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So much has happened since last visit to Moffitt....

Monday, June 17, 2019

emoticon Hello my dear sparklers! So many things have happened since our last visit to Moffitt last Friday. We drove up the Thursday before so that we wouldn't have a 3-hour drive in front of us traveling up there for DH's appointment Friday morning. As most of you know I HATE that drive...it freaks me out to the max. I don't know if it's the highway driving, the worry of getting DH out of our big SUV and into the hotel room, the fact that he was always the navigator in our family...mostly the fact that I've had more than my share of car accidents in my lifetime and most of them occurred on the highway. Whatever the reason I HATE long distance drives on the interstate. BUT...we made it!

I had purchased a little rolling walker for Don and cussed up a storm assembling it the day before we left. It's a pretty cheaply made piece of equipment but he pushed it into the hotel room pretty easily so it definitely served its purpose.

The news from our Oncologist was NOT good. DH's Sarcoma has moved from his groin to his lungs and the last CT they took shows that it is now in his liver. The doctor basically told us that this is the end of the road and wrote a prescription for a heavy duty pain patch which I filled right there at the pharmacy at Moffitt Cancer Center. Thank the heavens for our Geriatric Case Worker down here in Naples who guided me to get extra help on our Medicare Prescription Plan. The cost of this pain patch would have been well over $150 but she said the best they could do to help us out was $41.00 which I thought was a bargain. BUT..then I remembered I had gotten some correspondence determining we were eligible for lower prescription pricing. After I gave her the paperwork I had received from the Insurance company she researched it and our price fell to somewhere around $3.50....halluluhah...I was SO happy!

During the drive back home we both did a LOT of crying. DH is scared of course.. and me too...I've never been on my own in this big bad world. Moved out of my parent's house married very young at the tender age of 17, had a daughter and lived 10 years with an overbearing, abusive (verbally and sometimes physically) husband...got out of that marriage with the crazy husband stalking me EVERYWHERE! Met DH as a really good friend (he was coming out of a crazy long term relationship with a crazy woman) and we basically listened to each others crazy stories and encouraged each other just to stay sane amidst all of the insanity flying around us daily. A year into the relationship once my divorce was finalized he asked me to marry him and of course I was smitten by this kind, understanding, decent man and said yes. So right out of one marriage into another. We've been married 41 years and have worked together for 30 of those 41 years. You can tell just from those statistics that we are closer than a peanut butter and jelly sandwich.

Having no family always made that connection even closer...it was DH and I against the world and we were a dynamic team. Ran a 2 M dollar construction business for almost 30 years until we lost our only child, our beautiful son Joshua Gavin in 2006. That took the wind out of our sails in a harsh and tragic way. From the time we lost Josh I questioned everything we had ever done to build that huge business...why did I spend every moment of every working day chasing the almighty buck...WHY didn't we spend more time with our precious son? Why did we drag him around to sales calls and have him sit in the car drawing pictures while we were ALWAYS working? WHY was it so important to us to keep up with the Jones fabricating our perfect little lives full of material things? When he left this earth our hearts and souls left with him...NOTHING and I mean NOTHING mattered a whit to us anymore.

Then the housing crash in 2008 was the final blow...we knew that our construction business was no longer pulling a profit. People who were living in houses that were worth less than they had paid for them in the first place stopped remodeling them. Our business was concrete...a decorative coating over the concrete slab in many different colors and patterns. We started falling behind on payments and it was a living nightmare.

Our circle of wealthy friends that we had known for years and years when we at the top of the food chain started acting subtly different towards us. Where we used to be the BIG fish in this circle we were now reduced to minnows.

We should have left the group of 20 some friends right then and there. When these idiots started acting like we were lesser than...it occurred to me these are NOT friends at all.

But old habits die hard my friends...especially habits of decades. We continued to socialize with these people and I was mostly miserable most of the time.

Being an apt blogger I wrote about them often and you... my astute sparklers questioned me over and over as to why we continued to hang with these phony balonies.

