Yep. Ketchup. Certainly not Catsup! The condiment and when sharing the latest and greatest with friends. Despite my proud penchant for a prodigious vocabulary and particular passion for proper pronunciation ~ it's never 'catch up' ~ it's ketchup!
When you navigate the planet for 56 years - replete with two cancers, their requisite surgeries, treatments and rechecks - you accrue lots of amazing and odd anniversaries! Babies and weddings. Graduations and proud accomplishments. Special trips and beautiful every days with family and friends. B remembers ALL my "dates" - while I do not. There is one exception. This one. About this time ten years ago, despite a clear PET scan the week prior, my throat felt full. Strange. I took a peek. Yep. A black lump was peering round one of my tonsils. Tammy B's horrified expression after she agreed to take a look at work said it all. Melanoma. Surgery was quickly scheduled. That Saturday I had the affected right tonsil and surrounding tissue removed. My fourth melanoma met since my diagnosis in 2003. Left forearm in 2007. Brain and lung in April 2010. Not the trend you want ever, but especially unfortunate when there are NO effective FDA approved treatments available. No clinical trials available either as they required measureable disease, which - luckily - I kept having removed! We (briefly) considered leaving the tonsillar met in place until it was of sufficient size to allow me entry into a trial for ipi!!! Craziness! This time of year, always reminds me of that particular nuttiness. Surgery had been scheduled so quickly that it was too late to change the fact that B was scheduled to staff the late clinic that evening. So, a rather haggard mute lady gave out candy to all the little Trick-or-Treaters that year. Cancer peeps have some strange anniversaries!! Though we had little hope and no way of knowing it at the time, 10/30/10 marked the start of my now 10 years with no evidence of disease from melanoma. No small thing.
I had a follow-up oncology appointment earlier this month. Unfortunately, it was the usual waste of time. Hidden in a prior hiking post, you may have noticed my colonoscopy roughly 6 months ago, replete with numerous biopsies, was clear. Strangely though, the routine follow up CT scan of my abdomen a few days later showed ascites (fluid accumulated in my abdomen). Weird. At that appointment, it was decided that prior to my next visit, an abdominal ultrasound would be done to recheck. On that inspection, all fluid had miraculously resolved. Perhaps ascites happens after lots of colonoscopies? We just don't usually have a CT afterward that finds it? Anyhow, I see the oncologist or her NP every three months with lab work, annual colonoscopies and a rather random schedule of CT's that we make-up as we go along. No one knows what to do with me. Not even me! Stage IV melanoma in which you SURVIVE lung and brain mets (as well as a phase 1 trial and a few other sundries) for 17 years is crazy enough. When you add Stage II ex-goblet cell adenocarcinoma of the appendix, folks REALLY have no clue! After all my abdominal surgeries in 2018, I did chemo typically used for colon cancer, though its effectiveness for the tumor I had is really unclear. Three proteins (CEA, C-125, and C19-9) via a blood draw are evaluated at my quarterly doctor visits. In theory, these would be elevated in the presence of cancer. Unfortunately they are not terribly specific for my cancer type. None have ever been elevated. At this visit, when B posed some questions about testing my existing stock of tumor specimens for the presence of mutations for which drugs have been developed to target, the NP went red and defensive, visible despite her mask. B as Fredo put it, did go "all Rainman on her" as there is no data pertinent to ANY of his patients that this man fails to commit to memory. Simultaneously, it was clear the NP knew little about it. NO BIGGIE!!!! As a provider - or just any human really - if you don't know, say you don't know. Don't defensively blab, make up numbers and get your nose out of joint. I always told my patients what I knew and was very honest about what I didn't, while assuring them I would work to find out what was needed to help them. I think my patients were better served and respected me more for it. No such sentiment was provided on my visit. It was awkward. I was put in the position of smoothing feathers. Seriously, is that what the cancer PATIENT is supposed to be doing at their check-up??? Good grief! B felt bad. Afterwards when discussing how uncomfortable the NP had been, and how difficult it had made the visit for us, I felt even worse when he stated quietly, "She would want me advocating for her if SHE had cancer!" Indeed she would.
