Tuesday, April 15, 2014

Word of the day is ENCOURAGING!

No cane & walking around Vandy!

The one word to best describe the present state of Don's health is ENCOURAGING! I am totally bewildered about the overall turn around from a few short months ago. The words I have used lately to describe all aspects of Don is crazy, amazing and just WOW. I knew I was married to an amazing man, but he has proven over and over again that he is a fighter. I will be honest, just a few short months ago, I didn't expect Don to still be with us. I believe that he had one foot in the 'other world'. He was incapable of taking care of himself and needed 24/7 care. He wasn't eating or drinking very much, slept 20+ hours a day. It was rough on all of us. I truly believed that he was slipping away. I had started the grieving process, even though I didn't want to, but my heart saw the downward spiral he was taking. I was thinking the worst was happening.

And then one day, he started joining us at the dinner table. Then the next he was eating and drinking without us pestering him to do so. Then, he wasn't sleeping most of the day. He was alert and started to have that little sparkle back in his eye. Three weeks ago we went to Vanderbilt and he was riding around in the wheelchair, this past week, he went in with his walker and cane! He even ditched the walker and went into to get labs with just his cane! I nearly cried. This is just an amazing thing to see my husband again ... see the "old" Don.

Chattanooga Pow Wow
I have given all the credit to two very special visits he has received from sister Darlene and brother Kenny & friend Ken Patton. They came down and jump started his soul! Since they have visited, he is a different person. It was wonderful to have Dar and Kenny visit, to see the joy in Don's face when sitting around talking with them and to just talk. It was good for all of us!

OH! Another thing I have noticed is that Don is drinking coffee again! This may not seem like a big deal, but for months he hasn't wanted coffee .... and that was ODD! Don couldn't function without coffee back in the day! Well lately I have noticed that he has been drinking the coffee we give him in the morning, even asked for a second cup today, BUT the big news is that he has taken Erica coffee to her while getting ready TWICE! People ... this is huge! He is becoming more independent, and I am just flabbergasted! (how do you like that word?!? Trying to not say amazing so much LOL)

Don is feeling so much better that we are taking my parents to our friend's cabin in the Smoky Mountains Thursday - Sunday of this week! It's truly amazing that he is able to and wants to travel and spend time away from home. I honestly didn't think going to the cabin was in our future anymore.

Ken Patten, Erica, Don, brother Kenny & Audrey
As you can tell from this blog update, I am literally smiling all the way through it! I don't know how long this will last and I don't care. What I care about in the moment is that I have my Don back ... I have a partner once again who is making decisions with me and helping as much as he can. We have been given more time and I am not going to waste a single minute!

P.S. Don met a guy at the Infusion Lab last week at Vanderbilt and gave him his card. They talked about the guy's visit to Ketchikan years ago and talked about the necklace Don was wearing. It was a great conversation and helped pass the time waiting! Well, yesterday Don received a letter from this guy with a handmade necklace made from a plane crash years ago. Don truly touches everyone he meets.

We are having a CT Scan on May 7 and receive the results May 8, so please keep him in your prayers. They are definitely working!

Friday, April 4, 2014

My Husband is AMAZING!

Easter Bunny visit at Hamilton Place.
L to R: Don, Susan, Kenny Hoff, Erica,
Bunny and Ken Patten

I am married to Superman ... seriously, I really think I am!

Many times in the last few months I thought that Don wouldn't be here the next month. There were days when Don slept all day, didn't want to eat or drink much and I was starting to lose hope. Then just like the blink of the eye, Don is eating more, staying awake all day, drinking lots of liquids and moving around better and faster! Seriously, he is amazing!

I credit Don's energized state to the recent visits of his sister Darlene and his brother Kenny's visits. Having them here has done wonders for Don's mind. Their visits energized him and jump started his metabolism and for that I am so thankful! I love that Don is loving his life right now. Sure he still has pain, but it's under control and just the fact that he wants to get up and out of the house is fabulous!

Grandpa and Audrey with her new bike!
Another thing that lets me know that Don is feeling better is that he has been on Facebook the last few days and he has been calling up friends. This is huge! He feels good enough to chit-chat ... if you could see the smile on my face, then you could really know how much I am loving this!

I know that the future is still rough, we know that the word CURE is not in our future, however, we will gladly take all of these extra bonus days, weeks and months!

So tonight, I am breathing a little easier, I am a little less stressed and I am thankful for my amazing husband!

Tuesday, March 18, 2014

One Day at a Time

March 12, 2014 at Vanderbilt
You think you know what 'one day at a time' means until you are literally living ONE DAY AT A TIME. I can't tell you what Don's days are going to be like today, tomorrow, much less next week. It's ever changing. One day Don will be great and join us at the dinner table, ask for seconds and astound his entire family and the next day he literally sleeps half the day away.

And that's the hardest part of the part of the cancer journey we are on now, the ever-changing. I don't know what the next day will bring and that frustrates me and just makes me sad. No self respecting control freak can handle not knowing the future.

