Reading the title of this chapter, you might have conflicting thoughts when I tell you that 2020 hasn’t been my best year. In fact, it sucked. It’s funny really, that when I pulled up my running blog document, I noticed that my last entry, “Hope in Affliction”, was originally called 2019 Sucked (the optimist in me found a nicer way to say it, thank goodness J). I see a trend, however. It’s been a rough couple years for me, but despite it all God has answered so many prayers. The timing may not have been when I wanted, or the answers may not have looked like I thought they should, but God showed up, and will continue to do so, even when things suck…
Part I: Infection…Again
The bulk of the last 18 months has been filled with more pain and aggravation than most people experience during the holidays with their in-laws. OK, that’s not a fair comparison, since my in-laws have always been great, but I know there are others who at least giggled at the recollection or anticipation of such irritation ;) But I digress.
This year alone, due to severe infections and a surgery, I have spent upwards of an entire month(over 3 stays) in the hospital (and that’s just since my last blog in April!!). I may have just heard a distant collection of sighs and maybe even a few ‘oh no’s’ under the breath. Oh no is right!! Sigh away. Try to imagine spending that much time in the hospital. Now imagine that month spent entirely alone due to COVID. You might cherish your alone time; even pray for it. Heck, I might have even wished for it. But this is not the type of answered prayer I was talking about in my intro. In fact, it was devastating.
There are many people out there who have felt isolated due to COVID, and I don’t want to give it more time than it deserves, but it is stripping people of precious time. As I was stuck in the hospital room, without my family or friends, I realized how sad it is for the elderly population that have been held hostage due to COVID. They are spending their last months (or God forbid, years) without physical touch, without family gatherings, without birthdays, without church. And don’t even get me started on church. But I digress.
I was alone, with no family and no friends. Taken to the hospital where Will twice had to kick me to the curb of the ER, unable to even help me through the door. OK, he didn’t actually kick me out, but I felt kicked in the gut nevertheless, by a policy and a system that hurts the same people they’re trying to protect. It was just me, Bucee and Hottie (my faithful stuffed animals), and a suitcase that was packed by an overly optimistic self, as evidenced by the only 5 pairs of underwear. Are they underwear or panties when you’re a 51 year old woman? Sorry (very sorry actually), but I digress.
This first trip to the hospital finally ended after nearly 2 long weeks of time served (4/20/20-5/6/20). However, my underpacked suitcase left me with the aforementioned underwear and only 2 pairs of leggings, a couple t-shirts and a cute pair of pajamas (you won’t catch me dead in a hospital robe). Not enough for much more than 4 or 5 days at most. I kept telling the Infectious Disease nurse that if they didn’t get me out of there soon I was going to run out of chonies ( J Laura W.). She actually offered to go to the store to get me some. She was so sweet that it wasn’t quite as weird as it sounds. I told her that if I was there much longer I might have to take her up on that offer…and unashamedly, I did. It was actually pretty hilarious. Just picture her calling me from Walmart asking me what kind of underwear I wanted (LOL). That was a strange conversation! My level of embarrassment clearly not as high as it should have been. Since she was already there I asked if she would pick me up some yoga leggings and t-shirts too (and don’t forget the shampoo and conditioner). The next day she showed up in my room, Wally bags in hand, with enough to get me through another 3 or 4 days. Let’s pray it would be enough. She was probably glad when her rotation was over ;)
That 3 or 4 more days came and went, and the once clean clothes were now placed in the plastic Walmart bag marked ‘Dirty’. My sweet Infectious Disease nurse must have sensed what was coming, and her rotation ended, sparing her the humiliation of another trip to Walmart for the crazy lady in G2020. But my sweet friend and neighbor, Janie called her daughter in law Christine, who lives in Houston, to see if she could assist me with my laundry. When she didn’t answer, Janie (leaving no stone unturned) called Christine’s best friend Jennifer(which horrified Christine BTW), who happens to work in the Head/Neck department at MD Anderson to see if she could help. Jennifer took Janie up on her request, without hesitation, and came to pick up my laundry. Since she is an employee, they didn’t question her when she entered the hospital. When she entered my room, a light seemed to shine on her familiar face (I had met her once before), and I could hear choirs of angels singing ‘Halleluia’. OK, I might have taken some creative liberty with the above set scene, but that was literally how I felt. I gave her a big hug as if we’d been dear friends forever, seeming to forget for that split second that we just broke the 6’ social distance rule. Remember, because of the COVID restrictions I wasn’t allowed ANY outside visitors, which can weigh on your psyche. Jennifer seemed like an angel to me. She brought me Starbucks too, which was like hitting the lottery (hospital coffee sucks almost as bad as this year)! Jennifer took my laundry home, and brought it back a couple days later, with a few extra articles of clothing she thought I might like that she no longer needed. The running leggings fit my growing torso not quite as well as they did her Ironman figure I’m sure, but I was happy to have them nonetheless. (Why am I the only person who can gain weight in the hospital??) The next day she returned, clean clothes in hand, with another Starbucks, and a sweet gift…a journal. She had read my blog about the guardian angel, and the cover of the journal was an angel, and mixed in the blank pages were scriptures. It was such a beautiful and thoughtful gift, and one I desperately needed. On my next hospital stay, I would finally fill my first cancer journal after 7 years of appointments and disappointments, memories, fears and joys all written within its pages. I liked that I would be turning a new page with my guardian angel journal, thanks to one of my newest guardian angels. But she wasn’t the only one. Halleluia. Answered prayers.
