Oh dear, it's been a while. I usually only write when I feel like I have something to say. I know that seems fairly obvious but sometimes I have things to share and sometimes, I don't. This time was different. I DID have things to share. LOTS of things! I sat down to the lap top several times and tried to write but ... nothing! I'm not sure if I was trying to remember or trying to forget? But either way, my thoughts just would not form coherent sentences. I'm still not sure what this post will look like but I'm going to try again. Let me start with some definitions.
Awful - Very bad or unpleasant. Used to emphasize the extent of something, especially something unpleasant or negative.
Wonderful - Inspiring delight, pleasure or admiration; extremely good; marvelous
If I had to describe Christmas of 2021, it would most assuredly be awful and wonderful. The awful parts were incredibly awful, so much so that I'm not sure I will actually be able to to find the words to describe them. But the wonderful parts were so incredibly wonderful, that I will try for the rest of my days to attempt to tell people exactly how wonderful they actually were. I know this sounds like some sort of bizarre oxymoron but that's what it was.
Awful and wonderful.
A couple weeks before Christmas, a few of our kids had the sniffles. Nothing out of the ordinary but we stayed home and enjoyed some extra rest and relaxation. Being so close to Christmas, most activities were already on holiday break so it looked like we would just have an extended break which we were actually looking forward to. On Monday, December 13, Phil and I both woke up with sore throats. I had a mild fever as well so I put a call into my dr to let her know because for me, any temp over 100.4 means a trip to emergency. We decided to take me off the chemo meds to give my body the best chance at recovery. We also decided to put me proactively on a round of antibiotics and a steroid inhaler, just in case. Because I'm one of the people who can't be vaccinated, I take as many precautions as I can. Drink lots of water and rest was our goal so we could be over it in time for Christmas.
For the most part, I had fairly normal, flu like symptoms. I had a pretty bad headache, the kind where it hurts to open and move your eyes. Then one night, I had such incredible, unquenchable thirst. My mouth was so dry that my I had to continually pull my tongue away from being stuck to the inside of my cheek. Not realizing at the time what was happening, I instinctively tried drinking more. This was not, however, the answer. I drank 2 litres of water throughout the night and yet I could not get relief. The more I drank, the more dehydrated I felt. I weighed myself and realized I had lost 10 pounds in 3 days. Not good. I no longer had any sense of taste or smell and I had stopped producing saliva which made eating almost impossible anyway. At this point, I started to feel a bit panicky because this definitely wasn't normal for me and I started to pray a prayer that would become so familiar to me over the weeks to come, "Lord, show me the way!" Did the Lord audibly speak to me? Um, no. It's just that I would pray and without any shadow of a doubt, the Lord would answer. Through the doctors, through a friend or family member, or through a perfectly timed Bible passage. I know you might be thinking that it might not be the Lord but I can assure you, it most definitely was.
Every. Single. Time.
Without fail.
As I was dealing with my own issues, Phil was having a hard time as well. I had been monitoring our oxygen saturation levels and while mine was stable in the 90's, Phil was having big drops into the 80's. We didn't know (and we never did find out) what was causing him to have such a terrible reaction. We decided he should go in and get checked as he was having trouble keeping his oxygen levels up and was having coughing fits that left him unable to breathe. He tested positive for Covid at the hospital, and although he was coughing up blood at this point, he was sent home. At least we knew what we were dealing with. Or we thought we knew anyway. I could breathe ok but I just couldn't shake the fever, as mild as it was, which just zapped all of my energy. I was also still having trouble drinking. It was like my kidneys forgot how to function and I started retaining water. It helped a bit to drink something besides plain water. Diluted apple juice or even adding vitamin powder to my water helped me to actually absorb it. While the kids were sick, I had cooked a total of 9 chickens so they would have the bone broth to help them recover. I drank that and used powdered broth as well. My body started to shake at times as well which I attributed to the fever but Phil was having trouble standing. He would shake and be dizzy just sitting up.
For those of you wondering, yes, we knew about the Covid protocols and we were doing all the "things". (Vitamins, supplements, etc etc) We had been all along but they didn't seem to be making any marked improvement for either of us. I was still shaky although now, instead of just being inwardly shaky, my body was starting to physically shake as well. On top of having actual chills, I was shaking most of the day. To say my anxiety levels were rising is an understatement.
