Because my spring scan was clean, God gifted me a whole summer with my family without any type of cancer treatment. I even ran a 5K in June. What an incredible blessing!!
Scans and more scans
We were so hopeful for that next scheduled surveillance scan to have no evidence of cancer. Even my oncologist shared in that hope by scheduling only a chest scan instead of the typical chest and abdominal scans. Unfortunately, it was not the case. Although the chest scan showed no evidence of cancer in my lungs, it showed a spot on my liver. We took the fact that the liver spot showed up as another absolute miracle from God.
Chest scans don’t require the drinking of contrast an hour before scanning or the adding of contrast via iv. The purpose of the contrasts are to make the cancer show up better. Chest scans only require a short time holding one’s breath while in the scanner. Even without an abdominal scan and the two contrasts, God allowed the liver cancer to be shown on the chest scan. Truly another miracle from God. The liver metastasis could have grown unchecked if not for it showing up on the chest scan. Praise God for his mercy!
Immediately, my oncologist scheduled an abdominal CT scan. The scan showed two spots on my liver and then a very unexpected finding of potential cancer spots in my pelvis. In my oncologist’s words, it looked like someone poured cancer in my abdomen and then it grew from the bottom up. The results did not make sense to him. Because of this, he ordered a PET scan. PET scans show cancer in any type of tissue.
The PET scan results confirmed that the spots in my pelvis were indeed cancer. Additionally, they showed that I had cancer in my abdominal muscle wall near the area of my liver biopsy. When we met with the oncologist to discuss these results, he shared his opinion that he believed with 100% certainty that the cancer in my abdominal muscle resulted from the liver biopsy procedure. Although it’s very rare, he has seen it at least 3 times before. Also, he shared that the additional cancer in my pelvis could be spread from the biopsy as well though he couldn’t say that with 100% certainty. Because of my liver biopsy experience that I share in detail with Cancer Journey #2 I was not shocked to hear this news. Also, I had complained of abdominal muscle pain throughout my recovery and it was always explained away because of the regular weightlifting I did. Now we knew it was the cancer spread. This challenged me mentally and emotionally because now I felt the cancer. It impacted me and I had for the first time a constant, regular physical reminder of my illness. Pain in my abdominal muscles increased throughout the day and even affected my sleep position. This constant reminder of my cancer caused me to trust God even more.
Although the cancer’s return surprised us, we felt God’s faithful hand of protection on us.
A Second Opinion
Over the years, God has gifted me quite a few friends in the legal field and all wanted restitution for my botched biopsy. Numerous friends pleaded with me to sue. But I didn’t feel right about it so I prayed and sought the LORD. The LORD impressed on my heart to get a second opinion and when I asked Him where, He impressed on my heart a name of an oncologist who cared for me during one of my stays in the hospital.
Providing the detailed information related to my liver biopsy and PET scan results to this oncologist proved challenging. Acquiring the PET scan images themselves, included an incredibly timely and arduous process. To add a further obstacle, these images could only be read using a specific computer application. In spite of these difficulties, I followed the nudge from the LORD and wrote a letter to the oncologist that the LORD put on my heart. I really prayed about how to write this letter, because I didn’t know what to say. I simply stated that I had concerning questions about a recent PET scan and when I prayed about it, the LORD brought him to mind. Would you believe that this dear doctor cold called me very soon after I sent my letter and files? He cared enough to ask me what happened and listened to my entire story and then gave his opinion. He expressed much sympathy that all these errors happened. He shared his honest opinion in that he believed that it would be incredibly difficult to prove 100% that the cancer metastasis in my abdomen came as a result of the biopsy. His personal opinion is that once a cancer metastasized, it can show up anywhere in the body.
This wonderful doctor wasn’t done blessing me. This very kind doctor then went to ask what treatment I was receiving. Thankfully, he agreed with my current treatment plan. Then he went on to give his medical opinion on my future treatment as well. He ended our call with affirming my faith in God and that was the most important thing. After he hung up, I just wept. I wept at his extreme kindness and generosity and willingness to give his time and care. The very idea that after receiving my strange letter, he called without hesitation and offered his help and support was just such an unexpected and incredible gift. I was humbled and so very thankful. And it gave me such peace to put the litigation question to rest once and for all. God truly answers prayers. Imagine the incredible blessing I would have missed out on if I hadn’t sent what felt like a “weird” letter.
