The Week From Hell

July 7, 2014
Last Monday, my mom had a mediastinoscopy to biopsy her lymph nodes. The procedure went well, the surgeon was able to get good samples. During surgery, a frozen section was tested for cancer and it was negative. When I met with the surgeon, afterwards, he seemed to think it was infection and not cancer. I knew we weren't out of the woods, but it felt so promising. I knew it would come as a great relief to my mom, I couldn't wait to tell her.

Recovery is typically an hour or two. Time passed, and I still could not see her. I was told she was too groggy. Another hour went by and I still could not see her. I was beginning to worry, she's a diabetic and hadn't eaten since 8 o'clock the night before and it was now after 2 o'clock. Finally, her nurse came to talk to me. I gave her history about difficulty coming out of anesthesia and asked her to check her blood sugar. A little while later, I was told by someone else her blood sugar was ok. A couple more hours went by before they finally let me see her. Her oxygen levels remained low and she was being admitted for observation overnight. After two more hours a room was ready, when they moved her for transport the shift put pressure on her lungs and it felt like an elephant was on her chest, that coupled with the chest and back pain was a red flag for a heart attack. They now had to rule out any cardiac issues. My mom and I knew it was her lungs and not her heart (she was just cleared by the cardiologist before the bronchoscopy), but they had to follow protocol.

She was moved, but couldn't eat until she was cleared for cardiac. Of course, the kitchen closed by the time she could eat. She drank apple juice to spike her blood sugar. Respiratory did breathing treatments every four hours and then every two. Every hour someone came to check vitals or request a blood draw. We were refusing blood draws. My mom's veins are shot (just to get the IVs in they had to gas her before the surgery). They refused to draw from the IVs so we weren't going to let them torture her without very good reason. After refusing three times, they finally took the hint. Whoever says one gets rest in a hospital is completely out of their mind. My mom might have gotten five hours max by ten the next day. I had no more than 3.5 if you strung every cat nap together.

By mid-morning her oxygen was stable. Her surgeon came to see her, the incision looked good. He said he'd call her pulmonologist and she may go home with oxygen, but she should go home. Once she finally ate, she perked up a lot. It was wonderful to see. As time passed, the rotation of different departments checking on her continued on the hour, until we asked to be discharged. Then, everyone disappeared. My patience grew thin, we called the nurse and he said she would be staying overnight per the doctor making rounds.

Umm, no. He never said any such thing to us and they were only treating her with breathing treatments. We could do those at home, where she could actually rest; so I saw no reason to stay. I wanted to talk to the doctor. I needed a good reason for her to stay.

We waited. And waited. I had enough. This time I was told we needed clearance from the Physical Therapist. It was the first step toward discharge. We met with him earlier in the morning, but we waited. And waited. Two hours later, my patience was gone. I called for the nurse. Turns out we weren't waiting for the PT, she was cleared this morning. I was furious. He called the doctor and came back to say we'd be discharged in 40 minutes, the doctor had to write his notes. An hour, 10 minutes later we were finally cleared to go. I was so annoyed, but happy to be free.

I thought a good night's rest would do my mom well. She didn't feel as good as we hoped. She was weak. Breathing was a chore. This continued. Then, her incision began to drain. We were never told this was a possibility so I called the surgeon's office. He called back and said to dress it, and come into the office on Thursday if it was still draining.

Thursday, we found ourselves at his office. The seeping had turned to gushes when she'd cough or blow her nose. He said it wasn't normal, but also nothing to be concerned by so long as it didn't show signs of infection. Thankfully, it has remained clean. Though, it's still currently draining. He said eventually it will stop. I never thought eventually wouldn't last this long, but it has. While there, my mom asked if the Valley Fever results had come back. They tested her blood at the preop appointment. They didn't, but surprisingly he had the pathology report from the biopsy. We went over it there and then, rather than waiting for our appointment on July 8.

Four lymph nodes were tested. The first three were negative for cancer. The fourth was positive. We received the news we feared the most, she was diagnosed with stage III B non-small cell lung cancer. Life as we know it changed in that very second. We were taken by surprise, we thought she had dodged the cancer bullet, but here it was square in her chest. He apologized for getting our hopes up, and later confirmed that it was inoperable and chemo and/or radiation would be the course of treatment. He suggested an oncologist that has an office upstairs, I jumped at the opportunity, when he offered to help get us an appointment. He physically walked us up to her office. He's been really great, if you need a Thoracic Surgeon in Las Vegas, I highly recommend Dr Arnold Chung (even if he is a Cubs Fan).

We meet with the oncologist on Wednesday. We will seek a second opinion. And we want to explore all options. My mom's health isn't great right now, so I fear it won't be a fair fight. I will support whatever she decides; she has no control over her cancer, at the very least she should be in control of her plan for treatment. Initial research indicates she is a candidate for clinicals so I'm hopeful, but also realistic. Her quality of life is most important. She is in shock, and every day is a battle to breath. However, she's finding strength in Addison's arrival. That baby is a blessing in more ways than one.

We've since been in the ER twice. Both times we've left the house since returning home from the hospital have led to time at the emergency room. It gets to the point that home breathing treatments aren't effective. The ones in the hospital seem to help, and the oxygen makes the lung pain ease up and allows her to catch her breath. The odd thing, though, is her oxygen levels never dip low enough to indicate she even needs the oxygen. The ER doctors are at a loss. They want to run tests to rule out various conditions. But she's had so many tests with contrast, etc. That have all come back fine; we refuse. Especially, since we know what's wrong, now, the lung cancer. But the diagnoses hasn't been helpful in getting her feeling any better. We've ok'd chest xrays to check for collapsed lung or pnemonia and both came back clear. So, the doctors discharge us and say to return to the ER, if needed.

We've been anxiously awaiting today, hopeful, that we could get in to see her pulmonologist. Her appt isn't until Wednesday, but we feel it's urgent that she receives specialized care. I don't feel her primary or ER doctors are equipped to help at this point. As of now, it looks like we're stuck til Wednesday. Her doctor is in ICU this week, no other doctors in that office can see her, I had my mom try another pulminologist in the hospital she had her surgery but no luck there either.

Meanwhile, I'm hoping my some miracle he'll squeeze her in today or at the very least, we can avoid any more trips to the ER.

8 comments:

Anonymous said...

Flush,

Very sorry to read the results and her turmoil in the hospital.

I hope you got your spunk from your Mom, so she can borrow some back now.

Best wishes

Jay said...

Also very sorry to hear about the diagnosis. It has to be painful to see your mom go through such an ordeal with the hospital. I'll continue to pray for your family. It's great that she has such an awesome daughter to care for her like you have been. God Bless.

Anonymous said...

Prays for you and your Mom Kellee
Take care....

KathyinNY said...

I am sorry to hear about the diagnosis but commend you for your actions in giving your Mom the best care possible. Hugs and prayers to you all.

Anonymous said...

So sorry to hear about your mom and for what you are going through with the hospitals/doctors/tests. It's draining physically and emotionally. Lean on family as much as you can.

Take care.

BC Angel

Andie said...

I am so sorry to hear of all that you are going through Kellee. I admire you for going forth and trying to find her the best care possible. We will say a prayer for y'all that treatment will help her recover.

I just want to wrap you in hugs. I'm so sorry.

christine said...

your mom is very lucky to have a daughter like you. well, i guess it isn't luck, she raised you right. she'll be in my thoughts.

the Cubs comment made me lol. some family members named their new dog Wrigley. i thought how mean to set that poor dog up for failure it's entire life!

Kellee said...

Thanks to each of you for the kind words.

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