Not Cut Out To Be A Blogger I Guess

     How crazy is it that it's July and my last post was in February?? I'm really bad at this. I have a journal that is next to my chair ...I write letters to Brian every few days. I guess that is where my focus has been. This is supposed to be a crafty type blog but I have not felt crafty in so very long. I have scrapbooks to finish...don't wanna. I have regular craft items to make...don't wanna. I have a craft room FULL of supplies and a guest room with a closet overflowing with supplies plus a heat press...don't wanna. I have a garage workshop for my wood/painting/stenciling stuff with all the wood for signs and boards...don't wanna. I have a section of the garage for refinishing furniture (and the furniture)...don't wanna. I'm not sure how to get my wanna back.
     I do have a garden again this year. Not too big but enough that I am able to freeze some veggies for the winter. I don't need much. Plus, I've been sharing with the kids and neighbors. Everybody seems to like fresh grown tomatoes.
     I've been doing a lot with my parents. They are elderly...and Covid-19. I learned how to do peritoneal dialysis for my dad. Really I'm just his backup. I take him to his appointments and I run most of their errands so they don't have to be out. They are both doing well and that is a blessing.
     I had a 62nd birthday party for Brian liked he asked me to. Cake, ice cream, and Glenlivit. We all sang happy birthday to him. It was sad/happy. I turned 60 in June. Went shopping with my oldest daughter and Mom. Sushi for lunch...then a surprise birthday party that they weren't supposed to do. It was all good, though. I have good kids. That's also a blessing.
   

Brian's 62nd Birthday

Lantern I made him for his birthday
(the paper has music notes)

My birthday cake!

Mom trying sushi for the first time!!

Almost Spring

   I am ready for this cold and rainy winter to be over. It snowed today. Craziness. Valentine's Day is behind me. I put artificial flowers in the vase from the roses Brian got for me last Valentine's Day. Not quite the same. My wonderful daughter, Aimee, made sure I had flowers and candy and a card. All the birthdays for February are over and next will be March birthdays. Brian's birthday...March 5th...granddaughter's birthday...March 5th. Also a grandson and niece birthday in March. And then the anniversary of Brian's death on March 22nd. I'm not sure how that will go. Brian asked me to still have a birthday party for him for a while after he was gone...how sad and sweet is that. I promised that he wouldn't be forgotten as long as there was breath in me. His last birthday was so terribly sad because we knew it was his last one...only 61 years old...so very unfair. He couldn't even have candles because of the oxygen he was on...so I used a battery tea light. 

   Some days I think I'm doing ok...most days I know that I'm not. I wonder if it ever gets better. Will there ever be a day that I look forward to getting out of bed. Most nights I dread going to bed because of the nightmares I have of not being able to find Brian anywhere. Everything I do is only because I have to. I have to do the laundry, the dishes, take out the trash, pay the bills, etc. I spend time with Mom and John because they need me to do things for them and take them places. I can't seem to stand being around people anymore for any length of time. I find reasons to leave any family event as soon as possible and I don't attend any other events at all. If it involves leaving the house, I have a really hard time doing it. That includes going to the store. I'm thinking that won't get better either.

  I've rearranged the guitars on the wall again. I am selling the last of the guitars (except, of course, the special ones). I added angel wings to Brian's electric guitar...it looks nice. 

Holiday Time...Is a Sad, Sad Time

     The holidays are here. Our 6th anniversary was Monday November 25th. Then it was Thanksgiving. Now it's Christmas...Brian's favorite. I never believed that our last anniversary and last Thanksgiving and last Christmas would actually be our very LAST of those. It's so very hard to wrap my head around. We will NEVER have any more memories. I'm trying to honor his memory and his wishes by celebrating those events. I cooked some stuff for Thanksgiving but I'll never have it at our house again. I put up a Christmas tree but I didn't decorate the house. I will eventually go through all the Christmas decorations and only keep the special ones. I'm not finding any joy in this festive season...I'm just trying to survive it.

     I have a journal that I write to Brian in. Like letters...maybe he's just far away on a trip somewhere. I tell him all the important things going on. It helps me.

     I found a little memory frame and cut out his picture from when he performed at the Christmas parade. He wore a Santa hat and a jingle bell necklace everywhere we went during  Christmas. And, of course I had to put garland around his urn. There is still garland in the kitchen and snowflakes hanging from the dining room ceiling that he put up last year. Can't bear to take them down.

