Ice Storm Extraordinaire

The drive home from the hospital on Friday afternoon was slow, but we made it with only a few adrenaline rushes. What a relief to be home! The further south we went, there was less snow but more ice. Mixed icy rain was steady. Once we got unpacked and had dinner, I decided to treat ourselves to some delicious blackberry cobbler. It had been in the oven for no more than 10 minutes when the lights went out! Of course, it happens every time we get any kind of storm. Time to pull out the lanterns, battery-operated candles, and yes, the generator, if the power isn’t back on soon. The blackberry cobbler? Well, it was in a silicon pan, which I put on a rack inside a large pot with water at the bottom and a lid on top over the flame on the gas stove. It steamed until firm, and while it didn’t brown, it was fantastic! Certainly better than anything at the hospital.

We tried getting the generator going, to no avail. The house was getting colder and colder. We have a gas fireplace, but it wouldn’t ignite without power. After taking off the front panel, we found the battery back-up pack, put in 4 AAs, and Voila, we had a roaring fire. If we hadn’t come home, the kids (our son, daughter-in-law, and their two teenage daughters who live on the other side of our house.) would have had no heat. 

Since we have a well and the pump needs power, we didn’t have water, so we used our water storage and dipped buckets of water from the hot tub for toilet flushing. Saturday, we hovered by the fire, but we were able to whip up some tasty meals on our gas stove-top. It was surreal hearing all of the crashing limbs from our big beautiful trees! The icy mix kept on coming.

By Sunday morning, there was an inch of ice on every surface. Every blade of grass had a bubble of ice around it. Branches of trees were so heavy that they couldn’t hold themselves up and hunkered to the ground, with many branches snapping off and some trunks simply splitting in half. Multiple limbs on the big old Douglas Fur slammed to the ground, with one totally destroying the kid's playhouse. We still had huge branches on the play structure from the wind storm! One tree that split in half was blocking our driveway, so we couldn’t get out, but there was no going anywhere on that sheet of ice!

Then, angels arrived! Several of the guys from church, including our bishop and his counselors, came with tools to fix the generator. A few days ago, they didn’t know how, but now, they were experts! In no time, they had the generator hooked up to one of our main panels—the one to heat the other side of the house, power the pump, and keep the refrigerator and freezers going. They had planned to remove the tree from the driveway but didn’t think it would be wise to use a chainsaw while skating on an ice rink! 

Monday brought warmer weather, and the ice began melting. Hunks of ice plummeted to the ground from the roof and trees. It was like raining giant balls of ice—no going outside today either. Falling branches or huge chunks of ice - neither good! We hear that trees are down everywhere in the area, with many leaning on power lines.

Our daughter-in-law went out Monday afternoon—most of the driveway was melted. As she was trying to remove some ice, she slipped and went down hard, knocking the breath out of her, and causing excruciating pain in her back. After helping her up and slowly making our way into the house, we knew she had to go to the ER. Mark maneuvered the van around the broken limbs. X-rays showed a compression fracture in a disc in her lower back. She came home fairly well medicated, so she was able to get upstairs to her bed, where she will spend lots of time now. Full recovery will be around three months. 

Today (Tuesday) PGE workers were spotted in our neighborhood, so we are hopeful! 

As for Mark, he wishes he could do more but just doesn’t have much energy. Today he did get his chainsaw out and cut a few branches to clear the driveway. For him, that was play! But after less than an hour, he was done. Pain meds control some of the muscle aches and pains that are a side effect of the IL-2. Constant itching and peeling skin will be a thing for several weeks. Overall, not bad! 

Life can certainly be challenging. A friend recently sent us a book entitled, Find the Good. It’s been a great reminder to look for the positive in every situation. Often, we have been recipients of tender mercies that are such a blessing. One of those comes in the form of earthly angels who so generously serve others. (Our new neighbors have been most helpful!)

Dinner has arrived from one of those angels, so it’s time to go! 😀

After dinner, we found out that our granddaughter Katie who went to a cousin’s house since her mom has the back injury, slipped on ice and broke her left wrist! Crazy! 

   No picture could capture the hunks of ice falling from the trees! 

     It’s clean-up time!                                                                           

    

WE’VE GOT POWER!! YEA!!!!! 

Going Home a Day Early!

Mark was sick enough from the Thursday morning infusion that they decided he had had enough! The restlessness and inability to concentrate can be precursors to neurotoxicity, and they don't want him to go there. He had all day yesterday to rest and recover. This morning he ate breakfast and was sitting up quite chipper when the team of doctors and nurses came. They gave the okay to leave today as long as he met all the criteria such as normal blood pressure, no dizziness when he got up to walk, etc. This time his platelets were about 50,000, which is low but not enough to need extra platelets. Normal is 150,000 to 450,000. Last time he was at 30,000, so he was given 20,000. The nurse has taken out his intervenous catheter, so he has to lay flat for a half-hour, take a walk, and then we can go home. Yea!!

With the snowstorm getting worse, we are anxious to get home and settle in. If we wait until tomorrow, we may have to stay a night or two at the guest house. 

