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sisterbestill · 6 years

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I write this on my iPhone, sitting next to my dad, who is currently getting his 4th Chemo Therapy Treatment of Carboplatin and Taxol. The drugs are chemical bombs and each week the accumulative damage grows. They pre-treat him with histamine blocking meds so he doesn’t have reactions, but he has reactions during the infusion, like he can’t breath. The nurses are well aware and calmly manage the reactions with more meds. These meds cause him to become very drowsy, so the remainder of the day becomes about keeping him from falling.

I still am trying to process all that has occurred since early August 2018. I look back on these pictures of our last outing at Lake Jocassee and never would have guessed how things would change just a week later. I’ve often wondered how cancer strikes people so quickly, now I know. I am writing this so I will never forget each minute that will forever live with me. I am also using this as a way to cope and understand something that is unfamiliar and terrifying.

My parents have always taken care of themselves and one another. They have been very lucky to have good health and I have been lucky to have them as energetic as they are in their eighties. When they moved up here from Florida, I was delighted I was going to finally be able to spend more time with them - like daily and weekly vs. just twice a year. They moved 15 minutes away or a lovely 60 min bike ride through rolling countryside and mountains. I was giddy and felt the universe shift a bit. I felt pulled to them. They are in fact two of the coolest, funniest, and open-minded people I know.

Shortly after this kayak trip (photos above) they decided to make a pact to live to 100 and created a “bucket list”. They were thankful for their health and never took it for granted. Perhaps the bucket list idea was a way to for them to celebrate how young they felt or perhaps they recognized they were chronologically getting up there.

Paddling on Jocassee was relaxing, calm, and beautiful; Certainly an experience they would have loved to have recreated again and I am hopeful they will. It may look different in the future, but I suspect the beauty and calmness of the lake will bath their brains in peace.

A week after snapping these pics, I got a call from my mom, she was on her way to the ER with my Dad. I was working one floor up and met them in the ER. While we waited, I learned my Dad had been feeling fatigued for several months and had developed shortness of breath over last few weeks. It wasn’t evident on the kayak trip that he was struggling, but it was obvious in the ER. My mom said they had been to their primary care several times and their primary care doc reassured him it was natural aging, as tests did not reveal anything to be concerned about.

As we sat for 6 hours in the waiting area, I was certain it was nothing serious. Afterall, my dad had no other health issues other than a little hypertension. His meds consisted of an 81 mg baby aspirin and amlodipine 2.5 mg each day - what a lucky guy. I was thinking maybe he had pleurisy or walking pneumonia.

We finally were shown to a room and labs were drawn. We were relieved to finally get things moving. By this time my sister, Lori, and I were getting silly from the fatigue of waiting. We were thoroughly entertained by a belligerent drunk guy on a stretcher in the halllway who seemed to draw all the attention of the medical staff while we well-behaved folks waited for answers.

I noticed my dad’s HR would easily jump to a sinus tach in the 130s with just a little bit of movement. Something didn’t seem right, but I was not going to speculate or think the worst. I was just his daughter, at his side, keeping the mood light.

We were informed by the physician assistant caring for us that his left diaphragm was elevated and was probably the cause of his shortness of breath. I was a little taken back as this was an unusual finding that left me with a knot in my stomach. Not too long after this finding he was whisked away for a CT of his chest.

He returned to the room and we waited for results. The PA came in with a sticky note and said she read off it: “You have a very large anterior mediastinal mass...No one here will operate because of your age...We are discharging you and you will need to see an oncologist.”

Our mouths dropped. My stomach bottomed-out as she said “mass” and my face flushed. We all just blankly looked at one another. Go home?

I spoke to a good nurse friend in recovery and she called the thoracic resident. I spoke to the PA who delivered the news and said, “We can’t go home. He is short of breath. He and my mom live alone. His Heart rate is bouncing up to 130s. He is weak. Please admit him and consult thoracic surgery.” My dad chimes in, “I’m not a throw away!” Meaning he doesn’t want to be dismissed because of his chronological age. He was far healthier than most half his age and this deserved a second look. The radiologist who read the report never actually saw my dad, but he did see a birthdate.

The next day, the interventional radiologist who read his CT and gave us the crappy news also did a needle biopsy of this baseball size mass.

We went home on a Wednesday after 2 days and waited. We were waiting for results and waiting for an appointment with a thoracic surgeon. Waiting is tough and if you are sick you will learn the meaning of patience.

We made it to Sunday when I thought something wasn’t right with my dad. He continued to have episodes of shortness of breath, but something was still off. I knew he had anxiety, but this was different. He said he felt fine and I almost left it at that. As a nurse you learn to listen to your 6th sense.

My parents live in a remote part of the county where everything is 30 min away. I left there house and an hour later returned with a pulse oximeter that I purchased from a CVS drug store. His oxygenation was 95% not bad for a guy now breathing 40 times a minute with 1.25 lung capacity. However, his pulse read 155 and I was baffled. No way?! I palpated his radial artery and it was a match. Off we went to the ER...

