Question Everything!

Some folks out there may already be familiar with some of my lengthy, wordy posts in the Kidney and Caregivers groups but I had a few minutes so I thought I'd share our brush with cancer back in 2018. For a whole year we were told the odd rash we both noticed was nothing more than a skin rash which required a "special soap". For a whole year we were told that idiotic nonsense. I drove him at the speed of light to the ER in the spring of that year because he couldn't eat anything one evening. He had been losing weight, itching his legs almost to bleeding and just kept becoming more and more fatigued all during that time. For a whole year, we were told that nonsense when we (at least I) suspected there was more to it than that. He had been diagnosed previously with a kidney disease years earlier, as well as a case of acute Hep C (which had been "cured, thankfully); so he wasn't sure if those symptoms were related to those other things but he was perfectly willing to assume what he was being told was accurate. I, however, always the "worrier", became more and more concerned that cancer was somehow a problem. One of his sisters had died of kidney cancer when she was only 49. His mother had had breast cancer in her 40's and his twin sister, also had had breast cancer. So, cancer certainly was in his family history.

When he was unable to eat anything that evening in 2018, and we ended up in the ER that night, they found a baseball-sized tumor in his small intestine that they determined was malignant after they ran a CT scan and found it. I, of course, was LIVID! A whole YEAR, being told he had a skin rash? Honestly . . .

So, after they took the dang thing out, and biopsied it . . . he was diagnosed with Stage 4, Non-Hodgkin's Large B-Cell Lymphoma. He had to have a Port placed in his chest for the chemotherapy treatments and he endured 6 rounds of R-CHOP chemotherapy. He also had to have a Neulasta patch placed on his abdomen after each chemo appointment following the first one when his white count took a nosedive. I had to fight for even that, here at the local level, because they said it would be "expensive".

My point in this sad saga is that when your gut tells you something isn't right . . . be assertive and push for the answers. You deserve to gain the peace of mind we're all entitled to. Thankfully, my husband responded to the treatments and has been in remission since the fall of 2018. However, because of his specific, rare kidney disease, we've been told to be vigilant and to follow the MAYO Clinic's recommendations that the IPMN, in particular, which was discovered on his pancreas through follow-up scans . . . since 2018 . . . be monitored yearly for signs of change that could suggest another cancer developing.

Although, I am the worrier in our marriage, and although I have been scorned by many a healthcare professional, family and friends (even he, my husband, at times) for my diligence in searching for proper care, I have recently concluded that if he can function as though nothing is wrong and feels pretty good most of the time, I need to withdraw from some of the drama and try to live somewhere in the middle, between being a "Pollyanna" and an Eeyore from Winnie the Pooh. I don't count on anything being perfectly fine ever again; nor, do I walk around with my head pointed toward the ground. Cancer (I really, really HATE that word) . . . is, to me, to be thought of as an uninvited evil intruder into our lives that we BOTH need to fight in the best ways we can find for each of ourselves TOGTHER, as a team.

Hopefully, this thing on his pancreas (as well as the other "non"cancerous cysts they've found on imaging results) are just THAT . . . . "non" cancerous. But, if they turn out to be something scary again . . . . my hope is that this forum, along with the other tools I now have in my toolkit to fight it successfully, we can slay that dragon too, if it decides to show its grotesque self.

My point is . . . in this ridiculous battle against CANCER . . . Don't take anything you're told as all there is to the story. Do your homework, ask your questions and don't leave that doctor's office until you're satisfied with what they're telling you is something you can simply "watch and wait" to see if it turns out to be something to worry about!!! What a ridiculous notion . . . just go on with your lives as if all that worrying goes "POOF" and it magically disappears. Trust me. It doesn't and it's ridiculous to expect anyone can ever really do that. Doing so nearly took my husband's life and nearly sent mine down the tubes along with him.