Purple Rain

The musician Prince died suddenly yesterday morning. Found “unresponsive” in an elevator at his home/studio.

I didn’t know much about him. I really didn’t follow the pop music culture, though as the tributes have poured in I have found that I actually did know a lot of his music. For example, yes, I think everyone knew how to sing those two words “Purple Rain”. But I did not know he sang “Little Red Corvette”. I was more into Country, though I did like Debbie Gibson, The Bangles, Sheena Easton, Madonna, to name a few. I was a kid when KC & The Sunshine Band and The Miami Sound Machine were around – after all, I was from Miami.

I did not know Prince’s birth name “Prince Rogers Nelson” – I only knew of him as “Prince” and then that he changed his stage name in 1993 to an unpronounceable symbol . I did not know it was the “Love” symbol, though in looking at it, it encompassed the ankh and the male and female symbols. No one could pronounce it, so I guess the purpose was defeated in that all he was referred to for years was “The Artist Formerly Known as Prince”. He went through almost as many incarnations as Puff Daddy P Diddy Sean Combs. Then I guess Prince finally gave up and in more recent years went back to Prince.

We have lost many talented individuals in recent years. Michael Jackson, David Bowie, Whitney Houston, Merle Haggard, Amy Winehouse, Donna Summer, Etta James, Johnny Cash, June Carter Cash, Natalie Cole, Otis Clay, Glenn Fry of The Eagles, Paul Kantner from Jefferson Airplane, Vanity (Prince’s one-time girlfriend), Sonny James, Lenny Baker from Sha Na Na, Joey Feek (I admit I had not heard of her and Rory until his postings of her cancer story), Keith Emerson of Emerson, Lake and Palmer, Frank Sinatra Jr. These are just ones I can recall whom I knew of throughout the years.

Then you have the ones from way back – Elvis, John Lennon, George Harrison, Hank Williams, Buddy Holly, Otis Redding, Ritchie Valens, Marty Robbins, Jimi Hendrix, Janis Joplin, Mary Travers from Peter Paul and Mary “Puff The Magic Dragon” fame, and many, many more.

These people have helped mold our world in their own way. Music has always been an integral makeup of our culture. Even the Grunge and Punk Rockers, in their own way. We live vicariously through their music. As Roberta Flack sang in “Killing Me Softly (with his song)”:  “strumming my pain with his fingers, singing my life with his words”. Their songs get us through life and reach into our hearts and soul, if they are good.

This is why we mourn celebrities as we would family. They never knew us personally, but they knew our soul sometimes.

So again the world stops for a moment, calls another celebrity a “legend”. Confers upon them almost sainthood. Deserved of all the praise, and mourned deeply by people whose lives they touched without knowing.

The President and Mrs. Obama were in London meeting with Queen Elizabeth II who just celebrated her 90th birthday. Mrs. Obama wore purple, as did many others today as tribute to Prince, although I thought it was a bit tacky as purple has always been associated with royalty. But then again, etiquette does not seem to be as adhered to today as it has in the past.

So we say goodbye to someone who made an impossible meteorological event famous. Purple rain. There is an old saying that I quote now. “Goodnight, sweet Prince”.

Post 24 – End of Phase 1

Saturday, April 9, 2016
Hooray! First phase of cancer treatment is complete!
We went in for the last radiation treatment yesterday morning. As Bob got off the table, the techs came in wearing party hats and blowing the noisemakers and cheering for him! Then when he came out of the room the others were there doing the same thing! No crown 😦 He was kind of looking forward to it, I think, but Becky in the reception office said that most guys really didn’t like it. The ladies get tiaras!
Lisa – the ARNP – gave us a folder with their card, his Certificate (see pictures), the sharpie they used on only Bob to mark him (see 3rd picture) almost daily, and some follow-up information. They answered almost all the questions before we asked!
Everyone loved the cakes, and Dr. Trupp finally got the meaning of the picture on the front of the Thank You card! (It was a picture of a kitten with its front paw on a roll of toilet paper! Get it? Colorectal cancer? Toilet paper? lol). Next time we go up to Marianna and are near WalMart, I’ll have to stop in at the Dollar Tree and take a picture of the front of the Thank You card.
Then we went to Dr. Mahmood’s office. I gave Adriana their cake for the front office and the doctors, then we went back to the big chemo room. Jolene and the other chemo nurse were there, and I gave them the cake and the paper plates and forks – let them know the front office had theirs, and let them know they could please share it with the patients. Bob got unhooked for the last time! No cheering but lots of smiles – Bob’s was the biggest!
We go back May 8 and 10 to both doctors for follow-up and the chemo people will flush his port.
Phase 2 has begun – the 5-6 week period after chemo and radiation to let the cancer continue to die off (please God!). Then we start Phase 3 – pre-op scans and scopes and surgery for the removal of the cancerous area of the colon and resection.