Chemo port placement and treatment
In order to receive my scheduled chemotherapy for the next step in my treatment, I needed to have a chemo port placed. Because of the injury to my right subclavian artery during the last attempted port placement, the port could only be placed on the left side. Although the last chemo port attempt resulted in disaster See Cancer Journey #2 , this required me to face my fears and receive another one. Because one of the chemo treatments I receive is given over a period of 46 hours, it can’t be given via IV. An external line of some kind is required.
Thankfully, the port placement procedure requires anesthesia so I have no memory of the procedure and as far as I know it went seamlessly. I woke up and was sent immediately up to a chemotherapy infusion room to receive my treatment. The wonderful nurse who took care of me confirmed that everything looked great and I went home attached to my take home chemo.
The chemo went well at home and the port placement healing process also was a success- yet another gift from God.
Chemotherapy
Chemo continued six more times for three months before the next scheduled set of lung and chest scans. Miraculously, my blood counts remained in the normal range despite the aggressive treatment. During this time, I received two different chemo drugs as well as an immunotherapy.
Gratefully, the scans showed that the cancer did response to treatment and started to shrink. One unexpected finding of my chest scan was that my chemo port line bunched up and ended up in a much smaller vein. Because of the strength of chemotherapy drugs, having it infused into a smaller vein is very dangerous. In order to fix my chemo port, I needed to go back to the Interventional Radiology Department. The three options to try to force the port line back into the correct position included flooding the port with fluids, snaring it and pulling it back into position, or completely replacing the port.
Needless to say, given my experience with port problems (see cancer journey #2) going back to Interventional Radiology is not somewhere I wanted to go. God graciously reminded me that I am called to represent Him in these places. Although this was hard, God is faithful to turn even this situation to good. Due to some changes at the hospital, I had an unprecedented wait time in the actual procedure room. As we waited for the doctor, the nurses and technicians barraged me with questions about my cancer journey. God gifted me almost a half an hour with them to share how God had shown up again and again in my cancer journey. Now I recognized the assignment I was given, to keep sharing God’s love and the incredible story He gave me with the medical staff He gifted me with.
Finally, the resident showed up and he attempted to move the port line with fluid. This doctor pressed so hard on the plunger that it actually broke off and flew in my face. Thankfully, nothing happened to me and unfortunately, the line didn’t move. The attending physician had yet to appear. When he arrived, he decided to attempt to snare it. The nurse sedated me thankfully for the procedure. I prayed for success.
Thankfully, the attending physician successfully snared the line and placed it in the correct position. Everyone was thrilled. All the staff remarked that they had never seen such a bunched up line. I thanked God, recognizing the gift He gave me for yet another audience to see what He had done. God truly redeems everything for good.
Decision Time
My chemotherapy continued six more times reaching a total of twelve treatments this time. Thankfully, the treatments remained manageable. God gifted me absolute fantastic nurses and it made the chemo treatment time so much better. I learned all about their families and interests and they blessed me with their kindness and excellent care. My dear husband always came with me and we usually played a board game to pass the time. What a gift from God it was that I felt well enough to do this.
And praise God, after three more months of chemotherapy treatment, my next scheduled CT scans showed even more shrinkage. At my scheduled appointment, my wonderful oncologist offered the option of cyto-reductive surgery. This massive and extensive surgery included opening my abdominal cavity from chest to pelvis and removing any visible cancer. The surgery could include a HIPEC treatment as well. This is where hot chemo is poured into the entire abdominal cavity and you are closed up temporarily. After a certain period of the time the chemo is then drained and you are sent into recovery. My oncologist did not 100% endorse the hot chemo because of the risks. Since this invasive surgery offered the removal of all the abdominal cancer, we decided to go forward with the surgery.
