I was hoping after getting out of the hospital last Saturday that we could get back on track and get ready for the Chemo which is starting next week, but we've had some tough days.
Her overall attitude has really gone down since leaving the hospital. We have seen a parade of doctors and a full schedule of labs and scans and it's starting to take it's toll. She's stopped watching TV (which has always been on) and she is interacting with us less, preferring to stay in her room. Trying to get her to join us for dinner has been unsuccessful, and she is spending most of her time sleeping. :(
There is a real reason for her to feel down, but having a positive attitude as we face the challenges ahead will help a lot.
The biggest problems that Mom's facing as we go into Chemo is a lack of nutrition and dealing with the pain. Dialing in the pain meds hasn't been easy, and Mom's been struggling with a lack of appetite for months. She's lost almost 100 pounds in the last 6 months... but it's becoming all the more important because she's losing a lot of strength and the Chemo is going to knock her down more.
We met with a new primary care physician(PCP) yesterday, and had our Chemo training class. We had to push back the PCP back 90 minutes because getting her up and out was really hard. He gave us a couple new prescriptions that will hopefully help with mood and appetite. We started on the new pills last night, and I am hounding her to drink these prescribed nutritional drinks...
Monday we are getting the Chemo port installed. We have to be at the hospital at 6:30am. Thursday we get the first dose of Chemo, and we have family visiting on the weekend.
All for now, hoping to have a better week.
So, we had our first follow-up after the hospital stay and we have a plan moving forward.
It involves 6 more appointments between today and next Thursday, but if all goes as expected, she will start her first round of Chemotherapy next Thursday. The goal with Chemo is to shrink the cancer enough to remove the uterus. A cure is not the goal, the cancer has spread too far, but slowing the spread and keeping her as healthy as we can for as long as we can, is what we can do right now.
Her energy level has been low today and our trip out to the oncologist took a lot out of her, but she's sleeping better and upping her calorie intake.
Mom is home and ready to sleep for 40 hours... :) Hard to get a good night's sleep in a hospital.
So, she needs to catch up on her sleep, and give her kidney a chance to heal.
Here's to a few days of no excitement. :)
Had the colonoscopy this morning... it didn't tell us much. The doctor couldn't get the scope where it needed to be, because the cancer seems to have attached to the colon and he couldn't move it around without risking tearing it.
Still waiting to hear if we can go home today.
UPDATE: We got the clearance to go home today. Waiting on the training to care for her kidney drain line. We are still on track for Chemo, which is good news. We will be back in next week sometime to get the Chemo port for real.
We went in for an out patient procedure on Wednesday and we were still there... she continued to have lower back pain and she wasn't sleeping well. On top of that it was looking like she wasn't coming home again today and they kept finding more issues to address.
She had a procedure to relieve the pressure in her kidney by putting a stent into her urinary tract to push back on the cancer squeezing it. It wasn't successful. The urinary track was swollen and twisted not allowing the stent to get where it needed to be.
They had a backup plan.
Make a small incision next to the kidney and try to put the stent in from the kidney side... that didn't work, but they put a drain tube in.
I had to leave to pick up the kids, so I wasn't there when she got out, but I talked to her on the phone and she gave me the groggy recap.
I brought the kids back up and we hung out for a couple hours. The drainage tube was working and her pain is almost all gone. She was joking and in good spirits. She still has to stay overnight, but after the colonoscopy in the morning we should be able to bring her home.
It's been a challenging week, but we are taking all the good moments we can get.
I saw my mom in March when we drove to Amarillo for spring break. She had lost a lot of weight since she was down in Austin for last Thanksgiving, and she seemed pretty sick. She attributed the weight loss to heavy work schedule at the ballet, and she had just been diagnosed with a kidney infection and was a few days into the antibiotics. By the end of the week there seemed like a little improvement, but things seemed worse than a kidney infection.
There were a couple more rounds of doctor visits until they did a biopsy and found out it was uterine cancer... which they characterized as slow growing, but they didn't know the extent of the spread.
Mom didn't have any family in Amarillo and my brother and I are in Austin, so I decided to drive up and bring her down for treatment.
We did see a gyn oncologist in Amarillo who wanted to operate and remove the uterus, but I thought it would be best to have all the treatment in Austin, so we headed back.
The gyn oncologist in Austin did a physical exam and ordered a CT scan and MRI, which showed that there was a significant spreading of the disease. She labeled it Stage 4a Uterine cancer and said surgery to remove the cancer was not possible.
She also said that the way that the cancer had spread made Chemo and radiation treatments tricky. She wanted to do surgery to bypass parts of the intestine that had been compromised, before starting the chemo.
This meant meeting with a cardiologist to get cleared for surgery and a surgical oncologist to talk about the surgery scheduled for this last Wednesday (9th). On Tuesday we got a call saying that they had consulted other doctors and decided it was best to skip that surgery for now and do Chemo first... but Wed. was still on... they'll just put a port in her chest to facilitate the chemo. Outpatient surgery... home by dinner... meeting later to discuss chemo schedule.
Wednesday didn't go as planned, her blood volume was low and they needed to give here 2 pints of blood in a transfusion... which takes 6 hours... overnight stay. There was concern in the morning about blood loss so they scheduled a procedure to look into her stomach with a camera to see if there were any ulcers... That scan was clean and meant that they would probably need to do a colonoscopy to continue searching for the source of the blood loss. Prep for a colonoscopy takes some time.
There is another problem. The cancer is surrounding the line leaving one of her kidneys and it is causing the kidney to swell because the kidney is not draining properly. The proposed solution was to put a stent in the blockage and open it up again. That was scheduled for this morning(Friday) and didn't work. So now she is in another surgery to try and unblock it from the top down instead of the bottom up.... if that doesn't work they are going to put a drain tube in to relieve the pressure on the kidney and come back in a couple weeks and try again when the swelling has gone down.