“Optimist: Someone who figures that taking a step backward
after taking a step forward is not a disaster, it's a cha-cha.”
― Robert Brault
It's funny, my mom's horse is named Cha-Cha. Since her diagnoses in July, she's worked to find her a new forever home. As much as my mom loves Cha she knew it wasn't fair to keep her at home without any friends. My mom's ailing health prevents her from riding, and most recently, providing the proper care and attention she deserves has become a burden.
The universe works in mysterious ways and I believe people come into your life just as you need them. For example, my sister was surprised when she learned she was pregnant, and now, Addison is what gives my mom strength when she is at her weakest. She also formed a bond with a neighbor, over mutual disgust with a rowdy neighbor, and they have been a blessing, they water her plants, care for her dogs and maintain odds and ends when my mom is with me in Las Vegas. After her mediastinoscopy, she needed her wound packed and home health was arranged to help her out while she was home in Pahrump. It was her nurses' friend that ended up taking Cha-Cha, at first it was only temporary until my mom could find her a home, but she was such a good fit, she decided to buy Cha-Cha. She lives in horsey paradise. She's adjusted wonderfully and my mom can visit as much as she'd like. She's only been able to get over there once so far, but Cha, didn't skip a beat and ran straight toward her. My mom's heart overflowed with joy.
It's been a rough couple weeks since. Last I shared, my mom was waiting for a brain MRI. We didn't make the appointment because she was in the hospital. After feeling sick from Chemo, it seems she caught a bug, and then an infection. The infection caused a fever. Saturday, August 16, I picked her up to bring her to Vegas. She felt like utter crap and her fever was low grade but it increased from the night before. This was an incredibly taxing day, because it was also the day Amy went into labor. We were so overjoyed for Addison's arrival, but our hearts ached that we were so far away. This same day is when my mom lost her hair from chemotherapy. I first cut it short, but it didn't stop the gobs of hair from falling loose. Later than night, we shaved her head. My brother shaved his too in solidarity. Skyping with Amy and seeing Addy for the first time was the highlight of our day. My mom couldn't believe her granddaughter had more hair that she did.
The next day, my mom's fever increased and it was coupled with flank pain. We called her oncologist's office, the doctor on call was the first oncologist we met with that we didn't like. She suggested we go to Quick Care, an infection was suspected. I know that germs are a concern and I didn't feel quick care was appropriate but we called anyhow to see if they can access her port. My instincts were right, they said "don't come here!" I decided to bring her to the emergency room, we returned to the hospital where she had her chemo. They didn't find any signs of infection, but they decided to admit her. They started her on antibiotics, treated her pain and nausea.
They put us in isolation until they could determine that C Diff was not the cause. It was silly, because my mom had not had diarrhea since Saturday afternoon. Yet, we were in isolation until Tuesday afternoon. If she had C Diff, she wouldn't be able to leave the toilet and I'm sure I'd be sick as well, I argued numerous times, but they have to follow protocol. Meanwhile, my mom's fever spiked to 102 degrees. Apparently, cultures from her urine sample finally indicated that a UTI was present. An infectious disease doctor was brought in, she was concerned about infection in her port, but ruled it out. They gave her additional antibiotics to prevent sepsis.
After her first night in the hospital, she began to have excruciating pain in her lower ribs and then it moved into her left lung and radiated from shoulder into her arm. Morphine didn't ease the pain. Dilaudid was all that would help. Every four hours she was treated for pain. We also tried a few anti-nausea medications before finding Reglan. She still had no appetite, but the nausea was bearable. They brought in a GI doctor for the pain after ruling out her hernia that she's had for years. The GI doctor wanted to do an endoscopy. We refused to put her under, general anesthesia caused her too much grief after the mediastinoscopy. I feared her lungs couldn't handle it, she's completely against being intubated. So, we felt it wasn't worth the risk. Her attending doctor seemed to think the pain was related to her cancer and her oncologist doesn't agree because cancer pains are generally localized. After five days in the hospital we learned nothing new of the pain or what was causing it.
While she was hospitalized I had them run a bone scan and brain MRI. I requested the bone scan because she's complained of pain in her tail bone for months. When googling I found that this could be a sign of metastasis. Thankfully, the scan revealed no abnormalities. The brain MRI only showed normal changes due to age. Having these tests come back negative for cancer gave me the confidence that my mom is likely Stage IIIB. This definitely provides a greater amount of hope. When she was released from the hospital we met with her radiation oncologist and he agreed. He'd like to get started on radiation, but first he has ordered a PET Scan. It is scheduled for September 2. Her last scan was in May. Before radiation begins he wants a better grasp on the current size of the mass and enlarged lymph node that was positive for Lung Cancer. This will also allow us to see if there is any indication of metastasis to the left lung or fluid. Which was my concern when the pain traveled to the left lung. Once the results of the PET scan are ready we will meet with a radiation team to go over the planning for her radiation treatment. She is willing to try, since it is our last hope. She will not be continuing chemotherapy. 28 days is far too long to deal with nausea and other effects. Hopefully, radiation will suit her better.
To help treat the pain they started her on a fentanyl patch in the hospital. It didn't seem to help much because she still needed dilaudid to control the pain. It did weaken her respiratory system. After a few hours on the patch she was dependant on oxygen. The patch lasted for three days. It is an expensive prescription and it seemed to do more harm than good so we discontinued it.
She was released from the hospital late afternoon Thursday, she ate that night and Friday, but then the nausea returned. The Reglen pills did nothing to ease the nausea. She lost her appetite and fought another bout of diarrhea. This continued through Monday. She was so weak and defeated she asked to go to the ER. I had planned to take her to her cardiologist to rule out congestive heart failure because she had developed too many systems to ignore. I figured the ER would be best to help all that ailed her. They ran a CT scan of her chest, abdomen and pelvis. It found no blockages, and nothing new to be concerned by. It was a relief, but also a frustration for my mom because she feels like complete shit and has no clue why. They boosted her potassium with pills. I requested her urine be cultured to confirm the infection is no longer present, and they sent us home with medicine to encourage appetite.
I read up on anxiety and saw that it can cause nausea and diarrhea so I decided to have her try a dose of Xanax. It was previously prescribed to help her sudden occurrences of shortness of breath. She was able to get some much needed rest and symptoms improved a bit. The other medicine seems to be working, she actually felt hungry last night. Let's hope, it's a step forward.
Her pain had subsided, she had no medicine for pain since Saturday, that is until the dull pain returned in her lung last night. She had been away from home for ten days, I knew seeing her dogs and resting in her own bed will do her good. Her boyfriend is home for a week so I felt comfortable taking her home last night.
If I've learned anything over the past two months it is that I need to accept that her lung cancer, COPD, diabetes, lupus and MCTD are going to cause bad days. I can only hope the good out number the bad. I must remember to dance.