Today we had to take Peekaboo to the vet – she has had some phlegmy sounds and coughs – we had hoped it might be allergies. They wanted to run x-rays (with results in 48 hours) but they alone would cost over $200! We just could not afford that. The alternative was to just treat her for an infection (upper respiratory) with antibiotic (Clavamox) and steroid (Prednasolone). I asked Dr. Finley – at Banfield – if she were in our situation what would she do. She said they would probably have to treat her with the meds anyway, so she would do that. I asked when we should see results – within 3 days. So please God she gets better! We got home, and I got out the pre-filled Pred. syringe and was filling the 1 cc of Clavamox into its syringe and when I was putting the top back on, it slipped from my hands and fell to the floor, spilling a little. Just what I needed! I pushed the stuff I already had in the syringe back into the bottle and sucked up every drop I could off the floor. I have enough (hopefully) until Wednesday, and we’ll have to go to PC for shopping instead of Marianna and stop by and get enough to finish it off. I can’t believe that happened! They say everything happens for a reason. What reason is all this for? I can’t figure out any of it. It really isn’t fair. Yeah, I know life’s not fair, but sometimes there’s not fair and then there’s NOT FAIR!
I’m sorry for drifting off into the pity party. I have tried my best to stay out from that. You don’t know how hard I pray every day – my prayer time is nearly an hour with all the people and situations I pray for. I keep you all in my prayers too – for thanksgiving for having such wonderful people – friends I know and friends I’ve never met – in our lives. Thank you.
Please continue to keep Bob in your prayers. We are not out of the woods yet. Please keep us in your prayers. Thank you so much for all your thoughts, prayers and well-wishes.
Thank you as always, and God bless.

Post 23

Monday, April 4, 2016
Today was a good day! I can categorically say that without jinxing anything.
Every Monday is the consultation with the radiologist, Dr. Trupp, and later we have an appointment with the chemo doctor, Dr. Sayed Mahmood.
Today Dr. Trupp let us know that tomorrow will be Bob’s last regular radiation treatment, then starting Wednesday he will be flipped over onto his front and have the radiation from the sides for 3 days. Then Friday is his last day! Yay! We were sure it was another week after this, but Dr. Trupp said that it’s not that he’s being let off early for good behavior, just that it was the treatment plan. Personally, I think he took lessons from Montgomery “Scotty” Scott from Star Trek. In the Next Generation episode “Relics”, Scotty explains to Geordi that you NEVER let the Captain know exactly how long it will take to fix something. You always double the time, that way when it’s done early, you’re always the miracle worker.
When we went to our appointment with Dr. Mahmood, he was cheerful when he came into the room, joking with Bob, and talking about things other than cancer, and making good eye contact. I wonder if Dr. Trupp already filled him in? He seemed pleasantly surprised and as delighted as we at the news about the ending of the radiation. He said that Bob would then have the chemo through Friday and then would be off for about 5 or 6 weeks (same as he and Dr. Trupp have said from the beginning) so the radiation can continue to work. Then he will order scans (well, one of them will) to determine the results of the combined treatments. Then we’ll go back to the surgeon.
On Thursday, I’m going to make a few Angel Food loaves and take them in to both appointments. I told the group we see everyday in the waiting room at Dr. Trupp’s that on Bob’s last day we’re going to celebrate! I’ll give one also to the front desk ladies, the finance girl Emily, and Lisa and Kelly (and Dr. T) in the back to share.
Then I’ll give one loaf to the front desk ladies and the other in the chemo room at Dr. Mahmood’s office.
Everyone has been angels to us, and it’s easy to make.
Thank you for continuing to follow our journey. We’re not there yet though! Thank you for your thoughts and prayers, for sharing and caring.
God bless, and thank you.

