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My spring update
So I haven’t been on here in a while, been busy with my mind almost entirely else where. Work, family life (new daughter, my second, coming in August), travel (the snow storm at ameristar blackhawk the other night was incredible), and everything else.
So I got my TURB resuts back from my second TURB sometime about a month to a month and a half ago. It came back the same as the first TURB (low grade, NMI)
My doctor talked about this probably not going to be what ends up killing me, saying that I’ll very likely die of a normal person death like getting hit by a car or having a heart attack. He said I am very lucky. He also said that he doesn’t want me to feel like he is sugarcoating things, but that just he really thinks I am fortunate and have a good scenario.
He said my biggest issue, so far, will be the annoyance of having to deal with this disease. In may I’ll have my third explorative cystcopy (and seventh time awake with scope in general; when having to remove my stents from my first TURB, my urologist had to go in three different times to fully get them both removed.. I consider that time to be three times lmao).
Then if it’s like last time, I’ll have several little few millimeter size tumors in there, and so they will schedule a TURB a couple weeks later. Rinse repeat. This is me predicting the future.
I am still trying to keep full hope that maybe this thing just won’t come back. My urologist talked about him not wanting to use the big guns like BCG or a bladder chemotherapy without “getting to know the regrowth speed and size” more thoroughly to possibly get me to just yearly TURBs, even if it comes back every 4-6 months, according to him. Which is why he said this could be more of an annoyance then anything. He said each time these things come back, I have, statistically, a 15% more chance of it always coming back. Each time…it sounded like.
I am hopeful that it won’t come back. In less pain then ever since this began. Plenty of energy. Was underweight pre-cancer diagnosis. I am 6’4″ and I got down to 138 pounds before being diagnosed. I am not back up to not only a healthy weight, but the highest weight I’ve ever been, 178 pounds. I’d still like to gain 10-20 more pounds. But everyone has noticed that is close to me. My face and legs have gained the most. I have not been working out, but have been keeping my same high activity level I kept pre diagnosis.
Been eating healthier, but no where near perfect. However I do now juice every 1-2 weeks and I’ll juice raw apples, carrots, beets, cucumber, kale, and more. It’s very healthy being that it is naturally unpasteurized.
I also have been taking CBD Oil (77 % purity; no THC). orange flavor. My friend owns a lab, and I’ve always thought cannabis to be beneficial to warding against tumor growth. I think “smoking” it is the dilemma. I live in CO so cannabis is completely legal here for those 21 and older. Prior diagnosis I did smoke. Now I do not. I use a ceramic and glass vaprozing unit OR I use the CBD oil under the tongue. I am still waiting to find time to make the rick simpson oil.
Anyways, I want to hear from you guys. I hope all of you are well. I especially want to hear from someone who is dealing with a repeat occurence of a low grade, non muscle invasive bladder cancer like me, that so far, seems to come back in as soon as 3 months. As usual, thank you for the support & insight on here.
Heavy Wine Hematuria: 7/28/2017
Original DX: LG/NMIBC 1.7×1.5x2cm
1st TURB on 9/12/17
1st Pathology Results on 9/25/17
1st Scope Recheck on 1/12/18
2nd TURB on 1/23/18
2nd Pathology on February 2/13/18 (TBD)