But to finish the useless visit... B became quiet. I dealt with the remaining questions. "Yes. I feel fine." (No. I didn't bother to tell her that recently the neuropathies to my hands and feet have worsened. Not as bad as they were during and after my chemo. But strangely and suddenly worse again. The feeling is a bit hard to describe. Palms and soles burn. Especially at night. The most unpleasant sensation is when my feet turn into what I call 'cinder blocks' on a run. They feel as though they weigh a ton. I feel unsteady. Every step hurts. Doesn't happen all the time. It's rather random. Like the penitent patient, I have tried to determine, "What I'm doing to cause this! Is it worse because I ran? Is it because I did that hand stitching? Is it because I wore those shoes when I mowed?" The answer is NO! Nothing I do makes a difference. As Trump likes to say, "It is what it is!" I think recently colder weather may be a factor. But mostly, it is just the shitty result of chemo - lots and lots and lots of patients deal with it. Docs have no real answers, no real solutions, and no particular interest in listening to a patient drone on about it. So, I didn't.) When it was time to finish up and plan the next visit I asked whether or not CT's would be scheduled. Once again, she didn't know, so she said, "Well, you've had lots of scans over the years, so we are trying to limit that. So, as long as you are feeling well, with no pain or other symptoms, we'll just see." I did venture to mention I had NEVER felt unwell or any notable sensation at all due to cancer (tonsillar adventure being the one exception). Brain met? Check. Not one headache, dizzy moment, or nausea. Lung met? Sure. No wheezing, shortness of breath, or respiratory distress of any kind even though we watched it sit there for over 6 months! Abdominal cancer? Yep! Not one stomach cramp, no bloating, no loss of appetite - nothing. "Hmmm....", she replies. "Well, as long as you are feeling well, we'll just go with that."
It was incredibly hard not to shout my favorite Billy Connolly line from 'Mrs. Brown', "Are you deaf, or stupid?!!!"
My oncologist called a few days later. My labs were normal. No, we will not do any testing on my tumor samples. Insurance is unlikely to cover it and we would need to repeat it should I recur. So there you go. I'm fine with that. My personal Donkey (on the edge) is - resigned. For now.
So, yeah. Ketchup. It's handy in life and in the cupboard. I'm not one to put it on my eggs and everything else. But, it's perfect on burgers and dogs. A great stand in for tomato paste in soups, stews, meatloaf, and such in a COVID pinch. Speaking of meatloaf and burgers - here's the BEST ketchup topping - created by moi!
Lessy's Meatloaf with Caramelized Onion Topping2
1 1/2 pound ground meat (I often use ground turkey or beef. Freddo's fav is made with 1/2 beef and 1/2 ground pork.)
3/4 - 1 cup bread crumbs 2 eggs, beaten 1/3 c Ketchup
2 T dried mustard (you could use regular) 1 T Worcestershire sauce
1/2 tsp dried thyme S/P to taste 1-2 ribs celery, chopped fine
1/2 onion, chopped fine Splitch of hot sauce as desired
Have meat at room temp. Preheat oven to 350 degrees. Beat eggs. Sauté onions and celery in a bit of olive oil til tender. Let veggies cool a bit. Add them and all other ingredients to meat. If too dry, add a splash of milk. If too wet, add more bread crumbs. Don't over mix. Form either in a ring or loaf in a baking dish. Bake loaf for 50-60 minutes. Bake ring for 30-40. Topping will be applied when about 15 minutes of baking time remains.
Topping: 2 onions, thinly sliced olive oil 1 c ketchup
1/4 c honey, syrup or brown sugar 1 tsp mustard 2 tsp Worcestershire
Sauté onions in oil. Cook at medium high heat until onions are soft and a rich golden color. Add ketchup, honey, mustard and Worcestershire. Add hot sauce if desired. Heat until mixture is thickened and shiny. Apply to meatloaf or burgers! Enjoy!!!
There you go! As Jeanne says, "Slurp!" Ketchup!!!! It's good stuff. In all its forms. More ketchup in the form of Quarantine-while activities and recent reads coming soon! Love, les
Good meat loaf
ReplyDeleteYou so silly!
DeleteYou were and always will be my hope.
ReplyDeleteThanks, Jeanne! That means so much to me. Maybe the day will come when we can share another real live hug!!!!
DeleteThat NP experience sounds horrible! So sorry to hear. It seems very important to do genetic testing on the tumor. I wish you well dear Celeste.
ReplyDeleteI have to figure out how to get your blog posts.
I have been dealing with metastatic melanoma since 2013. And luckily have been on Tafinlar/Mekinist anNED for going on three year. I go for a PET/CT later this morning.
Will keep fingers and toes crossed that your NED status long continue!!!
DeleteGot the results: Stable, no evidence of FDG avid disease!!! I am relieved!
ReplyDeleteGood for you!!! Enjoy!!!
DeleteEnjoyed the post as always Bubbles. Hope you and your family have an amazing Christmas!
ReplyDeleteSincerely,
BrianP
And to you and yours as well, Brian!!!!
Delete