The next step is to get a CT scan in 3-4 weeks. If the results are positive, meaning the tumor has shrunk or stopped growing, the next round will be scheduled.  So, this time he will have 4-6 weeks between treatments. We feel quite certain that he will have a positive response. The pain in his stomach seems to be less. 

The nurse is here to go over discharge papers, so I'll post this now.

With appreciation for all the love and support!!

4th Infusion of IL 2

Since Mark's blood pressure normalized and he felt a little better, Mark got another dose of IL-2 at 7 am. We are amazed at how different his body responds to each one. Today he didn't have the rigors nor much nausea, and his blood pressure stayed at an acceptable level. During our morning brief with the doctors, they fully expected that he would have to go back on the "neo," as they call the blood pressure meds. That has not happened. YEA--he is not fond of the cuff with 15 minute BP checks. 

Today he feels crummy with flu-like symptoms along with itching. Meds help, but he is restless and having trouble sleeping, but too sick to do anything else. Occasionally, he will pick up his phone to check emails, but he puts it down a few minutes later. I feel sad that I can't do anything to help him except rubbing his skin down with anti-itch cream. The nurses have to help with just about everything else. He is never allowed out of bed without a nurse to assist. His blood pressure could drop quickly, which could cause him to pass out, and fall. No one wants that!

No afternoon dose was given. Tomorrow, he could get more, or this could be it. The doctors make the call depending on how he is doing. While he definitely feels lousy, we know that it could be so much worse, so we feel blessed!

Two Doses of IL-2 Today

There were no more infusions yesterday. His blood pressure continued to be low, so he was on the Phenylephrine from yesterday morning at 6 am until this morning at 9 am. Whenever he is on the blood pressure medication, he has to continually wear the cuff. It squeezes his arm every 15 minutes. Try to sleep with that going on all night!! If he isn't on his back(he's a side sleeper), the results are often skewed, so a nurse will rush in to recheck his blood pressure. Needless to say, he doesn't get much sleep, although yesterday he was so drugged that he slept more than he did last night. 

Fortunately, nausea has subsided considerably, and by this morning, he was feeling much better. Even though he was still on the blood pressure meds, the doctors decided that his bp wasn't low enough to be a problem, so he got the 7 am infusion. Besides the rigors that were calmed with Demerol, his side effects were minimal. 

Since he was doing so well, he got another dose at 3:30 pm. This time he didn't even need the Demerol--just lots of warm blankets. We expected him to get sick like he did on Round 1 when he had two infusions in one day, but he never did.YEA!!! Just when we think we know what to expect, it changes. We have been told that he can respond differently each time, and it seems they are right. 

A new side effect is joint pain in his shoulders--so much so that it's painful to move his arms even to push the call button. Pain meds have taken the edge off. He looks sunburned all over--a nice red glow! Itching continues to be an issue, but meds help some. 

The last reading on his blood pressure was 88, so it's trending down. We just pray that it doesn't go below 85, or he will have to go back on the IV medication and wear the blood pressure cuff again. Some uninterrupted sleep would be heavenly! Well, at least for an hour, maybe two. The doctors say that he may have to wait until he gets home for that luxury.

Food doesn't taste good, but he has managed a few bites of mashed potatoes and gravy and some applesauce. So, I haven't had to buy much food--I just eat his left-overs, and they aren't bad. Last night he thoroughly enjoyed some frozen yogurt from the hospital cafe.

All in all, it is going much better than expected, so we are thankful. The nurses always caution us to be careful what we say because it can change at any moment. Whenever one of them comments that it's quiet on the floor, suddenly lights start flashing, and they are running to keep up! We'll just be grateful and take it as it comes. I think it's time to head to the cafe for some more frozen yogurt! 😋

They Told the Truth - Day 2 of Round 2

 Dr. Taylor and Dr. Curti emphasized at the end of the last week of infusions that round 2 would likely be more intense. Mark's first infusion was yesterday at 3 pm. For the first couple of hours, we thought this one wasn't going to be too bad, BUT then it HIT!! The incessant itching was everywhere from head to toe, and nausea didn't allow his head to leave the pillow or even take a sip of water for hours. He was miserable! IV Zofran, Compazine, and Reglan did nothing to help. Finally, around 11 pm, IV Ativan and more Benedryl eased nausea and itching and knocked him out. Then, his blood pressure dropped to 82/46, so nurses were in and out all night giving extra fluids and checking his vitals. Early this morning, it dropped into the '70s, so at 6 am, Phenylephrine was started by IV. It's still going at 3 pm, and his blood pressure is moving in the right direction. Mark is sleeping most of the time. He will not have the 3 pm dose, and we don't know when the next one will be. While the side effects are tough, we actually want his immune system to react to recognize and get rid of any tumors and cancerous cells. It's an odd thing to want this! 

Dr. Walter Urba dropped by around noon today to see how Mark is faring! It was wonderful to see him again. He is an amazing man!! We hear it from nurses here and others who have either worked with or know him, and we have experienced it. He is always so kind and caring! He no longer works with patients, and we are in good hands with Dr. Taylor and Dr. Curti, but while he was here, he mentioned that he hadn't been on the hospital floor since Covid started. We felt honored that he would come to visit us! 

