit just hits like a ton of bricks. What happens now in the future if I can’t provide the best stuff for him. I mean video game systems do not matter at all but they mean everything to him. He doesn’t know anything is wrong yet. Until we know if the prognosis is decent we aren’t telling him.
This gives me yet another reason to fight though with all the waiting to find out how bad the situation actually is, whether there is a fight a not I am choosing to assume there is a fight coming. To keep the people I love safe I will wage a WAR against this disease. Today I quit smoking, it has nothing to do with my kind of cancer but its overall an inhibitor of my chances so it has to go. No more excuses. I have said this before but the stakes are higher now. Doesn’t mean there might not be stumbles but I have to do it.
Good luck me choosing the most stressful period of my life before I even know if there is much of a reason to quit. Goals however are goals.
We had our intake appointment with Dr Benevenia and his staff today. The intake staff was efficient and they gave me a pair of those 1970s basketball player shorts which turned out to be in a pediatric size. After rectifying the wardrobe malfunction and doing all the usual intake vitals the doctor came in.
The doctor seemed compassionate and delivered his words carefully. They did not have too much new information to add but confirmed likely a major leg surgery and radiation would likely be courses of treatment. They warned that the sciatic nerve is in danger but also noted that until they had the imaging they needed, nothing prognosis wise could be determined.
Blood work, Pet-CT Scan and an MRI were ordered and will now need to be authorized by my insurance company. The hope is I can get in for the testing sometime next week and the results early the following week. The Dr says he doesn’t believe 2 weeks will effect my prognosis much and that a treatment plan would be developed once the tests were complete.
It is frustrating to powerlessly wait for bureaucracy with regards to insurance companies and what is life saving procedure, as well as realizing that things will still be scheduled and move at a pace that is of course less then what I want as a patient. I do have to be understanding and simply go through the process of steps required to get my full staging and prognosis before I can even begin considering some of the more important decisions for my family.
In the meantime since no one knows yet, I will be skipping all the holiday events and such. When you all read this you will know why I wasn’t there. Did not want to bring anyone down during the holiday and want to stay in a positive mind set during this time.
Don’t forget to hug the ones you love. Happy Holidays and Merry Xmas,
So today the doctor who will be seeing me for a consultation had his staff reach out to confirm some details. They said they will need the slides. They tell me to contact the surgeon who tells me to contact the lab. The lab tells me to contact the doctor I am going to see so they can request the slides.
Since having the bombshell dropped on me and basically being kicked to the street by the original surgeon I know nothing of this, WTF are slides I try to figure out. Why am I the person who is supposed to find them?
This is going well. This is why all the websites advise that you need to be your own most avid advocate for your care because medical offices do not necessarily communicate seamlessly. Like everything else you are going to need to make a lot of calls and do your best to stay polite and not annoy those you need to help you. People in these fields seem (mostly) very compassionate.
I have printed the packets and see (Dr. Benevenia) at 8am tomorrow for the first time as a cancer patient. Its amazing how you can go from one day unworried about your mortality and the next day have an expiration date. I guess all we can do right now is wait to see what the doctor thinks tomorrow, what tests I will need etc.
So a week later I have no plan other then the one layed out for me by my referring doctor and the infinite wisdom of my insurance company. I am at least one step closer to starting to get a real handle on the severity of my condition now that the first surgeon performed a questionable act by not delaying my surgery due to the growth rate for a less invasive biopsy. Sigh. hindsight….
Hello Readers, Strangers, Friends, Adventurers, The Scared, The Bored & Family members and friends of these groups. Not intentionally leaving anyone out but I think you get the general picture. All of those who have found here are welcome here.
My name is Kevin. I am a 34 year old husband, a father of an 8 year old boy. I am a hard working entrepreneur and pragmatic dreamer. I own a small company with my life partner and (far) better half and grind out a modest living working 80 hour weeks like anyone else in possession of both the will or stupidity; and/or both in ample enough supply to think it would be easier to launch their own business then work a regular job.
Now to the million dollar question how long have I had cancer, I don’t really know. I had a lump I was told by the first doctor it was probably a muscle tear and that my leg was bad let me know if I was Derek Jeter that someone might do something about it.
I found an orthopedic surgeon in August when the lump started becoming painful and leaning on nerves. MRI looked good I was told. This was in September 2017. I asked if it was something I could put off a few months and was advised it wouldn’t likely matter. Surgery was scheduled for Dec 4th. During follow up appointment in November 2017 the Dr. pointed out that it was double the size of what it was on the MRI from a few months ago. He said he guessed he would go ahead with the surgery since it was a large mass that didn’t look cancerous but did acknowledge it was a possibility.
I found out 5 days ago based on a preliminary report and technically was diagnosed just yesterday. Someone finally found my pathology results which I assume were lost in space or time or some combination of both. I assume this not because I am some grousing and impatient person whose life view had just been altered but because the lab said they sent the results to my doctor Friday. This mated with the fact that important test results seem to still be sent by fax or morse code lead to some lost days and agita.
I have been diagnosed with a High Grade undifferentiated pleomorphic sarcoma.
Sarcoma is a rare cancer, so rare in fact that there are almost no doctors that are “Orthopedic oncologists” which are the only ones who have a specialty in this kind of cancer apparently. The office applied for and received a GAP EXCEPTION since there are no in network doctors who can treat me. My appointment is Friday.