Nov 8th
short and sweet.
We had State Finals for CC on Saturday and sadly…Mark could could not go, even though he seriously considered it several times. It was a great running day weather wise…and we were seeded at 6th…so to come out as 2nd was HUGE!!! When you read articles about Hart…how they were a bit scared of Kent City…it’s pretty cool. Each KC girl ran the race of their life and succeeded. I love cross and I’m not even a runner. (I mean I run…). I just wish Mark could have really had one good “al-y-esk-a” yell.
Sunday was a day to get some stuff done at the house and we tried…but we did have visitors. However, we did get the hickory floor sanded and I recieved a message that the hot tub was wired today!! Mark is excited!!! Come on fistula!!! (I mean, lets get this CVC out!! so he doesn’t have to worrry about submerging it!)
Mark was able to go to our church meeting as chairman of the board. He was able to address the congregation and thank all those who worked so hard to keep our church going strong. It was emotional but really nice at the same time.
Today we went to the Chiro after dialysis (and by the way…no alarms!!) He wanted to go over the MRI results with us. We weren’t eager to drive 30 mins each way to chat but knew we needed to. Mark felt good and ate well and was willing. We learned some not so great news. I KNEW…MARK KNEW….that something was off with his back. When he vomited at the hospital and cried out in pain…and then laid on his face in his bed…..I knew something was off. They did CT scan him but looking back on my journal, I don’t think we ever got results back on that.
So we asked every doctor we came into contact with…to look into the back pain and I feel we were pushed aside. I asked for PET scans etc…and finally a couple weeks ago I asked the oncologist to request a PET so we knew that the cancer was not in his back. I was denied at the our online meeting. She said that, “yes, there was cancer in his back”. I was confused as we had asked several times with and were told no, and now she was addressing it as if it always was.. She still did not want to do a PET. She also said “no chiro”. What frustrated me is that the body is one unit. Each system relies on the other. To treat only ONE of the those systems…seems..ignorant. To act like your specialty is the only important issue is assinine. His back pain was so accute that I knew…something was wrong.
Today we learned—through and MRI—that our Chiro ordered through my request—that Mark has a fractured back. He has a compression fracture that has probably gone through its most painful season already. BUT it is weak and is in urgent need to be assessed. He should be in some sort of brace to ensure that he will not further injure or irritate the nerves. This area involves the bladder, bowels, the reproductive system and more. HELLO!!! That was the intense pain in the hospital. That was the intense pain this past month and that has been the reason that we can’t ride in a care of lay down or walk or sit. HELLO!!! But the medical answer is…more oxycodone…maybe some steroids. It’s a frustrating world folks. Our chiropractor should not have had to order that. But, I’m glad I asked him to.
If you have not looked into how the pharmacuetical medical schools started…you need to. Rockefeller and Carnegie were out to make money and money they made. And money is still made but the patient is not treated as it should be.
We sent a request to his PCP to refer us to someone who can get him into a brace and keep the integrity he has right now. Stay tuned.
*****
I was called out! I forgot to update on Felicity. So she was experiencing some symptoms that may indicate a misscarriage (last Thursday). The ER was super busy and so she did not stay. Over night symptoms subsided some and she had the opportunity to go see her OB but no ride…..so she layed low and over the weekend it all seemed to improve. She found out she is having a girl. Pray that she can feel good enough to get a job, get her car back in her possession and start making some solid plans for the future for herself.
Also we already have someone working on a brace for Mark!!! We do have an awesome community!!
Mark says I was too harsh on the medical world. Let me just say I am VERY THANKFUL that we have advanced medicine because that allowed Mark to give a kidney, and that allows Mark to stay alive on dialysis. Thank goodness for surgical advancements and even pharmacuetical advancements. I am truly thankful that if I get in a car crash, they can put me back together. That a 22week old baby can live outside the womb!! It is truly wonderful. And we have had wonderful medical people in our lives. I’m just saying the overall corporation and business of medicine seems to have lost its way. Also, we have so many sick people and our society doesn’t urge people to take care of themselves and do preventative care! So hopefully that made me look less vicious. :). I just feel like the patient needs to be listned to and that the doctors (although they have specialties) look at the body as a whole unite.