My husband, Will, is definitely one of my guardian angels. Not the type that shows up at some predestined moment to save the day, or that has come for a period of time to fulfill one specific need. His angel wings might not be pristine, but he has been a constant support throughout this cancer journey, missing maybe a handful of hundreds of appointments over 7 ½ years time. He has endured the pain and sleepless nights, the illness, the treatments…he has endured it all right by my side. He is an answered prayer!
So when we discuss the impact of COVID on me as a patient, imagine what it was like for him to watch me walk into the hospital alone. It must have been like slow motion for him, as I wheeled my suitcase towards the front door and turned around to wave goodbye. The tears I had in my eyes were met with the glassy stare of his, and I turned back towards the door, that I wouldn’t pass through for another 17 days. Imagine what it was like for him to know that I was there for that long without any support other than the Zoom calls with friends and family. But I didn’t even have my computer with me since I wasn’t planning on being in the hospital more than a few days. So those Zoom calls were on the screen of an old IPhone 8S, with poor speakers and a small screen. But it was the only connections I had with the outside world.
Since Will couldn’t visit me, there was no point staying in Houston, but his heart wouldn’t let him leave for a few days. He went home and about a week and a half into my stay, he called my dear friend Chris, who put out a message to my friends that he was going to return to Houston to drop off some things for me (including my computer). If they wanted to put a note or a little gift in to lift my spirits, he would deliver them all. He drove the 3 hour drive from Austin to Houston just to drop off a bin full of goodies for me at the hospital entrance. I wasn’t even allowed to go to the entrance to wave at him. But it’s probably better that way, because that physical wave would’ve turned into a wave of emotion heightened by my loneliness and fatigue. But I still had Bucee and Hottie, my faithful stuffed animals, who were introduced to a new rainbow unicorn (only Vale J), a Snoopy and an adorable bear. There were flowers and other beautiful, thoughtful gifts, that made me realize how truly blessed I am to have such an amazing support system. The most important gift, a 5x5 canvas with a guardian angel painted by my precious Molly. I looked at that angel every time I could, seeing in it the face of my sweet girl, who just recently discovered she could paint (a talent she must have gotten from her Grandma and Nana, because I certainly can’t!). Seeing that bin full of goodies made my heart full and the tears fall...the wave of emotion inescapable. That bin full of goodies also made me the envy of G20.
While I had plenty of stuffed furry friends, the isolation and lack of real human contact can make you do crazy things (like doing a stuffed animal photo shoot!). However, not only was I in isolation (being away from everyone I loved) but I was also in contact isolation. In hospital talk that means special garb that the staff had to wear (as did I) if I left the room, which I did faithfully almost every single day (in my new workout clothes). Trust me when I tell you with 100% certainty that I was probably one of the only patients to ever walk 3 miles EVERY DAY through the hallowed halls of G20. When I hit my 9th day I realized that I had already walked a marathon in the hospital (approximately 550 laps around all 4 wings of G20). How many people can say that? I must admit that I probably only did it because I had already promised myself that I would do a 200 mile in 90 day walking challenge and I wasn’t going to let a hospital stay, COVID, or contact isolation keep me from that goal. I’m nothing else if not determined. My masked face became a staple to the nurses on the floor as I passed by time and time again. I finished that challenge, at home, on time, using a portable IV, with Christine and her daughter Maddie, who were visiting Janie from Houston. In all this, I realized that God probably nudged me to do the 200 mile challenge, as HIS way of getting me in shape for whatever treatments were to come my way. Even extra weight can be an answered prayer. But I digress.