I Have No Words

     I haven't been able to write anything regarding the horrible situation I find myself in. Brian fought SO VERY HARD to stay with me and be my love. Unbelievably, on March 22, 2019, on a beautiful Friday morning, my sweet husband breathed his last at 11:00 am. My heart and my mind cannot really comprehend the loss I feel. Brian did absolutely everything to fight this horrific disease. He tried another round of Keytruda but developed pneumonitis almost immediately. So he tried radiation...that was the thing that really made the cancer fight back...but it was the only treatment we could try.  Even with him feeling so very terrible, we went to Florida with brother and sister in law and to Franklin, NC to mine for rubies and sapphires. By Christmas he was on oxygen because the tumor had made his lung collapse. By Valentine's Day he couldn't really do much on his own. By his 61st birthday on March the 5th, he was in Hospice care. I didn't want him to be in the hospital for the end...so I insisted he come home. He stayed alert and talkative until the very end. He knew he was dying and kept a wonderful attitude and worried about everyone but himself. He was surrounded by people who love him...and we loved him right into Heaven. My heart is broken. I don't know how to go on...but I keep waking up every day. I tell him that he'll have to help me get through the day since he woke me up...but I'd rather die with him. My life is over.

First Treatment Behind Us!

   On August 27th Brian had the first treatment of Keytruda. This is his second round of immunotherapy. The first was Ipilimamab and Nivolumab. The first few days were a bit rough. Stomach issues, extreme tiredness, weakness, etc. This regimen is every 3 weeks so maybe he'll be able to recover in between times. CT scans every 3 months. Hopefully we will be able to travel! We have plans to meet Wayne and Pam in Florida in October. Then my Dad and Carol will be there for our second week!
   We were able to visit Gatlinburg and Cherokee, NC before treatments started. We went mining for rubies and sapphires! 

Brian's New Shirt!

LOOK!

Brian at the sluice

Beautiful travels!

Check them out on Facebook

My Toes Hurt!

So I can't let Brian have all the fun at the Dr.  I had hurt my left foot several years ago and damaged the nail bed but just ignored it. Then I hurt my right foot while redoing the deck. Both my big toes kept getting ingrown because of the damage. I was tired of it so went to a foot dr. He decided to remove both my toenails! He says it will give the nail beds time to heal and then hopefully grow back correctly. Meanwhile, this is what they looked like a few days post dr. YUCK!

 

Distraction

     We have been so numb about the news of cancer recurrence that we went to Bledsoe Creek State Park as a distraction. It was very hot so we sat at a picnic table and some deer came over! Brian offered her some crackers and she came closer and closer. Then her spring baby came closer with her newborn baby! Never saw that before! Check out these pictures!

Look how close she got!

Even the squirrel had to get involved!

Can you see both babies?

Full of crackers now... family headed home.

Not The News We Wanted To Hear

     We have had a very relaxing summer. We have traveled to Arkansas and to Gatlinburg. We went crystal mining while in Arkansas and ruby and sapphire mining while in Gatlinburg. We actually traveled from Gatlinburg to Franklin, NC to do the mining. Then we came home to see the oncologist and have a CT scan.
     On Thursday August 9, 2018, we went to Vanderbilt's Ingram Cancer Center again. Brian had a CT scan at the hospital and then we went to see a new oncologist. Dr. Johnson is the head of the melanoma clinic at Vanderbilt. The news he shared was not horrible but great either. Another spot in his right lung...very small...but there. Advised us to come back in 3 months for another CT scan. We were OK with that even though we were hoping for no cancer at all. Then we got a message from Dr. Johnson on Friday. He had called Brian's cell phone several times and couldn't reach him. Of course, we called him right back. The news he shared was devastating to us. Brian has several spots of cancer in various places in his body. Dr. Johnson wants to start treatment again. He will agree to waiting 8 weeks but not more than that to repeat the CT scan and start treatment. We were supposed to call him back today (Monday the 13th) and conference about options. Brian couldn't make it happen...maybe tomorrow. I'm not sure what our options are right now. We are numb. Here is the CT report:

     Here are some pictures from our travels while we were blissfully unaware of any bad stuff.

Great guitar playing!

Brian and Miss Arkansas!

A ruby I found!

Brian finally met Santa Claus!

This big bear came to our hotel every night!

Great News!

Yesterday, May 9, 2018, we went for Brian’s surgical follow-up. We saw Dr. Lambright the thoracic surgeon. He was happy to tell us that he got all the cancer with clear margins! That means Brian does not have active melanoma in his lungs! We are not aware of any other areas of melanoma at this time!  Also, Brian’s lung function has recovered more than the Dr. expected! That will continue to improve over the next few months. It is like a reprieve for him right now. The hope is that the Nivolumab has changed his immune system enough that new melanoma won’t grow. We have to continue with periodic CT scans but Brian wants to wait until at least August for that. He has also requested a new oncologist and is set to meet Dr. Johnson in August. Right now the plan is to enjoy our freedom from the hospital for the summer! Please continue sending prayers his way.

