A Shrinking Tumor

Today, Mark received his 4th radiation treatment on the tumor near the pancreas. Right after our last treatment on Tuesday, Dr. Crittenden told us that she had to shave off some of the radiation beam for the 3rd treatment because the tumor had already shrunk more than expected. Mark is more sensitive to these treatments than most—He gets more nauseous, but he has also has a quicker response! 

We knew something had changed because Monday night, when he rolled to his right side, he was able to stay there for awhile—he hasn’t done that in a long time. 

Now, we wonder if the pain he has had in his upper abdomen since February has been caused by this tiny tumor pressing on the bile duct. The doctors always seemed baffled why his pain was there when the tumor in his liver was on his right side. 

Everything seems to be moving in the right direction. Thanks for your loving support, faith and prayers. 

Radiation Begins

Today Mark received his first dose of SABR radiation to the tumor close to the pancreas. It's a good thing, as this past week has been challenging. Pain and nausea keep him from eating, so he is losing weight-- about 30 lbs in the past month or so. He sleeps a lot and isn't interested in doing much. After discussing this with our radiologist, she indicated that he may not have enough cortisol, so we'll increase the dose and hopefully see improvement. 

The procedure took almost two hours. Mark had to lie perfectly still on his back the entire time, with directions on when to breathe and hold his breath. During the holds, they zap the tumor. With this new machine, the radiation is delivered spot-on without destroying surrounding healthy cells. It really is impressive! 

Of course, there are side effects which are mainly nausea and fatigue. He already has those, but I guess it could get worse. The schedule keeps changing, but currently, there are three treatments next week and four the following. Pain will initially increase, but then the shrinking will begin.

As we headed to the clinic this morning, Mark exclaimed that it was "Healing Day!"  That's certainly what we're hoping and praying for. May the healing begin!!

Ups and Downs

 Yesterday morning (Saturday, June 12), Mark exclaimed that he felt better than he had in days. Eagerly he did a little work on the woodshed so that wood could be stacked inside. Wonderful workers were splitting logs from the two trees taken down two months ago and hauling them to the woodshed. Mark came in quite exhausted, even though he wasn't out there very long. That was enough work for one day!

After we took his two sisters Gail & Julie, to the airport, he went to bed around 4 pm. By 7 pm, he was experiencing pain in his upper abdomen, which increased in severity throughout the evening, and he got no relief with the prescribed dose of Oxycodone. Our main concern was that if Mark had a gall stone, another ERCP might have to be done to remove the blockage. That could delay radiation on the pancreas. The mapping has been done, but it would need to be redone if anything has shifted inside due to an internal procedure. If the tumor is not radiated soon, it could continue to cause damage to internal organs and processes, which would be life-threatening. While I handle crises quite well, I was frightened of those prospects. Two good men from the church gave Mark a comforting blessing. 

Our oncologist, who responded to our late Saturday night text, thought it was likely pancreatitis again, not a gallstone. With rest, liquids, soft foods, and pain killers, he may be able to forgo another trip to the hospital. But if it worsens, he will have to be admitted. An increased dose of Oxy helped Mark sleep most of the night, so we thankfully didn't have a third trip to the ER! 

This morning, he is resting quite well and has managed the pain without such a high dose of painkillers. Once again, we are hopeful that radiation on the tumor near the pancreas will start as scheduled on Friday, the 18th. 

We are aware that special prayers have been offered on our behalf, and we are truly grateful.

Keytruda Infusion and Liver Mapping

On Monday, June 7, Mark was discharged from Providence Portland Hospital. He was quite weak but is gradually regaining strength. While he still has pain and nausea, it is not as intense. His recent health issues have resulted in rapid weight loss--probably 20 lbs. in the past month, so he looks a bit frail. 

On Wednesday, June 9, Mark had his 2nd infusion of Keytruda. Fortunately, he tolerates it well with only minor side effects. While we were there, Dr. Taylor shared results from the blood draw. Mark's bilirubin count is now down to 5.7--slow but moving in the right direction, which means the stent is working. (His bilirubin count was at 11 and needs to get to 1). His color is definitely improving. 