I finally listened to you a few years ago and we resigned from the group. I sent out a group e-mail and pretty much told the ringleader of the group that she was really no more special than anyone else...or for that fact....any more entitled than any other person on this earth.

In any group there is a hierarchy and because this couple moved up to the top of the money pile after we fell off of it the group naturally gravitated towards this woman and her husband as the people 'large and in charge'.

She was who I considered to be my best friend for many, many years...until I realized that the friendship was pretty lop sided and went smoothly as long as I agreed with everything SHE wanted to do and went along with all of her wishes and opinions.

Once I started pulling away from that 'bow to the Queen' status... our friendship suffered some chasms. The only reason I did this resignation from the group via group e-mail is that I KNEW if I didn't... the rest of the group would NEVER get the full story on why the hubs and I dropped out.

I mean REALLY life is worth so much more than what vacations you take, what model of car your drive, how much your house costs and if you carry designer bags...it all seemed so silly to the hubs and I after we lost our most VALUABLE contribution to the world...our dearly beloved son. This materialist stuff is just an illusion....you can't take it with you can you?

It was the right thing to do at that time. I felt lighter getting away from such superficial people. It's only been very recently that a few of the women have reached out knowing how gravely ill DH is. I'm trying not to hold malice in my heart but I'm understandably hesistant about trusting these women again after the poor way they treated the hubs and I after we fell off the 'money horse.'

But back to Hospice..they are remarkable! The doctor at Moffitt referred us to them. I guess he has written DH off as far as hope for the future. I won't accept that he doesn't have a chance...even if it's against all odds.

I'm logical enough to see him deteriorating and I don't want him to suffer...but I also know that miracles happen every day. I've seen some pretty remarkable recoveries with cancer patients using off-label drugs that most of us in the mainstream have no idea about. And...why is that...because the patents have expired and the big pharma companies can't make BILLIONS off these drugs. If you want to know more about this as a cancer warrior...or know someone who would find this information valuable please sparkmail me and I'll be happy to share what I know about this information. It might not work in every case...it might not work for my beautiful husband because his cancer was so entrenched by the time I heard about it...but there are hundreds of stories of people it HAS helped when they were sent home to die byt the traditional medical community.

He is now down almost 50 pounds. It's a TRUE struggle to get him to eat ANYTHING. He now has oxygen for when he has a hard time breathing. He has a walker and a cane... we are thinking about a hospital bed since it's hard for him to get in and out of bed since the mattress is pretty high off the ground.
When I found that the oncologist had prescribed him a pain patch of Fentanyl I freaked...Fentanyl...that was what killed the singer Prince...we all have heard how dangerous it is...was this patch going to kill my hubby? I wanted to help him with the horrible pain but would this patch be dangerous?

The Hospice nurse helped me understand that this is a very small dose and it is better to block out the pain as best you can. So hubs now has the patch on...but I can't say it has helped him a lot...maybe it takes a while to get fully into his system we will see.

So as always I ask for your powerful prayers to wrap the hubs and I in peace during this scary and dangerous storm raging through our lives right now. emoticon
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Member Comments About This Blog Post
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    13 days ago
    Thank you for this. We all can learn.
    17 days ago
    18 days ago
  • GODSCHILD2_2011
    You and your husband have been through so much and the lost of your beloved son Joshua I can only imagine was unbearable at time. What really blessed me was that fact that with all you and your husband Don is going through right now, just how open, brutally honest and transparent you are and how even in the midst of it all, you still have the mind and heart to pass on information that can be of some help to someone else.

    I too believe in miracles because I know that there is nothing to hard for God to do. No matter what the outcome may be, I know that this blog post will help so many people in a big way.

    My thoughts and prayers are with you and Don.