Comments 11
Wow. Lots of learning in that blog. I mean, I learned a lot. I know there are incompetent doctors, but that one wins the prize. Yes, the cancer is in his back, but we will not check on it or do anything about it as he might not have to take as many pain pills. Wow. Don’t see her again. 😳. Still praying.
Author
Well she is world known in the renal cancer world…so its hard to just not see them after major strings were pulled to get the to take you on as a patient. I think she is just so hyper focused on the kidney and its cancer she couldnt even imagine that anything else would be important. which isnt’ good…but
Omgosh….. when “specialists” determine they know more then the patient feels, makes me so angry. A good doctor will listen to what the patient is telling them.
So glad you are such a great advocate Dusty. Pain slows down the healing process.
Praying hard!
We love you guys xoxo
Jill Shepard
The medical system is so messed up. I’m glad you’ve found answers that’s amazing news 🙏🏼 Praying for you all every day
I feel for you! So frustrating to deal with the medical mindsets today. Thank God for chiro!
Hi Dusty—I’ve been following your blog and praying for Mark diligently. Before I opened the boutique I worked in healthcare administration for nearly 30 years. Most recently in Oncology, specifically as a manager of several surgical practices at Mercy Health in GR. The timing of PET(/CT) scans is very important as, for example, a false positive result is known to increase when these scans are ordered too soon following a treatment regimen of chemotherapy and/or radiation. Also, PETs involve injecting a radioactive chemical into the patient—another consideration in terms of performing the test at the appropriate time. Your physician and your insurance company are aware of best practices/established protocols, and employ these when establishing the proper timing of testing.
It is concerning that your physician doesn’t take the time to fully answer your questions and explain their thought process and treatment and testing plan. You should demand honest, open and thorough communication moving forward—whether it’s concerning testing for the source of Mark’s back pain, the timing of any diagnostic testing, or anything else that comes up. I’m sorry you’re having this unfortunate experience during this difficult time.
Author
I agree. You taking the time to type that is all it takes to let someone know that. No one has said that to me as of yet. I just know several people who once diagnosed…inwith a few days or weeks, get PETS. I’m all about being educatedd. Thats all I ask. When I ask quesitons…soemtimes I’m seen as challenging the physician but I’m not. I want to know and I want it explained and I don’t want to be treated like child or some dumb housewife. So thank you for telling me.
I do understand, Dusty, and I’m very disappointed in your physician/care team for not making sure your questions are fully answered to your satisfaction. This is troubling, so you have no choice but to be persistent with them. You should never be put in a position where you walk away from an encounter without your questions regarding treatment or testing answered and explained to YOUR satisfaction. Your physician should have a care team partner—usually a Physician Assistant or a Nurse Practitioner, who you could contact and discuss getting your questions answered about treatment and testing—not just the “what’s” but also the “why’s”—until you are able to have another visit with the physician directly. You should have been given a business card of a care team member to contact if you have any questions at all, etc. If you ever want to talk I’m available. Continuing to send up prayers for you.
Thanks for these updates, Dusty. I am sincerely awestruck by both of you.
You and Mark are amazing people. I’m sad that the medical field is so Wrong, I work it and see it daily and makes me sad. But know the people working truly want the best for you, most are good and caring. Some have big heads and it’s a Big problem. Stay strong continue to stick up for Mark that’s what will get u good help, don’t be complacent it gets you nowhere. If I can help with anything please send me a text. Prayers sent nightly for Mark and your family.
Dusty, I completely understand what you’re saying and feeling regarding the medical field. Yes, there is remarkable things that happen in the world of medicine but truly in many ways we have lost our focus. I’ve been a nurse for 25 years in and out of industry and clinical work. We must remember the patient first and business second. You’re a great advocate and the perfect person at Marks side. Love to you both. ❤️ Melanie