We can't thank you enough for the love, support, and prayers that are sustaining us!!!

Back for Round 2 of IL-2

Today at 3 pm, Mark starts round 2 of Interleukin-2. His central line catheter has been placed, and we're just waiting for the fun to start! 😬 

We've been trying to remember what happened when, so we've condensed our TimeLine so we can see the summary better. 

Melanoma had been removed from his back in 1990 and one from his shoulder in 2000. 

2012 

Feb 28 PET results: "...avid metastatic disease in the lungs, the right ventricle of the heart, liver, omentum, paraspinal muscles, and soft tissues of the right hip and both thighs." (Life expectancy, we learned later, was about 3 months.) 

Mar 24 – Zelboraf started, a medication used to shrink tumors. Although not a cure, it acts quickly if the patient is responsive and has the BRAF mutation. Average 5-8 months and typically only shrinks tumors.

 Apr 24 -- Heart went into A-Flutter because of the shrinking tumor in his heart. 

 Aug 6 – Results of echocardiogram showed the large tumor in the heart was GONE! 

 Sep 9 – Both PET and MRI indicated no evidence of cancerous tumors! 

 Sep 14 – Catheter Ablation was successful in correcting Mark’s heartbeat. 

 2013 

 Jan 22 – Stopped Zelboraf due to negative side effects. 

 Jan 30 – Results of PET showed no tumors. Jul 1 – No indication of any tumor activity. 

 2014 

 Mar 31 – PET results showed one large tumor in the left adrenal gland and seven small tumors throughout the body in soft tissue. 

 Apr 9 – Started new meds – Mekinist and Tafinlar (BRAF and MEC inhibitors combined). No potential for cure, but minimal side-effects for quality of life. Like Zelboraf, but with fewer side effects. 

 Aug 28 – PET report - all of the tumors were gone!!!

 Dec 8 – PET results were clear again! Went off all medications. 

2015 

Apr 25 – PET results: Two small tumors - one in the thigh's soft tissue and the other on the left adrenal in the abdomen. Started the same medications again, Tafinlar and Mekinist. 

June 30 – PET showed NO TUMORS!

2016 

Aug 22 – PET results showed one large (fist-size) tumor in the adrenal gland. This was the first time there had been tumor activity while on medications, indicating more aggressive cancer. 

Sep 16 – Tumor in the left adrenal gland removed surgically. stopped medications 

Dec 9 – PET results showed around 20 tumors from the face to the shins, some in soft tissue and others in the bone. None in critical organs. 

Dec 14 – MRI indicated no tumor activity in the brain. 

Dec 28 – Happy 65th Birthday! Pain medications such as Oxycodone help relieve pain in the hip and abdomen caused by tumors pressing on nerves in bones in the hip and spine.

Dec 30 – The first treatment of radiation caused initial increased pain and nausea. More followed. 

2017 

Jan 6 – 1st infusion of Ketruda, administered every three weeks. This immunotherapy drug has the potential to be durable - meaning that this isn't just a stall drug. 

Dec 22 – PET showed– No evidence of cancer! Dec 26 – 17th and LAST infusion of Ketruda. 

2018 

Dec 1-15 – Mild pain in the lower abdomen – left side. 

Dec 17 – MRI/CT shows no cancer activity, but a PET would be more conclusive. 

2019 

Mar 18 – CT scan indicated multiple tumors in the liver, some an inch in diameter. Another tumor on the pancreas was causing pain. 

Mar 21 – Intense Pain! Tafinlar and Mekinist started to shrink the tumors quickly. 

Sep 30  PET scan results indicated that all tumors had resolved. Of course, there are likely cancerous cells present as Tafinlar & Mekinist do not eradicate cancer but are excellent at prolonging life. Also, Mark started the first combined immunotherapy infusion of Nivolumab (Opdivo) and Ipilimumab (Yervoy). 

Oct 28– MRI showed an Enlarged Pituitary Gland, which resulted in Adrenal Insufficiency. His body will no longer produce cortisol, so hydrocortisone will be required for the rest of his life. Prednisone was used for several months, starting with a large dose and tapering down slowly. 

Nov 2 - 29 – In and out of the hospital and cancer clinic—the immune system attacked the digestive system and the Pituitary Gland. Mark was in the top 3-5% for the most severe reaction to the double immunotherapy. He will not be able to use Yervoy again. 

2020 

Feb 12 – PET exposed a tumor in the left adrenal gland and a small one in the liver. 

Feb. 21 – Mekinist and Tafinlar resumed 

May 18 – PET revealed NO active tumors. 

Aug 17 – PET revealed NO active tumors. Adrenal Insufficiency continued to be monitored with hydrocortisone. 

Dec 16 -- PET results -- a golf-sized tumor in the liver. 

2021 

Jan 18-23 – Providence Portland Hospital for the first infusion of Interleukin-2

Feb 8-13 – Providence Portland Hospital for the second infusion of Interleukin-2