Bye-Bye Summer of 2024 (and Good Riddance!)

I'm so sorry this update is so long & so overdue, but the last 3 months have been anything but relaxing and carefree. Although, I did find a few moments of fun - here and there, it was mostly stressful and chaotic. Therefore, I'm just going to give you the "highlights" of both my health & personal life - by month.

June

- Nephrologist (kidney doctor) appointment on June 6. My kidneys never recovered from the treatments that ended in January and put me in the hospital in February. Therefore, I now have Stage 4 Chronic Kidney Disease. It's not a death sentence, but I need to be careful about what I eat and if they get any worse, it may mean dialysis treatments.

- On June 7, my elementary school celebrated its 100 birthday!!! They invited alumni and current student and their families. And what I wanted most was to see ... the inside. There were so many changes, but many memories, too. 

- Oncology (cancer doctor) appointment on June 10. We discussed next steps, and she felt that we should look again at immunotherapy since we never got started due to my hospital stay in February. I agreed and I signed a bunch of papers for them to get approval from my insurance company. My CA125 went from 324 to 453. Considering I was not in treatment, I didn't think that was too bad an increase. 

- I got up at 5 AM to watch the livestream of my "niece" as she graduated high school.

- I was invited to attend a small, dinner party to celebrate one of my bff's mother's 95th birthday. Lots of laughs.

- Attended the funeral of a teal sister in Christ. We only met last fall, but the Lord called her home. I don't like this. We need to find a cure for all cancers!!!

- End of the month, another bff and her 2 children arrived from Germany. It was good to see them and chauffer them to a meeting point with her brother.

July

- Since it had been a while, my oncologist ordered a CT scan. I had that done on July 3. The results were that not much, if anything, had changed. Thank you, God!!!

- Attended another funeral on July 6 for my former youth director's wife. She was the sweetest, creative, loving mother, grandmother, friend, and devoted follower of Christ. Her death was quite sudden, but I have no doubt she is enjoying sitting at the feet of Jesus in heaven.

- Oncology appointment on July 11. Still waiting for insurance to approve the immunology treatment -- UGH!!! And my CA125 went from 453 to 617. Not great, but again, I was not on treatments, so I expected it to go up.

- Attended a Phillies game as a guest of the National Ovarian Cancer Coalition (NOCC). Friends of the NOCC get a suite and treat survivors to a game. They played the Athletics, and they won 11-5. It was a good game and a lot of fun!!!

- And way too soon, it was time to meet up with my bff's brother and take my friend and her children back to the airport to fly back home to Germany. Thank goodness for technology!!! Even though she is miles away, we can keep in touch through text and FaceTime.

- Unfortunately, I could not attend She Speaks in person this year. However, they offer an online option. It was 2-days of worship, speakers and encouragement to those of us who write, speak, and lead ministries. I don't know if I'll ever get back to attending in person, but I'm so thankfully again that technology allows me to attend from home.

- Attended a Triple Threat Theater (TTT) performance of Legally Blonde Jr.!!! Great student theater production.

- I traveled to Honey Brook, PA to help in the Tuck Shop during registration for the 1st week of Cedarbrook Camp Mid-Atlantic. It was great to see my "birdie" friends.

- Another nephrology appointment. Status quo. No significant changes with my kidneys.

- Attended another TTT performance of Seussical Jr.!!! What a fun afternoon!!!

- Watch the opening of the Summer Olympics. Some creative moments like the lighting of the flame, but some very controversial moments, too. I just love watching the athletes going for the gold!!! Snoop Dogg was fun to watch, too!!!

August

- Attended another TTT performance of Finding Nemo Jr.!!! Another fun afternoon!!!

** Now begins the craziness!!! Hold on to your devices because there are a lot of moving parts. **

- On Monday, the 12th, my bff and her daughter flew back to the states to attend university. I'm so thankful that they had a long layover, and that Philly airport has a pass system that allows you to get through security to meet someone, etc. We spent several hours together before their next flight departed. 

- Right around my birthday on the 11th, I started feeling off and I just felt my body was not right. I was having unusual symptoms. So, I called my oncologist's office, and they were able to see me on the afternoon of August 13. Come to find out I had a polyp that had to be removed and sent to the lab for testing. I'm glad I was on "vacation" that week because after the procedure, I felt better, but still lacked any energy to do the things I wanted to get done during my time off.

- On the 19th, I had my every 6th month appointment with my hematologist (blood doctor). No changes. See ya in 6 months!!!

- Thankfully, I had taken 2 weeks "vacation." Because on Tuesday morning, my Dad got disoriented in the bathroom and fell. He bumped his elbow, and it was bleeding. I had to call 911 and they transported him to the hospital. They tested him, etc. but could not find any reason why he fell. However, he was terribly disoriented because you see, my father is 93 years old and has never been admitted to a hospital. However, he now was not strong enough to walk and could no longer feed himself. After a few days in the hospital, he was transferred to a rehab facility. Obviously, we would love for him to get strong enough to come home, but we now faced with looking at long-term options as well.

- Also, during these 2 weeks, I was feeling extremely exhausted, and non-stop nausea. I was only eating enough to keep me going. Plus, I developed a cough, and I didn't have a cold, the flu, etc. I was miserable. But I kept pushing through. It was only by the Lord's strength that I was making it each day.

- On the 22nd, I had another oncology appointment. I found out that my insurance company declined the immunology treatment. My doctor had appealed and still the answer was no. The only other option was to seek compassionate care from the manufacturer of the drug. So again, I had to fill out paperwork to prove that I wasn't a millionaire and could afford the treatment. I also found out that the polyp that was removed was my low-grade ovarian cancer showing up. This provided a few more treatment options - including taking a daily pill. My CA125 at this appointment went from 617 to 905. Now that was a BIG jump!!! 