Dr. Taylor mentioned that other numbers from the blood draw were elevated, indicating stress in the liver. That’s not surprising -- there's a tumor growing there! We were more concerned when we learned that it could also be from the immunotherapy causing his immune system to attack the liver. We certainly hope that's not the case, as he would have to stop using Keytruda. So far, it has been effective at keeping other tumors from growing. Also, an MRI of his brain was done to ensure there's nothing there (ha-ha, well, at least no tumor growth!)  We learned this morning that his brain is cancer-free. Yea!!

Today (Thursday), the liver mapping was done, but the results did not turn out. Contrast was used to highlight the tumor, hopefully making it easier to see, but it actually made it more difficult to pinpoint the exact location. The radiologist wants the simulation redone, so we will return tomorrow (Friday) for this 2-3 hour procedure. The good news is that he will not need an IV to infuse contrast when radiating the liver. That is a definite benefit; he's had so many IVs recently! 

This is the updated SABR radiation schedule with the MR-Linac machine: (5 for the Pancreas and 5 for the Liver) 

• June 18 - P
• June 21 - P
• June 22 - P
• June 25 - P
• June 29 - L
• June 30 - P
• July  02 - L
• July  06 - L 
• July  07 - L
• July  09 - L

We are so grateful that the pancreatitis was brought under control quickly so he can continue with these cancer treatments. The more we learn about the SABR (aka SBRT) radiation therapy, the more we realize how fortunate we are. Traditional radiation could easily radiate the pancreas which would have severe consequences. The MR-Linac has only been at Providence Portland Cancer Center for one year, and as I mentioned, it is the only one in the Pacific Northwest, and one of four in the US. Patients come from all over the world to have access to this new, amazing technology. 

Mark's two sisters are here for a week, and they have been tremendously supportive and helpful. They have done lots of yard work, cooked meals, cleaned, shopped, and anything else we've needed help with. What a blessing they have been!

Amazing Progress

Dr. Wheeler, the internist, told us more about Mark's bile duct procedure, ERCP (Endoscopic Retrograde Cholangio-Pancreatography--that's a mouthful!) The stricture in the bile duct made it difficult for the surgeon to reach the blockage. After placing the first stent at the obstruction, he tried unsuccessfully to place another further down, as he was concerned that one stent would not be enough to allow drainage. The duct is soft tissue, and if he pushed too hard, he could puncture the duct, causing bile to leak into the tissue, which would cause REAL pain. 

Mark's bilirubin numbers continue trending downward. Initially, it was 11 times the normal amount, and this morning it was down to 8. It's slow, but at least the stent is allowing the bile to gradually escape. Mark is still quite yellow, but other indicators are positive (i.e., a little lighter urine and darker stools -- in case you really want to know. Sorry, maybe that's TMI) 

The pancreas was likely irritated by the stent placement, but was that the only reason? Interestingly, Mark has had pancreatic-type symptoms for quite some time. He has complained of pain in his upper abdomen, especially after eating. In hindsight, we recognize that eating rich foods increased his pain. Even when Mark was in the hospital for his IL-2 treatments, and the oncologist would ask where his pain was, he would point to the same location in his belly. They seemed baffled because the tumor in his liver was on his right side. At that time, we didn't know about the tumor near the pancreas. 

Yesterday, Dr. Wheeler couldn't give us any indication of how long this hospital stay would be. Some patients heal in days, while others are weeks or even months. As soon as Mark can tolerate mild foods and water, take all of his medications orally, and have manageable pain, he can go home. Mark has been on a clear liquid diet for the past two days, and the pain has decreased significantly. Twice today, he went 6 hours between his 10 mg. dose of Oxycodone. He hasn't been able to do that in weeks. This morning, Dr. Wheeler was impressed that Mark had eaten cream of wheat for breakfast without subsequent pain. He indicated that Mark could be discharged as early as Monday. Dr. Wheeler allowed Mark to have a non-restricted dinner, so he had pasta and sauce. That didn't set as well, so he had to have Oxy in 4 hours. Even so, the pain was not as intense. 

