This past week marked the two-year anniversary of Sheridan's diagnosis of metastatic osteosarcoma. Just over a month earlier marked the one-year anniversary of his septic shock. He is approaching yet another milestone. In 7 days it will be the one-year anniversary of his right leg being amputated above the knee. Three unreversible events led to our present day and more reflections on the number three.
The amount of times we have been told to expect 3 days to 3 weeks, over the last week and a half, is mind-bending. Although it's true, no one knows the day or the hour, Sheridan has continued to prove his strength, tenacity, and courage.
We continue to surround him with our love and presence around the clock, staying vigilant at his side. I will not share intimate details of this journey but only will say Sheridan has peace and is ready when his time comes.
This past week has been yet another amplified version of hell and bittersweet days that will always be cherished. From the pain pump surgery to an ER visit, hospital admittance, transfusions, and everything in between. Trauma, pain, and fear have been the constant denominator.
It is with a heavy heart and great sorrow that I share that Sheridan has acknowledged his body cannot continue. He wants more than anything to live, but the suffering has become too much. His heart is beyond stressed, and his body continues to weaken. His need for oxygen continues to increase and time appears to be limited on this earthly plane.
Please pray for Sheridan. All our hearts are breaking.
Where there is great grief, there is great love.
This past week Sheridan spent in various rest states. Some days were better than others. He had a couple of good days, eating-wise, followed by more days of nausea, vomiting, and lack of appetite. Sleeping during the night on dialysis has always been tough, but the insomnia seems to be amplified now.
Most days Sheridan spends lightly sleeping in bed or his recliner. His pain seems to be mostly controlled by oral pills. It is difficult to tell if the pills for appetite and nausea are effective, as nothing has been consistent.
Oxygen was ordered for his comfort to use at home, as his oxygen stats still remain on the low side. We are still waiting for that to be coordinated by the provider, since last Wednesday. The silver lining of the week was that no blood transfusion was needed. Labs and X-rays will continue weekly to monitor his lungs and his need for blood.
Sheridan is scheduled to have surgery for a pain pump to be implanted in his abdomen that feeds directly to his spine on Tuesday (5/16) this week. This will take the place of the oral pain medicines. The hope is that the pump will have lesser side effects and enable Sheridan to spend more time up and have more good days than bad.
Pray for more good days ahead, increased appetite, decreased nausea, and for Sheridan to enjoy activities as he chooses. Prayers for miracles, grace, and peace on the journey.
Monday was a day packed full of fear and triggering moments reminiscent of January’s pain and concerns. Sheridan had stabbing chest pain on his left lung side, the good side. He was about 75% sure something was really wrong and related it to the pain that had occurred when his right lung had filled. We spent the day calling his surgeon and doctors. Amongst those calls, it was relayed that there would not be any thoracic surgical intervention or radiation, and they gave their best estimate of what future time was left, due to the new disease revelations found in last week's MRIs.
Those calls led to us spending the night in the ER. Sheridan had every blood test under the sun, all of them later to be said they were not true indicators of anything, because of his kidney failure. (Meaning someone who had a heart attack would have the same markers as someone who had kidney failure, so they weren’t accurate for diagnosis.) His pulse was racing between 160 and 200. His heart was working overtime. He struggled to breathe, and it was flat-out scary, yet again.
They completed a heart EKG that only confirmed the heart was working harder than it should. An ultrasound of his heart followed that was said to show limited fluid near the heart, but otherwise normal. Additionally, they checked his right lung, which we already knew was in bad but stable shape and then they checked his left. The ER Dr said he saw fluid on the left. He then went on to X-ray to confirm. The X-ray showed nothing other than the known right-side fluid. Then he ordered a CT. He said he read it himself and compared it to the prior. He said there was a new cancer lesion in the left lung and that there was fluid. He said we should get admitted for the left to be accessed and a drain put in, as we had discussed earlier in the day as a possibility with his oncology team and surgeon via phone.
We talked back and forth and decided because there was no way to have the drain put in immediately, that we would go home for the remainder of the night. We decided this due to him already having a palliative doctor appointment to discuss nutrition and nausea in the morning, and the fact that appointments were very difficult to make. We made it home by around 2 am.