    19 days ago

    Comment edited on: 6/28/2019 3:51:19 AM

    "I'm sorry" is just so inadequate. I really appreciate how beautifully you are able to articulate your pains of all kinds, and my prayers are with you and Don. I cannot imagine what you are both going through.
    22 days ago
    I'm so sorry for the suffering you both are going through, so hard to see ones soulmate suffer and maybe not on the road to recovery. I faced this a few years ago for only 20+ days when she was in and out of death, but in her case ,the Lord wasn't ready for her yet. I had good councilors at the hospital to help get me through it, this was at the same time I should have been home planting. Take advantage of all welling help and guidance you can get. My prayers will continue for both through these difficult days ahead.❤️ Skeeter
    22 days ago
  • PICKIE98
    Sending hugs to you both. I wish I could be there with you. Savor each day.. Love ya kiddo.
    22 days ago
    As hard as things are right now, you still have each other so be grateful for that. Hoping for the best for you both, you are in my thoughts and prayers.
    23 days ago
    27 days ago
    I am praying for you both!
    28 days ago
  • SPEEDY143
    On my knees emoticon for you both emoticon
    28 days ago
    Oh, Bobbi (Spark Mom), I'm so, so very sorry! I could tell from the way you've always talked about Don that the two of you are very close. I think working together tends to bring you closer together along with the tragedy of losing your beloved son. The two of you have weathered so many storms together and it's going to be so difficult without him by your side. I'm sending tons of love and positive thoughts to both of you that this off label medicine you are trying will restore him back to health. I know so many people that have passed away from cancer. My mom is getting a low dose of Fentanyl for her back pain and it's working for her. I really hope the pain patch helps Don to not be in so much pain. I hope you are taking care of yourself as much as you are Don. Sending all of my love, hugs and positive energy to both of you.

    Big Hugs! emoticon
    Your virtual daughter
    28 days ago
    I'm holding out for a miracle. Praying, praying.
    28 days ago
  • PICKIE98
    Enjoy every little thing every day.. smiles, caresses, small victories for him(walking well, eating anything).. remember Josh is right there with you two..
    So are we..

    Good music, maybe reading a book to him.., meditating.. the small things are what you notice if you really look.
    Our lives take the exact path they are supposed to: it is all planned ahead, take the ride together..
    28 days ago
    I'm sorry you didn't get better news when you went last week. You are an amazingly strong woman - please remember to take care of yourself as you take care of Don. I'm keeping both of you in my prayers.
    28 days ago
    emoticon emoticon Prayers and positive thoughts going your way. Stay strong and be by his side knowing you are doing all you can. Glad you have the nurses to help you. Josh is sending you the strength you need as you go through these difficult moments. Prayers are sent your way. emoticon emoticon
    28 days ago
    I am so sorry to hear this sad news. I am glad you have hospice to help, and I am very glad you are trying alternative treatment. Yes there are miracle cures that occur. And frankly it is a miracle that there are effective pain medications available. My heart goes out to you both. I am keeping you in my prayers.
    29 days ago
  • PCOH051610
    Oh, my goodness Bobbi! I had no idea things were this bad with your dear husband. Sending hugs. I will be praying for both of you.
    29 days ago
  • LINDA!
    There are no words. I wish I could say something to comfort you. I do agree with you to try any and everything, you may have a miracle. I hope that you DO find a miracle for your sweet hubby. God bless you and continued prayers. emoticon
    29 days ago
    My heart goes out to you; wrapping you in both in the arms of love. I can't say enough good about Hospice, especially for their care and support of my nephew who died of an inoperable brain tumor at only 26. Hospice may be able to help you arrange for a hospital bed for Don and offer needed support to you too. You never know though; a friend's mother lived for another 10 years after going into Hospice.
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    29 days ago
    Sorry you did not get any kind of good news, but Hospice will be there for you. And before you buy a hospital bed, check around, there are places that rent them out. Just take care of yourself, so you can help Don. You two have been thru so much together, and you will get through this also.
    29 days ago
    So very sorry, Bobbi. You and Don will stay in my prayers.

    I'm glad you have hospice helping you. They are wonderful people.

    I will continue to pray for a miracle.

    I HATE cancer!