My inpatient infectious disease doctor told me that I was ‘The only patient he’s ever had that’s been in the hospital this long, that he hasn’t worried about getting worse.” Most people that are in the hospital that long couldn’t walk a lap around the entire floor, but then again, who would want to. My hospital stay kept getting extended because they were trying to treat 3 bad infections, which had become immune to most of the antibiotics that would normally work. They were trying to figure out a way to get me home on a series of IV antibiotics that they would normally never, and have never, sent someone home on. Imagine dealing with the inpatient hospitalist, their fellow, the inpatient Infectious disease doctor and their PA, the inpatient pain management doctor and their PA. Then imagine inserting all my normal outpatient doctors into that mix. I’m so grateful that MD Anderson has such a multidisciplinary approach, but this was getting crazy! So many opinions to deal with…and let’s be honest humility is not most doctors’ strong suit.
Luckily, I have learned how to advocate for myself over the last 7 ½ years. I know my body and I know what I’m capable of doing. The first week of this 17 day stint, was filled with naysayers telling me that the only way I was leaving the hospital would be to go to a long term skilled nursing facility. Did I hear them right? They wanted to send me, a healthy (well, besides the infection, cancer and all) 51 year old woman to a long term facility where COVID was running rampant and where the majority of the deaths were coming from?? There was NO way I was accepting that and I told them that I had done my job, and it was time for them to do theirs. I don’t think they are used to patients advocating for themselves like that or questioning their decisions. When the doctors said I would have to get stat bloodwork every other day, I called the home nursing agency and blood labs to see if it could get done. I set my weekly hearing appointments. I even got the inpatient hospitalist to agree to check my reports if they came in on the weekends (that is not even remotely their job). But, like I said, I did my job now they needed to do theirs and get me out of the hospital and home with my family, whom I missed terribly. My texts and Facetime calls with Meghan and Molly made me miss them even more, but they made my days bearable. It was time to be home.
The doctors had finally come up with a plan, and I was set to be released. While the adjustable bed had made for a better night’s sleep (well at least 2 hours at a time), I still woke up early and showered in anticipation of my release. I did my hair and makeup. I packed the room which had become quite cluttered and was beginning to look like a gift shop (whose flowers were beginning to wilt, but whose stuffed animals gained prominent placement at the foot of the bed next to Bucee and Hottie). I was ready for the rainbow unicorn to start pooping skittles (or whatever it is they do when all is right with the world). This was the day I had been waiting for. It was time to rejoice. All the pieces had fallen into place and I would be going home…until I wasn’t.
The pieces had fallen, but not into place. They came crashing down like someone pulled the wrong piece from the Jenga tower. I couldn’t believe it when they told me that the 6am bloodwork showed my liver #s were off the charts. They wouldn’t be able to release me from the hospital until they came back down. They day before they tested in the 40’s and 50’s, while on release day it was in the 400s. I’m not sure why, but they changed one of my antibiotics the night before, which could have affected my internal organs. Ironically, the medicine was still on my list to take. I told the nurse that I refused to take the drug, because it was the only factor that changed in between the 40’s and 400’s reading. Unless they could prove it wasn’t the drug, then I wasn’t taking it. By process of elimination it had to be. Once again, the nurse was not accustomed to a patient refusing a drug. Her confusion led her to question me: “Did the doctor tell you to stop it?”, “What do you mean you stopped it?”, “So you don’t want to take it?” That’s right, I refused to take the drug. Thank the Lord that I happened to be paying attention when they went to give me my nightly meds and that particular drug was still on the list. Either by divine intervention or by stopping the medicine, my next day’s bloodwork showed the #’s starting to fall. It would appear to be both. Answered prayers.
That next morning, with the bloodwork heading in the right direction, I saw hope that my release was imminent. With the clock ticking down, the ID team sent in Carlos, the poor NP to try to convince me that I would be better treated and cared for at a skilled nursing facility (my Grandma had been in one for a long time…how skilled were they really??) Unfortunately, Carlos proved no match for me. I was quick to explain the truth that if anything went wrong, I would still have to head back to the ER at MDA, so that argument didn’t fly (thanks, Chris!). I also asked him (in possibly a more irritable tone) why they are still pushing this agenda, when I told them the first time it was mentioned in week one, that I ABSOLUTELY would not be going to one, even if that meant having to stay at MDA long term (which they didn’t want). We already had a plan, and the meds had already been sent to the infusion pharmacy. He walked away, message clearly received and I walked out of the hospital later that afternoon. Later that day, before my release, my Hospitalist said, "If ever there's a patient up to the task, it's you." Now they understood me. Answered prayers.