Surgery
We met with the wonderful surgeon. He began with asking what my cancer story was. Since this story is so long with many twists and turns, I did my best to summarize it for him. It was honestly hard to remember and express all the pieces of this journey since its beginning 2019. I did share with him what God had given me to say after the surgical injury to my artery. “You are a lifesaver. God alone controls like and death.” Because of this surgical injury at the hand of a resident, my husband and I also expressed our concern of the use of residents. The surgeon informed us that it was impossible to do surgery of this extent without the use of residents. So I asked him to select his very best and surrendered what I couldn’t control to the God of heaven who loves me.
The surgeon went over my most recent scan with impressive ease. He asked my opinion on receiving an ostomy if needed. We responded that we wanted him to use whatever means necessary to save my life. Looking at the scan, he was not certain he would advise the hot chemo. We felt comfortable letting him make the decision after opening me up. Because CT scans are limited in what they reveal, we knew that there was likely more cancer than visible on the screen, He scheduled me for his next available surgery time in just under two weeks.
The kind surgeon also addressed the spots on the liver. One he believed was very easily resectable, The other, however, he didn’t feel comfortable cutting. It was very close the main vein of the liver and if that was accidentally severed, it would be a fatal wound. He recommended a histotripsy procedure that is still relatively new. It uses targeted sound waves to kill the cancer in a very intentional manner. Because it was a newer procedure, my insurance needed to consulted to see if they would cover it.
Acquiring insurance coverage for the histotripsy procedure proved to be a very stressful and eye-opening experience. No matter how I pleaded with the insurance representative for my need of this specific procedure, they were stone cold and not empathetic. It felt especially cruel given the extent of my cancer spread. We even involved friends in powerful positions. But the insurance company upheld the denial and my histotripsy procedure was cancelled within hours of when it was to be preformed. Again, we had to surrender to God and trust Him for things we couldn’t understand. As a result of my experience, I have tremendous firsthand empathy for those whose insurance companies deny the very lifesaving procedures their skilled caregivers recommend.
My exceptional surgeon pivoted and said that they would use ablation on the second spot on my liver next to the crucial vein. Ablation is a procedure typically done by a radiation oncologist to essentially burn away the cancer tissue. He had anticipated using it anyway in some capacity to do any clean up necessary from the histotripsy procedure. He remained confident of the new plan.
In addition, before the major surgery, a vascular surgeon would place a filter in my abdominal vein to collect any blood clots that resulted. This was done out of an abundance of caution because of my previous stroke. Because those with cancer have thicker blood, they are much more susceptible to blood clots and, therefore, strokes. We ultimately decided to keep the filter in even after the surgery, just because of its life-saving benefits. The vascular surgeon was yet another gift on my extremely talented surgery team.
I woke up the morning of my surgery with the start of a cold. This didn’t stop my surgery because I had no fever and only some nasal congestion. My primary surgeon stopped by before my surgery and I remember teasing him for bringing in a giant Kwik Trip coffee. Because I had to fast due to the surgery, my normal, beloved morning coffee was off limits.
Because of the enormity of the surgery, an NG-tube is inserted. This pretty awful tube runs up into your nose and down your throat through your esophagus into your stomach. Its purpose is to drain the stomach of all its contents. This eases the digestive system and gives it time to heal. Often, the NG-tube is removed within 24 hours of the surgery. You are not allowed anything by mouth until it is removed. The NG tube was pretty challenging for me because of my intense gag reflux. Thankfully, its placement occurred while I was under anesthesia.
After the surgery, my wonderful surgeon shared that the surgery went spectacularly. My family and I were thrilled. The hot chemo wasn’t used because the surgeon didn’t think it was needed. This was a relief because the hot chemo process makes the recovery process take significantly longer. Also, an ostomy wasn’t placed either. I felt so blessed and thankful to God. Although the NG tube remained, the surgeon felt comfortable pulling it the next day. In addition, I had an epidural in my back for the pain. The final surgery count included 12 total individual surgeries to remove all the visible cancer. Because of the nature of this massive surgery, there was not one name for it. Each of the twelve surgeries are listed in my chart independently.