- To make sure my Dad was settled in the rehab facility, I took another week of "vacation." Then on the 28th, I was having the worst day, but I needed to visit my Dad. I don't know how I drove to the rehab facility, but I felt awful and had no idea why. While visiting my Dad, my phone rang and it was my nephrologist's office. The nurse verified who I was, she asked how I was feeling. I believe I used words like horrible, and awful. She told me that they looked over my recent blood work and were not happy with some of the results. She told me that I had too much calcium in my blood. What??? I've never heard of that. She advised that I need to go to the ER asap. I asked could it wait a day??? She said that if I didn't go, the longer I waited, I could die!!! Okie dokie!!! I said good-bye to my Dad and told him I need to go to the hospital, and I wouldn't see him for a couple of days. 

I then headed home, packed a few things, called a bff to see if she could bring my sister dinners while I was in the hospital, and drove myself to the ER. I was so exhausted by the time I walked from the parking garage the ER. I was finally taken to an ER room to get my vitals and to get the IV into my arm. They took some blood from the IV for testing. They ordered some food for me and I watched TV and talked to nurses and doctors. Finally, I was admitted and taken to a room. It was a step up from Al's Cove in February, but it was still considered in the Emergency Department. It was a box with a bed. No windows and the bathroom was across the hall. The only good thing was it was private!!!

After they I received the initial results of the blood tests, I realized my calcium was pretty high. This condition is called hypercalcemia. The normal range is below 10 and my reading was 15!!! Overnight, I tossed by cookies several times, was hooked up to IV fluid, and still felt yucky. During the day on Thursday, they took more blood and gave me a total of 4 injections to counter the high calcium. I just felt drained, I didn't eat all day for fear of throwing up again. They also did a CT scan, and it looked like I had some fluid in the pleural region around my lungs. So, the pulmonology team came to check on me, too. At that point, after doing an ultrasound, they decided there was not a large enough pocket to drain. At times there was several doctors, and med students in my room. I always seem to attract a crowd. LOL!!! They also wanted me to get a bone scan. Finally, on Saturday, my calcium level had gone down enough that I could go home. Thank you, Jesus!!!

September - Ovarian Cancer Awareness Month!!!

This was the verse of the day from KLOVE my first morning home from the hospital.

Of course, I took another week of "vacation" to recover from my hospital stay. During this week, I started feeling a little better, but I still had the pesky cough, and it wasn't getting any better. 

- Although it wasn't a bright sunny day, Saturday, September 7th was the Together in Teal Run/Walk for Ovarian Cancer. The event was at a new venue, The Philadelphia Navy Yard. I didn't know how I was going to make it, but I was determined to walk at least a mile. My friend Ginny and her team The Lucky Charmz adopted me and made the first 1/2 mile much easier. Then those walking the longer 5k distance went one way and those walking just a mile went another. That last 1/2 mile was really long, but I just walked for a bit, took a rest, walked some more, caught my breath, and walked some more. I didn't break any land speed records, but I finished the mile!!! I was so proud of finishing!!! And I am so thankful that so many of you donated to my page. I have until September 30 to make my goal. And even if I don't make it, know that you are making a difference!!! (link below)

- I returned to work on Monday the 9th. My poor work computer was so confused. It once again had to work. After several hours and many reboots, I was finally able to do my job. That afternoon, I went to my primary care doctor for a "hospital follow-up." She was concerned about my thyroid level but advised that could be due to the illness. I also complained that I was very short of breath and had trouble going up and down stairs and walking long distances. She said she would contact pulmonary to get me in to see what was going on.

The next day, the pulmonary department called, and I made an appointment for the same day as my bone scan. 

- I had another nephrology appointment on Thursday the 12th. At that point everything was fairly good. He took me off some of my meds and that's ok with me.

- Finally, the day for my pulmonary appointment and the bone scan. I arrived at the hospital and slowly walked from the parking garage to admissions. After I was "admitted," I headed to the 6th floor and the pulmonary department. After being taken to the room for the procedure. The nurse/tech asked me to put a lovely hospital gown on. Then asked me some questions. We got to the question of whether I was on blood thinner. I answered honestly, yes. Well, that ended my chance of getting relief that day. Unfortunately, they cannot do the procedure if you are on blood thinner, and you need to be off it for 48 hours. Bummer!!! The doctor did come in and do an ultrasound to see my lungs and the pleural area. Yes, I did have enough fluid to drain. I would just need to make another appointment and stop the blood thinner for a couple of days. 

Now I had plenty of time to get down to nuclear medicine for the bone scan. Thankfully, they were able to take me early. They injected me with the isotopes and then I had to wait 2 hours before the scan. I headed to the Cooper Cafeteria to get a cup of tea and read. All to soon, I headed back to the waiting area, and I was called for the scan. It was very similar to a CT scan or PET scan, but obviously they are looking at your bones. The actual scan takes about 20-25 minutes. Once over, I was advised that I had no restrictions, and my doctor would have the results by the end of the day, and I would receive them in my portal the next day. YEAH!!!

- That night, I received a call from the Virtual Lourdes Hospital. They had just brought my Dad from the rehab center back to the hospital. Apparently, he was very agitated, and they were unable to calm him down. I decided to stay home and visit the following day. When I arrived, he was fast asleep and didn't wake up while I was there. The doctor called me and advised he had an infection, and they were treating him with antibiotics.

- Thursday the 19th was my oncology appointment. After discussing starting treatment with the immunotherapy that day, I broke down into tears and asked if we could do the pill option. I was afraid that if something happened to me with the side effects, who would take care of my Dad or my sister? She understood and we decided to try the pill option for several months. And although this option doesn't have the more immediate response, sometimes slow and steady wins the race. At this appointment, my CA125 went from 905 to 1036. YIKES!!! It's never been this high!!!