"Lord, show me the way!"
Not everyone gets to have an ER nurse as their close friend and neighbour but this was one of the ways that the Lord also cared for us. We had been in close contact almost all of this time and she was checking on us regularly and was instrumental in helping us know what to do and when to go in. Phil started to get incredible sweats as well. As in soak through absolutely everything several times a night. He tried sleeping in a prone position (flat on his stomach) and it helped his oxygen levels go up but if he moved or walked, they would drop again. My fever would come and go but when it came, I had very little energy so we spent most of the day resting and trying to stay hydrated. We heard the worst of it was between 7-10 days so we were solidly in the thick of it. We tried taking Phil outside to help him breathe better and it worked for a while but his oxygen level would soon drop again. He was starting to get tired as well. I know that sounds obvious but a different kind of tired. Tired of doing this. I was unable to care for him as well so when his oxygen levels fell to the 70's, Ben took him in, and this time they kept him. Knowing he was being cared for allowed me to relax for a bit and get some rest. But not for long.
The next day, it was my turn to go in and get checked. I tested positive for Covid as well as bronchial pneumonia. I was given new antibiotics and discharged. It was very hard leaving knowing that Phil was still there and although he was getting supplemental oxygen, he wasn't getting better. He also wasn't answering his phone anymore which made me even more anxious. This song was on repeat play on my playlist.
Lord, show me the way!
The decision was made to move Phil to the ICU to give him the continuous care that he needed. His condition continued to deteriorate rapidly. When he did answer his phone, he wasn't making sense anymore. Christmas morning, the decision was made by his medical team to sedate him, put him on a ventilator and transfer him to a larger hospital an hour or so away and even then, they told us that he would need a miracle to survive. If you ever want to know what helpless feels like, this is it. Christmas evening, I took a turn for the worse and my kids drove me into the hospital. I was admitted, my own struggle was just beginning as well.
Lord, show me the way!
I now had no contact with Phil at all. I got my updates the way everyone else did. We decided that it would be better for Ben to be his contact person so he would phone once a day after the doctor had been through and get an update which he would then share with everyone. I was in no position to be doing anything let alone trying to be a contact person. My heart would almost stop everyday when Ben would phone, waiting to hear the worst. Thankfully, Phil's updates were fairly consistent at first. No change. The ventilator was doing all the work for him and he was in a medically induced coma, completely unaware of anything. The hospital I was at knew of Phil's condition and a community nurse came in to prepare me for the fact that Phil was not going to survive. I am not sure how you prepare for that or if that is even helpful at all? What could I do? I was in isolation now which translates to alone. Alone with my thoughts. Alone with my fears. I had to again and again, take my thoughts captive and discipline my mind to stay focused on Jesus or they would very easily get away from me. So so incredibly thankful once again for our nurse friend again who was the only one allowed in to see me (and she had to battle to get in). She brought me water!!! (Imagine having issues getting water in a hospital!) And broth and whatever I needed! Thank you so much for helping us the way you did! A true answer to prayer!
Lord, show me the way!
While Phil was still intubated on the ventilator, I was entering the third phase of covid. The hyper inflammatory phase. It was decided that I would ride out this phase in the hospital as it can be pretty intense and everyone, me most of all, would dearly like to avoid coming back in an ambulance. If I can explain this phase, and I truly might not be able to, it was like having 4, quite possibly 5, underlying health conditions all flare at the same time. To say it felt like I was dying is an understatement.
Lord, show me the way!