Initially after the surgery, I felt pretty good. Unfortunately, that didn’t last. My body had a reaction to the epidural and my blood pressure kept dropping to dangerously low levels. The anesthesiologists decided to turn it off completely until my blood pressure normalized. I was unable to stand or walk. This set me back a bit and I resulted in more pain. I chose not to take the pain meds they offered because I felt the side effects were worse than the pain. Thankfully, by the second day, I could walk though I felt extremely weak. As expected, my chest and abdomen were very tender. Also, the staples used to close the enormous incision stay in for a full 3 weeks. Having that many staples proved pretty awkward.
One complication during one of the resections, is air entered my chest cavity. Because of this, twice daily X-rays monitored my chest. The technicians came to my room and required me to lay back on the hard board. Under normal circumstances, this would have been difficult. Thankfully, my body absorbed the air and a chest drainage tube wasn’t required.
Additionally, I still had a cold. So coughing was quite painful. But I learned to hold a pillow against my incisions whenever I felt a cough coming. God graciously gave me the strength to endure. I remember thinking during my very first surgery how painful it would be to cough and here I was with a much more significant surgery coughing regularly.
On the second day, they removed the NG tube, and it was luxurious to drink, though I didn’t have much, if any, appetite. We now hoped and prayed that my GI tract might come back online and everything work as it should. Unfortunately, that didn’t turn out to be the case as I vomited early the next day. This indicated that my gastrointestinal tract needed more time to heal and essentially wake up. Sadly, the very uncomfortable NG tube was placed again and this time while I was conscious. I think I can describe it best as an incredibly barbaric procedure. The tube continued to be extremely uncomfortable for me and caused me to gag repeatedly throughout the day. Finally, at 3 in the morning, I dry heaved over and over again and the NG tube seemed to come partially out. When the nurse came in the room, she confirmed that was the case. The residents came in to put it back in place. This was another grueling, barbaric experience that I thankfully could close my eyes for.
When the residents and students came by at their normal 6 am rounds, they tried to flush the NG tube thinking that would ease my discomfort. Regrettably, their best intentions just made things worse. The flushing caused me to gag repeatedly all the while tears poured down my face. The super kind head resident was so frustrated. I explained to tell him that it wasn’t nausea, but my overreactive gag reflex. The wonderful resident left with the promise he would try to get the attending physician to pull the NG tube. Oh it was so miserable. I learned to tip my head forward and that eased the irritation somewhat. I wasn’t allowed anything by mouth as long as I had the tube. I really had a hard time not drinking. After I begged them repeatedly, I was given ice chips. At this point, I was so desperate for a drink of water, I wouldn’t have given someone big time $$$.
Finally, the nurse came will the good news that they would be removing the NG tube shortly. And thankfully, my GI tract responded so I did not have it put in again. I continued to improve day by day in the hospital and gradually was able to tolerate more and more food and water. After eight days in the hospital, I was given the green light to go home.
I went home full of staples and pain, but so very grateful to God and my family that so selflessly cared for me.
Three weeks later, I was able to have my many staples removed. Gratefully, there was no visible infection along the large incision and each one of the staples came out with relative ease. The nurse practitioner that removed them couldn’t have been kinder. Because not all of the places around the gigantic incision were completely healed, I was sent home with steri-strips as well as some bandages. The area around my belly button took quite a long time to heal. Every day my wonderful husband and I applied fresh bandages to those areas that still had not fully healed. I was especially anxious for the incision to fully heal so I would be cleared to swim.
Gradually, I was able to move faster and easier as my body healed. By the end of the summer, it was time to be scanned again. We were so grateful for the news that I was still cancer free. God showed up quite remarkably. I met a new resident during this office visit and she did a literal double take when she saw me. She previously viewed my surgical scans and formed an expectation of what she thought I would look like. She couldn’t get over how healthy and normal I looked. I was able to give glory to God and express my gratitude in my excellent care. Again, God showed His miraculous power in allowing me to look radically different than the medical professionals expectations. This has been a consistent theme to my entire cancer journey. We were so thankful to our God who carried us so far!