While relaxing at home that afternoon, my nephrologist left a message that he wasn't happy with my blood work and wanted me to retest on Monday morning. Don't they have enough of my blood??? While I was getting ready to call my employer and ask if I could either come in late or leave early on Monday, my phone rang, and it was Cooper's Endocrinology department wanting to make an appointment. The only option they gave was Monday morning. Now, I have another "ist!!!" I called my manager and advised I needed to be off on Monday due to a last minute doctor appointment. So thankful to work where I do. 

- On Friday the 20th, I finally had my rescheduled pulmonary appointment!!! The procedure went well and they drained 1.5L from around my left lung!!! Imagine strapped about 2.5lbs around your chest and going about your daily activities. That's what I was dealing with every day. I still have a little of the cough, especially at night, or when I laugh, but I was told that is my lung expanding back to its original size and function. Every day I feel better and can breath normally!!! And although my right pleural effusion still exists, there was not a big enough pocket to drain. I'll just need to have the doctor's keep checking it. I don't want it to get to the awful stage again.

And Dad was transferred back to the rehab facility.

- Finally, we are caught up to Monday, September 23. I went and gave more blood in the morning, then went home and had some breakfast. I then went to meet my endocrinologist. Since this was the first meeting, I had to answer a lot of questions. We discussed the fact the although my calcium level was still slightly elevated, it wasn't life threatening, but they would be monitoring it. Many other causes of the high calcium were mostly ruled out. He wants me to get more blood work when I get my normal blood work next month and I'll see him back in 2 months. 

Are you as exhausted as I am???

Prayer requests:

- That the pill will start working and not cause any weird side effects.

- That every day my breathing and energy levels increase.

- That my Dad will gain strength.

Here is the link if you would like to donate to my Together in Teal Run/Walk page:

Philadelphia Together in Teal - Sandy Perry (onecause.com)

Only by His Strength,

Sandy

April ... Showers of Blessings

Hello Faithful Friends -

I wanted to catch you up with what's been going on in my life in the month of April. And it's been quite a month!!! 

After a good appointment with the nephrologist and his blessing to travel, I came home the next and booked my flights to Orlando to attend the wedding of my dearest & long time friend's daughter. Being the good travel agent, I had already booked my hotel. I also booked my rental car. I also made plans to see long-time friends that had moved to Florida and of course, spend a day in EPCOT for their Flower & Garden Festival. 

After making sure my family was well taken care of, I boarded my flight on the afternoon of April 5th. I arrived in the Sunshine State. After days & weeks of rainy days in NJ, what a blessing to feel the warm sun on my face!!! I grabbed my luggage, my car rental, and followed what the GPS indicated was the "shortest" route to my hotel. For one, it was a Friday afternoon when I arrived and it was rush hour and the route put me past Sea World and even going that slow, I still got lost because it seemed like every road was under construction. Finally, I got to my hotel and my room, then turned around and went out to dinner. I had found a gift card for this particular steakhouse that my sister & I we like when we went to Houston. And it was only about 10 minutes from the hotel. With the gift card, my steak dinner ended up being less than $10!!! Another blessing!!!

After a good night of sleep and a lazy Saturday morning, I got ready to go to the wedding. The venue was about 45 minutes northwest of Orlando. The place was back a dirt road that had you wondering, did I miss a turn? But I had not missed a turn, in fact, I was early and had to wait to be seated so they could finish taking pictures. It was a beautiful, small wedding with family & close friends. The real fun was finding my way out of the parking area in almost complete darkness. I'm so thankful that phones have a flashlight!!!

The next morning, the happy couple planned a small, casual brunch for the out-of-towners at the same venue. It was nice chatting with friends & family. I then drove back to the hotel and decided I would find a nice chaise lounge by the pool, read and increase my vitamin D intake. Unfortunately, the chaise lounge was not comfortable, and the sun was really hot!!! So, what does a girl do? Go back to her room and take a much-needed nap!!! Pillow blessings!!! Thankfully, I set an alarm to get up and freshen up. I was going to Saratoga Springs to meet with friends for a casual dinner. They love Disney and had spent the weekend doing all 4 parks. After eating dinner by the pool and reminiscing about when they lived in NJ, I drove back to my hotel, and they drove back home near West Palm Beach. Thank you, Lord, for the blessing of friends!!!

Monday was scheduled to be EPCOT day. The hotel's free shuttle departed at 7:45am and after picking up passengers at several other hotels, arrived about 8:15am. First order of business after entering the park was to head for scooter rental. With my leg issues, I knew walking all day would cause a huge problem. Since I was on a scooter, but not staying at an official Disney hotel, I only got a 15-minute head start on the rest of the park guests. Zip-a-dee-do-dah --- I was off to explore. 

In doing a lot of research before traveling, I found out that Christian recording artist, Crowder, was performing 3 mini concerts that evening. And in order to get reserved seating, you had to buy in to a dining package at certain restaurants in the park. I was not looking for a large sit-down dinner or lunch. However, there was only 1 restaurant that didn't require advance reservations -- The Regal Eagle Smokehouse. So, I scootered there first thing, but they didn't open until almost noon. So, I just wandered/rolled around and enjoyed the beautiful day, the beautiful flowers, and looked for all the Disney character topiaries scattered throughout the park. I found all but one.

Around noon, I went back to the Regal Eagle. In order to get the reserved seating, you had to order and eat your meal at that point in time. So, instead of having dinner there, I had lunch and received my reserved ticket for the 6:45pm concert. Lunch for me was a brisket sandwich, mac & cheese, a fruity drink, and dessert was a smores brownie. YUM!!! After lunch, I continued my travels through all the different countries represented at EPCOT, did some rides, and borrowed someone's glasses to catch a glimpse of the solar eclipse. The concert was great, and I only wished it had been longer. It made me really miss my younger days when I went to many Christian concerts. The night ended with fireworks and dodging everyone leaving the park to return my scooter. Then, it was a long walk and a long wait for the shuttle to return back to the hotel. Thank you, Lord, for blessing me with a day at EPCOT!!!

