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.
*** 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.
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.
