Saturday, November 21, 2015

Update since surgery

So, It's been awhile since I have posted, but that is because we have had a LOT going on.  
Jerry's original surgery went great, but on September 29, I took Jerry to the hospital after suffering from a fever, vomiting and severe swelling of the incision area.  Unfortunately, he ended up being diagnosed with having a STAFF infection and on Thursday October, 1st, he had a second surgery to remove the bone flap that was cut to remove the brain tumor.  The bone flap had to be discarded due to the infection.  For the last 7 weeks, Jerry has been receiving intravenous antibiotics through a PICC line at home.  This last week, he finally had the PICC line removed and he is ready to now move on to the next step of healing and recovery.  He will still need a 3rd surgery to put a new bone flap in, but they will not do that for a couple months because they want to make sure the infection is completely gone before they close in the brain again.  He has a cap with a hard shell in it that he wears when he is up and about to help protect his brain where there is no bone protecting it.  The next steps are to get started on Chemotherapy and Radiation therapy which will start within the next couple of weeks.  He will continue this treatment regimen throughout the Holidays, which makes me sad, but at the same time, because I work for a school district, I will be off work for a good 2 weeks, so it will be good for me to be home with him too!!  From what we know today, he will likely have Chemotherapy for a year for 5 days, every 28 days.  Probably in February, he will have the 3rd surgery to put his new "bone" in his skull which has a 4-6 weeks recovery process.  Our family had been planning a cruise for this spring, because our oldest daughter will be 18 this summer and we were hoping for a "last big family trip" before she was off on her own, but that is being put on hold now.  The kids are sad, but at the same time, they completely understand.  We had our kids conferences these last couple of weeks and they are all thriving in school and doing very well. I'm sure that is greatly attributed to people who have been helping us and keeping mine and Jerry's stress levels to a minimum!!   That is my short and sweet update for now.  Though we have been going through a lot, especially Jerry, God has been very evident in our lives.  We have had people bring us dinners, sent cards and get well wishes, financial contributions and so much more.  We are grateful for every act of kindness and I can't wait to be in the position to pay it forward!.  My perspective on it is so much different now than it was before.  Love you all and please continue to pray for Jerry as he has a long road ahead of him!!

After second Surgery:

Wednesday, September 2, 2015

He Can, He Will, but even if He doesn't.....

In August, Jerry preached at church referencing Daniel chapter 3 regarding the parable written about Shadrach, Meshach, and Abednego.  He rephrased the parable in his own words and said "He can, He will, but even if He doesn't".  Jerry went into surgery on August 18, 2015 having complete peace with the outcome of the surgery, no matter what it was.  He is a man of great faith and he knew that no matter what, God was in control and that no matter the outcome, God would have a plan.  It was a little harder for me to think like he was at the time, as I did not want to think about loosing him or living life without him, but I did have a weird peace inside as well, knowing that Jerry was right with the Lord and if he did choose to take Jerry home, I knew Jerry would be experiencing his eternity, and I knew that he would be "happy". God can, God will, but even if he doesn't ran through my head so much on the day of his surgery.  I kept praying and asking God for this to be a time where "He did".  It's an unwavering feeling to not know if your ever going to see your husband alive again.  The moment as the Dr. and his staff was leaving, that moment when I could no longer walk along side his bed, that moment that I knew I had to say good-bye and tell him I loved him came, and that peace that surpasses all understanding came over me.  I looked at the Dr. and took his hand and I told him I would be praying for him during the surgery.  He was very kind and said that he was going to do the best he could.  Then they took the love of my life through those double doors...

I went to the waiting room of the hospital where my mom, Jerry's mom, Jerry's sister & boyfriend, and Jerry's brother all sat, there was an uncomfortable silence for a little while.  We were all scared to death, we were all worried, we were all in a place of complete surrender knowing that there was absolutely nothing we could do to potentially change the outcome that was going to take place that day.  We didn't know what it would be, but we knew that it was out of our hands. 