ER visit number II was faster as we went to a smaller satellite hospital 30 min from their home. The rhythm was too fast on the monitor to establish what it was so the ER MD attempted to chemically cardiovert him with adenosine. Adenosine is pushed quickly through an IV. It stops and restarts the heart. I can not lie, I was nervous. It’s so diffferent when this is your own family member. My mom tearfully excused herself and I stayed by his bedside. The ER doc informed my dad it would suck, and we proceeded. It sucked. He felt his heart stop and I watched his eyes bulge and panic come across his face for 3 of the longest seconds of my life. We were able to see he had an underlying atrial flutter. We were started on a verapamil drip and were transported to the main hospital for management by a cardiologist. His heart converted back to a normal rhythm on the verapamil drip before we left the ER in transport to Main hospital at 1 am. We were under the impression it was stress related to the new shitty diagnosis and having to wait on results.

The next day he had an echocardiogram to look at the structure and function of his heart. He was started on a Metoprolol a drug that blocks adrenaline and keeps heart rate lower and it was doing its’ job.

He spent 2 nights in hospital and outside of naps, lacked solid hours of good sleep. We finally got word that his ECHO results were good. No one said a word about metastatic disease to his pericardium. We were told he had a small ring of fluid within the pericardial sack, but it wasn’t a lot and certainly not something they felt needed draining. The atrial flutter responded well to the metoprolol and we were discharged home to once again wait for our thoracic surgery appointment.

We finally made it to the thoracic surgeon to learn of what was growing in my dad’s mediastinum. I was hoping for a thymoma, but instead we drew the really short stick with a highly aggressive, highly invasive cancer called: Squamos Cell Thymic Carcinoma.

WTF? Come on! Can we not catch a break here?

I had never heard of this type of cancer and neither have many in the medical field cause in addition to being aggressive and invasive, it is also a rare tumor. A rare tumor that hasn’t impacted enough lives that researchers devote a lot of time, money and effort into understanding it. Not only that, but sadly, most people die before any data can be collected. Once you get short of breath, dry cough and fatigue it is usually advanced.

PET Scan had some questionable lymph nodes light up, but no other disease was noted distal to the mediastinal cavity.

We hoped it could be removed. Excising the tumor was first choice in the management of this cancer and had the best outcomes, but to do this the surgeon would need to get clean margins. The thoracic surgeon wanted a cardiac MRI to examine if this tumor had invaded any of his great vessels. CT scans had only shown that the tumor was abutting the ascending aorta, but we needed to be certain cause the surgery involved opening his sternum with a saw and recovery would be 5-6 weeks. The surgeon emphasized that he didn’t want to operate and create trauma without being able to get the entire tumor. He didn’t want to delay care in a time-is-of-the-essence scenario.

It was 6pm on a Monday evening just days out from last hospitalization, when I returned to their house to check on him. Earlier that morning, my mom and I took his mini Pomeranian back to the vet and learned it was dying. The vet apologized and said it was time. We put my dad’s 18 y/o Pom, Ben, to sleep at 10:30. My mom held him and he passed. We were a mess. We told my dad and his response seemed flat. Distant.Something else was on his mind.

I stayed close and felt something was amiss, something was unfolding, progressing. I was thinking is he getting an infection? His temp was 100.2, slightly more SOB, and his pulse was 95-110 at rest, on a beta blocker. Nowhere near his norm and I could not ignore this or excuse it. My dad is precious to me. I looked at my mom and dad, apologized as I informed them we needed to go back to the ER. They were agreeable. I think he was relieved I recognized something was wrong.

Shortly after arrival at the satellite ER labs were drawn and ultrasound of his heart was done by ER doc. He said there appeared to be a large fluid collection around my dad’s heart. We were again admitted to ICU for a condition called Cardiac Tamponade. Early the next morning he had the fluid drained 600 ml from around his heart. The fluid build up which is inside the pericardial sac squeezes the heart. The heart can be stunned and go into failure. The fluid that was drawn off was sent for cytology. It was suspicious. It was likely metastatic disease.

In fact after annoying the cardiologist with repeated questions in the hallway, he motioned me over to his computer screen. He showed me the ECHO and pointed out the thickening of the pericardium and showed me a mass dangling from his ventricle. I didn’t need to wait for cytology. This was confirmation for me that we were very far into a disease process. My face flushed, my heart sank, and my stomach dropped as I comprehended the situation. I thanked the MD and my mom asked what he was showing me. I told her. I saw the color leave her face.