Could it be that it's not the actual tumor causing the increased pain? It seems more likely that it's pancreatitis, although the tumor near the pancreas could be causing the inflammation of the pancreas. It's all a big puzzle, but more pieces seem to be falling into place.

The difference in the way Mark feels today versus Friday night is amazing! Today, he talked more, checked emails, did some texting, listened to Church and General Conference talks, and hardly slept at all. That's a significant difference from even yesterday. This is fantastic news! 

All of your prayers and loving support are making a difference! Thank-you!!!

Another ER Visit & Hospitalization

 After the mapping was complete, Dr. Taylor gave orders for discharge. He indicated that the bilirubin levels had not dropped the way he had expected. Because of the narrow opening in the duct, it could be taking longer than usual. Mark didn't feel great, but we thought he was gradually improving. Before we left, Dr. Urba came in to visit, which was a treat.

After getting home around 2:30 pm, Mark went to bed where he stayed. Occasionally, he would try to get up but didn't have the energy and was often nauseous and in pain. When I returned from the airport with his two sisters, Mark couldn't even get out of bed to visit. When he tried to eat, it came back up. Even water made him gag, making it impossible to take vital medications. With Adrenal Insufficiency, that is a big problem, as he has to have cortisol!

I texted Dr. Taylor, who called right away and said that Mark likely had pancreatitis--inflammation of the pancreas. He encouraged us to go to the ER as soon as possible. When we arrived around 10:30 pm, there were over 60 people in the waiting area. After checking in and explaining the situation, we went to find a seat when Mark's name was called. That was fast! Blood was taken, and he was given IV Dilaudid for pain. Around 1:30 am, two doctors from the hospital came to discuss Mark's condition. He definitely has pancreatitis and will be hospitalized. With all of the complications of the tumor, the stent, the tight duct, etc., a team of doctors will meet to decide on the next plan of action. That won’t likely happen until Monday. Hopefully, the stent will allow the bile to drain.  Mark is very sick. We have no idea how long he will be in the hospital, but it's where he needs to be. It's now 2:45 am, and we are anxious to get into a hospital room. A nurse just told us that we will likely be here for the rest of the night. Oh well. At least he is getting IV liquids and pain meds, and we're not sitting in the waiting area. We are thankful for that! 

Later:

I went home in the wee hours of the morning for a nap. This morning Mark was moved to the 4th floor. The nurses here know how to manage patients with pancreatitis. Mostly, he just sleeps.

Stent Placement and Mapping of the Pancreas

Yesterday, Mark was taken to surgery around 1:30 pm and didn't return until 5:30 pm. When he got back, he had been in recovery for a while, so he was awake and aware of the pain, which was intense. Several doses of Dialadin helped take the edge off. This morning he felt better but not as good as hoped. The surgeon who performed the procedure visited us today and explained that the duct was tight even before getting to the blockage, so it took a lot of maneuvering. The stent was placed, and he wanted to place a second one but couldn't do so. Once the tumor is radiated, it should be easier to go in. 

This morning Mark had the mapping done of the pancreas area to be radiated. Because he was so good at taking instructions and being very still, he was done in about an hour. Also, he did not have to have his arms above his head, so it was much more comfortable. Being strapped in tight caused a bit of claustrophobia, but the Ativan and some effective self-talk got him through.

Providence Portland Radiology is the only place in the Pacific Northwest with the new MRI-Linac machine used today for the simulation and will be used to administer radiation. There are only four in the US.   

MR-Linac: Precision Radiation Therapy Cancer Treatment Comes to Providence

In 2020 the Robert W. Franz Cancer Institute will bring the first MR-Linac to the Pacific Northwest. One of few cancer centers in the world to be working with this cutting-edge technology, Providence Cancer Institute shows their commitment to helping patients fight cancer with the best treatments available.