Tuesday, after 3 hours of sleep, began with the meeting with a palliative doctor to discuss nausea and what little nutrition help could be provided, in addition to the pain management side of things. It was lackluster and was reincorporating meds that had been used in the past, that were hit or miss. After we went home and waited for instructions on how to be admitted to the hospital, so they could further monitor his breathing and get the lung drain placed. In the calls leading to admittance, I was told in a private conversation that due to the presumed new left lung lesion and lung filling Sheridan’s time would likely be even more limited.
After a long wait and the process of admittance, they made Sheridan comfortable and scheduled him for his lung procedure on Wednesday morning. Sheridan was monitored overnight, and his oxygen and heart continued to be irregular, with his oxygen stats presenting lower than preferred.
Wednesday was maddening. We went into the day with the expectation of a permanent drain being placed to resolve the left lung fluid, as the ER had instructed us, based on that Doctors read of the CT. After what seemed to be the quickest and best surgical experience we have had to date, we were shocked to find that there was reason for concern. In observing his chest, we were unable to locate the drain that was to be placed. The recovery nurse had limited knowledge of what occurred but offered to reach out to the doctor. Only later, after being taken to his room and no visit from the procedural doctor, we read his chart notes and removed his shirt to examine his sides and back. We only found a small wound on his already scar-ridden right side. Instead of what we understood all along as the plan, the right lung was drained by an image-guided needle syringe, and nothing was done to the left. All of this was done with no consent, or explanation of what had happened. Talk about a shock and disappointment on all levels. A cautionary tale of medicine not being right and a further loss of trust, in nearly 2 years of misleading conversations, missed opportunities, and excuses.
Next came yet another shock. We read the CT official reading from the ER visit, commented on by a radiologist who reads CTs, versus the ER doctors’ interpretation. Here it stated nothing of a new lesion in the lung and nothing about fluid. Yet another twist in the story, and more cause for pause of what was going on. We demanded further heart follow-up, as no one could truly explain what had happened or any of the missteps. We wanted a cardiologist’s input on the heart, so we could make sure nothing that could be resolved was missed.
The doctors said that was fair and humored us by having tests completed and read by a cardiologist, prior to discharging Sheridan. Unfortunately, the cardiologist only confirmed the small amount of fluid and that Sheridan’s heart, although erratic, had no abnormalities or explanations within the heart.
After a semi-decent night of rest at home, Thursday was full of nausea, vomiting, stomach pain, and some labored breathing. Still reeling from the days prior and questioning everything, we spent the day attempting “normal” tasks. Activity takes a lot of effort for Sheridan, especially after the days and week past. The night led to being extremely exhausted and in and out of various sleep states.
Friday and today have been very difficult with sheer exhaustion, overnight insomnia, and intermittent pain. The drugs seem to be working mostly, for the moment, and there has been no vomiting, which is a big win for the day.
Continuing to prepare for the worst but clinging to the positives. Taking every moment and emotion at a time, and cherishing everything good. So very thankful for each moment, each memory, and each treasured gesture. Although we don’t know the course ahead, or how many days will be enjoyed, we are still planning adventures and oh so very grateful for Sheridan. His strength and perseverance are more than admirable and humbling, yet soul-crushing at the same time. He is so loved and cherished deeply, more than words can express, today and always.
And if anyone will beat the odds and predictions set before him, I assure you it will be Sheridan.
Monday, we visited with Sheridan’s surgeon. During this meeting, we went through Sheridan’s most recent chest CT in depth. We were not prepared to see that the disease progression that explained his pain was far more extensive than what was originally explained or understood. Tumors now travel the majority of Sheridan’s left lung lining and affect numerous ribs. This is roughly double what had been present prior. The surgeon explained it was the worst he had ever seen and that it was a testament to Sheridan’s mindset that he was still here today. He said surgery would involve removing his lung, the lung lining, and ribs. He said he was unwilling to do the surgery. Overall, he said Sheridan should go live his life and that he would keep him in his prayers.
Later that afternoon the surgeon called with another Hail Mary option, that we have yet to hear further details on. Apparently, skilled Thoracic surgeons regularly perform similar operations in mesothelioma patients. He said there were no guarantees, but that he would have them review Sheridan’s case in hopes of them offering a surgical option that would assist in pain relief, but not be curative.
