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!!!
- 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!!!
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)
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- 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
