I suppose it is time, perhaps past time for an update. There are times when I tend to even bore myself with some of these, I can only imagine how you must feel upon reading them. But this journal must persevere if it is to ever be of some sort of usefulness to another.
As you already know, I have pledged to tell it like it is and the truth is this: Over the past several months since the last radiation treatment… I have suffered. Now… I know that every individual in the world probably has their very own definition of suffering and no… I’m not being persecuted, starving… or living in a war zone, so yes… I completely understand that there are those who have suffered far greater and in many more ways than I could even imagine. But… health wise… I have indeed suffered.
Serious illness seems to never have any positive value whatsoever. Now, it is true that you may meet some kind and gentle people along the journey, those who are wandering their own yet similar pathways… and those who offer their caring hands and knowledge in their attempt to make your journey just a bit more tolerable. Beyond that… serious illness just plain sucks.
On Tuesday of last week, I journeyed across the still swollen river to receive a Cat Scan of the chest area… (in place of a PET Scan because Medicare wouldn’t cover another PET Scan this soon after the last one). It all went well except for having to hold my arms over my head for an extended period of time. I’m not very good at that anymore… my arms go numb and it causes my heart to have more skipped beats and arrhythmias than its usual 10 or so per minute, which in turn causes a serious shortness of breath. Otherwise… it was okay.
The very next day I received a letter in the mail from my radiation oncologist that I have respected and trusted with my life for the past six years with metastatic cancer in six different locations of my body… all of them serious with horrible expectations from the medical professionals and cancer organizations. I have respected and trusted her because after six years… I am still in this world when the first tumor I encountered (lymph of the neck and tongue with an unknown primary) had a prognosis of 12 months. The remaining metastatic tumors have been even more serious with survival percentages ranging from 5 to 15 percent. Having a heart and immune system too weak to endure chemotherapy or surgery, it only served to decrease those percentages. So… you can understand my trust in her. However…………. the letter I received did tilt the pedestal that I had her on for a very long time. In brief… this is what it said:
“I am writing to bring you up to date on the current and ongoing plan for my medical practice…..
As of July1, 2019 the Radiation Oncology part of my practice will be closing. I have elected to take a position which will allow me more time off. The last 30 years have been rewarding but challenging.
…for your medical care please follow up,, as usual, with your primary care physician, retaining medical and surgical oncologists if problems should arise…”
Receiving this letter on June 26th was quite disturbing… this was on a Wednesday… That gave me just Thursday and Friday to find out how to get records… what other oncologists would she recommend… what do I do now? The day before this letter I had a CT scan that was scheduled “by her”. I had an appointment with her the next day to discuss the results of the scan and what I thought would be a discussion of “how to proceed from this point as far as treatment”… radiation… if necessary. Let’s say… my attitude about that visit was quite negative at that moment. I wanted to wait in the treatment room until she came in and then say… Really?………… Two days notice?…………… Is that really fair to your patients… especially those who are currently in need of treatment with tests already in process? Really?…………….. Then I thought I would spring from my chair and choke her. (just kidding….. sort of)… I did behave myself, although… I was quite disturbed. She came in the room and asked how I was….. After a few very uneasy seconds of silence… I responded by saying… “Lost!.. I feel lost.” Then she had the audacity to ask me “Why?” I said… “There’s a rumor that I’m losing my doctor.? She said… “Oh”. She then awkwardly sat down on the roll around stool and opened my file to discuss the CT scan results.
Here they are in all their blooming colors with hues of crap…
First… the good news…………………….. Oh… wait… there was no actual good news this time. The good news column of the report seems to be rather… well… empty.
So… the rest of the report…
Mediastinal adenopathy… Oh… sure… they had to start the report off with something I had to look up. Mediastinal is the part of the chest that lies between the sternum and the spinal column, and between the lungs. This area contains the heart, large blood vessels, windpipe (trachea), thymus gland, esophagus and connective tissue. Adenopathy (lymphadenopathy) is disease of the lymph nodes in which they are abnormal in size. Whew… too much knowledge for an old man.