Tuesday was my day to return home. Check out time was noon, but my flight was not until almost 5pm. I certainly did not want to spend 4 hours in the airport. So, I looked for free things to do nearby. I found a park in Kissimmee that had a kitschy "statue" called Monument of States. After finding parking and taking some pictures, I took a walk out to the lake in the park and then sat in the sun and watched children play in the playground. Finally, it was time to set the GPS to go back to the airport. I think the GPS was playing games with me because I ended up far away from the terminal and then had to reprogram the GPS and weave my way back to return my car, check my bags, wait to go through security, and then find my gate and board the plane. So blessed!!!

On Thursday morning, I had my oncology appointment to determine what the next treatment should be and when it should start. My numbers had not miraculously gone down significantly, and my lower legs were still very puffy. She gave me about 4 different options to look over and said she didn't want to see me until after my nephrologist appointment in JUNE!!! So, I like saying (in a British accent) "I'm on a treatment holiday!" In fact, I've been on holiday since January!!! I'm praying that during this holiday God will heal my kidneys and provide me with some much need rest and time to do other things. Blessed!!!

Before I went to Florida, my cousin contacted me to let me know she would be in NJ and would love to get together. So, we met on Friday at a diner halfway between where she was visiting her aunt & uncle and me. We had a lovely time catching up and vowed not to let so much time pass between visits.

Monday morning was my 6-month hematology appointment. When my doctor arrived, we chatted about my hospital stay, etc. She also told me that the small lump on my arm was actually a blood clot. YIKES!!! In the weeks following, it has dissipated. I've had some other bumps and bruises, but I'm like a Timex watch, "I take a licking and keep on ticking!" LOL!!! Blessed with a great medical team!

I finally, had to go back to work and start earning some money. It was so hard to get back in the swing of things. Thankful & blessed that I only worked 2 days that week. Then it was off to Lancaster, PA on Friday afternoon with my car loaded with our business stuff to sell at a regional quilting event on Saturday morning. We did fairly well. However, after loading up my car to drive home, I had to get a jump to start my car. Thanks, KJW!!! That started several visits to my local mechanic. I now have a new battery, alternator, and belt. My little Toyota still needs some work, but at least I won't get stuck anywhere with a dead battery!!! Again, thankful & blessed with friends who help me.

The following Saturday, a friend invited me to their church's Ladies High Tea. The theme was Wonderland. As in Alice in Wonderland, the White Rabbit, the Mad Hatter, and the Cheshire Cat. The decorations were fabulous, and the goodies were yummy. We did a fun craft, sang a bit, and listened to a wonderful message. A blessed afternoon!

That ended my April Showers of Blessings. And already in May, I have been busy & blessed. But I'll save that for my next blog post after my nephrologist & oncologist visits in the beginning of June.

Until then, I'm going to leave you with 2 songs. The first one is in memory of a beautiful, Christian artist - Mandisa. We may never understand why the Lord chose to call her home to heaven, but I will miss her fabulous songs. I wish I was able to see her in concert. My favorite Mandisa song is "Overcomer." She released that song shortly after I began my cancer journey. This video is of Mandisa singing "Stronger" in studio and reflects where I am now in my journey.

My 2nd song is related to the theme of this blog post. It's a fun & upbeat song by the band "Cain" called "I'm So Blessed." Enjoy!!!

Prayer Requests:

May 31 - Labs - Pray for good numbers

June 6 - Nephrologist (kidney) appointment - 10am

June 10 - Oncologist appointment - 8:30am - Pray for wisdom to choose the next round of treatments.

Only by His Strength,

Sandy

My God Can

*** WARNING --- Long read!!! Grab a favorite drink and a cookie or two!!! ***

Over the past few months, I have tried to sit and write, but something always took my attention away from my joy of writing. When I went back to read my last blog so I would know where I left off, I am amazed at all that the Lord has done and how He has brought me through each and every bump, pothole, and twisting road on this journey. The joy, the pain, and everything in between.

When I last blogged, I was celebrating my 10-year cancerversary. On November 30, I had the Part B (Avastin only) part of my treatment. If I remember correctly, I still had some bleeding issues when they de-accessed my port, but thankfully it did resolve without me going to the ER!!! My next appointment was on December 21. 

On December 14, I escorted my Dad to the senior citizen luncheon at my former church. It was a wonderful meal & program plus I was able to see many friends who were volunteering to serve. That evening, our church's Women's Ministry had a Night of Service. We made up snack bags with personal note and no-sew blankets for a couple of ministries in Camden, NJ. A fun and relaxing way to celebrate Christmas -- serve others!!! 

I had my labs on December 19 and was disappointed when my CA-125 went up from 137 in November to 207!!!!! WHAT??? That is totally the wrong direction! A PET scan was ordered, and the appointment was made for January 5. After my appointment, I headed up to infusion and had my Part A (Doxil & Avastin) treatment. Everything seemed to go well with the infusion, and I didn't even bleed much after I was done.

Christmas was extremely low key. We watched football & I cooked dinner. Crockpot to the rescue again!!! Of course, I took the week off between Christmas & New Year to "get stuff done" around the house, but I caught a cold and I had absolutely no ambition or desire to leave my comfy chair. I think I overdosed on college football bowl games!!! Of course, I went back to work on January 2 bummed that I got nothing done. 