When I left the room, they had to bring a UHaul instead of a wheelchair, to get all my suitcases, bins and goodies down to the car. Will was to pick me up outside the doors of the atrium lobby. Trying to coordinate a hospital release and time the pick up just right, is near impossible in the era of COVID, since he wasn’t allowed to come to my room, or even wait in the lobby. But somehow we managed to make it happen, without a wait for either of us. I hadn’t been outside those hospital doors, or off floor G20 for 2 ½ weeks. As the glass doors opened I was greeted by the smiling face of my husband, a beautiful contrast to the sadness and desperation I last saw in his face when he dropped me off. It reminded me of the lyrics from a favorite song at church. “THIS is the day that the Lord hath made. Let us rejoice and be glad in it.” And rejoice, we did. Hallelulia!
The next eight weeks were filled with lots of phone alarms, to coordinate the 3 different IV antibiotics that all had to be taken on different schedules. Most of the day I had a portable IV antibiotic ball attached to my arm, that deflated as the medicine flowed through the tube and into my body, healing me from the inside out. It was a difficult regimen that required a lot of assistance. But with my family by my side, we made it through. But it isn’t the medicine that makes me whole. My body is broken, but it’s the precious blood of Jesus running through my veins, filling in the cracks. That is where true healing comes from. And in the midst of all the troubles, and there will be many (we are promised that), this is the truth I need to cling to. Jesus answers prayers.
A few weeks after being released, I went to my first follow up appointment with my dear friend Melinda. We drove down planning to go to my appointment (well, me anyways…remember our friend COVID) and then enjoy a nice lunch in Rice Village, followed by whatever our little hearts desired. But God had his own plans for us as we were about to find out. As we drove down the familiar path from Austin to Houston, I had a text from Janie (remember her from earlier?). Janie was friends with a police officer (Kyle) that worked in Wallis, TX, who knew my story of the Guardian Angel Catholic Church. After many calls by him and Janie, we were told that they would leave the church open for us (even though no one would be there) if we wanted to drive home that way to see the inside. Melinda and I were both so excited to finally experience the church, from the inside out.
We drove back to Wallis through the old (now familiar) one stop sign towns, that make up such a large part of good old Texas charm. As we pulled into the parking lot to the outside of the church I’ve now visited several times, I felt a sense of excitement running through my veins. Was that my blood or the blood of Jesus? Both, I believe. I felt the Holy Spirit with me as we opened the red door that I’d only seen from the outside. There on a table in the narthex, was an envelope with my name on it! A book with pictures and the history of the church, compliments of sweet Debbie (also a cancer survivor) in the office who helped coordinate my visit. Even before seeing that envelope, I was immediately in awe at the beauty of this old, historic Catholic church. The stained glass windows, the statues of saints, Mary, Jesus and the Guardian Angel (of course) was art that ranked up there with the best Museums that I’ve ever been to. The beautiful deep jewel tones gave it a regal feel. The ceiling had an intricate gold pattern and arches that looked like something out of Old World Italy, not little, old Wallis, TX. It was simply stunning, to say the least. We had been transported to another place.
As Mel and I sat together in a pew, praying and thanking the Lord for bringing us here, I caught myself thinking I never wanted to leave. If this was even a small glimpse of what Heaven will feel like, then I wanted to stay!! I am not overstating my feeling at all here. It was real. My mind and my soul were at peace. I’ve experienced the peace of God that transcends all understanding before, and this was it. If you never have, it’s hard to explain, but you know it when you feel it. I’ve held fast to these verses and I hope you will too. Philipians 4:6-7 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God which transcends all understanding will guard your hearts and your minds in Christ Jesus. Upon leaving the church, the Bell tower rang twice. Both Melinda and I were taken aback at the exact timing of the bells, and we both knew God was sending us each our own personal message. What a gift we had been given that day. Seeing that church was an answered prayer.
Ironically, my Facebook memory from 7 years ago that day, after just being diagnosed with cancer for the first time, just two weeks earlier, was this: It is not God’s will for you to suffer, but in your suffering you can find God’s will. And I believe I have. It is sharing my journey with you. What a gift I was given 7 years ago. I couldn’t know then the extent of my journey with cancer, or with God for that matter, but I’m grateful for both. This is one of those answered prayers I was talking about 7 LONG, treacherous pages earlier…lol! And now, part one is complete. See, God answered your prayer J
Part 2: Radiation and Infection…Again
Part 3: The Surgery that Wasn’t (and the Trial that might be??)