One Day at a Time

August 7, 2014
Some day I'd like to get back here, with a regular posting schedule, happy tales and restaurant reviews. For now, it'll be whenever I can find a few moments to jot down some thoughts and ongoings.

The 24th of July we met with my mom's oncologist to go over the biopsy results. That's when we learned that the doctor at Valley Hospital performed the biopsy on the wrong lymph node. It was negative for cancer, but it wasn't even one of the nodes that lit up on the PET Scan. More time wasted, and more senseless pain and suffering for my mom. The doctor did apologize for being harsh during our last conversation and we agreed it was a big misunderstanding. We decided to put it behind us, because he's supposed to be the best and we don't have time for additional delays. We developed a new plan to admit my mom into the hospital, get port implanted, biopsy done, and start chemo on the following Monday.

She went home that night to feel the comforts of home and love from her three German Shepards. Then, on Friday, Frank and I picked her up and we went to California for the weekend. She felt defeated and needed to find a way to get in a good place before starting chemo. She asked to go to the beach. So, I made it happen. I've wanted to take her to San Diego since she's never been, but it was Comic Con and hotels were ridiculously priced. I searched last minute rates on Hotwire, and got us as close as possible for a reasonable price. Friday night, we stayed at Quality Suites in Santa Ana. The three of us shared a room to save on costs and I noted three adults in the reservation. Upon our arrival, I was told we had a king bed and sleeper sofa. No rooms with two queens were available. We were disappointed, but rigged something we thought would work but we needed linens and pillow for the sleeper sofa. I called right away to have them brought to the room. We waited an hour, and nothing, I called back and they explained the hotel was full and they were very far behind. They asked for my patience. We were hungry and decided to grab a bite, we figured they could let themselves in and leave the linens.

We went to Habit Burger. It's become a popular chain in California. I didn't find it to be as good as In & Out, but it is better than the competition. Everything was fresh. I'd eat there again. It actually reminded me a lot of a burger joint I ate at as a kid everytime we went to the beach, it was The Lure in Portage, IN. I believe. After eating, we drove to Newport Beach so mom could hear the ocean. Parking on a Friday night is no easy task, so we cruised up the beach to where it is more residential. We walked down to the beach only to be turned away a few minutes later by security, "the beach is closed." Phooey on him. We were tired and wanted to rest up for a full day at the beach tomorrow so we went back to the hotel. It's about one o'clock in the morning when we arrive. No linens or pillow were delivered. I went to the front desk and I was told that the hotel was sold out and the had no linens or pillows. I was too tired to argue. I went to the car, and pulled out blankets we brought for the beach and we pulled a pillow off the King bed to make a night of rest possible. Then, I called Hotwire to complain. They were helpful they provided a credit and were just as flabbergasted as I was; never having heard of a hotel that didn't refused to provide linens. They told me to call back in the morning and they would cancel and rebook our second night's stay.

Morning came and that's exactly what I did, only available rooms had really dried up. There was nothing comperable. Long story, short, we decided to book a night in Mission Bay/Sea World. If we were going to pay a premium, we were going to make it worth our while. We had reservations at The Dana on Mission Bay. But first, we had an important matter to tend to, we were go to Langer's Deli in LA for awesome pastrami sandwiches and potato pancakes. We even ordered a slice of chocolate cake to go. Mom and Frank were digging into it about an hour later. I was much too full. Traffic was ridiculous between LA and Encinitas. Stop and go the whole way. It is actually faster to drive from Vegas that it was between LA and SD that day.

We got checked into The Dana and it's a nice resort. Our room was comfortable and it came with two queens and linens. Imagine that! We went to Mission Beach and we found a nice spot away from the crowds in the residential area.

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Mom and Frank got in the water. While I watched from my cozy spot on the beach. It was unsually warm, it was the first time I've stepped foot on a beach in California and didn't get a chill. Hunger grew so we grabbed a bite at El Indio, still the best taquitos and fish tacos! And massive chimichanga.

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Then, we went back to the beach to watch the sunset. Afterwards, we cleaned up at the hotel and then took mom to Coronado Island where we sat by the bay admiring the view of San Diego. Then, we took her down by the border.

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Sunday, we had a slow start because the sun caused mom's lupus to flare up. She was in a lot of pain. We started at Con Pane Bakery for yummy sandwiches and cinnamon rolls. Then, we took her for a ride to the Point Loma light house so she could sights, and along PCH and through the Gas Lamp. Then, we were off to La Jolla. We went to the cove so mom could see the sea lions. Then, we cruised through the residential area to a couple quiet beaches before heading home. We made the most of our time, but the time had come to head back home.