Still no change in Phil's condition. Alive. But just barely. Occasionally, they would try to lower his sedation but he would react so poorly, they would turn it right back up. Finally after being on the ventilator for ten days, he began to respond to voices. A small, baby step in the right direction? At the same time, the Dr decided it was ok for me to go home. I would either get better or not but I wanted to, no, I needed to be with my kids. There are many times I am thankful that the timing of this happened when it did. The kids were on Christmas break although it looked so much different than it would have otherwise. Every single one of them helped out wherever help was needed but Hannah and Ben definitely had the lion's share of the work keeping our household running. It is no easy task and they did an amazing job! I am so incredibly thankful for adult children stepping in and stepping up to help! I was beginning to have tremors and we had no idea what was causing them but they seemed to be related to food. Or did it just seem that way? My head vibrated almost continuously. The dr's had no idea what was causing it and therefore no way to stop it. It's possible that the large doses of anti biotics and steroids given to me in the hospital had held things at bay but now that I was home and weaning off the drugs, things were getting decidedly worse!
Lord, show me the way!
In January, Phil had his first real positive change since everything began. They lowered his sedation enough for him to breathe more on his own than what the ventilator was doing for him. He was conscious enough for us to send him a message that we loved him and were praying for him, although he doesn't remember it. Fairly significant portions of his memory were gone and it would it take a long time for him to wrap his brain around everything that had happened and the time frame in which it happened. One of his first thoughts was that something terrible had happened to me because the nurses were telling him that his son was checking on him every day but where was I? He doesn't remember much of his hospital stay before being transferred so, he was also understandably confused about how he got there. He had no recollection of why he was there nor did he know where any of us were and with a breathing tube in, he had no way to communicate. What a terrible feeling! Once the breathing tube was removed, our ER nurse friend, thankfully, was able to travel to his hospital and get in to see him, take him his phone, explain some details and fill in some gaps of information he was missing. Around that time, I started having extreme digestive issues and we made the decision to stay off the chemo meds for the time being knowing full well what the consequences of that decision could be but not really having any choice either.
Lord, show me the way!
Phil was doing well enough to be taken out of the ICU. He was still using more oxygen than they wanted to see but there seemed to be some improvement each day for which we were all incredibly thankful. I was learning that there were some food, medications and toiletry items that were setting off some pretty incredible inflammatory reactions in my body. I actually did much better if I didn't eat at all which I don't think I have to say, is not sustainable. I had lost nearly 30 pounds by now. I did much better if I didn't take any medication which had its own consequences. All of my hair care and toiletries had to be home made with organic, non inflammatory ingredients. (Thank you Hannah!) I was also having trouble with my heart rate. My dr wanted me to monitor it at home and it would race around 150 BPM for no particular reason and then drop suddenly to 40 BPM. It was a terrible feeling to have it bounce around so much and my dr's were unable to account for it.
Lord, show me the way!
Finally, we had our first very emotional, very tear filled conversation with Phil. It only lasted a few minutes, he was so weak he could hardly hold his phone and he had almost no voice at all from being intubated but to hear it, there are no words. At this point, he was not confident that he would ever experience a full recovery. It was very painful and difficult for him to breathe. He described his lungs as being filled with hardened cement. We got used to living one day at a time, without any plans for the next day. Realistically, we should always live like that but at the time, we had no choice. I ended up back in the ER. My body was having trouble 'regulating its electrical pulses' and I have no idea what that means. All I know is that either I was not handling the withdrawal of all of the many medications I had been taking or my liver was not handling the extra load very well. Either way, I was prescribed medication to help against the inflammatory response I was having to just about everything! Food, medication, supplements, shampoo anything that I ingested either orally or topically as well as stress was causing me to have an inflammatory response. Even a baby aspirin would set it off. I could tolerate cucumbers. That was it.
Lord, show me the way!
Phil was finally moved to a regular room and we were able to get a care package to him with some healthy snacks and vitamins and some Timmie's for lunch! The first time seeing Ben as he walked into his hospital room was so very emotional! For both of them! He was getting better. Bit by bit and day by day! Thank you Jesus! Around this time, my palliative team was brought on board for my care. It was actually very welcomed to have another opinion to help me know what to do and when. It was hard to make my own medical decisions being in the middle of everything so they told me when I could stay home and when I needed to head in for something to be checked. They could see me in my own home as well which was very helpful but I was starting to feel at my breaking point. How long is this going to last? How long can I actually do this for?
Lord, show me the way!