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    29 days ago
    Oh Bobbi! you have the biggest hug I could give you ..... I am so sorry. I can only imagine the things going on in you head and heart. You are a strong lady and God will see you through all of this. HUGS AND PRAYERS MY FRIEND.
    29 days ago
  • LYNCHD05
    Bobbi, this post made my heart ache. I can’t imagine going through this with someone you love so much. I know it is a relief to have the financial part diminished. Thank goodness for that. Also I hope the pain patch gives Don some relief.
    You are both in my prayers. Take good care of yourself too.
    29 days ago
    I am so, so, so sorry, Bobbi. You two were such a great team. You've lived through so many ups and downs throughout your lives, and now you have a major downer ahead of you. Know that you are loved, both of you, and that we wish that Don could return to health and vigor and that your lives wouldn't be turned upside down by this terrible disease. I hope the pain patch helps, and that you are able to take care of yourself as well as Don. Much love and hugs to you both. Peace and hugs.
    29 days ago
    Bobbi Anne, I am so, so sorry that you and Don have to go through this. Let me add my voice to the chorus of your friends here who are with you as you go through this scary ordeal. You are amazingly strong, brave, and positive, and I know your presence must be a source of deep comfort to Don. Praying many times a day that you can endure and find peace.
    29 days ago
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    Hard to believe that your lives has come to that.
    29 days ago
    So sorry to hear your update! Glad that you were able to get him some relief from the pain. Hospice will help immensely. Remember to take care of yourself too. Sending prayers.
    29 days ago
    29 days ago
    I continue too keep you both in my prayers.
    29 days ago
    This is just so sad to hear, and to know you and your husband -- whose strongest bonds are to each other -- are having to deal with this devastating cancer. I know he would like to ease your pain as well as his, and that he is fighting to get through each day. This has happened so fast, too. You are strong and brave and hopeful, but I know this is must be draining your physical and emotional energy, so please try to take care of yourself during this time.
    29 days ago
  • LORI-K
    I am so sorry to read your news from Moffit. I don’t know you, personally, but I am praying for you and your husband. Thank you for sharing such a powerful blog. You are a super strong woman.
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    29 days ago
  • JUSTME29
    I'm so sorry the news is so dire. I'm glad you have hospice in your corner.
    30 days ago
    Bobbi, I am sending prayers and love to you and Don
    30 days ago
    There are just no words Bobbi... I'm so sorry you are going through this. It is hard.

    I was able to visit my friend today.. I think it might be the last time. She is also on hospice and they will be stopping all fluids on Wed... so the end is very near. We had a good visit even though she is weak and a bit disoriented. She has accepted her fate and feels fortunate that she has been able to get her affairs in order, reminisce with friends and say her goodbyes. She is a devout Mormon and knows the best is yet to come. I asked her to give my Dad a hug for me when she sees him.

    Holding you close in my thoughts Bobbi.

    Hugs, Rhonda

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    30 days ago
  • no profile photo VALERRIE
    My heart goes out to you and your dear DH.
    Sending prayers and good vibes your way. I admire your courage during this very difficult time.
    May Josh keep a close watch over both of you.
    30 days ago
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    I am so very sorry to read this, life is so unfair at times. Keeping you both in my thoughts and hoping for the best.
    30 days ago
  • EISSA7
    Thoughts and prayers are with you and your DH ..... emoticon
    30 days ago
    I've read this blog through tears and am continuing to keep you both in my prayers. I am so very sorry to hear this. Please take care of yourself. I wish I could help in some way.
    30 days ago
    I am praying fiercely for a miracle for Don. I am thinking of you both so often during the day. I'm so glad you have someone in your corner helping manage costs and now the hospice nurse who can answer your questions. Do you have a 24 hour call line for help? Bobbi, I am also praying for you - because you need all the strength and care you can get!
    30 days ago
    Oh Bobbi! Of course you and Don are in my prayers! I so admire how brave and strong you are. You have been going through so much. Life is unfair. I love you.
    30 days ago
    I feel so bad for you and the hubs having to endure this difficult time. Praying for you both and hoping for the best. Take care of yourself too. You are being so strong. Keep it up. emoticon emoticon emoticon emoticon
    30 days ago
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