Mom dreaded going to the ER on Monday, but we went. We were much happier with St. Rose - San Martin. They got her scheduled for her port and after it was implanted they moved us into her room at the hospital... Home for the next five days. That night they got her started on chemo, from start to finish the infusion took about 8 hours. It began with premedication for 30 minutes - this helps with nausea, then Etoposide is administered for one hour and finally Cisplatin is infused over six hours. Then, there is the blood draw. The first night, she had extremely hot sweats. The second night improved and followed the same schedule. The first two hours have a lot of monitoring vitals, but the last five are more restful. That's when we'd get peak sleep. We had a great nurse that gave us tips and filled us in some of what to expect.

She was supposed to get her biopsy in morning after the first night of chemo, but nothing is perfect. She had received a blood thinner after chemo to prevent blood clots and radiology refused to perform the test. Mom was angered. I didn't blame her. Now, the biospy was delayed until the next day and she fasted for no reason. Thankfully, the biopsy did happen the next day, I was able to speak to the doctor performing the biospy to confirm she would sample the proper lymph node. Mom found the test to be very painful. It was hard to hold still so hopefully that doesn't interfere with the results. Which we are supposed to receive today.

The third and final night of chemo was handled by a different nurse. She was kind and meant well, but I didn't trust her like I did our first nurse. Treatment got started later and for some unknown reason she slowed the drip so it didn't finish until 9am on Thursday. Usually we were done by 7am. We got very little rest. I worried that the delay would cause my mom to feel nausea. Coincidence or not, nausea started a few hours later and lasted a couple days. It is still present, but it comes in waves rather than having a constant presence. Zofran was given for anti-nausea but it did little to help and it caused stomach cramps. She had significant swelling in her legs and feet but it improved once we got her home.

Before treatment even began, her white blood counts were low so they planned to give booster shots after treatment. She received Neupogen on Thursday and Friday. It seemed to cause flu like symptoms and bone pain. Mom was released from the hospital on Friday. She slept for 48 hours only waking to pee. How much of it was due to chemo vs Neupogen I can't be sure. Sunday afternoon she was able to eat and worked up an appetite. She could eat small meals before nausea would strike. That night she had extreme insomnia. She didn't sleep a wink when I woke to take her to the doctor's office for blood draw and Neupogen shot.

The port had been such a blessing throughout our stay in the hospital. It worked just as intended and it was wonderful. Of course, nothing can be without issue so it started acting up at the doctor's office. They could get fluid in, but no blood out. Hopefully, this is an isolated incident. We don't need the headache. We were trying to get home health worked out to administer her Neupogen shot at home in Pahrump, but the solution ended up being switching to Neulasta which lasts for 7-10 days rather than needing a shot every day. The hurdle with that was cost. One injection for my mom's share on Medicare is $678. Not many could afford that, how would someone on disability? Thankfully, the office works with multiple foundations to get drugs and treaments covered. She was able to get assistance for Neulasta and for the next chemo treatment to be outpatient. I'm going to work on finding out the the specific foundation, because charities that get help to those who need it should be supported.

Monday evening, Frank and I brought my mom home. She can rest there until Sunday. Our next follow up appointment is Monday. She's having extreme bone pain from the Neulasta shot. Still, working to improve that symptom. Heartburn also seems to be troublesome to counteract. With any luck, the next few days will be uneventful and we can stick to the current plan. The next round of chemo is likely to begin Monday, the 18th.

5 comments:

Anonymous said...

Thinking of you and your Mom every day Kellee - hang in there - God Bless - CanadianGuyEh....

Anonymous said...

Flush,

That was very thoughtful of you to take your Mom on that California outing for a few days.

Very few of us realize how our idle hours wear on us...for all of you to be busy with new places and new experiences for those few days were needed, and you were wise enough to give those to your Mom.

There many be too many rough days just ahead...all we can offer are our thoughts, wishes and prayers.

KathyinNY said...

You are in my thoughts and prayers constantly. Thank you for the update. I pray that all goes well and your Mother has a speedy recovery and the end result is many more years of a good life on this Earth. Hugs to you!

Andie said...

I am so glad you got to take your mom on a trip before all of the chemo... definitely good for the soul.

I will pray that the chemo starts working and she gets better quick!

KathyinNY said...

Not sure why my post of yesterday didn't show up but I wanted to give you hugs and you all are in my thoughts and prayers.

What you do for your mother is tremendous and I know how that feels since I went through it myself back in 2004.

Even though we have never met, you are a special/caring person.

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