January 13, three weeks from the day Phil was admitted and exactly one month from the first symptoms, Phil came home from the hospital. Tired, exhausted, run down, all the words but ALIVE!! What a reunion! I can't even begin to say! If you've ever had to say your goodbyes to your spouse over text messaging and then you miraculously get to see them again, then you know! I didn't sleep those first nights, just watching him carefully and listening to each precious breath, thanking the Lord for each one of them! Every day he just kept getting better and better! He went from coming home hardly being able to walk, and using a walker to get around to being able to walk unassisted in such a short period of time. Once he started to get better, he got better quite quickly. We are so incredibly thankful for that! Our first pictures together are so precious but they truly fail to relay our thankfulness for each other and for being together again! I will never forget the precious time we spent together, in communion with the Lord. Such a sweet respite from all that we had been through. I was still having gastrointestinal issues and retaining water quite bad. My lymph nodes were very swollen and I can't even begin to explain the fatigue. But surely the worst was over? But it wasn't. It was just getting started for me.
Lord, show me the way!
While Phil continued to regain his strength, mine continued to deteriorate. We were pretty sure that on top of everything else, I was dealing with an undiagnosed auto immune disease. The treatment for it is anti inflammatories and steroids which may be the reason why it was kept at bay while I was in the hospital? I was also starting to have issues with almost every single operating system in my body. My bowel/colon shut down. We tried every single thing to try to get them to move and I do mean everything. My kidneys stopped doing their job and instead of being able to pass fluid, I began to swell leaving me feeling terribly dehydrated no matter how much I drank. My liver enzymes were elevated and my central nervous system was not cooperating either. What I experienced goes beyond what I am comfortable sharing here but suffice it to say, it was awful.
Lord, show me the way!
I don't think I need to say that my situation was getting dire. Palliative was helping me understand what was happening. There was no medication that could help me if my body could not process it. At one point, I lay on the bathroom floor, fully cognizant of my situation. The Lord, Who had been so faithful to care for Phil and give him back his life, was taking me down a different path. And do you know what I felt? Peace. Perfect Peace. The same Peace that Phil had as he tried to assure me that the Lord would care for us in his absence, now comforted me that He would also care for them in mine. Phil had me go back to the ER when I started throwing up. Unable to keep food or sips of plain water down, move anything through or out and sweating and shaking uncontrollably, they gave me a small amount of vitamin fluids which were now depleted due to dehydration and sent me home where palliative would continue my care. The fluids helped initially but within a couple hours, I was right back where I started. I was retaining most of the fluid and swelling, it wasn't getting where it needed to be. In the end, it was my mom's advice that helped the most. She told me that my Nanny (my great grandma) used to have issues absorbing water. When she was having an issue, she would take very small sips of sugar water every 15 minutes. There honestly was nothing to lose.
Lord, show me the way!
I couldn't tolerate anything cold or even room temperature so we heated a liter of distilled water in a thermos with a tablespoon of brown sugar in it and I set the alarm on my phone for every 15 minutes. Every 15 minutes I drank two tablespoons of warm, distilled sugar water. For three days. Around the clock. I slept in 10 minute increments where I could. After three days, and very slowly at first, my bowels began to move. Eventually, I could add one tablespoon of blended vegetables every 15 minutes as well and then eventually small sips of a nutritional supplement. I can still very clearly remember the day I added a bite of chicken. The other major thing I did once I could, was to move! Walk, walk, walk. Where the temptation was to stay in bed, I needed to move. Just a few minutes every hour. The more I walked, the better I felt. Still drinking every 15 minutes throughout the day, I could now stretch it out to sleep for an hour at night. Waking every hour for water instead of every 15 minutes was such a luxury. And slowly, everyday the Lord was gracious to show me something else to add. Garlic, apple cider vinegar, MCT oil. I still couldn't tolerate any medicine, not even a Tylenol or baby Aspirin let alone any vitamins or supplements in pill form. You only need to see how much you've been depending on medication until you can't take it anymore.
Lord, show me the way!