The thoracic surgeon was still hoping to remove the mass as the CT didn’t show it had invaded the great vessels, but he did want a Cardiac MRI which was on the back burner. We were still in ICU cause the Cardiac Tamponade and procedure to drain the fluid triggered a lot of Atrial Flutter and Atrial Fibrillation. We waited for the Cardiac MRI for 3 days. There is only one machine and his was repeated twice before they got quality images. The thoracic surgeon finally met with us and after consulting his partners, radiologist, and oncologist, it was decided surgery was just too risky and he wasn’t certain he could get clear margins. He stressed how he didn’t want to create more problems or delay my dad in getting treatment if there were complications. We very much appreciated the thoughtfulness of his answer. We really didn’t have a minute to spare. The surgeon decided to cut a window in my dad’s heart so the cancer did not build up more fluid and compress this vital organ again. The cancer cells would drain into his belly instead of filling the pericardial sack.

We were discharged home in a questionable state: weak. At first we were told he would stay until he was walking well, but the hospital was full and we were off-loaded unexpectedly. Home is a place with stairs. Stairs to to get in and stairs to get out and the most movement he had done in a week was walking 25 ft with a walker and that was exhausting for him. I was concerned about falls. How were me and my mom going to get 170 lb man up 5 steps safely? He was too weak. He hadn’t eaten, he had not slept in 10 days. We were behind the eight ball and chemo had not even started.

Chemo is rough. To survive chemo, one needs some level of fitness, meaning able to perform ADLs independently and move often. We were overwhelmed. The next week was labor intensive and emotionally draining. Here we were home and we were struggling. He still wasn’t eating, still not sleeping, and my radar was on constant alert. I spent my days observing and looking for subtle changes. Oh and there were changes that needed immediate attention as he flipped in and out of rapid atrial fibrillation and got urinary tract infection.

I was scared and my dad was terrified. In times when we were alone, he would ask me: “How did this happen?” He would shake his head as if disappointed in his body. Disbelief. He was unable to comprehend it and he too was terrified.

To be continued...

#thymiccancer #cancer #chemo #raretumor #cancersucks #thymiccarcinoma #thisislife

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sisterbestill · 6 years

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Liters of IV fluids, 2 units of blood and we made it to and through Chemo #6. It has not been easy. Chemo is weekly and so we don’t really get a reprieve from feeling crappy. Walking is now a challenge. We ended up on the floor last Friday and we almost could not make it back to vertical. He reminded me of the scarecrow on the Wizard of Oz with wobbly legs and poor balance. Him falling is my biggest fear. Falls are so prevalent amongst the elderly and are often the domino that starts the spiral down. I obsess about him using his walker. I also fear my dad falling on my mom. She is diminutive in stature and a high risk for for fractures herself. Just to leave their house there are 5 brick steps to navigate in their garage and it is the most anxiety producing activity we do - getting up and down 5 simple steps. My mom expects him to get stronger and isn’t quite ready to build a ramp or get a chairlift. I think it would be peace of mind, but I am different, a realist. Debility isn’t easy fix at 84.7 years old.

My mom and I watch my dad very closely. We monitor how much he drinking, urinating, the color and clarity of urine, his last bowel movement, calorie counts, skin changes, activity level and what his vital signs are have become a daily obsession. We watch and report any slight changes to an on-call nurse practitioner and wait for direction. This is a constant process of being hyper-vigilant. I feel we do not have a lot of room for error. I am militant about contacting the NP for even slight changes. For example, his urine appeared not just amber but rust in color. I do not know if there is blood, bilirubin, severe dehydration or a combo of issues occurring. Follow-up labs told us his liver enzymes spiked sharply took a big hit this week. The elevated enzymes tell us his liver is inflamed and we need to watch closely. This type of monitoring keeps us walking a tight rope.

How people do this without support is beyond me. It is what also makes my heart ache. It’s profoundly sad to know that there are people who get dealt horrible diagnosis and have no one to assist them. I am not sure everyone has the time and energy to contact local organizations for support. Even in my dad’s case, his care falls on us. We have a nurse that visits once a week to check on him but we apparently do not qualify for any additional help. My parents have Medicare and a supplement through AARP UH. They paid into a system and there is no help if a patient is at home. That sucks because home is the best place and where people should be taken care of.

One of the things that has compounded this difficult course is that the tumor paralyzed my dad’s left diaphragm and he complains of constant fullness and feeling like there is a knot in his stomach. Chemo alone takes your appetite away, so I feel this is one of our biggest hurdles. On X-ray, it appears the elevation of the diaphragm has allowed some intestine to migrate up into what normally would be lung space. I am sure the fullness and knot he feels is a space issue that probably will not change. Even with encouragement and explanation, we can’t seem to impress upon him the need to push through and at least make an effort to sip and nibble. It’s futile. Weekly, we seem to require additional IV fluids and lab work.

My dad is frustrated, angry, sad, and exhausted. My mom is frustrated, angry, sad, and exhausted as well. They have been in close quarters now for months and caregiver fatigue is in full-effect. My dad may look at us and acknowledge an understanding of importance of eating, drinking and moving, but he does not not execute. He makes a lot excuses. It’s all very odd to me cause it is so disconnected to what his goals are. But this is cancer; the bomb is chemo and we have entered an alternate universe...

#cancer #thymiccarcinoma #kattouf #caregiver #beatcancer #bestrong #cancersucks

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