My next infusion was on January 4. It was just my part B (Avastin only) treatment, so it was a quick in and out. Friday morning was my PET scan. The prep took longer than the actual test and since it was Friday, I didn't think I would get the results in my portal until at least Monday or Tuesday. Boy was I was mistaken!!! I was sitting in my chair watching Sunday night football and in pops my PET scan results. I see many of my fellow survivors hesitant to open scan reports, etc., but that's never been me. I clicked the link and read the report. In my humble opinion, it didn't look too bad. The following week, I went through several tissue boxes due to horrible nosebleeds. I was so over this treatment, the schedule, the frequent nosebleeds, plus all the numbers that should be going down were going up or staying the same.

On Saturday, January 13, the camping ministry that I've been involved with, now Cedarbrook Camp Mid-Atlantic. We celebrated 40 years of a Christ-centered overnight camping experience for boys & girls who have completed 1st grade through 12th grade. Although I can no longer commit to a full week of camp, the friends ("birds") that I've made over the past 39 years will forever be in my heart. 

"Blue Jay" 🩷 CCMA!!!

When I got to my oncologist's appointment on January 18, she concluded the same thing -- my days of Doxil & Avastin were over and we would be moving to a new treatment. Plus, my CA-125 went up again to 264. This new treatment would be different because it was immunotherapy. I would be getting Pembrolizumab better known as Keytruda infusions once every 21 days and I would be taking one Levatinab (Lenvima) pill daily. Of course, all of this needed to be approved by my insurance. Once approved, then I would need to deal with a specialty pharmacy to get delivery of these pills.

I don't know why, but I had a terrible feeling about this treatment. It plunged me into a bit of depression. I felt off. I prayed. I just could seem to shake this down feeling. Thankfully, the last weekend of January was my company's annual meeting in Atlanta. I flew out late Friday morning. Since most of us work from home, it was great to see my co-workers in person. We were "wined & dined" all weekend. Although I didn't win any prizes, I still had a great time. On Sunday, I spent the afternoon with our "Georgia family." As always, it was a great time of fun & fellowship. But all too soon, they were taking me back to the airport for my late flight home. Getting up for work on Monday morning was extremely difficult, but I pushed through that day and Tuesday, and Wednesday. However, I had to take Thursday off. My mind & body was exhausted. I'm so thankful I work for a company that treats me & my health as important. 

Sometime during the next week, I developed a very itchy red rash on my left leg and that leg also started swelling. Of course, the rash was the most annoying when I got in bed at night. Some nights it took me over an hour and lots of lotion to calm it down enough for me to fall asleep. And then the worst thing happened, my right leg felt left out, and the rash broke out there, too!!! I was a mess. Exhausted 24/7. Plus, the lotion didn't really seem to be working. Finally, I called my doctor's office and made an appointment. She was not happy with the leg swelling and set me up for an urgent ultrasound of my legs that afternoon to make sure I did not have any blood clots. She also wanted me to get some blood work done. So, I went home, grabbed the orders for the 12 blood tests my oncologist ordered and drove to the lab. Thankfully, I didn't need to wait too long for them to take my blood. I then drove back to about the same location for the ultrasound. By the time I got there, I had a message on my phone from the lab. Unfortunately, they missed getting enough blood for all of the tests and could I come back before 2pm when they close? I called them back and said that was impossible. They asked if I could come back on Saturday morning. They advised what to do. When I arrived on Saturday, the lab was packed full of people. However, I had priority. I was escorted back, my blood was taken, and I left. I'm sure people wondered why I got the special treatment and didn't have to wait. I could have shown them the bruises, but I just left and thanked God that I didn't have to wait!!! 

My doctor also gave me a prescription for something similar to Benadryl. After taking that for several days, the rash disappeared, and I slept a little bit better. However, the swelling in my legs did not disappear. And, by the way, I did not have any blood clots. 

I finally received the Levima pills a couple of days prior to my oncology appointment on Thursday, February 15. I decided I would take the first pill the morning of what I thought would be my first infusion of Keytruda. Thursday morning came, I took the pill along with my other meds and left for my appointment and infusion. Well, I knew my CA-125 had gone up to 280 and the protein in my urine was still bad, but I was advised that my Creatinine level was high and that they could not start my new treatment that day. However, they did want me to go up to infusion and get some hydration (saline solution) plus, I would need to get more bloodwork the following week because they were moving my infusion to the following Thursday. My oncologist also gave me a referral to a nephrologist. I definitely had to look up what that meant -- kidney doctor. YIKES!!! So, I called when I got home, and the first appointment was on March 21. 

Since I was going to the podiatrist for a toe problem on Tuesday, I could just go to Cooper's lab in that building. Yeah, kill two birds with one stone! I received the results the following morning. I noticed that my platelet count was fairly low and some of the other numbers were not in normal ranges. Then around noon, my oncologist's nurse called and advised me that they thought I should get to the emergency room because they thought I had Acute Kidney Disease (AKD). This was not news I wanted or needed to hear. What made it harder is that I am caregiver for my Dad, my sister, and myself. Thankfully, we have great neighbors and friends that can fill in when I'm not around.

My medical vacation began on the afternoon of February 21. After waiting several hours in the hall of the ER, I was finally moved to an exam room which at least had a TV that I could change the channel. Of course, they took more blood, did a chest x-ray, EKG, and another ultrasound of my legs. Finally, a nurse manager came and said they were trying to find a room for me. Great, the hospital is overbooked!!! She asked if I would be ok with a "room in the hall." What??? She assured me that it would have privacy. I reluctantly said OK. So, at 7am the next morning, I was wheeled from the ER to the Equipment Alcove on the 9th floor of the Pavillion Tower. Now this was slightly better than a broom closet. It was really fun ordering meals to be brought to an overflow room with no windows or door. After seeing doctor after doctor throughout the morning, it was determined from the chest x-ray & a CT scan that I had a large right pleural effusion that needed to be drained. I've been down that road before, so I wasn't too upset. I figured it would take a day, maybe two to drain and I could go home on Sunday. Well, I was rolled up to the pulmonary floor and prepped for the procedure. When the doctor finally arrived, they looked and looked for the fluid, but it was 99% gone. No chest tube for me. God had miraculously removed the fluid!!! Hallelujah! I also had a Kidney & Bladder ultrasound that day. I was released from both the pulmonary team & the cardiac team. 

