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