Today is a day of lasts. Today marks my final visit to the Mayo Clinic. It marks my last blood draw. It marks my last needle stick and IV catheter placement. It has been 4 years since I’ve been coming here at least every 3 months for some sort of test or treatment. I look down at the veins in my arms and remember how heathy and prominent they were at the beginning of this journey. Now they are faded, small and hidden but they did their job and lasted until I needed them. Keeping me away from needing a more invasive central line port.
Today’s visit was to get a blood transfusion as my cancer has invaded a lot of my bone marrow destroying the stem cells there making me pancytopenic (this was made worse by Lu 177 but since not recovering it is due to progression of disease). I agreed to get the transfusion after my last consult with my oncologist yesterday. He thought a “top off” would help with the fatigue and shortness for the next 6 weeks.
Now the final leg of my journey has arrived. I will enter home hospice on Monday. A decision that was not made lightly but a decision that I know in my heart was the right one to make at this time. The cancer is now completely taking over and it is time to focus on dying with dignity.
I feel at peace with this decision. It feels strangely comforting to be finally drifting downstream with the river of life instead of constantly swimming upstream against the current.
I would like to share some final wisdom if you would allow me?
1. If you are the start of your journey hit that cancer hard. Do whatever treatments are available to you which have a scientifically proven difference increasing your overall length of survival. In the beginning the negative affects will likely be due to the side effects of your treatments and not from the cancer itself - trust me...the way you will feel in your last 3-6 months of your disease fight is so much worse so try to keep your disease burden low. Exercise and stay fit. This will help you immensely. Push through the side effect of ADT/chemo fatigue. It’s hard but extremely beneficial.
2. Your prostate cancer is as unique as you are. Yes all of us on this forum have prostate cancer (or are supporting someone with prostate cancer) but we all likely have very different DNA damage and errors that have caused our cells to divide uncontrollably, turn off apoptosis and lose the ability to stop dividing when in crowded contact with other cells. What works for someone may not work for you. Your cancer may be able to be suppressed with ADT for 20 years or maybe just 6 months. Genetic testing will help to identify known mutations that may help with possible therapy but this is just the tip of the iceberg.
3. Don’t put too much faith in supplements and diet. Eat clean and focus on plants but the thousands of claims about this supplement or that herb should be complementary to what you and your medical oncologist have agreed increases overall survival. As per #2 the guy who claims that this supplement or herb is what has kept his prostate cancer at bay for 20 years may just have a milder variant of prostate cancer with less aggressiveness. Yes I too as a physician watched the series The Truth About Cancer 4 years ago and took notes and basically did everything they claimed would work. Here I am dying 4 years later and I spent a lot of money on these therapies both here in the USA and Mexico. I think naturopathic treatments helped me feel better during chemotherapy but this is just an assumption. I really don’t know. Be wary of claims of this or that curing stage 4 prostate cancer. Do complete cures happen? Maybe or maybe they are in remission? You will always find that person who drank baking soda, took dog wormer or whatever and is now “cured”. It is not the norm for most of us.
4. Use this forum to bond with your brothers and find out what others are doing. Over the last 8 months I received a lot of medical advice which was completely wrong and inappropriate. It is ok to get the advice but you really should run it by your medical oncologist vs listening to lay people who have your best interests in mind but lack the proper training, skills and art of interpreting medical literature. This takes years and years to get proficient at. Just because someone is learned and well read and versed in the literature regarding prostate cancer does not make them an expert. That is why there will never be online medical schools producing physicians. You needs to see thousands of patients in real life scenarios before you get to become an expert.
5. If you have advanced prostate cancer you should have a medical and radiology oncologist as part of your team. A urologist does not have the training to manage APC on his or her own. Get a referral!
6. If you don’t want to do any medical or surgical treatments then that is your choice. Also when you feel it is time to stop fighting that is ok too.
7. Don’t take your disease out on your loved ones. My wife tells me countless stories from her support groups of how we men start being mean and unaffectionate to those that care for us the most. Yes it sucks. You have cancer. You may not feel like a man anymore because you have have no testosterone, zero libido, or impotence but your wife or partner has nothing to do with that and they just want to help.
8. Not all doctors are created/trained equal. If you don’t gel with your provider or even if you want a second opinion that is ok and is smart. Be your own advocate but respect your doctors’ knowledge in their craft. I have practiced in 4 countries across the globe. The USA is the only country where patients frequently and truly believe they know more than their physicians because of the internet.
9. Again early in your disease do what you’ve always wanted to do but never got around to it. You have no idea how things will progress so don’t put off your bucket list any further. If your disease burden becomes too high or the pain is too severe you won’t be able to do anything.
10. Take a break from prostate cancer. Prostate cancer is part of your life but is not your life. Unplug from the internet. Stop researching from time to time and just enjoy your life.
Peace and love to you all.