Tuesday was spent officially meeting with palliative care to review Sheridan’s mounting pain and potential relief options. The palliative doctor was concerned Sheridan’s pain was widespread now and in his lower back, acknowledging a large hard lymph node in his pelvis. She ordered 2 MRIs, with the intention of revisiting this coming Monday to make a final decision on a surgical pain pump being placed. The pump would hopefully be effective in relieving the deep pain affecting his side and back.
Wednesday, the day was spent at the hospital having the embolization completed and a blood transfusion. Thankfully the procedure, although far longer than expected, was completed without complication. So far Sheridan has gone without a bloody nose and has been resting, albeit uncomfortably due to all the other pain issues.
Thursday was a day of frustration, health care miscommunications and failings, and finally his MRIs. Friday a call confirmed the results were in and that there was definitely an explanation for the increasing pain spread. Unfortunately, more devastation, with new metastatic bone cancer lesions throughout his pelvis and lumbar spine. Additionally, acknowledgment of new fluid beginning to accumulate in his right lung (the originally “good” side), explaining his further breathing difficulties as of recent.
Sheridan continues to struggle with weight and eating. Nausea and pain are relentless. Medication side effects are brutal. Sleep is hard to come by. Continued dialysis and limited diet only make things more complicated.
None of this is easy to even acknowledge as truth, but it is what it is. Right now, hope looks like pain relief, comfort, making memories, and enjoying things that bring Sheridan joy. Without a shadow of a doubt, pray for good days, free of pain. Selfishly I’ll take as many as he can bare, but ultimately, I want whatever Sheridan wants. I want him to be honored, respected and acknowledged for everything he was and is, and nothing of what this disease has stolen from him.
Pray Monday brings clarity. Pray the oncology team and surgeons will make his case a priority, unlike past instances where we were left in the dark. Pray
After begging for answers, instead of just meds, it was relayed that a twisted diaphragm, a lymphatic system that is not draining, and a rib lesion are all contributing factors to the immense back and side pain. We have asked on several occasions if any surgical options will be offered, as they have seemed far more concerned with addressing pain and comfort, than treating the problems. Finally, yesterday, they called and scheduled an appointment to meet with the surgeon on Monday to see what, if any, options there are. Pray for some divine intervention on this one.
We are back to blood transfusions and lab down-trending. Excessive bloody noses resulting in trips to the ER appear to all be side effects of the oral chemotherapy. Wednesday Sheridan will have an in-patient embolization completed, in hopes to stop the nose bleeds that have been ongoing since January. Again, prayers this is the solution.
Each day as it comes, and thankful for each one.
In a matter of days, Sheridan’s labs rapidly declined. Thursday night erupted with mounting intolerable pain in his right side and back. By Friday, the pain was too much to bear. This led to a prolonged emergency room visit, severe anxiety, a CT scan of his chest, a transfer of care to a different hospital and ultimately being admitted.
The CT showed some stable lung tumors and some minimal increases in others. It revealed some changes to his upper right lung that present new concerns, posing risk for infection or worse. All conversations have been very open-ended, and no definitive answers or solutions have been provided. They have only acknowledged their intention to manage his pain at this point.
We have no other information. We are hoping for a short hospital stay. However, they have said his pain control will be the deciding factor for him to leave.
Days are long, and years are short. Words sting but are only words. It is amazing the power the mind has over the body. It is very thought-provoking to know how influential words can be, and how they can ultimately impact your health. There is so much truth to the statement, get busy living or get busy dying. Such a statement is heavy but has so much truth to its meaning.
Watching firsthand both sides of the coin is something that is so damning, but so beautiful in its own twisted way. People do not have the ultimate say. Their opinions are just that. No amount of research or knowledge can predict the day and the hour in which will be the end of this life or the miracle of a new beginning.
All this cryptic writing leads to yet another vague update of unknowns. Sheridan has been in excruciating pain. Doctors have only been able to assume the cause is the lung lining tumors, as nothing new in the area has presented itself to explain his symptoms.
