Yes, and that is where you got to speak up, loud and clear! Firm, not rude, but, let them know you mean business. In 98, they diagnosed me with the wrong form of lymphoma. (how dare they, lol.) AND, then, put me on the wrong drugs for a total of 16 months, drugs not effective against the correct diagnosis. In 2000, I was told about the drugs I was on prior, that they, " just weren't the choice drugs." Choice drugs my ass, they were the WRONG drugs. They were not only ineffective, they were harsh drugs, made for men, not a woman, and, they had a hard time adjusting the doseage to drip due to it. I developed a heart problem due to one of the 4 drugs they dripped one after another, 5 days a week for that time. Now, I had to first of all understand, who and how this huge mistake was made. So, I requested my slides, my blocks, and had to see for myself. I took them to the university and used their high-powered microscopes. Okay... afterwards, I was able to give them some leeway. It was confusing as all hell. Reason being is, I have a double nucleus; which in Hodgkins disease, it is the Reed Sternberg cell, which is oddly, not a double nucleus, but, the cell structure presents itself as a "set of owl eyes." Which Non Hodgkins doesn't have. BUT, but, mine is also, nodular sclerosing which when stained a pink, looks like a cascade of a water fall, which inhibited them to closely, see, what they were looking at, was not the reed sternberg cell but, an odd double nucleus. One in a million. So, I was able to say, "okay, I get it." And, I let go of it. Which they appreciated. Treatment went on, but, now I wasn't a stage 2 no longer, but a 4. So, that depreciated my life span and made things so much rougher. That is when, I decided to get active and understand this problem which was trying to snuff out my life. Believe it or not, at first the medical field will strongly, object to you learning about it all, because now you can ask better questions, the right questions, and know, if they are right or not, or you should seek another medical person. I waste no time in seeking another, it is my life. They would do the same if wearing the same shoes.
So, you got to understand, they will judge you, by how interested you are in saving your life. You don't need to be commanding but, you got to know exactly what is going on. It is in your best interest Lee.
With mine also, I have indolent and intermidate grade.
Which requires different drugs to kill each one. Indolent is the one which I will live with for the rest of my life, it is very slow-growing, we measure its growth and chemos do not work against it because the teeny-tiny ones are not recognized as an invader; the intermidate grade is the one Jackie O had, and that is the bad one. For, it can turn quickly aggressive, and be fatal. BUT, chemos, especially, Rituxan is very effective against it.
I swear by the time I am old, I will pass the medical boards.