We were told that the surgery could take up to 14 hours.  They just have no idea what they will face until they "get in there" and start to dissect the tumor away from the good tissue in the brain.  The minutes, and hours started to tick by.  The staff at the hospital would come to us about every hour and tell us that everything was going well.  All of us in the waiting room started to loosen up, we started to relax and we started to enjoy the presence of each other.  We played a long game of "rummy" and I lost by a long shot!!  Approximately 7 hours into the surgery, the representative from the hospital came to me and said "They are finishing up and the Dr. will be out to see you soon". The thoughts and feelings that started to flood my mind in that moment were overwhelming.  I was thinking things like "They said this could take 14 hours, and they are done after 7, is he alive?  Did he Die during surgery?  The staff wouldn't tell us if something was wrong, they would just tell us to wait?"  I didn't say any of these things out loud, but boy was I thinking them.  I think everyone was.  Once again, there was an overwhelming "silence" that took over the room.  We were all waiting and wondering, but no one was talking.  Finally, I got up and started pacing the hallway because I couldn't just sit anymore.  It took about an hour after they told us they were finishing up before the Dr. came out.  He pulled us all from the waiting room and brought us to a private room....again, inconceivable thoughts and feelings were overwhelming my mind at this time.

  The Dr. spoke to us for about 15 minutes, describing in detail as much as he could about the process of the surgery.  I kept waiting for the "bad news" at the end of it all, but finally, he said...."He's OK, they will come and get you as soon as he is out of recovery"  At that moment, the huge block that was on my shoulders was lifted and I started to relax.  The moment that they told me I could go see him seemed like an eternity after that.  I remember walking into the room in the Neuro ICU and seeing him for the first time.  He looked good.  He was alive.  That's all I wanted, was for him to be alive.

The next few days, we learned more about his surgery.  We learned that the Dr had to stop the surgery once Jerry's left arm started being affected.  (Jerry was awake for the surgery so that the risk for paralysis was minimized, the Dr. communicated with Jerry asking him questions and watching certain functions to know what he could and couldn't touch in his brain, it was pretty amazing) We knew going into the surgery that Jerry would have a transient facial droop.  We also knew there was a chance he could be weak on the left hand side of his body.  Both of those things were exactly as the Dr. had predicted.  Jerry's speech was also affected, but today marks 2 weeks since his surgery and his speech has dramatically improved, in fact most people would not even notice it at this point.  We also learned that they could not remove the entire tumor.  We learned that the tumor was in fact cancer and that this type of tumor will always come back.  We learned that Jerry will have to undergo chemotherapy and radiation therapy after recovering from his surgery in hopes to "hibernate" the tumor so that Jerry can have many more years before the tumor comes alive again and affects his quality of life. Where we are today.....

Like I stated, it has been 2 weeks since Jerry's surgery.  We are back home and Jerry is recovering pretty much just like the Dr. had described to us.  He is very tired.  He still has some loss of function in his left hand.  We have scheduled him to started Neuro-therapy in a couple weeks so he can re-learn how to make his hand work again.  He is not paralyzed, he can move his hand and he can squeeze it very tight, there is just a disconnect where his brain is not telling his hand what to do properly yet.  He has made a lot of progress already though so I anticipate a positive recovery process.

Jerry will likely be off work for the rest of the year.  After he recovers from his brain surgery, he will start his chemotherapy and radiation therapy for 6 weeks.Today I want to thank Jesus for his love for Jerry.  I want to thank him for not taking him from me yet.  I was trying to be prepared for a different outcome, but it is almost impossible to do.  I'm thankful that I didn't have to go through something different.  He Can, He will and if He doesn't.I'm thankful that He did this time.

My prayer requests would be to help Jerry rest.  He is a very active person and this healing process is making him feel lazy.  His mind tells him that he is being lazy but when he tries to do something, he is so tired and gets wiped out very quickly.  I need him to rest.  I need him to be lazy for awhile.  I need him to give his body the time it needs to heal so that he can get back into his life once this process is in the past.  I need him to be OK with resting.

This is Jerry and I on the Plane before his surgery.

This is Jerry and I the day before his surgery

Jerry in the ICU after his surgery

His incision

Jerry and I  overlooking the San Francisco Bay while Jerry was recovering at the hotel before we were able to fly back home.

This is Jerry's incision after we were home before he had the staples removed.