For specific tumor types such as non-metastatic pancreatic, liver, and prostate cancer, it is extremely important to track the internal movement happening during your cancer treatment. While you breathe, swallow or digest food, your internal organs move. This movement, even if barely noticeable, causes your tumor to constantly change its location. Standard radiation cancer care treats anywhere the tumor might move to during treatment, including the surrounding healthy tissue and organs. Unlike standard radiation care, the MR-Linac allows your doctor to track, and dose, your tumor in real time, greatly decreasing the amount of radiation to healthy tissue and organs. This means your tumor can receive a stronger cancer destroying radiation treatment, while at the same time decreasing the negative side effects.

"This technology allows us to track the movements and monitor changes in shape of the target and surrounding organs so that we can modify the radiation beams to fit the picture of the moment, not yesterday's. It permits stronger, shorter, more effective treatments to be delivered with potentially less complications," according to Dr. Steven Seung, M.D., FACR, Ph.D., Providence Cancer Institute Radiation Oncology Medical Director.

How exciting to have the opportunity to be a recipient of this cutting-edge technology. 

Back to the Hospital

We noticed Mark's skin and the whites of his eyes gradually getting more and more yellow. Tuesday morning, June 1st, Dr. Taylor ordered a blood draw. It came back as he expected -- high levels of bilirubin in the liver. The GI doctors he talked to could not see Mark until next week, which was not a viable option for Dr. Taylor. This would slow up the rest of the upcoming procedures. If we went to the ER Tuesday night, Mark could get the CT scan, be admitted, and ready for an operation on Wednesday. We were concerned about waiting for hours in the ER since this would not likely be triaged as an emergency. So...when is the least busy time in the ER? Google said the early, early morning hours. Therefore, we arrived at Providence Portland Emergency Room at 2:20 am. Within minutes, Mark was taken back to a room. By 3:30 am, the CT was done, and the ER doc told us that there definitely was a blockage. 

The ER room was tiny, with a bed for Mark and one hard chair for me. He was able to sleep, so I left him and slept in the car. (Note: the Tesla Y has two rows of seats that can be folded down, creating enough length for comfort. I had the foam mattress that I use each time we stay in the hospital. It fit perfectly in the back, and I even had a sheet, blanket, and pillow. Mark told me about the camping mode that fully controls the temperature. It was divine!)  

For over 12 hours, we waited for a hospital room to open up. During that time, the GI doc talked to us about how the procedure would go. There was no availability on Wednesday, so it was scheduled for Thursday at 3:15 pm. A scope will go down Mark's esophagus, past the pancreas, and up the duct to the liver, where a stent will be inserted that will keep the duct open, allowing the bile to drain. It's a 30 minute to an hour procedure and is typically done, outpatient. Dr. Taylor further explained that the blockage was due to the enlarged tumor in the lymph node close to the pancreas (not the liver). 

At 4:00 pm, we were taken to a hospital room on the 7th floor--the cancer wing, where we got to see some of our favorite nurses. We walked into a spacious room with a fantastic view. Wow, this definitely made up for the time we spent in the tiny, windowless cubbyhole. Typically, this room is given to transplant patients who stay for a month, and one had just been discharged. A nurse told us that they scan the ER list daily and pull cancer patients to the 7th floor. When they saw Mark's name, they got us into the suite! Sweet!! 

Because the stint would change the geography of the area to be radiated, the MRI and CT mapping scheduled for this morning were postponed. Initially, we were told that it would not be done for another week which was quite concerning, but Dr. Crittenden was able to get Mark in at 7:45 am Friday (tomorrow) to map the area near the pancreas. That is her first priority. Mark will have to lie still for long periods, sometimes with his arms over his head. It will take three to four hours. Next week, he will have another session for mapping the liver. 

His 2nd Covid vaccine appointment was this afternoon, but we moved it to tomorrow at a Walgreens close to the hospital. Mark's sisters fly in tomorrow afternoon and will be here for a week with their brother, dear. All is falling into place amazingly well.