His most recent weekly labs have remained fairly stable, which is very atypical in comparison to the past year. We are taking this as a small win. He has gone without a blood transfusion for over a month, instead of his usual every 2 weeks, give or take.
His weekly x-rays have continued to remain stable, with no new accumulation of blood in his lung, yet no improvement either.
The original “planned” PET scan for the end of March did not happen, and we are not sure if or when it will. His oral chemo pill dose was increased, in hopes to be more effective, which has caused excessive fatigue, vomiting, and weight loss.
There are a ton of unknowns right now, really as per the norm. Keep the positive vibes and prayers coming!
The last few weeks have been full of unplanned ER visits and the need for blood transfusions, outside of the weekly scheduled lung x-rays and labs. Each day has been marked by bloody noses, many times very excessive in nature. They have caused vomiting, blood clots, and overall some very tough days. Low energy really has been the norm, whether it is a direct result of how taxing 8 hours of dialysis is each day or the oral chemo pill. It takes a lot for Sheridan to push through and do mundane tasks. His labs still have not been consistent resulting in the continued need for blood and adjustments to his dialysis regimen.
Tuesday Sheridan acknowledged having mounting pain in his right lung again, which had progressed over a period of days. This resulted in him going in for an x-ray and CT, fully expecting that the lung was likely filling again and a drain was likely needed. Surprisingly that was not the case. The x-ray indicated, as had the prior 3 weeks, that the fluid level on the lung remained stable. However, the CT showed something far different. Disease progression was evident, with tumor growth continuing. This was the only real explanation his team could offer to explain the mounting new pain.
Due to kidney failure, Sheridan does not have options for other compassionate care drugs or trials, that others with metastasized osteosarcoma have. His team has indicated they could increase the dose of the current drug to see if it would be somehow more effective. Otherwise, options are limited. Surgical resection may still be an option to reduce the tumor burden and pain, but it still has not been definitively offered.
As always, nothing is set in stone. Sheridan has to decide what he is willing to tolerate, as unwanted side effects from an increased drug dosage are highly likely. Additionally, he has to decide if he is willing to undergo multiple painful lung operations, that is if the surgeon is willing to operate. I stress the word IF, because historically medical plans have changed regularly, and Sheridan has to have the desire to proceed, knowing how it will affect him.
Continued prayers for peace, pain reduction, wisdom, hope, and miracles!
No news is good news, I guess. That seems to be the theme, as of late.
Sheridan is home. He had a lung drain at home for a time. In total, he drained off over 5 liters of blood before opting to have the doctor remove it, due to the immense pain it caused. During that duration and the weeks that followed his lung continued to slowly fill. Sheridan was given three options, with no one option being superior to the other, or medically recommended. Sheridan opted to continue to have his lung xrayed weekly to monitor the fluid, as opposed to surgery or having a new catheter drain placed. In the last couple of weeks, the fluid has managed to stabilize. His lung remains roughly 3/4 full. We are praying his body begins to naturally absorb the fluid.
Additionally, Sheridan began an oral chemo, the day following being discharged from the hospital. It causes fatigue, bruising, and his nose to bleed each day, but so far no other extreme side effects. He will have a PET scan, at roughly the end of March, to see if the chemo drug is working at stabilizing or shrinking any of the diseased areas.
Sheridan continues his in-home dialysis 8 hours daily, and it has become second nature now. It remains very taxing on his body and leaves him with very little energy. His appetite has increased a bit, although he still follows a rigid diet. He hasn't gained any weight, but at least he is consuming more than before.
Praying for good scans, for the fluid to dissipate, with no critical events between now and then. Still waiting on a miracle!
Yesterday, Sheridan had unfathomable pain. This pain was beyond anything he has ever experienced. More pain than a leg break, more pain than a donor bone reconstruction, more pain than an amputation, more pain than the mind-bending effects of having devastating news hiding behind every corner, more pain than finding out his cancer spread multiple times, more pain than finding out the leg that was amputated was cancer free, more pain than feeling let down by the people he trusted the most, more pain than having catastrophic organ failure and septic shock, more pain than having every hope and dream crushed over and over and over, more pain than knowing his kidneys had failed, more pain than having massive fluid restrictions and a highly limited diet, more pain than having poison injected into him time and time again. I could go on and on. This pain was without words, sheer suffering on steroids, and rendered him unable to execute the simplest task.