Monday, July 13, 2015

Short Update

I just wanted to give a short update and let you know that we have heard back from the Dr. in California and it looks like Jerry will be moving forward with surgery sometime in the near future. The percentage of risk went from 25% - 30%, to 2%-4%  with the Dr in California.   Due to privacy and protection I will not be submitting the actual date of surgery on this blog.  Please continue to pray for Jerry's healing and for strength and peace for Jerry and for the whole family to get through this.

Psalm 29:11

The LORD gives strength to his people; the LORD blesses his people with peace.

Monday, June 29, 2015

Here We Go Again....

Where do I start?  I almost am embarrassed to say that Jerry and I have been living in a world of denial over the last 4 years, or at least, I have.  I can't really speak for him in that regards, because I believe every single night he went to bed, he knew he had a brain tumor.  He was the one taking non-traditional treatments everyday and often reading on them as well.  I, on the other hand, would forget about it from time to time and just go on living my life, raising my children and moving forward in this adventure we call "living".  Sounds good, right?

Well, a couple months ago, Jerry started having some symptoms from his Tumor.  He had what has been described by the Dr as a seizure.  Jerry didn't' really know it was a seizure at the time, but has since had another one and realized that it was in fact a seizure.  We have learned that the stereotypical seizure that people visualize is one where the person is on the floor and shaking (no disrespect intended towards anyone who experiences these-types of seizures) is not in fact the most common, in fact there are hundreds of different ways that people can have a seizure. Any way....Reality Check!

Jerry had never really "liked" or felt confident with the Dr. who he had originally seen at U of M, so we decided to seek out another Dr who we met in 2011 while receiving a 2nd opinion regarding his tumor.   This Dr. is from Henry Ford.

So, Jerry started the journey all over again, getting new scans, having the tumor board review the scans.  This time, there was a benefit because they were able to compare the growth over the last 4 years which was helpful in diagnosis.  So we get the phone call to come in to find out what direction they want to move in...

The words we heard were devastating.  "No Dr. Here or in the State of Michigan is qualified to surgically remove your tumor without taking significant risk of a stroke or something even more catastrophic"  "We do have another procedure that is less evasive, but the tumor will not be fully removed and it has actually never been done on a tumor of your size, it is called "Laser Ablation".

The words were so devastating to hear that we didn't know what to think or what to do.  One thing we did feel confident about was the decision we made 4 years ago to not allow the surgeon who wanted to operate. He was not as honest with us about the severity of this operation nor did he ever suggest another Dr who would be more qualified in that area of the brain.  So that, we are thankful for.

Where are we today?  Jerry has sent all his medical records and scans to two different Dr's that we were referred to who both specialize in this type of tumor located in this part of the brain.  One Dr is in Houston Texas and the other is in San Francisco California.  We were told that the Dr in California probably would be his best bet.   We are currently waiting to hear back from him.

The Anti Seizure medication the Jerry is on is making him feel awful everyday.  Please pray that his body will adjust to this medication and that he will start feeling more like himself very soon.

Thank you for your interest in our story and PLEASE pray for Jerry.
This Picture was Taken in May 2015

Monday, February 2, 2015

Super Bowl Sunday

Well, today is the "day after" the event that many people just can't wait for....Super Bowl Sunday.  I'm not "into" football, neither is my husband, but many of our family members are, so we enjoy the festivities and play the games, watch the commercials, the half time de da.....

Today, I was looking on my computer doing some research in regards to my husbands brain tumor, calling a new Dr. for the FOURTH time, hoping this time they will call me back, checking with our insurance company to find out where we can go, and what hoops we have to jump through to try to get de da....  This seems to have become a natural practice in our home anymore.  The wondering, the waiting, and the living life through it all.

What is hard for me, is not the acceptance of where we are, rather it is the acceptance of the fact that it is so hard to get what we need.  Or should I say what my husband needs....  People will pay Millions upon Millions to hold an event like the Superbowl, my nephew said that it cost $4 Million just for a 30 second commercial during the super bowl.  I don't know if that is accurate, but it is probably close...