Don continues to fight the cancer beast and his will to live one more day is strong. We all know where this battle will eventually lead us, however, Don is not going down without a valiant fight. Some people would go ahead and say that's it, I am tired of fighting and hurting, however, Don is always up for his next battle. When a Dr. suggested that it was time to rest and stop chemotherapy because his body was tired - Don said NO. I respect that fight in him and it is what makes me love him! Don still has things unresolved that he needs to figure out. He is not ready to rest and let cancer take over. So, we will continue and go to Vanderbilt every two weeks for Avastin chemo infusions as long as we are able to. Don has a CT scan around the end of April and then we will know for sure where we are at combating the spread of the cancer.

Don's sister Darlene came to visit from California!
This is the hardest thing I have done or will ever do ... watch my husband of 17.5 years suffer daily with the simple task of just getting out of bed. It is heart wrenching to see him in so much pain. I pray for days when he is able to sleep peacefully at night, I always keep one hand on his chest so I can feel his heart beating and know that he is comfortable. The good days Don gets up before I leave for work and sits in his recliner with coffee or Ensure and is semi ready for the day. His days revolve around napping and watching TV. Going outside or anywhere takes a lot of effort on his part and some days he just doesn't have the energy to spare a trip as simple as going to the grocery store.

And the things I miss the most with Don being housebound are the simple mundane things like going grocery shopping, going to the SAM's or Costco and just strolling around looking around for things we need for later in the season. This time of year we would be thinking of summer and planning out the little details of our summer Florida vacation or buying things to take to the lake and for family picnics, however, those days are gone. I miss them. I never thought that something so simple would be missed so much.

I also miss talking to Don. I have noticed lately that when we are sitting together, he is a mix between watching TV and asleep. We don't have the talks that we once had and I miss that. I miss having my partner in life helping me make decisions for our future. I miss being able to leave things up to him and letting him make decisions. I just miss a lot of stuff that cancer is slowly stealing from us.

Playing catch with Asher!
I am lucky though, I have had five years to get slowly used to the idea that cancer would steal our future, not months like some couples have. However, are you every really ready to watch the love of your life lose their battle with cancer?

I know that I will look back on these days and realize that these are the easiest days, as the hardest days are yet to come ... and that scares me beyond comprehension.

Don and I did make a big step and called a local company Palliative Care and are seeking their help with pain management and next appt. we will meet with a social worker. It is a good step that we took and I am looking forward to their help.

Don isn't on Facebook much lately and doesn't really text either, however, I do let him know when he has messages and sometimes he will tell me what to respond with. He loves all the cards and letters he has been receiving and we tape them up for him to see all day long. Thank you to each and everyone of you who have sent something - it makes all of our days brighter to see him smile when he opens another card!

Continue to keep us in your prayers. We go to Vanderbilt again on 3/27/14 and will see Dr, have blood drawn, hopefully receive chemo and also meet with the orthopedist regarding the leg and arm pain.

Prayers are always accepted and appreciated.

Much love ~ the Southern Hoff's

Location:Adams Rd,Chattanooga,United States

Monday, February 24, 2014

Courage doesn't always roar

Updates ... it is so hard for me to update lately. It's so easy to update when the good news is pouring in and the days are all sunny and happy. Right now Don and I are at a tough spot where updates are painful to admit. But, we have shared the good and the bad, so here goes ....
Don feels bad.


Sunday outing to the Riverpark. 2/23/14

Just kidding, but seriously, that is just it. He feels bad. He started the Avastin chemotherapy infusions 1/30/14 and also started the Interferon injections around that same time. We have been on Avstin before and it didn't cause him to feel ill, but the Interferon must be messing with his insides pretty good. As you all know, Don is a major carnivore and loves nothing but a big juicy steak, but lately, all red meat turns his stomach. He thinks he wants to eat it, but once it is cooked, one bite and he gets sick to his stomach. So, lately its been a lot of Chicken Noodle soup, Cup of Noodles, cereal, pudding and just foods that are soft and bland. However, these foods don't pack much calories or protein to the mix, thus resulting in Don to lose a lot of weight in the past month. At present weight, he weighs 160 lbs. Too much weight loss, however, we have started to add a flavorless protein powder to most of his food and stepped up the number of Ensures he has to drink a day. It's a constant struggle for him to gain weight - me on the other hand, I am gaining weight by just looking at food.

Getting out and about is a little harder on Don lately. He has a small hairline crack in his femur where the steel rod is located (see previous blog) and that is causing him to have to limit the amount of pressure he applies to that leg. He is using his walker at home, however, when we leave the house, I make him use the wheelchair. Not only is this faster at the moment, but it keeps him from doing too much on that leg. We go back to see our Orthopedic Dr. 3/13/14 and hope that everything is healing up well.

Beautiful day in Chattanooga! 2/23/14

We are headed back to Vanderbilt on 2/26/14 for another round of Avastin and for lab work. Two weeks ago when they did labs, Dr. Puzanov was pleased with how everything was looking. I am hoping for these same sentiments again this week.

