On 8/18 the Nephrologist, Dr. Banga came to see us.
He talks with a strong Indian accent and through a mask so he is hard to understand but the more we talked the easier it was. And you wanted to listen…because he told us alot! He was very informative.
He made a nice drawing for us and explained what they are seeing and how they see it. He explained that that day they will do a Venogram which is where they go into the vein to take photos with dye. It’s possible to remove a clot with a procedure called a Thrombectomy. They were hoping to go in and do a biopsy on the lymphnode and do that Thrombectomy in the same procedure with IR that afternoon but they were meeting at 2 to review it all. They were 99% sure that they were seeing Lymphoma and hoping it wasn’t in the kidney. They were thinking at this time that that clot maybe be decreasing flow and by removing it, it may increase flow and kidney function. At this time dialysis was discussed as short term and long term possibilities. I remember after the doctor left Mark stated he just did NOT want to be on dialysis.
Early that afternoon the IR gal, Ashli, informed us that they were ONLY going to the the biopsy because he needs to be OFF Heparin for the biopsy and ON it for the thrombectomy. The plan was then to go back to IR the next day (thursday) to have the clot removed.
8/19/21 Ashli (yes I look at name tags and write down names when I remember and this is how she spells hers) came in to let us know the clot will not be coming out. It was not in the Renal Vein and was not the cause of kidney function decline. Instead, they will be placing a Permacath (a port) in the upper chest as a temporary access for dialysis. Later on (soon now I hope) he can get AVF (artery vein fistula {completely butchered that!}) in his arm but it takes 6-8 weeks AFTER placement to even be used but once he can use it, life becomes easier (going in water ect) We were educated on dialysis at home and other options. We were also told 2 years after remission he can be elgible for a transplant. ( We did later learn that this is a Spectrum “rule” and that other places in the US may transplant him sooner, depending on circumstances. I also learned at dialysis that he cannot receive a transplant from Spectrum unless he receives the C19 injection). We were told at this meeting with Ashli/Banga that he will probably be in the hospital another week. At this time he as at a level of 4.9 for his creatinine and a 13 for his GFR. (for those that want to know this stuff)
I have to go right now…I have people coming and stuff to do…I’ll continue later today but will publish for now.
but…I wanted to circle back to the title…
So now yesterday….I kept hearing Tumor Thrombus from Mayo and that is what is so concerning to them. I looked it up:
“Tumor thrombus is defined as tumor extending into a vessel, typically a vein. It occurs in a wide variety of malignancies. It is vital to distinguish tumor thrombus from “bland” thrombus (free of neoplastic cells) in the setting of neoplasia, as this often impacts staging and treatment approach.”
They did breifly talk about that and that was the reason they weren’t going to try to remove the clot….also that it could break off and cause more issues and that since it seemed stable they were going to let it be.
Okay I’ll be back.
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So on Thursday afternoon he went in to get that catheter put in and right away they did dialysis. He said that was the darkest day for him. To be placed on dialysis and have to rely on a machine several times a week for several hours a day to get his blood cleaned, was very disheartening to him and something he really wanted to avoid. The biopsy came back inconclusive and we were told that the same night. It just wasn’t an awesome day. They said they would have to do another one.
Mark went to dialysis the next morning and right after that he had the next biopsy and procedure a biopsy of the kidney. He didn’t look awesome after all of that and he didn’t feel good. Kidney biopsies come with more risks such as bleeding and so he wasn’t on heparin for 24 hours after that and he had to lay low for a few hours. They would watch him closely for bleeding and take labs more often. We were hoping for biopsy results as early as the next night or as late as the following Tuesday. Kidney biopsies are not read there but sent out to a lab in Arkansas. They explained that the first biopsy was inconclusive because the tissue they grabbed was dead. This seem to rule out that Lymphoma theory.
He had dialysis again the next morning and it made him sick and he also threw up when he returned to the room. The harse motion of vomiting may have caused his back to be “thrown out” and he was in alot of pain distinctly in one area. It was like one of those shows where the middle aged man throws his back out doing something silly. It was very painful. He was becoming more swollen in the abdomen and it was moving into his back. He is now up to 187 which is 15 pounds heavier than his normal and he wasn’t eating food.
On Sunday he felt better (and we had gotten our own room for 2 nights). It’s been two days since the biopsy and now he was urinating alot of blood. No one really seemed concerned but after bringing it to the attention of a couple nurses and a couple doctors..someone finally addressed it. Nephrology said it could the added IV fluids and that he is off Heparin but that didn’t make a ton of sense to me. They did another CT and were going to watch his urine closely and compare to see if it got lighter or changed. He was urinating small and later, large, clots. We were told biopsy results should be there the next day (Monday).
They explained how the Heparin needs to register 37-52 and that he was high (I think) and so they just and take away until they hit that perfect spot.
His back still hurt crazy bad.
Tuesday they said the preliminary biopsy results indicated cancer of the kidney but they needed send it off to IU and Mayo (and maybe other places)for additional testing to detect exactly what kind of cancer it is and its genetic makeup so it can be treated. That night Dr Campbell from Oncology came in and explained cancer to us…and I explained that in one of my first blogs. So that might bring us all up to speed.
We were moved to the apocolypse wing where it was nice and quiet to rest and he was taken off IVs to oral meds and we waited for results until we were released on Monday the 30th. (we are still waitng results)
Today is the 4th of September.
I was able to get into our Mayo account to see our upcoming appointments. We have transportation and hotel for a week in Rochester NM. One of the first things he will get is an MRI. I looked up that MRIs are more detailed than CT scans and can detect some cancers that are less or not detectable on CT scans. Spectrum did not do an MRI, I am not sure why.
Today many came to help us get some projects done and move some large items up to the Newaygo house where I found more wood cut and stacked and my porched beams on their way to being fully stained and sealed. I knew people were helping but it’s so nice to see it coming together. Its so incredible that people would do all of this for us. I think it’s really hard for Mark to know people are doing all of this and he can’t. He has no energy and small walks take his breath away. I’m very eager to get to Mayo.
Right now we are all sitting in the living room. Cora, Hatcher, Aly, Mark, me and Bucky watching a goofy movie and just doing…nothing. (besides this and some college math and college Bible summary). Its nice. I even think Karson is on his way here. Thanks for following and thanks for praying. Pray that pain does not increase and there are no new health issues before we leave that might detain us. Pray we can keep our ducks in a row for the week while we are apart.
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