In order to make my stay a little more "fun," I renamed the Equipment Alcove to Al's Cove. It sounded much better and since I didn't know when or if I would be moved, but I wanted a friendly place. Too bad I could not paint the walls with a tropical scene or bring in palm trees!!! Except for taking more of my blood, Saturday was a boring day. My main excitement was walking around the hall and hearing that they might have found me a real room!!! Then around 2am, the nurse woke me up to say they had a room for me. It would be a shared room in the other tower. After some deliberation, as crazy as it seems, I decided to stay in Al's Cove. It wasn't the best, but at least it was private. 

L-R: My call button - Penny - My "private" bathroom

On Sunday morning, I met with a nephrologist regarding my kidney function. He had looked at all my numbers and tests and determined that I had a classic case of Thrombotic Microangiopathy (TMA). What a mouthful!!! He also said I would need a kidney biopsy to verify the diagnosis. Therefore, I would need to be off my blood thinner for a least 24-48 hours before the test and of course, no food after midnight. Plus, my blood pressure would need to be much lower than it had been reading since I stepped foot into the hospital. About 1pm, I found out that a room on the same floor would be open and it would be MINE!!! I felt so blessed to have a private room with a bathroom, a window, and a TV. Thankfully, a friend came to visit and brought me my laptop, some necessities, some hugs and fellowship. 

Overnight, I was awoken several times so they could draw more blood, my favorite thing. NOT!!! Usually, you start seeing doctors around 9am, but not me. The first doctor I saw was my oncologist around 7am. Then it was a parade of doctors throughout the morning. I think I saw at least 5 before noon. And what do they all do??? Listen to your lungs and your heart and ask how you are. I wish they would get together and decide who would see me on which day. But then again, I would be bored. I also got to talk to a few more first year medical school students.

This is what I wrote on my Facebook page on Tuesday - "Unfortunately, I did not have the kidney biopsy today due to my blood pressure being too high. Trust me, I was not happy. I was frustrated and missing my family and cried ugly tears with the world's smallest tissues to wipe them away!!! They have now put me on some additional BP meds that will hopefully keep my BP lower for the rest of today and they have already rescheduled the biopsy for tomorrow AM." So, I ordered some lunch and resumed my boring life in the hospital and prayed that my BP would be low enough on Wednesday. So of course, no food after midnight, but I did save something from dinner so I could eat around 11pm.

Wednesday morning, my BP was lower, but not where it really needed to be. So, they gave me some additional meds through my IV and it did get my BP low enough that I could get the biopsy. I was rolled down to the radiology department where I waited and waited and waited. Finally, it was my turn to get the biopsy. After getting comfortable on the table, I was administered the stuff that puts you in la la land. It's called conscious sedation. It was a lovely time. Finally, I heard them say, "Put a band-aid on it." I thought that was code for gauze and tape. When I finally got back to my room. I reached back and found out that it truly was a regular band-aid. However, it was not even a fun one, just a boring brownish color. Oh well, biopsy over and time to order some food!!! I also found out that they send the biopsy out to another lab, and it would be about a week until they had the results. Of course, my nephrologist appointment wasn't until March 21. Oh, the waiting. Oh, the time to worry. Oh, the time to trust the Lord!!!

Now it was time to go HOME!!! No more tests. No more blood draws. No more hospital food. And no more talking to a bazillion doctors every day!!! I finally was told I was going to be released around 8pm. Really??? Did I really want to leave in the middle of the night??? And then my decision was made. I got a bloody nose, and my BP went sky high. By the time my BP went down, and my nose stopped bleeding, I decided to stay another night at this "resort." In the morning, I had another nosebleed and they decided to do a blood transfusion to give my numbers a boost before going home. After finding out my blood type, and getting a match, they hooked me up and started the transfusion. It would take a couple of hours, but then I could go home.

I was sitting in the chair, and I moved my hand that had the IV in it to put the footrest up and guess what happened??? My IV started leaking. YIKES!!! I called the nurse back and they stopped the transfusion, cleaned me up, and removed the IV. Then, they had to bring in the most experienced nurse in doing IVs and it took her 3 times. Finally, we got the blood flowing again. And then, it was time to get my release papers and really go home!!! It's true. There's no place like home.

This is my left arm & hand the day I left the hospital!!!

I had already called work and let them know I would be out for the next week to recover. I also had an oncology appointment on March 7 to find out what's next for my cancer journey. On Monday morning, believe it or not, I went to get my blood drawn. The poor phlebotomist had a real challenge find a vein to access. I received my numbers in my portal the following day. They didn't look too bad to me. Even my CA-125 went down to 267 and that was incredible since I haven't had any sort of treatment since the beginning of January. During my appointment, my oncologist also did a very painful biopsy and then sent me up to infusion to receive some additional hydration. I should get the results from that biopsy at my next appointment on April 11 along with a new treatment plan. My oncologist also recommended that I not go back to work until after my appointment with the nephrologist.

The next day, I had my hospital follow-up appointment with my primary care physician. We talked through my BP issues, and I found out that I have a systolic heart murmur. Who knew??? We'll just need to monitor it and make sure it doesn't get any worse.

The two weeks leading up to my nephrologist appointment in some ways went quickly and, in some ways, dragged. It was great to be able to take a long nap every day, do my taxes, and catch up with some paperwork.