Erica and I have been catering to Don hand and foot and if we had a big palm leaf, we would surely fan him with it too while he ate grapes, but alas, we don't have a big palm leaf. But what we do have for the times we aren't home is a Nana Libby! My mom has been coming over while Erica and I are working and keeping Don company. She talks his ear off about anything and everything and forces him to chug Ensures all day long! But, he loves having her come over and they are enjoying watching old movies together. I really feel lucky to have a mom that loves her son-in-law so much!

We are still in need of a lot of prayers. We are still waiting for Don to turn the corner and get back to where he was 6 short months ago and have his independence back and have his strength restored. It's a long road, but he is doing it. He still has his wonderful optimistic attitude!


Friday, February 14, 2014

Never Given More Than You Can Handle

There’s a certain phrase I’ve come to really dislike.

All my life, I’ve heard this phrase whenever I go through life's difficulties. You’re probably familiar with those kinds of "life difficulties".
“God will never give you more than you can handle” is the phrase I’m referring to.

And it’s a sweet sentiment, really. The people who say it are speaking from caring and concerned hearts.

BUT–it isn’t true.

Right now I truly feel that I have more than I can handle. At times it feels like everything is happening in slow motion. The last six months have felt like years. Don has endured so much since August and I truly am sad and overwhelmed FOR him. He is trying so hard to put on a brave front, yet, I see the real Don that no one else sees. I see the tears and fears. I see the man I know become someone else. I see the weakness get the better of him and I see the sparkle in his smile dim just a little bit. I see things that I wish I never had to see. I try to protect him from everything. Shield him from pain, from things that will hurt him, but I can't shield and protect him from the cancer.

Last week Don started having an intense right leg pain. If you remember, Don had a steel rod inserted into his right femur in September 2013 due to kidney cancer that had spread to that bone. Well anyway, an x-ray at Vanderbilt on 2/11/14 confirmed that Don has broke his femur. Thankfully the steel rod has stabilized the break, however, the small little crack in the bone has pain that radiates to his knee, up the back of his thigh and gives him a lot of pain. When Dr. Halpern told us that it was broke, I wanted to cry. But there were just no tears left. I swear to you I almost laughed and said that it was just our luck. There is just no way that Don could have a simple strain or pulled ligament, nope ... he has to have an actual broken bone. We have all agreed that surgery is not an option to repair bone, Don is just too weak for surgery and he needs to stay on his chemo. So, for 6 weeks it is no weight bearing on that leg. Easier said than done!

Don has handled this news very well and we have had great talks at length about his future continuing as an employee at Tennessee Valley Authority and wondering if it is even possible for him to return to work in the future. I am thankful that Don is able to have these talks. He will be making a difficult and heartwrenchng decision in the very near future. It is something that he doesn't want to face, as he loves his job. But, we have to be realistic in what he can handle.

Please keep Don in your prayers as he makes his difficult decision. It is hard, emotionally difficult and terribly sad that he isn't able to do the things that he loves doing. Seeing him sidelined by cancer recently has felt like a dagger in my heart.

This quote made me think of my brown knight ... the guy who stole my heart:

You are stronger than you think,
remember to stand tall.
Every challenge in your life
helps you to grow.
Every problem you encounter
strengthens your mind and your soul.
Every trouble you overcome
increases your understanding of life.
When all your troubles weigh
heavily on your shoulders,
remember that beneath the burden
you can stand tall,
because you are never given
more than you can handle...
and you are stronger than you think.
~ Lisa Wroble ~

Don is stronger than he thinks. He is amazing and he fights harder than anyone I know. He deserves to be happy and deserves to have a life free of pain. I don't know why things happen, but I wish I could see the good in things again.

I wish for a lot of things .....

I wish God would stop having so much faith in me ... he is definitely giving me more than I can handle.

Sunday, February 9, 2014

I need a crystal ball

Writing this blog after a particularly difficult night. So be warned. Full of raw emotions.

It's almost 9am on a Sunday morning and Don and I are still in bed. Last night had to be the roughest night physically and emotionally we have had in a very long time.

Don is in pain. He kinda slipped the other day and jerked his hip/leg where he has the steel rod. :/ this is causing him lots of pain that the regular meds and breakthrough meds aren't helping. It's tough watching him in pain.

Last night, there were also A LOT of tears shed by the both of us. When Don said "I don't think I'm going to survive this ..." things got real, real fast. I don't know if that was the pain talking or the increase of pain meds talking. But either way, I know that it very well may be true.

There are signs there that the cancer is winning. We go for another infusion this Wednesday and hope and pray that it continues to buy us some more time.

I wish I had a crystal ball and I could see into the near future. I wish inside that magical crystal ball it showed my amazing husband pain free and on vacation with us - no walker, no cane - I long for him to be the pain free man he used to be six short months ago. I miss that so much.

It's sad when you miss someone so much when they are right beside you.