It is amazing to me, that a persons life is not as valuable to many.  I know that there are many companies and corporations out there that donate a lot of money to find the cures for cancer and research and such....but for us little people, we don't really get to see that money.  I'm not complaining about the help that we have received, nor am I looking for anything at this moment, it is just hard to wrap my head around it all.  The treatment that my husband would like to receive, it is a non-traditional treatment called Antineoplastons founded by Dr. Burzynski, that has been known to cure cancer without all the chemicals and poisoning of the body or without having to have a possibly life altering surgery that could potentially paralyze my husband, if not worse...  Instead, millions of dollars have been used to try to get Dr. Burzynski to sell his cure or to kick him to the curb all together.  In the meantime, the cure itself is out of reach financially for our family, but would be conceivable if we were given just a few seconds worth of what one commercial cost that played during the Superbowl.

I just don't get it.  I don't understand how our world has gotten to be this way.  I honestly wish sometimes that I lived back in the day when helping our neighbors was just part of our natural daily routine.  I do realize that there are benefits of today's world, I just don't understand how so much money can be spent on entertainment while there are husbands, fathers, mothers, daughters, wives, husbands, and children dying of cancer.  Some who just gave up and quit fighting after spending every last dime they had to fight.  People sell everything they own just to get treatment to survive, yet as a country, we spend millions to watch Katy Perry sing on a pole flying through the air!?!  How did we get here?  How did our priorities get so messed up?  Or is it just because it is someone that I love that has been affected by cancer that it matters to me so much?

It's tough for me to lay my head down at night and be proud of where our country is heading.  I just don't get it.  I'm not sure I ever will.  I just want a cure for my husband, I want him to live.  I want the Dr's office to care enough to call me back and I want my insurance company to pay for what they are suppose to pay for.  I'm sick of fighting.

Go Superbowl......blah blah blah.....

Thursday, January 22, 2015

Breaking Point

Yesterday I had a weird kind of day.  I usually am pretty composed and do not think too much or too often about my husbands tumor.  That sounds bad, I know...but when you are living it, you learn to just "live" and not dwell on what you cannot do anything about.  But yesterday, well I had a "rough", weird kind of day.  I posted something on a social media page, and my intent was not to draw attention to my situation, rather it was an attempt to help people to understand that when someone is in need, to reach out to them, not just "offer" to reach out to them.  Anyway, the post blew up and people were private messaging me and offering me their services and prayers and well wishes, and it was quite overwhelming to be honest.  I actually didn't respond to everything until the next day because it was just "too much".  When my husband came to bed, he had no idea what I had been dealing with and I totally broke down.  I told him that I didn't want him to die.  I told him that I needed him to be healthy so that his body could heal, I told him that I'm usually quiet, but that doesn't mean I don't care, it is because I'm always trying to remain strong for him.  It was crazy, I don't think my husband knew how to respond to me.

Earlier that day I had just researched a new hospital for him because he said he wanted to proceed with finding a new Neurologist/Neurosurgeon/Oncologist.  Is that why I broke down?  My husband and I had also met with a financial specialist to help us out and my husband said, "This is more for her because I probably won't be around", is that why I broke down?  I don't know, what I do know is that it is a difficult place to be.  I usually am quiet, because I can't imagine what it is like to be the "one" with the brain tumor, and I feel guilty for feeling sorry for myself.  But I do....I feel sorry for me.  I feel sorry for myself all the time.  I want a healthy husband, I want to grow old with him, and I want all the same dreams that every other couple wants....but quite often my thoughts are "Where will I live if something happens to him", "What will I do with all his "things" that he cherishes so much?" How will I tell our son, who is only 4 today, that his dad is gone?  How will I survive?  How will I cope?  I told my husband last night that I could never re-marry.  Why on God's earth am I thinking these thoughts???  I can't make sense of it, but they are there.  They exist in my head EVERY SINGLE DAY.

I titled today's post "Breaking Point" because I think I came to one of those yesterday.  I broke.  I actually think I shattered.  But, what I do have on my side is Faith.  I have Faith that no matter what tomorrow brings, God will make good of it for my life.  He will restore my husband if that is what his path is suppose to be and if it isn't, he will restore me, he will restore my son, his sons, and my daughters, he will restore our family.

I want him here, I want him to stay.  I want us to be together for many many more years.  But if we aren't.  I need to be OK with that.  Right now, I'm not.