Post 22

Friday, April 1, 2016
I debated posting anything today knowing some might take this whole thing as an April Fool’s joke. But Cancer is not a joke. And those who know us can attest that we are real.
On Tuesday we will finish up 4 weeks of radiation! Yay! 2 more to go. Then we’re almost halfway to being cured (God willing). Bob has a really bad “sunburn” on his behind where the metal plate is on the table. We are putting a lot of Eucerin (generic) on it, as they told us (though not as much as we should, that is going to change). It’s almost purple, and very hot to the touch. I joked with Bob that maybe we should fill a small igloo cooler with ice and let him sit on the ice. No joke – he’s about ready to do it! And it’s in a very uncomfortable spot – everyone has to sit! But we are trying very hard to keep smiling. It gets to both of us at times, and we each go to another part of the room when we get down, and when we are able, we talk.
Two days ago was our 20th wedding anniversary. One year on my birthday, Bob had to have surgery to repair a hernia – great birthday present! I jokingly said to him he didn’t have to top that by having cancer for our anniversary! A very dismal joke, but we try to laugh at a lot of stupid things now.
But today, April 1, we designated when we got Sheila, our Australian Cattle Dog/Sheep Dog mix, as her birthday. Today she is 16 years young! When we did our grocery shopping today, I bought her some “Dogsters” (like Frosty Paws, they are a doggie ice cream), so that is going to be her birthday cake later. I also picked up (another) stuffed toy for her – a lamb we will call “Lambie” – found out years ago if we named the stuffed or squeak toys, she wouldn’t tear them apart. She’ll get that later too.
So we’re having a little celebration for her tonight. We are so grateful we have her and that she’s been our baby. When Tasha died at 14 1/2 in May, 2000, I said I didn’t want another dog. By late August I couldn’t stand by that. I had to have one to fill the emptiness. Not to replace Tasha – every one of our fur children have been unique individuals. I called our vet to let them know I was looking for a “furball”. Well, as you see from the picture, she wasn’t a little one! But we were introduced to her at 4 months old and we fell in love with her. She has filled our lives for almost 16 years! So today we celebrate her life and her unconditional love for us.
Sorry the picture is sideways – still haven’t figured out how to correct that. It’s perfect on our computer.
Thank you for sharing this journey with us. It’s a continuing one. Please continue to share this.
God bless and thank you. Happy Sweet 16 Sheila! ❤ We love you!