This is the hardest thing I will ever do in my life. And all I want to do is pretend everything will get better - when I know it's not going to.

I want to make my husband healthy again. I want to go back 19 years ago when we first met and relive all those days again. Every single one of them - the good and the bad. I just want more time.

We don't know how much time he has. Could be 6 months, a year or hopefully more. But as I said, I am writing this after a very bad night, so I don't expect years anymore.

I'm sad.

- Posted using BlogPress from my iPhone

Wednesday, January 29, 2014

New Plan of Attack 2014

2014 is the Year of the Attack.

We entered into 2014 feeling a little helpless and feeling sorry for ourselves, hell, who wouldn't feel sorry for themselves! Having 3 major surgeries within 5 months is not what was in my in monthly organizer of approved activities! And I am a planner and an organizer and these 3 surgeries have just threw us for a loop. So, 2014 is the year we regain our control and I buy stock in bubble wrap and keep Don wrapped up with a nice layer to protect him! ;-) You all know that I have to add some comedy into these blogs, if I am not adding comedy, then that is when I am "writing in the moment" and those blogs are deep, dark and depressing. I try to only write those for myself and not publish them, but occasionally one will sneak into the blog. But, for the most part how I write is exactly the way Don and I deal with things.

That being said, we have a new plan of attack! We are doing radiation in Chattanooga at Memorial Hospital. They are radiating his L1 & L4 in spine, 3rd rib on left & right and multiple areas along the humerus. We they set you up to have radiation, they 'mark' the spots they need to hit. So, they use a sharpie to do this! Audrey just so happened to see Grandpa without his shirt and wanted to know who did that to him! And then she wanted to know WHY he never let her mark on him! I think she was a little worried he was letting another child use markers on him LOL.

Along with radiation, we are going back to an oldie, but goodie chemotherapy called Avastin. Don did Avastin several years ago and we have great success with it for 16 months, then his cancer cells became immune. So, since we have wonderful response and it has been awhile, we are hoping to have confused his cells and for Avastin to jump right in there and start to immediately attack! Don's first infusion will be January 30. We have to travel to Vanderbilt to receive this infusion. We are also doing a new drug called Interferon alfa. I started giving him his first injection Monday night and he will receive them every Monday, Wednesday and Friday.

* Avastin is a tumor-starving (or anti-angiogenic) therapy. It is not chemotherapy. For mRCC, Avastin is taken with interferon alfa and hits your cancer from another angle.

* Interferon alfa boosts the immune system so it can better attack cancer cells. The purpose of Avastin is to prevent the growth of new blood vessels. This includes normal blood vessels that feed tumors.

Don is still recovering from all the surgeries, including the latest to cut the hole in the lining of his heart and healing takes time. He is still a little weak and requires help from Erica and myself to do most things in the house. We are thankful for the lift recliner that was purchased recently, as it is easy for him to get up and down.

We are still asking for your thoughts and prayers. As there are good days and there are bad days and then there are the days where you just want to cry cause you are so frustrated. So, anytime we can get extra thoughts and prayers, they are deeply appreciated.

Until next time .......

Friday, January 17, 2014

Some Days You Just Feel Like Crying

Some days just hit you, like a ton of bricks and all the emotions you've been trying to hold back come all at once. That's whats been happening lately. I can be sitting somewhere, red light, my desk, ANYWHERE and the tears just roll down my face. I don't even realize that I am crying until I feel the tears. I think that's when you know that you are just plain sad. When you can cry without realizing it.

I have self help books on Cancer and Cancer Spouse's and Caregiving Spouses and they talk about a thing called anticpatory grief Anticipatory grief means grappling with and grieving a loss before it completely unfolds. Trust me, it's as sucky as it sounds. I hate feeling this sense of loss before anything has happened. I know that it is recently compounded because the last few months have been a blur of Doctor appointments and hosptial stays. What the future may hold for us is a very scary thing and I fear the time when I will have to eventually live a life alone. I don't want to think about it, as it literally breaks my heart, but those thoughts creep in on the bad days. I am a planner and a control-freak and not having control over cancer and not knowing what each day will bring  is hard. I told my mom last week that I wish I knew what was going to happen tomorrow, next week, next month .... She told me that I am not supposed to know and to live each day one at a time. Great advice, but damn hard to.

Don and I have had some wonderful talks lately. We've shared more than we ever have about true feelings and our fears. We've cried together and just held onto each other tightly. I can't imagine never meeting Don. My life is better because of him. I'm glad that we've had these talks and said things that needed to be said. You are always so scared to talk about things, so we've spent a lot of time avoiding certain topics, but lately we've got it all out. Having an emotional cry with your husband is so therapeutic! 

We are not giving up fighting by any means. We are meeting with radiation dr 1/20/14 and after radiation treatment we will begin Avastin chemo and Interfuron injections. We have done Avastin before and it worked great for 16 months then stopped, but the thought is that you confuse the cells when you go back to a chemo and even thought it stopped, there is a probability that it will work again. We are putting all our aces on the table with this one and praying it is what we need.