While all of this happening, you might be wondering what was happening in our home. The Lord was truly providing for absolutely every single need we could possibly have. Everyday, food showed up for our family. Envelopes were dropped off with exactly what was needed. Special friends were right there doing whatever needed to be done (a whole crew of people kept our driveway clear through the snow!) and bringing whatever we needed and most importantly, so many people, maybe even yourself, were upholding us in prayer. I'm sure there are things that I am not even aware of but I am not exaggerating when I say that the Lord held us, through the care of the people around us, so carefully right in the palm of His incredibly Good and Wonderful hand. Even though what we were going through was hard, without a doubt the hardest thing our family has EVER gone through, He was all around us, shielding us and holding us. Keeping us. And I say us because once again, we all went through went through this together. And to a certain degree, we are still going through. An unexpected phone call during the day or someone calling too loudly in the house, will still set everyone on edge.
So where are we now, six months later? ALIVE! Thank you Jesus! Phil went back to work in April. He continues to struggle with fatigue. He is still waiting to see a respiratory therapist but his x-rays show such marked improvement that no one expected and considering where he was six months ago, it is truly a miracle. I have what is called Long Covid. It has been a challenge for sure finding new normals. I still have very little sense of taste or smell. I started chemo meds again at the end of April and I've just completed two rounds. My CA15-3, (tumour marker) although elevated during the worst part of Covid, has since stabilized at the lowest it has ever been. Thank you Jesus! My lung x-rays have also shown marked improvement which is pretty amazing since I had covid pneumonia (the ground glass looking type) as well as bronchial pneumonia. One especially challenging issue I am experiencing now though is with joint pain. Once I started back on chemo, I had increased joint pain unlike anything I've had before even though I have used this particular medication combination for three years. The CT scan shows that I have severe osteoarthritis in some areas, presumably a side effect from the hormone blockers. Interestingly, the treatment for osteoarthritis is walking, so although I have a lot of joint pain, I try to walk everyday. Sometimes I only have the energy for a walk in the driveway, other times I can manage a couple kilometers. The challenge is to find balance. If I sit for too long, I hobble about like a little old lady. If I walk too much I hobble about as well. Another symptom that I've not had to this degree before is hair loss. The combination of post covid along with my chemo meds and being unable to take my thyroid meds, created the perfect storm for hair loss. But one day, just as quickly as it began, my hair stopped falling out. I had to cut it quite short but I didn't end up losing it completely. I was not prepared for the emotional aspect of losing my hair but even then, the Lord was my comfort. Thank you Jesus! My liver and kidney function have since returned to a normal range for which I am very thankful. I still have covid symptoms, hardly any taste or smell but the biggest is fatigue. Oh my. It seems to come in waves. I have good days and I have bad days but I have DAYS! Isn't that incredible? Thank you Jesus!
Thank you Lord for answering our prayers and showing the way. Day by day, sometimes minute by minute You were there. Sometimes I felt so very stretched but through it all, You were there and I know, without a doubt that no matter what we go through in the future, You will be there too. You will never leave us. You will always show us the way. And even if, especially if, the way isn't what we would choose, You still have us in Your Wonderful hand and You hold us. Our strength literally coming from You! In times of great suffering, You are so near. I know this now. I have felt Your presence in ways I'm sure I never could have otherwise. And it is for that reason that I wouldn't change anything, not even one detail, in our awful and yet truly wonderful season of illness. We saw You care for us and felt Your Presence so clearly!
I dearly wish that each of you could see and hear and feel Him so near as well. Even if you have to go through a terribly awful season, He is there, in the darkness and it is truly the most amazing and wonderful thing! ❤️
November 2021 BC (before covid)
Trying to show me he was “ok”.
Our first glimpse of Phil after the ventilator.
Getting better and having some amazing conversations!
On their way home! Thank you Jesus!
Home!! Truly a miracle!
Jace not too sure about Bampa!
Together again! Phil on the mend, things about to take a turn for me!
Learning to get around again.
Me not feeling good at all!
Two invalids getting our Vitamin D naturally!
Feeling better and sporting a new look.
June 2022 AC (after covid)
All The Way My Saviour Leads Me
Words: Fanny Crosby, 1875
Music: Robert Lowry, 1875
Do not fear, for I am with you;
Do not be afraid, for I am your God.
I will strengthen you, I will also help you,
I will also uphold you with My righteous right hand.
Isaiah 41:10
No comments:
Post a Comment