Clarification about my posting in the coming weeks....

My blog is a lot about what I feel personally that I generally can’t express in person. A lot of random thoughts that I can organize and display in proper format. A lot of revisions and 2nd  thoughts so what you may have read originally, I may have edited again for a better clarity.  My blog and writing, as terrible as it is, is my meditation. My chance to set my thoughts straight and calm my mind in a very public setting.

Why am I writing about such personal things?

Not to garner sympathy or a Go Fund Me page. While I appreciate the thoughts and prayers and even the unsolicited advice, this is about educating myself about making things better for healthcare and patients as an active participant in the system. An insiders point of view. An active observer. My perceptions are my own colored with my idealism regarding medical care. What I hope to see, how I am disappointed or elated at what I end up with.

Here is what I know for sure...don’t get sick at the end of the year. It’s like a fire sale with folks meeting their deductible and cashing in on all the elective tests and procedures they can. I also am guilty of this putting off tests and exams until after our deductible was met and sadly I met that rather early this year and will again this upcoming year. Like you have any control at all over this.

The reality is that things don’t hurt as bad as I thought they might. I always look to the hours post procedure to get through the present situation that I dread. Once the IV is in, the part I hate the worst, I know that some nice CRNA is going to give me a little happy medicine and I will wake on the other side and deal with the aftermath at that time. I rarely take pain meds for more than the first day post op. I just don’t need it but I am unique in that manner. I am a light weight regarding meds and very little puts me way out. I am fortunate in that regard.

The guilt. How do you interpret what medicine asks or says to you without taking it as an accusation of blame? I struggle with this. Yes, I have smoked in the past and enjoy and occasional cigar. Am I paying for my transgressions? It’s an easy jump, easier than you can imagine. I am not going there, I can’t. It’s not fair but what is fair these days?

I will express my frustrations, pray for patience and carry on no matter what is coming knowing I have seen patients endure much worse but, always will wonder why?  I think maybe it’s more important to pray for acceptance for what comes. I know a few folks that have lived with my condition for years, quietly, unnoticed, doing well. It does not define them nor will it me. But I will talk about it if asked because it’s the way to help others.

Yes I am still cooking.

This Year’s Birthday Gift....

...was a CT scan. Sadly I have been passing blood in my urine sporadically for a few weeks and had to have it checked out. The CT showed areas of concern and was followed by a cystoscope in a urology office. That also showed a need for further investigation.

I work in medicine and have my whole career. Navigating the system is a nightmare despite claims of  “Extraordinary Care”, no one really gives a crap about you personally unless it’s about payment. Your urgency is not their urgency and you are liable to be speaking to people who have little medical knowledge and are clueless about your plight. I have met some really nice, but aloof, co-workers as well as some folks that probably should not have a job greeting people. I understand now that the public applies these ideas about’Extraordinary Care’ to the whole process from the cleaning team to the physician. In reality, the person that answers the phone at your physician’s office is unfairly lumped into this so any break in the link of this chain affects the system as a whole and shades your perceptions.

I have discovered that it all moves at a glacier pace taking weeks to get things done where it could be days. Labs that don’t post to EPIC, reports that never reach the primary physician. I have gone and retrieved labs after signing releases then faxed my own results to those who need to see them. There are parts of the system that are really nonsensical. Despite this, I have had some fantastic preop  and post op nurses and great CRNAs that were reassuring and lovely. People actually involved in your care are great not unlike the nurses And tech professionals I work or am acquainted with everyday. Despite their schedule or late hour, they are always pleasant and seem to go out of their way to accommodate.

The process of diagnosis is painstakingly slow. You would think scans and testing would be done before consults so a discussion could be had but in reality everything seems to happen in reverse order. It takes weeks to get a visit and then another week to have the exam and then another to get a follow up for discussion. It’s really frustrating and I know how to press things a bit. What about a regular old civilian? My Lord, what do they go through? I am not sure why the progression is so linear seeming unable to veer from some disposed path.

After the CT, I had an ultrasound to clarify the results. A $4000 scan whose results need clarifying? Makes no sense at all. So the ultrasound ruled out kidney cancer which turned out to be a cyst but shed no real light on my congenital ureter defect and where, what is now considered cancer, in my mind, is located. Ureteral cancer is bad. Very bad. Losing a kidney and bladder bad.

Now onto the biopsy. Another week goes by after the consult visit to the biopsy. While I am under, the urologist slips a stent in my right ureter that curls up in my kidney and ends in a pigtail in my bladder. Probably the most irritating implant known to man. I feel a constant vague fullness and “sticking” sensation 24 hours a day and the urgency to void makes me dash to the toilet no matter what. The very act of voiding now sets off peristaltic waves that make need to hold on the walls for support, the pain is so intense. Then it passes till the next urge. The good news is, the ureter is clean, no cancer there.

I am diagnosed with a congenital condition, Hutch diverticula, which is close to my right ureter (the tube that delivers urine from the kidney to the bladder). The stent prevents the ureter from shutting down since he removed a tumor close to its location in the diverticula.  I will now pass a lot of bright red blood for the following weeks until the next phase of treatment. That depends on the pathology results.

The pathology news is devastating. While the cancer did not invade the muscular wall of the bladder, it happens to be a sarcoma type cancer known to be aggressive and resistant to chemo. My urologist calls to deliver news neither of us expected. I will likely lose my bladder so as not to ‘seed’ cancer cells into my belly if he were to open the bladder in situ. My surgeon heads out of town. A follow up in a few weeks. What?  So now it’s waiting, thinking, crying and praying. Life without my bladder will be like...what? Part of my next visit is to meet with the oncologist also. Is this the primary site? Has it spread? My chest X-ray was clear, what does that even mean? The ultrasound showed normal abdominal organs. Ok, but am I clear?

More to follow....

A Tuesday Nosh as a Meal

Another Tuesday night and we have had our share of salmon lately. I still have a few bags of shrimp in the freezer as well as bread dough rising in the fridge that has to be baked tonight. Not wanting a lot of pasta or rice carbs I opted for a snack approach to dinner. Light yet satisfying. A French loaf, spicy Bloody Mary shrimps and a cheese assortment. A nice dipping oil for the warm, fresh bread and we are in business. Brenda worked late Tuesday and the bread was just crusting up when she walked in the door. The recipe for the shrimp  here:

Divine Inspirations...food for the heart and soul: Bloody Mary Shrimps