As always, prayers, chants, spells .... whatever you have is deeply appreciated!

Monday, January 13, 2014

My Role while Don is hospitalized

I've had a few people ask me what I do all day while Don is in the hospital. So I thought I would break it down what my role is.

  • My main job is to question everything!

  • Every time a nurse brings in pills, I question what every single one of them are. If it isn't something he takes at home, I ask them to explain what/why.

  • I fetch Don ice water, ice chips, Popsicles, juice .... Whatever he wants. I hate burdening the nurses with this kind of stuff when I am here.

  • Help Don in / out of bed. I have no problem moving chest tubes around, moving IV poles and so forth to get him out of the bed and sitting in chair. Again, I'm here, why burden the nurse?

  • Help Don use his urinal. TMI - but it's an important job when you've got tubes sticking out of here and there.

  • Wash his face and help him change into a fresh gown each day. I've even changed the bed sheets today since the Care Partner didn't come to work.

  • Help with his food tray. Don only has use of one arm and that of course has an IV in it, so I position his food tray and make sure everything is in reach.

  • Make sure the nurses and Dr know his entire medical history. Seems like you tell it one time and that should be enough, but you seem to repeat over and over.

  • Most importantly, I keep him company and watch him like a hawk!

  • I just can't imagine Don being in the hospital and me not being by his side 24/7. And if that means sleeping in an uncomfortable recliner with nurses coming and going every 1-2 hours, oh well ... That's my job as his wife. I know that he would do the same for me!

    - Posted using BlogPress from my iPad

    Location:Medical Center Dr,Nashville,United States

    Sunday, January 12, 2014

    It's never boring being Mrs. Don Hoff

    Don told me when we got married 17 years ago that it wouldn't be boring and he has kept his promise that's for sure.

    And I am writing this from our hospital room on the Cardiac Surgery Floor at Vanderbilt, so that should tell you that so far 2014 hasn't been. 

    During a scheduled appt. with Dr. Puzanov I had emailed a day earlier to let them know that he had some swelling in his extremities that didn't seem like they were associated with his arm surgery. So, just to be on the safe side they scheduled him to have an echocardiogram to check his heart. It was last checked August '13 and there was a little extra fluid around his heart, but nothing serious. So, before we met with Dr. P. we headed over to Dr. Slosky at the Vanderbilt Heart Institute.

    Dr. Slosky explained that the fluid had built back up to a dangerous level and he wanted to admit Don ASAP and schedule surgery for the next day to install a Pericardial Window. Pericardial Window: A procedure in which an opening is made in the pericardium to drain fluid that has accumulated around the heart. A pericardial window can be made via a small incision below the end of the breastbone (sternum) or via a small incision between the ribs on the left side of the chest. We knew what this and that it might someday be a possibility since he had the pericardial effusion in July '13. They were adamant that he had to have to the surgery and they did not want him leaving the hospital and coming back the next day. So, down to admitting we went.

    They performed the surgery on January 10 and it took about one hour. Afterwards I met with the surgeon Dr. Putnam and he was amazed at the amount of fluid that was drained from the sac around Don's heart. Back in July '13 they drained 650cc and this time they drained a little over 1,000cc of fluid. The average lining of the heart should only have 2-3cc of fluid. So, we were very lucky to have caught this before he could have went into cardiac arrest!

    It's two days after surgery and we are still in the hospital. They have installed a drainage tube in Don's left side to drain any additional fluid and also treat him for the fluid that has built up in his lungs right after surgery. Apparently that is a common thing to happen since the pericardial window allows for the fluid to flow into the body, some goes into the pleural areas and gets trapped. Feels much like having pneumonia. So, we are hoping that on Monday Don will have the drainage tube removed and come off the oxygen they have him on. I can tell he is feeling much better today as he hasn't napped as much. :)

    We know that when we leave the hospital, we are going to have an appt. with Dr. Kimsey, our radiation dr in Chattanooga and schedule some radiation to his humerus, spine and maybe a few other 'spots' of concern. He will also start a new chemotherapy regimen of Avastin infusions and Interferon injections for his cancer. We had a lot of luck with Avastin a few years ago and are hoping to confuse the cancer cells and have Avastin work again.

    So, for now keep your fingers crossed that Don can be released Monday! More than 2-3 nights at the hospital and I start going a little berserk!

    - Posted using BlogPress from my iPhone

    Location:Medical Center Dr,Nashville,United States

    Tuesday, December 31, 2013

    Life is 10% what happens to me and 90% of how I react to it.

    Charles Dickens said it best “Reflect upon your present blessings -- of which every man has many -- not on your past misfortunes, of which all men have some.” I could look back at 2013 and see all our misfortunes, however, I choose not to dwell on the things that have happened and instead focus on all the blessings we are given in the present.