Coincidentally, this sudden onset of pain was timed out with his PET scan and oncology visit to begin the oral chemo drug to suppress the new areas of cancer growth in his lungs. The timing was nothing short of a miracle. It was a whirlwind of events. We were sat down, we were shown an image of his lungs. We were shown his whole right lung was completely “full” and his heart displaced into his left rib cage. This conversation came with a lot of other concerning information.
They listened to his chest and there were no breath sounds from his right lung at all. There were a lot of assumptions made as to what was in the lung and why, but the bottom line was emergent surgery had to happen. The surgeon cleared his schedule and had him whisked away immediately. Sheridan opted to stay awake for the surgery, with the hopes of being released the same night, under the best of circumstances.
The surgeon's initial thought was he would be draining leaking cancer fluid from the most recent tumors in his right lung lining. The alternate thought was far more dire. The surgery took less than 2 hours, leaving me to believe that it was routine and went well. As the alternative discussed meant the potential of removing a ruptured tumor or far far worse.
The surgeon sat with me and proceeded to share what he equated to "really bad" news. I was shocked to hear that not only did they drain off two liters of blood, but they still were left guessing what the cause was. He was unable to blindly assess where the blood had come from, nor proceed to do any exploratory surgery, as he might in a patient without such a complex condition. We briefly chatted about “what if” scenarios, and the consequences. He assured me he had several ideas, but he could not pursue anything until the remaining blood was addressed/drained. This left Sheridan admitted to the hospital with a chest tube that has now set actual records to how much blood they have removed, and he still continues to drain.
The "plan", always subject to change, is to get a CT scan before being discharged. The hope is this diagnostic tool will reveal all that was hidden in the PET scan by the full lung of blood. It will be telling if there will be a need for part or all of the lung to be surgically removed. If it is found to be outside the lung, there are far fewer options.
Even in the best case, surgical intervention would not be the resolution for the cancer. That is the place where only miracles and God can dictate.
The above doesn't even begin to encompass the mental toughness and fortitude it takes to power through. I don't think it is easily understood how substantially Sheridan's cancer has impacted his life. That is not to say hope is lost or miracles do not happen, but the reality of his day-to-day life is quite cruel. People's assumptions, expectations, and or well-intentioned gestures, truthfully can be very harmful. The saying "there are no words" really rings true.
The truth is he is a fierce, valiant, strong fighter. He has walked through so many levels of hell, that your average person cannot even fathom the extent of just one. He has faced imminent death and lives to tell the story and slay another day. His truth is he was diagnosed with a cancer that had already spread upon diagnosis. That spread, the rarity of the disease, and the lack of research and funding left him with a devastating prognosis straight out of the gate. All that said, he hasn't given up. He has plans, goals, and dreams. He pushes through the hardest days. He is my hero. I admire his strength and will stand proudly beside him every step of the way.
Monday, January 2, 2023, Sheridan will have another PET scan. At that time, he will begin daily oral chemotherapy in hopes to suppress growth.
In the meantime, he is completing 8 hours a day of dialysis at home. His appetite is just starting to increase, but his diet is very limited.
Prayers the New Year brings much needed health, healing, good news and miracles!
Dialysis training is complete and will begin at home tomorrow. It has taken its toll on Sheridan. Being on dialysis has reduced the foods he is able to eat, so he is still adjusting to the suggested diet changes. It has decreased his appetite substantially and caused significant weight loss. His nausea has reduced though, so we are hopeful with time he will get back his appetite and regain needed weight.
As far as cancer treatments, his team is calling the disease spread non-curative. At this point, he has a couple chemotherapy options that are compatible with him having kidney failure. These chemo’s have their own side effects and are used in hopes to reduce/slow new growth. His surgeon implied he would be willing to work with his lungs, should Sheridan follow through, and the treatment be effective. At this point, Sheridan has opted not to make any definitive choice on if he will pursue further therapies.
Please pray for wisdom and discernment for Sheridan. We all want what is best for him, and only he can make the decision that he feels is right.
He is loved beyond any words can express, and miracles happen every day. I pray it be God’s will that he receives that miracle.
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