Dancing the Cha-Cha

August 27, 2014
“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.

SLS Opening

August 23, 2014
SLS opened to the public at midnight, August 23, 2014. Frank and I have attended nearly all the casino openings since we've been living in Vegas. Wynn's opening was tricky because I had a broken ankle, but still we made it. We rented a wheel chair and Frank pushed me all around the property for a first glimpse. Unfortunately, my mom hasn't been well and we had another stint in the hospital. So, I thought I might miss this one. But she was released on Thursday, and she is currently staying with me, I had my brother come look after her so Frank and I could continue our tradition. It was the first new casino opening since the Cosmopolitan in 2010. Yes, I know Cromwell just opened a short bit ago after closure of Bill's, but there was no ownership change. We knew to expect the same product with a new look.

I've been very impressed with the exterior of SLS. And projects I personally work on, grow dear to me and I'm always extra excited to see them debut. SLS was no exception. Usually, I'm on top of construction news and updates, but my attention has been else where for the past few months so I really knew very little about the final touches of the property. I heard some rumblings that is was Cosmo jr or Cosmo North. I was eager to see for myself.

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We arrived just shy of eleven o'clock, the line to enter was already building and it quickly grew once we took our spot in line. Employees signed up those interested in joining the Code player's club while we waited. Camera crews came by and took interviews. A few minutes before midnight fireworks forming S L S exploded over the porte cochere. A large display followed but we could only see the reflection in the high rise across the street from our vantage point. That was a bit disappointing, but we figured we'd be among the first inside (besides invited guests). It was nearly ten minutes passed twelve before the line started to move. And as soon as we approached the doors. We were halted. Random people walked right in from valet. I guess we were the dumb ones for waiting in line. Soon after, we finally entered the glass doors.

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The main entrance has a bright light up floor, mirrored walls and ceiling that seemed to be a favorite place for selfies.

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The bar is the focal point of the casino with a eye catching screen overhead.

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The uniforms for the bar staff came off as slobbish to me. Who knew, I was a stickler for neat appearance?

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And I couldn't help but notice the floors. It looks like they were already significantly worn, but maybe that was intended? It does fit with the industrial feel (unfinished ceilings, etc).

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We made our way into the casino floor and tried our luck on video poker. The first bank of machines weren't accepting bills. The second accepted our cash and promptly burned it away. A cocktail waitress did take our drink order, and in all honestly, we didn't expect her to return. But she did. I was happy to have Stella as an option, I'm not a fan of domestics but so often you're not given a choice of an import.

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We liked the feel of the Umami Burger and Beer Garden. Home to the Sportsbook operated by William Hill. The beer garden offers a patio open to Las Vegas Blvd. I felt this was a highlight of the property. From the casino floor you can view the keg storage. Got beer?

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The restaurants line the walls. I was surprised how much smaller the casino floor felt compared to the Sahara. All restaurants are easily accessible, but the layout kind of had a food court feel.

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The table games offered limits from $10, what was particularly striking were the dealer's uniforms. They had monkeys or baboons on their back. Not sure of the intent, there, but it seemed odd. In the casino biz it's been said that execs don't value employees enough and think that monkeys could do their job. This seemed to portray that in the most literal sense. That was my take away, anyway. That or that they have a monkey on their back, not necessarily the best depiction for a business that provides habit forming services (like gambling and drinking). I'm sure it is meant to be playful in nature; there is a heavy monkey theme throughout the property. Someone will have to explain that to me...

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The artwork around the casino is peculiar and graffiti has a strong presence. Casino carpet is a weird blend of colors, shapes, graffiti and photographs. Walls are adorned with strange choices, more monkeys and odd details like random eyes and angel wings.

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The back hall that leads to the hotel rooms and monorail is very dark. The oddities continue. Near the jewelry store, I was completely caught of guard when I was recognized from my blog. I don't know if I were too sleep deprived or too stunned to properly grasp the notion; I apologize for the lack of proper introduction. However, I want to thank you for saying hello and for your well wishes for my mom. It was very sweet!

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The player's club looked a bit cheesy and generic.

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Near all exits were booths to leave your drink, reminding you to sip your liquor slowly.

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We spent an hour on property. Valet remained closed and there was still a lengthy line of those eager to gain access.

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Overall, I think SLS is unique. It will be like the Cosmo because the clubs and restaurants will be the draw. I do not envision anyone making the trip to SLS simply to gamble. I'm clearly not hip or cool enough to get the concept, I might even be too old. But I will give SLS props, the final product was unexpected.

She is here. She is beautiful.

August 18, 2014
Amy and Jeff welcomed their beautiful daughter on Saturday, August 16, 2014 at 5:25pm. Addison Rose is simply perfect and a peanut at 6lbs and 6oz. Nicolas is a proud big brother. Amy and Addy are doing well. They were able to go home today. My sister's family is complete. Seeing her and Nick together simply melted my heart.

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It's amazing that I could love my niece this much, never having met. Thank goodness for technology! We've been able to Skype, receive photos by text and fill our Facebook feeds with her sweetness. It'll likely be a month before Addison can travel. So, we have a few more weeks until we can all be together. Hopefully, our time apart will pass quickly. I cannot wait to snuggle on this precious princess.



In Happier News...