    Christmas 2013 at Mom's House
    I think everyone will agree that 2013 was just not the year for Don. Actually, the first 6 months was fairly uneventful. However, the last part of the year was too eventful! Lots of ups and downs and gallons of tears flowed while adjusting to the new normals. We are very well versed in getting accustomed to the 'new normals', however, we are not prepared to change our normal routine every month. When that happens, it becomes something you have a hard time accepting. It's hard dealing with the constant changes in your life and you have absolutely no control over them. When someone you love has cancer you literally hand over the reigns to your life to the many doctors in your life. So, while Don and I will probably never have complete control over our lives - we do have control over what we will let them decide. So, going into 2014 we will question more (is that even possible) and I want to research more and actually search out new medicines and things Don can do to take back control.

    Love these smiles!
    2014 is a monumental year for Don. 2014 is the 5 year mark since his Renal Cell Carcinoma diagnosis. We made it 5 years! When he was first diagnosed, making it 5 years was something we strived for. At times it didn't seem like it was going to happen. But he has made it!

    So, celebrate with us as we go into 2014 and don't focus on the hardships that Don has suffered, but celebrate the 5 year mark with us! Don and I will celebrate the 5 year since diagnosis with a special dinner at Bonefish Grill!

    Goodbye 2013 ...

    Thursday, December 26, 2013

    I found this Humerus

    December 26, 2013 was surgery day for Don. For those that don't know, on Thursday, December 19, 2013 Don was walking around (in the dark) filming an iPhone video of our Christmas decorations. Unfortunately, you are not always watching where you step when filming and he tripped over one of the tie-down cords for the inflatables.

    He came down pretty hard on his arm/shoulder and the humerus bone was snapped and basically shoved up into the socket that pivots the arm. We rushed to Memorial ER and they told us it was broke. The very next day we had an appt. at Vanderbilt with our orthopedic oncologist Dr. Halpern. Her office looked at the xray and said one word "surgery". The break was not in a spot that would heal itself. So, that puts us to today.

    The surgery last 3 hours and they scraped out the ball joint and with a little bone cement, screws and a plate (see image), they put him back together again.

    Not sure how long his recovery will be. As usual Don is ready to get it going and get his arm back to normal.

    As always, Don has been smiling all day whenever I see him. He is amazingly strong and I am lucky to have him as my husband!

    ~ Susan

    Location:Medical Center Dr,Nashville,United States

    Tuesday, December 17, 2013

    Being a Gracious Receiver

    Surprise Zumbathon/Fashion Show Fundraiser at Hamilton Place
    I have always been the type of person to give. I love giving people presents, little notes just to say HI; that is just my nature. Lately, I have been presented with the other side of the coin, and this is receiving. This has been the most difficult of things for me, I feel like I don't have the ability to receive graciously. When given a gift or donation, I immediately search my mind on ways I can express my gratitude. And often, my gratitude isn't necessary, as they know that we are thankful.

    Antonio (seated) and Sherry's Z Crew
    Recently, Don and I have been shown that there are some pretty amazing people in this world. Our friend Yvonne Blankenship in Ketchikan, AK started an online fundraiser for us to help with medical expenses while Don was out of work. It was amazing that she thought of us and wanted to help. Don and I were speechless and humbled. When donations started coming in from friends Don knew from Ketchikan, people he worked with at TVA and some people that we didn't know, we were shocked. We know that there are people that care, but people that cared so much to give of their own money, was just amazing. The next wave of generosity came from Don's co-workers at TVA. Don had run out of sick time and vacation time and he was put on a list for people to donate their own personal leave to help him. Again to our amazement, people donated. Don received weeks of pay from where people donated with their own personal days. Simply amazing that people can give so generously of their time. This is time that they could have taken off to spend with their family, but they sacrificed and donated to Don. The most recent wave of generosity came from my co-workers and Antonio McMath. Antonio has done a few events at Hamilton Place and we became acquaintances through working on special events. He approached my boss about doing a fundraiser at Hamilton Place (behind my back!) At this event, Don and I learned that it was for us. We were given the donations that had been accepted from friends, family and complete strangers. Again, we were shown that a higher power was at work letting Don and I know that we were not alone in this battle with cancer.

    Antonio brought us onto the stage.
    Very emotional for me!
    We have received letters with wishes that make you cry, people sending checks to pay if forward and just emails and phone calls from people just seeing how we were doing. It is truly amazing the love people have in this world. You often here of the bad, so being surrounded by all this outpouring of love is such a great feeling. It's still hard to accept. A giver doesn't easily become a receiver, but I am trying. My independent, I don't need any help attitude is slowly getting used to the idea that I do need help - and asking for help isn't a bad thing.
    Even as I am re-reading this before posting, I feel like I am not adequately expressing just how appreciative we are to each and everyone that has shown us the least little bit of love and kindness. I want you all to know that you have made a difference. You have restored my faith of a higher power and shown me that love, understanding and generosity know no boundaries. I am so thankful that we live in a world where people are kind with hearts that care.

    Don and I are just about the luckiest two people in this world being surrounded by so much love!