Finally, nephrologist appointment day!!! What would the results of the biopsy show? What would I need to do? In my mind, I play a game called worst case scenario. I think what would be the worst thing that could happen, then anything less is great. Well, it was more than great it was truly answered prayer. The biopsy confirmed what they thought in the hospital, I have Thrombotic Microangiopathy (TMA). Apparently, my Creatinine level peaked in the hospital and from my last blood test, it is on the way down. And that is a very good thing!!! So, he changed some of my medications and said see ya in 3 months. Praise the Lord!!!

Now you are all caught up with what's been going on in my life. Outside of all the medical stuff, I have been doing research on a book idea that the Lord gave me, taking care of my Dad & sister, and writing this blog post. I've probably forgotten a few details, but I have not forgotten all the prayers that were said on my behalf and all the encouragement through texts and Facebook messages.

You now know what I've been going through. I don't know what you are going through, but I pray that you would trust God with whatever you are going through. I love this song that came out the beginning of January by Katy Nicole & Naomi Raine. It's called "My God Can." Please take a few minutes and really listen to the message of this beautiful song. It also contains my life verse -- Philippians 4:13.

Prayer Requests:

April 4 - Labs - Please pray for a lower Creatinine level and a lower CA-125.

April 11 - Oncologist appointment - Please pray for wisdom regarding a new treatment regime.

Only by His strength,

Sandy

The Good, The Bad, and The ER

On the morning of Thursday, November 2, I went for my CT scan. I really did not know how to pray. Of course, I wanted a clear or fairly clear scan, but since my numbers weren't going down, I was hoping something would "show up" that could be easily "cured/fixed/taken care of." Unfortunately, I was unable to get an appointment with regular Cooper Radiology and was given an appointment with University Radiology. I picked up the yucky contrast on Halloween. I guess that was my trick or treating for the day. I drank one bottle on Wednesday night at Bible Study and one bottle for breakfast the next morning. Then drank a little bit more once there. Since this wasn't my normal radiology location, they would not access my port and had to play hide and go seek with my veins. After trying my right elbow with no success, they finally found a vein in my right hand and the procedure could begin. The actual scan went well, but of course, I sneezed and hoped I didn't mess up the image. The tech said all looked good and I was able to leave and head for the bathroom, then go home and EAT!!! The tech advised that I would probably get results in 24-48 hours. 

That afternoon was my 2nd gel shot in each of my knees to get them ready for cold weather and better movement. Finally, back home and a nap!!! On Friday, I had lunch & fellowship with a friend. Of course, no results on Friday means nothing until Monday. Bummer. Saturday was filled with normal house stuff, college football, and naps. Church on Sunday, then football in the afternoon. While watching my Eagles, I get a notification that my CT scan results have been posted. Sunday night??? Really??? Well, the Eagles won and according to the results, my CT scan was good and no major changes. 

THAT WAS THE GOOD!!!

On Tuesday morning, I woke up early to get to the lab when they opened at 6:30am. Again, it was a two-poke morning. Once in the left arm and once in the right. Just call me a human pincushion!!! Now, I needed to wait another 24 hours to get those results. Wednesday morning, I received the lab results in my portal. They were not the results that I was praying for. My CA-125 was significantly higher and the protein level in my urinalysis was not good either. Both of these results could derail chemo on Thursday.

Sometimes during these times, the stress of this journey just gets to me. I throw a personal pity party and then get mad at myself because I don't trust the Lord to get me through and then I cry and ask for forgiveness. God picks me back up, puts me on my feet, dusts me off, and reminds me that He's got me. I'm so glad that the Lord has been with me every step of this journey. 

On Thursday morning, I got ready to head to my oncology appointment, hopefully followed by chemo. My regular doctor is out on leave, so my appointment was with her Advance Practice Nurse. She is one of my absolute favorite people on my care team. She was a good shoulder to cry on and we shared a few laughs, too!!! She told me that because the CT scan was good that sort of trumped the CA-125 number. I reluctantly, agreed, but I still want to know why it keeps going higher. UGH!!! 

THAT WAS THE BAD!!!

She released me to go up to infusion for my Doxil infusion and if my blood pressure and another urinalysis was ok, then I could also get my Avastin infusion. After hugs, I made my January appointment and headed up to the infusion floor. Of course, my blood pressure was a little high and my urinalysis came back higher too. But I had some peanut crackers & water, and my blood pressure came down enough and the head of gynecologic oncology okayed me to get both infusions. 

The day progressed as usual and soon it was time for me to go home. The nurse came and flushed my port and then de-accessed my port. As usually, the put some gauze over the site and put a piece of tape over it. Easy peasy. I gathered the few things I brought with me and left. As I was waiting for the guys to bring my car around, I glanced down and saw that the gauze was completely soaked in blood. YIKES!!! Just then, my car arrived, and I figured I had a little bit of time to clean up at home before going to get my 3rd round of gel shots in my knees. 

By the time I got home, the site was still bleeding. I cleaned the site, put a band-aid on, grabbed a snack and headed to the next appointment. By the time I got into the exam room to wait for my shots, I looked at the site and sure enough, I had bled through the band-aid, a few places on my t-shirt, etc. When the tech came in to give me the shots, I asked for help. She left and found a colleague who is a trauma nurse. Between the two of them, they put a pressure dressing on and I decided to head back to MD Anderson and see if they could get it to stop bleeding. 

By the time I drove back to MDA and went back to the infusion floor, I spoke to the receptionist, and she called back and thankfully, my nurse, Marisa, was still there. She brought me back, removed the now blood drenched dressing. She grabbed gauze and applied a LOT of pressure to the site. The problem was, she kept grabbing gauze and I kept bleeding. I was also a curiosity to all the nurses still there. They tried ice. That didn't help. Finally, another APN was there, and she said that if it didn't stop in 5 minutes, I would need to go to the ER and they would be able to the bleeding. So, they put another pressure dressing on and I called home to say I would be a bit late. Then I posted to Facebook asking for prayer. I left the infusion floor, got my car, and headed to the parking garage for the hospital. I parked my car and I feel like I walked a mile to get to the other end of the hospital where the ER walk-in entrance is located. 