August 15, 2014
My niece should be making her debut in the next day or two. My sister has developed Preeclampsia and her doctor scheduled an induction for tomorrow. She ran into the same trouble with Nick and actually ended up on bed rest for her final weeks of pregnancy. She was induced twice with him. The first attempt didn't get anything going so she had to try a again a couple days later. The second dose of pitocin did the trick. Hopefully, Addison will arrive quickly and without incident.

These last few months have been hard on all of us. My sister wants to be here. My mom wants to be there. And neither can travel. Before, we learned of my mom's cancer we booked a trip for Amy, Nick and Addison to come visit in October. I know it's not far off, but it feels like eternity. Especially, for my mom and Amy; it's been over a year since they last saw each other. Nick has grown so much. My mom will be shocked. Of course, meeting Addison will lift spirits and be the ultimate joy. If we can finagle an earlier arrival, we'll do it.

I wish my mom and I could be there to support my sister and Jeff as they welcome their daughter. We will definitely be present in spirit. Nick's birth is such a special memory. It feels like only yesterday, she introduced him to the world, but more than seven years have gone by. He's so smart and kind, he's going to be the best big brother. I'm so excited to see their relationship blossom.

More Waiting

August 14, 2014
We're back to waiting - AGAIN. So, the biopsy that was done in the hospital was inconclusive. We know nothing more today than we did on July 3 when my mom was diagnosed. It is incredibly frustrating. The lack of information and tests without results has really worn on my mom. She's ready to call it quits. Her onocologist referred her to a radiation specialist. We met with him on Tuesday. He helped fill some gaps and understand information that has been given by the two oncologists we've met before. He also presented some new questions.

For example, he doesn't believe the lung cancer has spread to the groin. Her oncologist doubted it too, but wanted the biopsy to rule it out/learn what it was. I mentioned that we had questioned whether it was lung cancer at all and if it was actually a reoccurance of melanoma that was removed in 2006. No treatment other than surgery was done at that time. I had the report, so I showed it to him. Within it, a biopsy taken from a lymph node in her breast revealed histiocytosis. My mom doesn't recall any mention of it then or any time since. This could be relevant, because my aunt (her sister) also has histocytosis. When affected by this disease, lymph nodes can be enlarged and show abnormal on PET Scans. This could be why all lymph nodes show activity in my mom's scan. This doctor believes my mom is Stage IIIB, just as her Thoracic Surgeon indicated. He wants to do a MRI scan of her brain to rule out metastasis. If it is positive for cancer, then chemotherapy wouldn't be very beneficial. Radiation could better control tumors preventing seizures and stroke and prolong quality of life. If it is negative, then a combination of chemotherapy and radition would benefit her most. With successful treatment her prognosis goes up to five years. It more than doubles compared to chemotherapy alone. However, my mom has also been diagnosed, this year, with Lupus and Mixed Connective Tissue Disease. Chemo can actually improve those symptoms, but Radiation can cause additional side effects. The skin can have a bad reaction. The affect could be immediate or not for 5-10 years. He believes it is worth the risk.

Radiation is a huge commitment. There is no treatment available in Pahrump. She would have to come to Vegas 5 days a week for 6 weeks. It has it's own set of side effects. And she's already been heavily affected by the Chemo. So much so, prior to meeting with the radiation doctor she was leaning toward stopping treatment if she was not feeling better. Since that meeting, her hope has been renewed (though, she's not feeling any better). The possibility of being cured (Stage IIIB) vs. a terminal disease (Stage IV) makes a difference in her fight. Quality of life is most important to her, but she also would like to see her granddaughter toddle around. She understands that her prognosis is based on statistics and there are exceptions to the rule, but she is no stranger to the reality of the situation.

I'm relieved to have another doctor involved. The more the merrier, having another opinion or perspective can make a huge difference. I want to explore all options and provide her with the most information that will allow her to decide what's best for her needs. It is her, after all, that has to go through all the poking and prodding, the tests, the appointments, the fear, the side effects, etc. The rest of us are along for the ride. We have agreed to support any decision she chooses.

Tuesday she goes for the MRI. Thankfully, we won't wait long for those results. We will meet with the radiation doctor later that afternoon to discuss the results and formulate a plan to move forward. Moving forward with conclusive evidence is all I ask. I can cope with the better or worse. The unknown is most frightening.

Enough Already

August 12, 2014
Last Wednesday, I was headed into work and as luck would have it I was rear ended while waiting to merge onto I-15. Thankfully, I didn't have much damage to my vehicle and I wasn't badly injured. Still, it was the last thing I needed. It was a 19 year old girl that hit me, distracted by her cell phone. She admitted fault and the insurance company has accepted liability. I'll take my car in next week to get it repaired and I'll have a rental to get me around.

Frank took me to the ER just to be sure I was ok. X-rays checked out fine. They prescribed pain meds and muscle relaxers. Which I haven't been able to take because I need to be able to drive. Fortunately, I didn't get intense stiffness after the accident. It's mainly a killer headache that hasn't gone away and left shoulder pain and sore neck. I need to follow up with a doctor, but I don't know when I'll squeeze that in. I'll just add it to the ever growing to do list.

The car accident 7.5 months ago is when things started to go spectacularly shitty, hopefully, this accident puts an end to it. Lesson learned - no more silver vehicles; apparently, it makes my cars appear to be invisible or a target. Seriously annoyed that I couldn't even get 10,000 on the odometer before my new car was wrecked.

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.

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