For the last few months, I have been ridden with anxiety. I didn’t think it could be possible to have more medical issues but, nevertheless, I had ~25 doctor’s appointments this year. After seeing my primary doctor for my yearly physical in late October, I explained my extreme fatigue, other symptoms and begged her to run more tests. A week later, I learned my platelets were high, and she didn’t have an explanation for my other issues. As such, I was sent to two different doctors at two different hospitals. One was a specialist who then referred me to a physical therapist, where I have been doing weekly appointments for 12 weeks with no changes. The other, a hematologist/oncologist to look into reasons for my platelets being high. I spent months working with the hematologist looking into different potential causes, running tests and ruling out cancers one by one. Eventually, we ruled out leukemia, lymphoma and most other cancers, and my symptoms seemed to be pointing to Essential Thrombocytosis – a rare blood cancer.
After so many tests this year and a doctor’s appointment every week, I was more than ready to have a diagnosis. I accepted that I may have this cancer – I was ready to learn what the diagnosis was so I could move forward and treat it. So, once again, I had a blood test done, but this time to look into this new cancer I hadn’t heard of, nor could pronounce. I spent five weeks waiting on the gene mutation results that would reveal if I had it. I whole heartedly believed I did – my symptoms were consistent and we had ruled out everything else. To my displeasure, the test came back negative.
I was angry. I know it sounds like great news; however, I still didn’t have any answers for what was happening with my body and why my platelets were high. As the blood work could only determine 80% of mutations associated with this cancer, there was only one thing left to do to truly rule it out: a bone marrow biopsy. My doctor suggested that she could just refer me to a rheumatologist so I could move on. That didn’t settle well with me. Why would they send me to a new doctor and start looking into autoimmune diseases before they actually ruled it out? I questioned her and she admitted that it was a very invasive procedure and she was trying to spare me the pain. I’m all for avoiding unnecessary pain, but not when it will provide answers or officially rule out cancer. We agreed we would proceed.
Leading up to the bone marrow biopsy, I expected to be extremely anxious as I had been about my doctor’s appointments throughout the rest of the year. However, I didn’t allow myself to perform any Google searches this time to learn everything about it. I already knew it would be painful, they were upfront about that. I knew learning more would only increase my anxiety and make the waiting period worse. Work was very busy and gave me an excuse to not think about it. Keep busy, head down. The day of the biopsy, I even took a meeting until the exact time I knew I needed to leave, arriving at the Cancer Center just on time. I knew I didn’t need extra downtime to allow my brain to stress and anxiety to increase.
First, they called me do bloodwork, then back to the waiting room – often my least favorite spot of dreadful waiting. It was here I always felt out of place, sitting around people nearly twice my age. It was here my nerves always got the best of me. But this day in the Cancer Center, it felt less odd. I had been to four different Cancer Centers this year, in addition to a few different hospitals, and had frequented this one a few times already. It was starting to feel like just another doctor’s office. Plus, this center was much more pleasant than a few of the others I had visited, with large windows where the sun carried in light to lift my mood.
After being called back to the procedure room, I was met by a very perky lady, the type that typically got under my skin and became way too good at hiding the bad news amidst their joy. However, I could tell she knew what she was doing and was good at her job. I respected her. She proceeded to tell me step-by-step what was going to happen. Having performed over 2,000 bone marrow biopsies, she was confident in her approach. “We will enter through your pelvic bone,” she explained, as she showed me the location in my lower right back. First, she said they would use a long needle and insert it in my back after numbing the area with lidocaine. To get to the bone marrow, she would have to get the needle through the bone. Doing so would require her to notch her way through (picture turning a can opener), and then she would use the needle to extract the bone marrow. The doctor explained how she would have to pull the marrow out very quickly in order to get a good sample and hopefully get tiny bone fragments to come out with the sample. She warned me this would hurt; they could only numb the skin and tissue with lidocaine, not the bone or the marrow. Then, they would cut out a fragment of bone marrow, about a 10mm long and 2mm wide core biopsy. It didn’t sound great, but I knew I could handle it and didn’t have much of a choice.
As I lay on my stomach to start the procedure, she gave me a pillow to squeeze, a gesture I was thankful for a few minutes later. The pressure I felt as she notched through my bone was intense. She was clearly using her entire body weight to do so, and even made a comment to her assistant, “You’ve got to love these young, hard bones!” I recognize that at 32, I am not her typical patient. It hurt, and as I squeezed my pillow, I thought about how I should have brought someone to hold my hand instead of being stubborn and turning everyone down. Then again, the way the table was set up would not have allowed it. They needed me flat and calm, and I don’t think having someone see that would have helped the situation. Looking back, I’m also glad no one I loved had to witness it. So, I squeezed the pillow harder, gritted my teeth and powered through.
