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It's All Happening So Quickly...
The middle of December, Tess called to tell us that they had found another tumor in her body. Over the last three years, Tess has had 4 surgeries to remove tumors that are growing within. She has liposarcoma. She had one 24 years ago that when they removed it was 35 pounds and she lost one kidney. She went another 20 years without problem, but in then there was an 18 pound one and since then they have kept close eye on her so they could perform surgery as soon as possible.
She told us her doctor was going to do another CAT scan in March to see what the growth was before they did another surgery. Then she called back and said that the doctor had called again saying she needed chemo because the tumor was on her liver and couldn't be operated on. And she had an appointment the end of the month. Still, she was saying this was non-cancerous...
Tess does not hear well nor does Johnny. Both come from an age when you didn't ask questions of the physicians and that the physician knew best. We are not sure what when on during an appointment with an oncologist the end of December or how their options were explained to them, but Tess called us and told us they would be installing a port in her chest and that they would be giving her chemotherapy which would involve her being in the hospital for four days at a time and then home between sessions.
My grandmother went through chemotherapy and it did nothing to extend her life and everything to make the end of her life horrible. She was ill, couldn't eat, her hair all fell out...all of the things she had enjoyed earlier in life had been taken away. We were concerned because our research indicated that Tess' cancer was not really affected by chemo and we knew how hard chemo would be on her. We got permission from Tess and Johnny to call the nurse, but she told us very little and when we asked what the chances were that this would help her, the nurse was vague and said, they had treated sarcomas all the time. Tess and Johnny were set on their course and there was nothing we could do about it. Ultimately, each person has to make their own decision about these things. Later, we have learned, that they really didn't understand what was going on and that they were still thinking of this situation like the others they had been through, but it wasn't the same because her liver was being attacked this time.
So, the second week in January, Tess went through chemotherapy. Johnny was able to stay with her. All seemed to be going well. She gained a lot of fluid weight while in the hospital and the puffiness made her feel like not eating, but other than that, she was okay.
She came home. Her voice was so different on the phone. But she said she was doing okay. Not nauseous, just couldn't eat because of the swelling. We later learned that her throat was sore as well. And that after a few days at home she had lost over 40 pounds.
Thursday afternoon, the kids and I had just come out of the movies when my cell phone rang. It was Sharon, Johnny's daughter. She was calling to say that Tess was in the hospital. That she was running a high fever and was delirious and the doctor had told her that he didn't think she would make it. Sharon had tried calling Daniel, but had been unable to reach him. I tried calling him and it was the second or third time before he picked up and whispered he was on the phone. Sue, a neighbor of Tess, had called to tell Daniel the same thing I was trying to tell him.
By 6:30, we had all of our ducks in a row and were headed to Roanoke to pick up Bruce. We wanted to drive through the night and get here as soon as possible, but bodies are weak and by 11 I was exhausted. Bruce took over and we managed to get another 3 hours down the road - almost into Georgia before pulling over and getting a hotel room. We got a few hours of sleep and headed off again. We arrived in Lakeland about 4 pm. Tess had just been taken down to have a sonogram done. They were needing to see how much fluid was in her lungs and how her swallowing was going. She was supposed to be back to the room in one hour, it was 3 because they were backed up with transporters in the hospital.
While we waited we learned that she had many blisters on her skin on her body. These are like quarter sized blood blisters that stand 1/2" or more out from her skin. This was the infection in her body trying to eat its way out. She had no platelets or white blood cells. She had been admitted with pneumonia and a urinary tract infection. The blisters on her skin were also in her throat and esophagus and her vocal chords were 'stuck' open which was inhibiting her speech and meant she couldn't swallow anything by mouth for fear of it going into her lungs.
With all of the antibiotics she was on, they had been able to bring down her fever and her blood pressure. the day before it had been 230/120. We were told that if Sharon hadn't arrived to see them when she did and demanded home health to send the nurse ASAP, Tess would've died that day. Johnny had been told that the local hospital couldn't care for Tess because she was a chemo patient. So he took that to mean, he couldn't take her there for anything. What it meant was they couldn't handle chemo side affects, but that illness was a different story. She was transported an hour away to Lakeland hospital which is where Sharon lives.
Tess was finally brought back to the room. She was alert and so happy to see us. We had to keep our distance though because she wanted hugs and couldn't have them because we didn't want her to be exposed to any more germs. We stayed at the hospital for awhile. We were tired and of course shell-shocked and grateful that we had been able to see her and that she had made it through the night. We found a local hotel for the night.
Yesterday we were back at the hospital around 9:15. Tess was talking a little more even though she wasn't supposed to be as it runs the risk of infection and it just hurts her vocal chords. She was more alert and sitting up. They took her down for some swallow tests/sonogram to see how things were looking inside her throat and esophagus and lungs.
We met with her physician and he was very unhappy. Turns out that he had told them in the past that chemotherapy was not an option. That was why he sent her to a surgeon. Either Tess and Johnny didn't hear that or didn't remember it. He told us yesterday that with her age and her one kidney that chemo was not a viable option and should never have been done.
We can only speculate that when they went to the oncologist that he said this was an option, that was all they heard and so they said 'okay'. I am hoping that the oncologist wasn't just providing chemo so he could add to the hospital's and his bottom line. I am giving them the benefit of the doubt...though I really want to go there and have more than a few choice words with them.
About an hour later, we met with the oncologist here at the hospital and he said that now that Tess was stable they would be transferring her to Moffit as that was where she was receiving chemo from and they had the responsibility of taking care of her. Sharon, Dan and I said 'no way'. She doesn't want more chemo. We don't want her back there. And so then we were told, if there was to be no more chemo, her doctor would probably be willing to continue with her care (as far as he was concerned, she had acted against his advice and so he wasn't going to be able to continue to provide her with care).
So, between the first doctor consult and the second one, we had been talking about Johnny and Tess were going to have to leave their home and go to an assisted living facility and what all would have to be done to make that happen. After the second doctor consult, we realized that was no longer an option. Tess will be transferred to hospice if she is well enough to leave the hospital for around the clock skilled nursing care. Johnny cannot live on his own and will probably be staying with his daughter Sharon who lives here in Lakeland for the foreseeable future.
Tess and Johnny always had a plan. Johnny is 14 years older than Tess and they always assumed Tess would outlive Johnny. They are not prepared for the very real possibility that it is not going to work out that way. As we explained to them what their options were yesterday...all Tess could say was she didn't go somewhere that Johnny couldn't go and all Johnny could say was he was supposed to die first. I cannot tell you how heartbreaking these conversations have been.
The rest of the day, we took turns sitting with Tess and trying to figure out how to make all of the rest of this happen. We had our moments with Tess to tell her how much we loved her and how much she means to each of us. I am so grateful that we have the opportunity to tell her these things. To sit with her and hold her hand. To help her with small things like a cool cloth for her face.
We don't know how much time we have Tess or Johnny with us. Sharon and Daniel and I all agreed there would be no more of them going to see a doctor without someone with them to understand. Yesterday after the first doctor visited and talked with us, Sharon asked Tess if she understood what he said and Tess shook her head and said 'no.' If you have elderly parents, be sure that you or someone goes with them to doctor appointments. They need an advocate to ask questions and to understand what they are being told.
Tess should not be in the hospital right now...and it happened because they didn't understand what was going on with her even though we tried to tell them. It is hard to take a stand against your parents whom you love and respect, but keep in mind, sometimes, we do know best.
So, today, the kids and I are going to head back home unless something drastic happens this morning. Daniel is still trying to decide what course he will take right now.
