The Twilight Zone of Cancer

Tried writing an update the other day, just not worth posting, as I couldn't put down my thoughts the way I intended. trying again...

This past month has been a series of confusing news, that just goes to show the ups and downs folks dealing with the B.C. Cancer Center go through. Dealing with this entity is in truth, just as hard as dealing with the disease itself. 

Before I get into our travel marker on this journey through the Twilight Zone, I need to speak about my friend's trip. The walk along side of her, has been an absolute rollercoaster mostly going to the pit of hell. As I mentioned previously, she has a very rare form of cancer, one that is unimaginable, I am going to let it go at that. So , as it is rare, treatment is really a guessing game. She has gone through surgery, and when we met, she was beginning her 7.5 weeks of Chemo and radiation. She finished this at the beginning of January, and was sent home to "recover" until April. Keep in mind, no tests on the outcome, just sit at home for 3-4 months and cross your fingers it is not growing like crazy..Because, folks when this is inside of your body, that is where your mind goes, no matter who you are. Come the beginning of April, off she goes to PG and is told, the treatment did nothing!! What a blow, right? Her records have already been sent to Vancouver, and she gets a call from there, telling her the next step is for her to travel to Kelowna for a PET scan, and then they will decide what surgery they will do, both types requiring her to have all sorts of parts removed and bags to do bodily functions, plus a prognosis that is pretty grim. She also must go into her local hopital and have 4-5 biopsies taken (very painful) . Well it turns out on a Video cell call the vancouver specialist wants them to do 18 biopsies many of which are "Punch" biopsies, all while the cell phone is up to her tumour. This is done. Then more recovery time, and only weeks later, a phonecall informing her she is now in remission! No cancer detected, all biopsies negative! Her treatment for the very large dead tumour, antibiotics and vitamin E to help heal. Just let that sink in...can you even imagine getting two completley different reports , one basically saying you have no hope, and the next saying surprise..you are cancer free? Please don't get me wrong, I am ever so greatful she has won her battle, however, the toll the rollercoaster has taken is intense. Mental health fighting any disease is of utmost importance, hers is in tatters. This is what the system does that is so very wrong, there is absolutely no consideration for one's mind, and the body can not heal when the mind is not assisting. 

So onto our story, keep in mind, as we travel our road, I walk beside my friend on hers. We have shared a large part of our battles with each other, we question each other, we lean on each other. She is in the fight, I am beside a fighter, so she can help me understand what my beloved doesn't speak. 

Chuck finished cycle 6 of chemo, cycle 1 started in December. We were told we would hear from the Oncologist around the middle of this cycle..Not a peep! In the midst of this cycle, he had a CTscan, and a echocardiogram. We had an appointment in the book from his last chemo IV for the Tuesday in Smithers to see the Dr. Off we go. She came into the room after reading the CT report. OOps forgot, during this cycle he also had the feeding tube removed, a gastroscopy, and a colonoscopy, by our very favourite surgeon who did the orginal diagnosis back in September. After the procedure he came out to speak with me, and was very excited. He said he could not have imagined the improvement, and explained her had taken biopsies as he scoped.  So back to the Dr. She explained the CT was very positive, all biopsies had come back negative as well. No cancer in esophogus. The nodule on his lung had disappeared. The spots on his liver besides one were gone. There was a lesion in the opening of the pancreous but not worrisome. She also said there were some lymph nodes that may be questionable. So, it was decided he was done Chemo! Now he is on something called maintenace therapy, he will simply get an IV infusion every 3 weeks of the targetted medication he has been on since December. He will do this until December and then we will see what is decided afterwards. You say hallelujah? Well, in additon to this, we find out the next day during the IV, that he will no longer have Dr. appointments, nor bloodwork, simply every 3 months he will get a CTscan. His cancer is a very agressive type, it moves quickly, in my little mind, 3 months is simply NOT acceptable. Now I have to attempt to get in touch with the Dr. next treatment date, and request he at least gets blood work once a month, there is no way in hell we can manage to go along for 3 months at a time wondering if the medication is still doing it's job. You have to understand, we have had to deal with Dr. Gloom and Doom, who at each appointment stressed the medication will stop working at some point, and the cells will become immune, taking over all his organs, till his system shuts down. See the importance of Mental Health????So, I personally cannot manage to sit and wait 3 months knowing that perhaps the cells have become immune, if the blood work that he gets to show the tumour markers is continued each month, we will be able to tell if they are multiplying and something can be done before too much damage occurs. I hate that I have to insist on something that seems so common sense, but not going to accept anything less than. I would have felt a bit better if we had spoken to the Oncologist but that does not appear to be happening in the near future , so we continue on...In the twilight zone of Cancer.