Tuesday Update

     I gave Vanderbilt yesterday to update me about the HVAC incident. We never heard a thing. Today I called Aaron Hirsch to get the last names of Brian's nurses and to get an update from him on what he might have heard. He gave me the names with no problem. Then he called Karen Broch with infectious disease for an update. He called me back with the info that there would be no investigation as they decided it was just regular dust. I told him that it would be regular dust at my house but not at the hospital! I then called Danett Guy:left a message, Susan Johnson:she has laryngytis. She sais the same thig...no investigation asit wasjust regular dust. She gave me  the name Vickie Brinsko the Director of Infection Control...had to leave message. I called Betsy Kay-Hall with Dr. Lambright to give him an update. She said she'd let him know. Haven't heard from him. I called patient relations and had to leave a message. Then I called Jamie Wyatt to give him an update. He called me back and I let him know how dissatisfied I was with the nonsense. He agreed. Said to give Patient relations time to call me back.
     Mike Garrott Director of Patient Relations called me back around 4:30! He tols me what he had heard about the incident and then asked me my side. I tried to be very deliberate in my retellin and gave him names of people involved. He asked if I would give him til tomorrow to contact these people and get back to me. I agreed and thanked him. I also let him know that I was very unhappy with the situation in it's entirety and the fact that we were left in that room for almost 12 hours repeatedly asking to be moved somewhere else. We'll see. Then I called Jamie Wyatt back so he was up to date on everything. Tomorrow will be another day.

Another update

     Apparently most of the hospital has heard about what happened. It involved 10-12 rooms. Some of those people are still in those rooms! Dr. Lambright is especially concerned as his patients are sent to that exact area!
     Brian has developed a bad headache and severe sore throat. We are still in the hospital on Sunday...probably go home on Monday. I want to know what they are going to do about this whole thing. I requested that Dr. Lambright’s office let us know what they hear. I also want copies of any reports that are generated from this issue. We’ll see if that happens. Brian’s nurses where Layaneh, who first saw the stuff on him, and Athena who came on duty that morning.
     I will update as I get more info.

Update on Brian

    We came into Vanderbilt at 5:30am on Thursday, April 12, 2018. Surgery was successful! Dr. Lambright was able to remove the whole tumor! It was larger (bigger than a golf ball) and much deeper in his lung than they thought. He has more and bigger incisions because of that. BUT IT’S GONE!!!!!
     Early in the morning on Friday his nurse came in and was quite agitated. Asking “What is this!? Please tell me you were eating Oreos! I don’t know what all this black stuff is!”. I got up and got my camera. Brian, his bed, his tray table, etc. we’re all covered with a black substance that had apparently come out of the air vent over his bed! The nurse(Layaneh) was freaking out. She got someone in (Blake) to help clean it up and I told them they better save that so we could find out what is was. They didn’t listen and continued to clean up. I got samples and asked for a ziplock bag to save it. We asked for a new room. None available. They got him into a chair and changed his bedding. I sat on the edge of the bed and stuff continued to fall out of the vent onto the clean bedding, onto his breakfast tray, etc. Asked to be moved. No rooms. Floor nurse came in. We expressed our extreme unhappiness and wanted to know what he was going to do to help us. I explained that Brian is compromised enough with cancer and less than 24 hrs out of surgery. He agreed. I also explained how dangerous it could be to the rest of us. He agreed. I then explained how this could be a major lawsuit in the making. He agreed. He left to try to find another room for us. About 30 minutes later about 7 people all wearing suits and having titles were in our room. Our room was so small they had to stand out in the hall. The main talking woman explained that the HVAC system was being worked on and they did something they shouldn’t have that resulted in that stuff blowing back into the rooms. They were sending some of it from another room out to be tested for mold, fungus, etc. I told her that we had our own samples and pictures. There was a very long silence. I explained that I had asked the nurses to save the stuff and they didn’t. I explained that they used a broom to clean up and therefore stirred everything up and then took the broom somewhere else. I explained that we had repeatedly asked for another room because stuff was still coming out of the vent onto us...and now them, too. Another long silence. I explained that I knew their job was protect themselves and my job was to protect Brian and I would do whatever I needed to to accomplish that. I explained that I had already contacted his oncologist, his surgeon, his Medicare advocate, as well as the mold epidemiologist. Another long silence. I asked for business cards for all of them which they did not have...hard to believe. They left after assuring us there would be an investigation and we would be notified of test results and moved to a new room. I had Aaron...floor head nurse...get me names and titles and phone numbers of everyone who was there. He did that. We weren’t moved until 4pm!
     Dr. Lambright came in shortly after that. He was furious about it all but tried very hard to be calm and meticulous with his words. I found out later that he has been trying for quite some time to get something done about the lack of cleanliness on 9N.
     Here are some pictures I took:

Cancer Really Does Suck!