    Thursday, December 5, 2013

    Even in uncertain times, it’s always important to keep things in perspective.

    1. You are alive.
    2. You are able to see the sunrise and the sunset.
    3. You are able to hear birds sing and waves crash.
    4. You can walk outside and feel the breeze through your hair and the sun’s warmth on your skin.
    5. You have tasted the sweetness of chocolate cake.
    6. You didn’t go to sleep hungry last night.
    7. You awoke this morning with a roof over your head.
    8. You had a choice of what clothes to wear.
    9. You haven’t feared for your life today.
    10. You have overcome some considerable obstacles, and you have learned and survived.
    11. You often worry about what you’re going to do with your life – your career, your family, the next step, etc. – which means you have ambition, passion, drive, and the freedom to make your own decisions.
    12. You live in a country that protects your basic human rights and civil liberties.
    13. You are reasonably strong and healthy – if you got sick today, you could live longer through modern medicine.
    14. You have a friend or relative who misses you and looks forward to your next visit.
    15. You have someone with whom to reminisce about ‘the good old days.
    16. You have access to clean drinking water.
    17. You have access to medical care.
    18. You have access to the Internet.
    19. You can read.

    The truth is, you’re doing better than a lot of people in this world. So remember to be grateful for all the things you do have.
    (Read The Happiness Project.)

    Sunday, November 10, 2013

    I want to be HOFFstrong

    Everyone that knows us, or everyone that has been following our blog knows that the past few months have been rough. If anyone had told me that when Don started limping on vacation in August, that he would have a steel rod put into his leg followed by 20 radiation treatments, I would have told you that you were crazy. Yet, that's exactly what has happened.

    And the last 3 months have been rough both mentally and physically for Don and for the entire family. So, going into a follow up with Orthopedic Oncologist and monthly appt. with Dr. Puzanov - I was dreading the appt, mainly because I didn't want to hear any bad news! I just don't feel like I can mentally handle any more bad news for awhile. We are both looking for any glimmer of hope and grasping at anything positive we can find - we have so much hope and we are beaten down by getting nothing but bad news.

    But, I am happy to report that the Orthopedic Oncoligst was happy with the x-rays of femur and pelvis. Has a few areas she wants to watch, but was pleased with Don's progress. Labs with Dr. Puzanov were great and all his levels looked good. WBC's are rising, liver enzymes came back down to normal, Calcium level is down and just overall great blood work! Puzanov says "Keep on same chemotherapy and all meds" and we will do a CT scan in 2 months. So, we skipped out of there holding hands singing Hakuna Matata. Well, maybe Don didn't skip, but he really really wanted to!

    So, we are happy and we will take what we can get!

    I wanted to come up with something catchy to call all of the people that keep Don in their thoughts and prayers - last blog I called them 'Hoff Warriors', but playing off the Livestrong theme, I like 'HOFFstrong'. Because when I think of Don, I am amazed at how strong he is, he is strong in both what he endures and strong in what he believes. I know that I draw my strength from his ability to see the positive in every situation.

    So, being HOFFstrong is something that we all can be!

    Location:Chattanooga, TN

    Tuesday, November 5, 2013

    Cancer Claims Another Warrior

    2013 has been a year of loss for Don and I. The two losses that effect the most are both because of cancer. John died of Kidney Cancer and just this Sunday, Mike Serna died of Liver Cancer. These losses are great to Don, as he valued talking to both of these men regarding the fact that they were all living with cancer, so the loss of this kind of friendship is profound.

    After learning that Mike had passed, Don slipped into a small depression. We had just seen Mike a week prior receiving his last radiation. We were there when he rang the bell. And now coming to terms that he is gone ... is hard to accept and to comprehend. Knowing that Mike had cancer and was being treated, I just didn't expect him to leave this world so soon. And it scares the hell out of me and I know this is what Don was thinking also.

    Don is better today and started a new painting for a special friend. I'm glad that he is painting again. This will help him be at peace with Mike's passing.

    Love life and love all those around you. You never know when your last day on this earth will be.

    RIP Mike Serna

    Monday, November 4, 2013

    Sometimes it's quality over quanity

    The Renal Race Logo
    Don and I recently made the decision to temporarily stop his chemo so he could have radiation to his left hip. It was a hard decision and we had to choose over the cancer possibly growing or him continuing to be in severe pain. So, we decided that it was better to stop the severe pain that was causing him to be on lots of pain medicines and having trouble just moving. Don started radiation part 2 on 10/17 and last Wednesday, 10/30 he had his last treatment. And we are so happy with the results! When he went in to have the radiation to the left side, he was moving extremely slow and was using the walker a lot. On his last treatment, he strolled in with only his cane! Amazing what 10 radiation treatments can do for your body and your spirit!
    Grandpa and Audrey soccer game
    Don continues to be off of work since August 2013 and expects to be off a few more weeks. His mind thinks that he is ready to return to work, however, his body tells him otherwise. But each day brings improvement with his movement. He rarely uses the walker at home as well. It is such a relief.