Next, came the needle to withdraw the bone marrow. I have experienced pain from sports injuries in my life, but nothing like this. On a scale of 1 to 10, this was a 10. Immense, unbearable pain. My whole body jolted, and it felt like my back was spazzing. I let out a loud whimper unwillingly, and the specialist apologized, but told me she had to keep going and pull it quickly to get a good sample. I held onto the pillow and side of the bed with all my strength. Tears flowed freely and I tried to stay quiet and not let my body heave. When she completed the extraction, she told me she had to do it one more time, but this time she would go a bit slower in hopes for it to be less intense. She was truthful; it hurt less but still enough to be excruciating. A few minutes later, when she told me they were wrapping up, I was still bawling. I couldn’t stop. The tears were instinct and couldn’t be controlled. They were a mix of both the intense pain and the anxiety of the forthcoming test result. After the procedure was done, I collected myself as much as possible and they were finally able to break the sterile environment to get me tissues for my running nose and salty tears. I lay on the table for 15 more minutes to make sure all bleeding stopped and then was released to drive home. They said the biopsy site would be sore 2-3 days.
The pain and soreness I continued to experience over the next few days was intense. However, it didn’t go away after 2-3 days as suggested. It has been two full weeks, and I am finally feeling less sore. However, I still have moments throughout the day where I move in a certain way where the pressure is intense. Or if I am standing/sitting for too long, it starts to travel down through my back and glutes. But in those first 2-3 days, I could hardly move or walk. It was excruciating. I wasn’t prepared for the procedure and the pain that followed. However, after reading about it online and learning that the intensity of the pain and timeline for healing was normal, I’m glad I didn’t research it ahead of time. Had I known, I may not have gone through with it.
Two weeks later, I finally received the results: all the tests were negative. I do not have cancer. I have officially graduated from the hematology/oncology unit.
Hallelujah! That should be my reaction, right? There was a sense of relief but, once again, I left feeling frustrated. My platelets are still high. I still have extreme fatigue and other symptoms. Now, I will be sent to a new doctor to look into autoimmune diseases – the journey continues.
I do not know where this next step in the journey leads; truthfully, I am a weary traveler. What I do know is that I will wait until after my mission trip to Thailand next month to see another doctor. With ~25 doctor’s appointments (one or two a week, consistently), four biopsies, a cyst drained and a surgery since July 2023, my anxiety is high, my mental health shot, and my body worn down. It’s time for a break, and a mission trip across the world is exactly what I need to gain perspective. I will start looking for answers again upon return when my mental state has had time to process something other than medical jargon.
In this waiting, I ask the Lord to provide me courage, patience, and joy. To allow me to set aside all anxiety and trust His plan. As I read Psalm 77, it speaks directly to me.
“I cry aloud to God, I cry to God to hear me. On the day of my distress I seek the Lord; by night my hands are stretched out unceasingly; I refuse to be consoled. When I think of God, I groan; as I meditate, my spirit grows faint. You have kept me from closing my eyes in sleep; I am troubled and cannot speak. I consider the days of old; the years long past I remember. At night I ponder in my heart; and as I meditate, my spirit probes: “Will the Lord reject us forever, never again show favor? Has God’s mercy ceased forever? The promise to go unfulfilled for future ages? Has God forgotten how to show mercy, in anger withheld his compassion?” I conclude: “My sorrow is this, the right of the Most High has abandoned us.” – Psalm 77: 2-11
How deeply I feel the pain of the psalmist as they lament. I have felt that abandonment and faintness of spirit this year. I have questioned if things will turn around. I have lay defeated and broken. But also like the psalmist, I trust the Lord and try to continually remind myself of all the good and gracious works He has done.
“I will recall the deeds of the Lord; yes, recall your wonders of old. I will ponder all your works; on your exploits I will meditate. Your way, God, is holy; what god is as great as our God? You are the God who does wonders; among the peoples you have revealed your might. With your mighty arm you redeemed your people, the children of Jacob and Joseph.” – Psalm 77: 12-16
The psalmist goes on to detail out the works and wonders of God. The following verses struck me deeply.
“Through the sea was your way; your path, through the mighty waters, though your footsteps were unseen. You led your people like a flock by the hand of Moses and Aaron.” – Psalm 77: 20-21
The sea was not the easy path for Moses and Aaron to travel but you, Lord, made it possible. You created pathways they could not foresee and led them forward. Through all of it, you remained unseen. Yet, they trusted you. They gave you their faith and you gave them the courage. Lord, I pray for that same courage as I navigate this unknown period of life. Help me to recall the deeds you have done and be grateful for all you have provided. Even in the unknown, my life is wonderfully blessed. Give me the strength to continue the journey through the mighty waters. I extend my hand and allow you to lead. I trust you, Lord.
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