Post 21

Monday, March 28, 2016
Hi everyone! Easter has passed, with calls to our daughters and to a Great Aunt Helen – 98 years old! She has arthritic fingers so bad. She has a very difficult time getting around. She doesn’t have long distance on her phone, so anyone has to phone her. A girl she took under her wing many years ago, bless both of them, takes her out to have her hair done, and to doctors, and a few other places. But for the most part, Aunt Helen is alone.
I had made our traditional nut bread loaves for the first time shortly after Thanksgiving, and I must pat myself on the back, I did pretty well! Bob loved it! Ate almost a whole loaf! I thought it was pretty good.
So I made another batch (6 loaves to a batch, by the way) I guess it was in February. Not sure. Can’t really remember. I have “chemo brain”. (More on that later).
Anyway, I asked, and since Bob worked for the post office in Priority Mail for 11 1/2 years, he had the answer. Could I send my frozen loaves (1 each) to our daughters and maybe Aunt Helen? 1 is in Vermont, 1 in West Palm Beach, FL, and Aunt Helen is in Scottdale, PA. He said the post office is slow around this time of year (believe it or not, Mother’s Day is only second to Christmas!), so there should be no problem. I packed them up nicely, having wrapped them and kept them in huge Ziploc bags, and transferring each one to another huge Ziploc, and carted them off to the Post Office I think it was Tuesday last week. Everyone got them on time, and not a one had gone bad. The girls loved them, of course.
I had told Aunt Helen in my Christmas card about having made them (I try to write her a note in each card I send her over the year) and wishing I could mail one to her so she could critique it. Well, she LOVED it! I was so glad I sent it to her, since she said she hadn’t made them in years. I was so glad to have pleased her.
So back to reality. To recap: last week Dr. Mahmood took Bob off the chemo because of mouth sores. We were to get a very expensive mouth rinse, and no one had it. Jolene filled out the form for assistance to send to the pharmaceutical manufacturer. None of us could figure out later why it was so expensive! The ingredients were only:
Purified Water, Glycerin, Benzyl Alcohol, Sodium Saccharin, Carbomer Homopolymer A, Potassium Hydroxide, Citric Acid, Polysorbate 60 and Phosphoric Acid.
This is straight from the bottle. No “inactive ingredients” were listed. That was it. The only ingredients.
Good news (as you can guess we got them!) we qualified for free prescription. We were told to expect the order Thursday. Thursday came and went and no delivery. I was looking for the number on Friday morning when I received a call again from the company. We would receive the prescription on Tuesday. I told the woman that he was already off the chemo since Monday and he probably would be off again until we received it, and we had been told we would get it the day before. She checked and said she could have it delivered Saturday, but we would have to pay expedited overnight $39. I didn’t hesitate (my mind had instantaneously calculated the savings of $1800 vs $39 – a no-brainer!). The FedEx truck came Saturday after 4pm!
Bob used it right away, and though it did not numb the lip and roof of the mouth, it did feel better. He continued to use it the rest of the day and all Sunday and this morning. The sores appeared to have improved.
Radiation treatment over this morning, we hurried to Dr. Mahmood’s office, and he confirmed it! So Bob was hooked up again to the pump, this time with a reduced dosage so as to prevent the sores. But he will continue to use the rinse to prevent them, and to heal the ones he has.
We have begun our 4th week into this fight against colorectal cancer. Well, technically after Tuesday it will be Week 4. But chemo will be Week 4. It ends when the radiation ends.
Back to explain Chemo Brain.
I had asked Jolene about the labwork they do there, if she had checked the numbers. Bob quickly told me she gives it to us when she gives us our next appointment. Oh. I forgot. Jolene said she had blanked on that too, that it must be “chemo brain”. Even non-cancer patients can get chemo brain. I guess it’s related to pregnancy brain – or as I call it, the “brain-sucking baby”. Just makes you a little ditzy and forgetful. So I know I have it too! (at least that’s what I’m blaming it on for now!)
So things are back to normal for now. Bob’s back on chemo, and he’s still getting radiation every weekday. I’m still having mini-anxiety attacks every once in a while – especially when I start thinking about what’s going on, the reality of it all.
I will keep you all updated. Please share. And remember- if you’re going to be 50, or are due, please make sure you schedule a colonoscopy! It doesn’t hurt – you just go to the bathroom a whole lot to get cleaned out, but you don’t feel a thing, and it’s all over in minutes, then back to normal. Please make sure you do it! And don’t forget to schedule it as they require – usually every 5 years.
God bless!