THE ER!!!

After the initial check in, I was seated in a quieter area until they came to take my vitals. I was then escorted an even quieter area. Yeah, I didn't have to sit in the fishbowl with the sea of humanity. After a few minutes and some more questions, I was taken to an exam room so a doctor could see me. The doctor finally came in and took a look at the site. All I can say is .... PRAYER WORKS!!! I had stopped bleeding!!! I couldn't believe it. After about 5 hours of bleeding, it just stopped. Thank you, Jesus!!! The doctor sent a nurse in who cleaned me up and put on a new pressure dressing. The doctor came back to make sure I was okay to leave. The only thing that I needed was dinner. They got me my discharge papers and I was out of there. Of course, I had to walk another mile to the other end of the hospital and the garage. I called home to say I was on my way to pick up dinner and I'd be home soon. 

Today, November 20, is my 10-year cancerversary. Ten years ago, I had no idea what a diagnosis of ovarian cancer meant and would I even live to see this day. The one thing that never, ever changed was my faith in Jesus Christ -- my Savior & Lord. It states in Hebrews 13:8 "Jesus Christ is the same yesterday and today and forever." What a comforting thought that although MY situation may change, MY health may change, the world around me may change, HE NEVER WILL!!! 

Here's a small snapshot of what I've been through over the past 10 years, by the numbers:

2+ weeks inpatient @ Cooper Hospital

several trips to the ER

25-30 (approx.) CT scans & 1 PET scan

39 rounds of chemo & still counting

numerous blood & urine tests - I've lost count

and many friends who have lost their battle with cancer

BUT, the things I can't count are:

The number of prayers that have been prayed on my behalf.

The number of hugs given to me (and keep them coming)!!!

The number of encouraging texts, emails, and Facebook messages

The number of blessings

AND the number of answered prayers - big & little!!!!!!! 

If you are reading this, you are an important part of my journey. I may never get to thank you in person but THANK YOU for being on my team!!!!

Prayer Requests:

November 30 - Chemo 13B - 9am - Avastin only - please pray they can access & de-access without any issues.

December 19 - Labs - 7am - Pray they can easily find my veins and that my CA-125 number would be lower.

December 21 - Oncology follow-up - 9am / followed by Chemo 14A - again accessing & de-accessing my port is now always going to be an issue.

Only by His Strength,

Sandy

How Did it Get to be the End of October?

I had a whole blog post written and poof .... I hit some combination of keys and it disappeared. So, in order to get you some information, I'm just going to bullet point some key dates since the last time I posted with a few comments. 

• September 14 - Doctor appointment and "Part A" of treatment. CA-125 was up to 98. Received Doxil infusion, but unable to get Avastin infusion due to high blood pressure.

• September 16 - Day trip to Pennsylvania National Quilt Extravaganza to see the fabulous quilts displayed by The Philadelphia Modern Quilt Guild, including my mini challenge quilt. Plus, many other fantastic quilts by fabric artists from around the country.

• September 22 - Primary doctor follow-up appointment for my blood pressure issues. She prescribed another medication. Now, I'm up to 3 blood pressure pills a day. Praying that someday I'll be down to one or none!!!

• September 28 - "Part B" scheduled Avastin infusion. Hallelujah!!! My blood pressure was low enough to receive the infusion.

• September 29 - Attended NOCC's Rejuvenate at The Blue Bell Country Club. A day of meeting fellow survivors, speakers, a craft, and a wonderful chair massage.

• October 12 - Doctor appointment and "Part A" of treatment. CA-125 now up to 106. Not happy. But again, only able to receive my Doxil infusion. My blood pressure was fine, but I had a high protein number in my urinalysis which prevented me from getting my Avastin infusion. It also caused the doctor to prescribe a 24-hour urinalysis before I could receive my "Part B" Avastin infusion on October 28. 

• October 14 - Attended Beth Moore simulcast at my church. 

• October 20 - Attended NOCC's Rejuvenate at Rat's Restaurant in the Grounds for Sculpture. Again, great day meeting fellow survivors, speakers, and then we were able to wander through this fabulous outdoor art museum. I will definitely go back again on a nice, warm spring day.

• October 26 - After getting the okay for treatment from completing the 24-hour urinalysis, and my blood pressure was good enough, I received my Avastin infusion.

Now you are caught up on my cancer journey and the life I'm living when not working or taking care of my family. Sometimes it is very overwhelming, annoying, and I want to give up and run away ............ 

But God. 

Those two three-letter words say so much and mean so much. In fact, depending on what translation you are reading, those 2 words can be found around 50 times. I especially like those words in Psalm 73:26. 

Prayer Requests:

November 2 - CT scan @10:30am - To be honest, I'm not sure whether I want a clear scan that doesn't show why my CA-125 is rising or that they see something that is causing the issues. All I know is that it's already in God's hands and He's got it under control.

November 2 - 2nd of 3 gel shots in my knees.

November 6 - Labs - Pray for a lower CA-125 and that the protein in my urinalysis would allow treatment.

November 9 - Oncology follow-up appointment to discuss CT scan & lab results. Followed hopefully, by both Doxil & Avastin infusions.

November 9 - 3rd of 3 gel shots in my knees.

Please also pray that I can get the rest I need every day and that I would have the energy to accomplish all that needs to be done personally.

As always, I appreciate each one of you and your prayers & encouragement. ♡

Only by His Strength,

Sandy

PS -- There is still time if you want to donate to my Together in Teal Run/Walk page. But, it is only available until October 31 and I'm really close to my goal. Here is the link:

https://togetherinteal.donordrive.com/participant/SANDY-Perry

Thanks in advance!!!