    We go see Dr. Puzanov this Thursday, 11/7 and also see his surgeon that installed the steel rod in his femur. We don't expect anything to happen at these appts. There will be lab work and if all goes smoothly, we will come home that day.

    Don did restart his chemotherapy on 10/30/13 at full dose of 800mg of Votrient and we hope and pray that it is working. There's only hope, and we have lots of that. We will not have a CT scan for 3 more months and we bury the fear that the cancer is not responding and HOPE for the best. We appreciate all the Hoff Warriors who keep us in their prayers. Also, please say a little prayer for his daughters, granddaughter and niece - living life with cancer is rough on them as well and I often don't mention that they need your prayers too. Cancer effects a family, not just a person.

    Friday, October 18, 2013

    Radiation - all the cool kids are doing it!

    This has to be the most stressful, busy, frustrating October on record for us.

    October 2, Don finished radiation at Memorial Hospital here in Chattanooga. They radiated two spots on his right side, the femur and the acetebelum. Our Radiation Dr. wanted to radiate some other areas, however, Dr. Puzanov was eager for Don to restart his chemo. So, just those two spots were radiated. Don could tell a difference rather fast that the radiation worked, as the pain he felt in his right hip socket was gone. What a relief!

    That relief was short lived as my previous blog talked about. October 8 we were at Vanderbilt ER.

    During our 4 day stay at Vanderbilt, Don and I made the difficult decision to temporarily stop the chemo and have radiation to the left side where he is having so much pain. It's a chance we were willing to take. There's no way he could have a decent quality of life with the pain from the bone mets on the left side. The past radiation proved successful and we had to at least try and treat the mets rather than Don popping pain pills like Pez.

    So, only 15 days after his last radiation session ended, he begins his first radiation treatment to the left side. This go around he is receiving more radiation. They are treating four spots. Day 2 and he is already feeling some soreness and fatigue. Good thing he's able to rest his bones during the day.

    They will be doing 10 sessions and then we hope to have less pain. Keep your fingers crossed!

    I'll keep updating about our rad treatments and hope I can report that they are boring and he is doing great.

    As always we continue to fight the good fight and keep having hope that we are kicking cancer's ass.

    Keep us in your thoughts and prayers. We need them!

    Location:Chattanooga, TN

    Thursday, October 10, 2013

    Bone Pain is BAD Pain

    Well, we are back at Vanderbilt Hospital. It's a love - hate relationship between me and this place.

    Sunday and Monday of this week, Don was having a left hip pain. The pain went from annoying to agonizing. His pain medicine just wasn't able to get in front of the pain. After a long Monday night, we made the decision to come to Vanderbilt and see what was going on. 

    The 2 hr drive made me think of all the things it could be - fractured vertebrae, pelvis, hip or worse the cancer had grown in just a few weeks. Everything you could have imagined was going through my brain, as well as Don's. We were both a little worried, as was Erica, as she had to see first hand her dad in so much pain. 

    Vanderbilt ER dr's are pretty awesome and did the best they could, but when you've got car wrecks and gun shot victims coming in - someone without blood pouring out of them doesn't get top priority. However, we did get put into an ER room and they tried to make him comfortable. 10 agonizing hours later we arrived in our room on the Oncology 11th floor. Tired and emotionally drained, Don and I were ready for some rest. It was a rough night with the oncology 'team' installing a pain pump while they reviewed the MRI and X-ray that were done in the ER and trying to figure out the correct dosage. 

    Fast forward to today, Thursday - we are spending our 3rd night here and feel like we've got a good control on the pain. And the pain isn't caused by anything new. Nothing is broken, fractured or has the cancer grown, it's just the growths that are there decided to act up. 

    Tonight the pain pump is unhooked and he has the correct dosage of pain medicine and actually has a 'Pain Management' system in effect. No more guessing how much he should take of this and that. And that feels great. I hope that the next 12 hours on this new pain management system goes smoothly and is just what he needs. Hopefully not for too long though - we have decided to radiate the left side of the hip. Don will have to go off of chemo again for 10 days, but we feel like the benefit of the radiation makes up for 10 days. Radiation should relieve some of the pain and make life for him a little easier. 

    So, the punches keep coming and we keep rolling with them. Don is still hoping to return to work soon and we are moving in the right direction. 

    Keep us in your thoughts and prayers please. 

    Thursday, September 26, 2013

    Coping with Cancer Magazine

    We all know that Don is the poster child for how to live life in the moment and to live life to the fullest and now the world knows!

    Don is highlighted in the September/October issue of Coping with Cancer magazine! 

    While we were in Florida, I saw a tweet from @COPING_cancer asking for cancer survivors to send in how they live their life with cancer. So, from the beaches of Daytona Beach, I snapped a picture of Don and Audrey and then non-chalantly asked Don a question. I had to reword his quote a little, but what you see in the magazine is what he told me while we were sitting on the beach.