Post 20

Monday, March 21, 2016
Hi everyone. Saw both the radiologist and oncologist today. The redness on the bottom is normal. Thank the Lord! The radiation is coming at the area from all angles and there’s a metal plate on the table that bounces it back up, so that’s where the rectangle comes in. I remember Mom had been told that she might get what looked like a sunburn. I should have remembered sooner. But all is well there. Bob does have some sores that came up – look like mosquito bites – on his face, arms and neck. A few on his back. I read up and that seems to be possibly normal. Was told to put cortisone cream on them if they get itchy.
The bad part was when we went to the chemo doctor. The mouth sores have not gone away, in fact they have gotten larger. The good news is there still seems to be only 2 of them. Now there’s a 3 part bad news. The doctor has taken him off the chemo for about 4 days. First thing I did was ask will that harm the treatment. Dr. Mahmood reassured me it’s ok. He prescribed another mouth rinse that should work better. Well it better! We took the Rx to Walmart. They did not have it. They called the other 2 Walmarts in the area. Not one had it. They gave me the number for another pharmacy nearby. They didn’t have it. I called CVS and Walgreens down the road from them and they didn’t have it. I called Blountstown Drugs, same answer. I called Golden Pharmacy in Blountstown – they’re the ones I got the “Magic Mouth Rinse” from. They didn’t have it, but they could order it. When I asked – $600 for an 8 (EIGHT) ounce bottle!!! O M G! And we have NO idea what the co-pay would be even IF the insurance paid! (They didn’t pay for the Magic rinse!)
I called the chemo nurse. She took some information from me and asked us if we were still in town. Yes we were. She needed Bob to come in and sign a form. We rushed over. Seems the reason the drug is so hard to get IS the price. The manufacturer had some programs to help. IF the insurance covers it, and if the copay is high (we figure it will be – so did she), they help with the co-pay. If the insurance does NOT cover it, they have either a way for the patient to pay a lower price, or even possibly nothing. We won’t know for a few days. Keeping our fingers crossed.
So we went ahead, and since Bob was down to one more rinse and swallow from the first bottle, stopped off in Blountstown (a little out of the way, but we needed it!) and I went ahead and got the other 2 refills.
So he still goes in every day for the radiation, and hopefully we will find out tomorrow about the new rinse, and then hopefully the chemo will start back up Friday. I hate the idea that he’s off it. I keep remembering when Frank needed a break from his. I know NOW Frank had no chance, but then I was so frightened it would put him back.
Anyone who has gone through someone losing their battle with cancer knows the dread and flashbacks when you have to go through it again. I would never wish this on anyone. But I still have the panic attacks and flashbacks causing crying and paralyzing fear.
Thank you all for everything. We’ll keep you up-to-date.

Post 19

Wednesday, March 16, 2016
Well, tomorrow we wear green – we’re both of Irish descent.
Monday evening and yesterday evening we had some scares. We don’t know yet what will happen. One I do remember from when Frank had his chemo. Mouth sores. Bob has one just inside his bottom lip and also on the roof of his mouth. Called Dr. Mahmood’s office. Jolene called in a prescription to our local (well, relatively speaking – it’s in Blountstown about 15 miles away) pharmacy for some medicine to help with the pain of the sores. And they are painful. It has lidocaine and Benadryl along with a couple other things. It works thank God.
Last evening – and hate to be kind of graphic – when Bob went to the bathroom, he had some blood in his urine. We called Dr. Trupp last night and he called back almost immediately. He said he will check him out in the morning when he comes for the radiation treatment. OH forgot to mention – they called yesterday afternoon. The machine was fixed and Bob could resume his treatment today – Wednesday.
So we went in and Bob had his treatment and Dr. Trupp saw us immediately afterward. They took a urine sample and are doing a urinalysis. He will have the results in the morning for us. One of the things he mentioned was, he won’t know what’s wrong until they get the results, but that hopefully Dr. Mahmood won’t have to stop the chemo.
I remember my Mom had a UTI when she was going through radiation last year for breast cancer. She had had a single mastectomy 28 years ago. Thank God she is again cancer free! So hopefully, though he has no pain or burning or urgency, hopefully it will be something simple to treat as a UTI.
This triggered a major anxiety attack on my part yesterday. Hopefully we’ll get through tonight without any new things occurring.
Please please please keep Bob in your prayers. We’re not even halfway through the first phase of this. Please God he survives all this.
Thank you for listening. God bless.

Post 18

Monday, March 14, 2016
National Round Pi Day according to Facebook.