It is March 2018. Brian had his regular CT scan in February. The cancer has really ramped up and is growing quickly. He's had to be on high dose prednisone because of the pnuemonitis and that keeps the Nivilumab from working. We thought he only had one small tumor but he has two. One in each lung. This past Thursday (the 22nd of March) he had a wedge resection of his lower right lung. Dr. Lambright was able to remove the tumor and sees no more cancer in that lung! Now we are recovering at home. He will have another wedge resection of his upper left lung (which has a much larger tumor) on April 12th. We are praying that Dr. Lambright has the same amount of success with this next surgery. Vanderbilt has no more treatment options for Brian if this surgery is unsuccessful, or if the melanoma comes back again. Our next best option is to get approved to go to MD Anderson in Houston, Texas. We are planning on the surgery being as successful as this one was.

ICU oxygen walker

Chest tubes are huge!

Breakfast last day in ICU 

December 2017

     Apparently, I really suck at this blogging thing! I will try to do better! Brian continues to go without treatment. He had to have a broncoscopy in November due to the Nivolumab making his lungs all inflamed. He had a couple of biopsies done and also had a Lavage of his lungs. That means they washed his lungs! Weird. It appears that his cancer is gone except for one spot in his lower left lung! He will have another CT scan in February, along with a pulmonary function test. Hopefully, there won't be any more cancer at all. The Nivolumab continues to work even after stopping it. The trick is to keep it from making him sicker than the cancer does. 

     We have been traveling...of course! We went to Port St. Joe, Florida along the "Forgotten Coast". We decided they call it that because they forgot to put restaurants and stuff there! We had a good time anyway. We found the world's smallest police station! We also found several cool lighthouses!

     In late October, we met Wayne and Pam in Treasure Island. We stayed at the Cherie Lynn. Beach and sightseeing! They had never been to the gulf coast and they loved it! When they went home Dad and Carol flew in for our second week of beach and sightseeing. Brian was starting to get sick during that time. He tried real hard to be a good sport. 

     We got a new puppy! Another German Shepherd! Her name is Tesla and she is beautiful! So very smart, too! Greta loves all puppies but she's getting older and doesn't put up with her antics much.

     We celebrated our fourth anniversary in November! I am soooooo spoiled! Four dozen roses! Beautiful topaz and diamond earrings! Beautiful Yesterday, Today and Tomorrow necklace! Sigh!

April Update

     So the CT scan wasn't as great as we had hoped for.  One spot was bigger and there is one new spot. On his lung. LDH was over 200...not good. Had a treatment anyway. Very heartbreaking. Two weeks later LDH was 414! Highest it's been since we started. Dr. let him have a treatment but cautioned us that we would have to make a new plan. We left the next day for Florida. Confused, scared, and so very sad. Tired to have a good time in Florida. Stayed at the Satellite with Dad and Carol. Met some new friends. While we were there Mom was taken to ER and transported to Vanderbilt with a golf ball size anyuerism at the top of her left carotid artery! We were all ready to fly home but neurosurgeon said he would operate in two weeks and we'd be home by then. We talked to her repeatedly and she insisted she was fine...and siblings all agreed. We stayed in Florida and talked to her 2 - 3 times a day. We got home on Tuesday April 11th. Mom's angiogram to map her blood vessels was Wednesday morning. Brian's Dr. appt. was Wednesday afternoon. We weren't sure what we would hear from the oncologist. Mom's angiogram went great and they admitted her for the procedure the next morning and we headed over to the cancer clinic at the same hospital...convenient. Brian and Dr. Wyman were discussing treatment options and I was monitoring blood test results. His LDH was down to 186!!!! Dr. Wyman was floored! They decided to continue Nivolumab until June when the next CT is due. If LDH goes up high again they will be able to re-start Ipilimumab...but no one has ever done that before. That's kind of scary to me. That's what made Brian so sick and put him in the hospital repeatedly and trashed his pituitary gland. We shall see! Fingers crossed, prayers constantly!

Safety Harbour Music Frstival

Rock collecting

Cool name!

Sand initials on the beach