Now… to continue… The right hilar mass and post-obstructive changes are similar to the previous PET scan. There is right pleural effusion with strandy densities in the posterior right lower lung with air bronchograms.
Bronchograms… refers to the phenomenon of air-filled bronchi being made visible by the opacification of surrounding alveoli. It is almost always caused by a pathologic airspace/alveolar process in which something other than air fills the alveoli… usually blood or fluids from infection.
Pleural effusion… the build-up of excess fluid between the layers of the pleura outside the lungs.
I’ve had a bit of difficulty in defining strand densities… however… it appears to be associated with collapse or consolidation of an area of the lung.
Now… to continue… The actual mass is somewhat difficult to delineate, although I suspect it measures at least 4.5 cm medial to lateral. It does abut the right side of the left atrium. ((this particular finding is new and certainly concerns me greatly… considering the current condition of my heart.)) Progressive, irregular nodules in the medial right lower lung are seen measuring 1.4cm, another 1.5cm long axis… and another about 7mm.
Calcified granuloma in the posteromedial left lower lung. Calcified granuloma in the spleen.
Now… you must be in complete understanding of this entire report… just as I am…… NOT!
Right hilar mass… ill defined with post-obstructive changes extending posteriorly and laterally from the mass and the right hilum.
Right pleural effusion.
Medial right lung base nodules somewhat progressed from the previous exam.
Evidence of granulomatous disease. ((just for the record and a better understanding of this journal in general… Granulomatous disease is an inherited (genetic) immune system disorder that occurs when a type of white blood cell (phagocyte) that usually helps your body fight infections doesn’t work properly. As a result, the phagocytes can’t protect your body from bacterial and fungal infections. People with chronic granulomatous disease often may develop pneumonia, lung infections, skin infections, lymph node infections, liver infections, gastrointestinal inflammation or other infections. They may develop clusters of white blood cells (masses) in infected areas… granulomas.
I found that to be most interesting considering my age and the fact that not one single doctor I have seen throughout my lifetime has ever even mentioned this… although my white blood cell counts are often… well… weird. Hmmm….
So… here’s my interpretation of the whole damned thing…
The tumors are still there in the hilum and subcarina… now pushing against the left atrium… fluid surrounding the right lung… tumors in the lower lining have increased in size just a bit. Fluid in the partially collapsed lower lobe that can’t escape… collapsed middle lobe partially surrounding the hilar tumor making the determination of an accurate size rather difficult.
Currently… and apart from all other symptoms past and present… I am experiencing severe bouts of lightheadedness, dizziness and extreme weakness particularly in the legs. When these bouts hit, I often experience my vision closing in from the peripheral to sometimes… nearly complete loss of vision. During these occurrences… the closing in is accompanied by various colors with the predominant color being a pale green but may contain a number of different colors. I know that sounds weird and I’m not at all sure that this description really tells it accurately, but you get the idea. It happens when I cough real hard, which is often these days. It happens when I lean over or when I rise from squatting down to pick something up or to do my daily kitty chores. It’s not pleasant and it does concern me a bit. This has been occurring far too frequently over the past three days particularly in the morning hours. I have no idea what the actual cause may be because there are too many possibilities. Perhaps it is low blood pressure, but that would be really weird considering my BP history.
Here’s the thing…
It appears that I am a bit ill… but determined and filled with hope. I haven’t survived this long by giving up… and with your support… caring… well wishes… and hugs… my vision of hope will carry me and those who care about me… through to better days.
Most of you know someone having to deal with cancer… maybe a friend, just an acquaintance or someone very close to you… please… give them a hug and let them know that you care and that you are there for them. Call them and ask how they are doing… even if they are like me and don’t want to really talk about it… it will still mean something special to them that you care enough to ask and have the courage to do so. That is some of the very best medicine you can give to them… and always remember… laughter is so very healing… no matter the circumstances.
Wishing you all wellness, happiness… and a vision of hope.