Anyway, today was day one of the third week. We had a bit of a setback today. But the good news is he was able to get his 3rd chemo bag!
So before that, when we went in for the radiation treatment, the tech told us that Bob couldn’t have his treatment today. The machine is only able to perform low dose radiation treatments. For some reason the higher dose calibration doesn’t work. They are supposed to have someone come in this afternoon. If it isn’t able to be fixed, they are supposed to call us to let us know so that we don’t have to go all the way in to Panama City (45 miles one way!).
We were able to meet with Dr. Trupp. He is very kind. I highly recommend him if you have to go through something like this. Anyway, he explained a lot of things. Bob’s diet has to change. No nuts, or fruit or vegetables. Low residue low fiber diet. The opposite of what you’re supposed to do to PREVENT this thing! Anyway, Bob’s spirits were down this weekend anyway, and now this. He loves peanuts, and peanut butter, and his shredded wheat and Cheerios.
It got me down, too, the fact that we’re missing a treatment. Yes, I know. He doesn’t get it on Saturdays and Sundays. But there’s a bit of a backstory to my worry. Frank wasn’t feeling strong one time when he was supposed to start another round of chemo treatments. He took himself off for a couple weeks. We didn’t know at the time, of course, but kidney cancer had an almost 100% mortality rate. All I knew was when he went back on it, the end result was the worst case scenario. I know this is going to be different. But it still brought back those memories.
So now both of us are kind of down. I’m trying my best to crack jokes and one-liners, and we both laugh. But eventually we get back into the funk.
Hopefully tomorrow will be a better day. Hopefully they will get the machine fixed and he will be able to get a dose of radiation that under normal circumstances people are never supposed to be exposed to. Isn’t the world crazy in that things that would give you cancer can cure it? I pray that one day – SOON – the darn pharmaceutical companies will release their hold on all the cures. Yeah that’ll be the day. They will give up trillions of dollars in profits? Like the pantyhose company will release the no-run hose!
Please don’t stop praying. For Bob and for the thousands of thousands of people fighting cancer. And don’t forget – March is Colorectal Cancer Awareness Month.
Thank you. And God bless. Or as Red Skelton used to say: “Goodnight. And God bless!”

Post 17

Friday, March 11, 2016
2nd week down. 4 more to go. I know it’s getting Bob down. I try to keep his spirits up. But other than that, we’re trying to do things as normally as possible.
Today we went to the Home Expo Show. Thank goodness it was indoors. It didn’t seem as if there were as many vendors and fun things as last year. But we walked around. He got tired a little easier than he normally would have. Then again, as someone asked recently, what’s “normal”?
I forget which vendor we were speaking with, but Bob mentioned (or answered a question, I didn’t hear all of what precipitated this) about having cancer. The guy asked his name, and asked if it would be ok if he put Bob down on their church’s prayer list! People are so kind up here! And we know they will pray for him, too. He’s on a lot of prayer lists. People would normally not even talk about the tube going into the top of his shirt in Miami! Let alone talk about praying for you! This really is a wonderful place to live. We are so grateful to have found a home here.
Anyway, I digress. We had a good day. Tiring, but good. It was nice to get home! At least we can stay in tomorrow and Sunday! It’s supposed to rain, so we might be able to work on going through boxes this weekend.
Monday it starts all over again.
Thank you for reading our story. We ask that you just share it please. God bless you.

Post 16

Monday, March 7, 2016
I spoke too soon. No problem with the radiation treatment. He was written on again – I’ll have to take and post a picture of the Xes – as in X marks the spots! – that the beam is directed to. Because of showering and just rubbing off by clothing, they feel they need to refresh them every couple of days. Dr. Trupp is off for the week, so a nice man who traveled up from The Villages (outside of Ocala) is his temp. Everything still looks good. We won’t know until Dr. Morris does the surgery if everything is progressing the way they want, at least that was the answer when Bob asked when they will see if the tumor is reacting.
After, we had about 2 hours to kill, so we drove to a strip mall and just window shopped. Well, in the 2nd shop, his pump started sounding like the English police cars “weeooh weeoh weeoh”. It got worse. So we prudently decided to skedaddle to Dr. Mahmood’s office early. Jolene came out and shut it down. Then we had our meeting with Dr. Mahmood who signed Bob up for another week. Went to the big back room with all the comfy recliners – the chemo treatment room. Jolene mixed up his cocktail for the week, then removed the old needle and cleaned his skin on and around the port. Then stuck him again and programmed the pump. Bob’s off and running again for another week.
What I meant about speaking too soon was the bells and whistles that went off for the end of the bag. Other than that, and even that was nothing, everything is going well.
Thank you for your thoughts and prayers, and please keep sharing this.
God bless.