Chemo Starts Thursday

I need thoughts, prayers, food and love,

Please use the following link to access the Meal Train for Scott Miller.

https://mealtrain.com/dgvw4

and for any other way in which you can help, please contact me directly.  It's hard for me to ask for help, but I have to learn to do so.

Also, please come to the Hat Party:


Additionally, Derrell has planned a Hat Party on 6/14 for this soon to be bald guy. 

 

"Your friend and my boo, Scott L Miller, will soon lose his hair due to 18 weeks worth of chemo treatments. Rather than let it just fall out, Scott is going to shave his noggin and just own the chrome dome. As he only owns one hat, a baseball cap from the Hawaiian island of Lanai, he needs to stock up.

So please bring you choice of hat, be it ball cap or Stetson, Ascot or Beanie, Berets or Fedoras, Panama hats or Top hats, shoot even one of those frilly thing you see at the Kentucky Derby.
It is 7 3/8” hat size or a 23” head! Bring the hat, you’re favorite cocktail and any nibbles you’d like and let’s celebrate lack of hair!

This is a celebration of life as its lived! Please join

I'm Really Thinking I Should Make an Appointment Here (shhhhhh! Don't Tell My Oncologist!)

Today I Feel Better and Life, Lemons and Lemonade

Today I feel better.  Now better is a marginal thing.  I'm still fatigued and I have pain in my joints extremities but not to the degree I did yesterday.  Small things have to be appreciated.

Other things to be appreciated are a "Meal Train" that was started for me by the folks at Kinnser Software:

"As many of you already know, our dear friend, Scott L Miller, is experiencing a health issue that necessitates treatment over the next few months which will likely cause him to feel weak and unwell. If you want to help Scott through this period by dropping a meal off at his home, click this link to learn more and to sign up.

What is a meal train? There are times in our lives when friends and family ask, "What can I do to help out?" The answer is usually to help them with a meal. When many friends give a meal, this is a meal train.

If you are inclined, please sign up to deliver a meal to Scott on one of the days indicated. There may occasionally be errands and other needs Scott has (e.g., yard work, ride to the doctor's office), so please reach out to him directly if you're available to help in other ways.https://mealtrain.com/dgvw4

On behalf of Scott Miller, Thank You!"

Additionally, Derrell has planned a Hat Party on 6/14 for this soon to be bald guy. 

 

"Your friend and my boo, Scott L Miller, will soon lose his hair due to 18 weeks worth of chemo treatments. Rather than let it just fall out, Scott is going to shave his noggin and just own the chrome dome. As he only owns one hat, a baseball cap from the Hawaiian island of Lanai, he needs to stock up.

So please bring you choice of hat, be it ball cap or Stetson, Ascot or Beanie, Berets or Fedoras, Panama hats or Top hats, shoot even one of those frilly thing you see at the Kentucky Derby.
It is 7 3/8” hat size or a 23” head! Bring the hat, you’re favorite cocktail and any nibbles you’d like and let’s celebrate lack of hair!

This is a celebration of life as its lived! Please join."

 

I'm a lucky man,

How I Feel Today

The alarm went off at 6am but I was already starting to wake.  I could tell I didn't feel 100%. Feet and ankles/legs wobbly and sore......sore all the way down the stairs.  Went to a dentist appointment and just ached.  I have clean teeth though!  Drove to work and slowly got out of the car.  Still sore and wobbly despite the current regimen of Celebrex and Tramadol.

So that's how I feel today: wobbly, unfocused, achy, sore and slow.

Because People ask "What Can I Do?"

So many have asked me, "What can I do?" and they want to help.  Their desire to help is often impeded by my (and Derrell's) strange feeling we should do it all ourselves which is often possible, but getting less and less so, particularly after the 7/31/14 chemo start.

So here are the suggestion:

Supporting a Friend Who Has Cancer

If you have a friend who has recently been diagnosed with cancer, or is living with cancer, you may be wondering the best way to support him or her. Even though you want to help your friend through this difficult time, it can be hard to know what to say or do. While there are no set rules when it comes to supporting a friend who has cancer, this article will help you find ways to show your support, including ideas of what to say and how to provide practical help, as well as suggestions for thoughtful gifts.

Preparing yourself

 

A good first step is to learn more about the diagnosis beforehand. Your friend may not want to talk about the details for many reasons, including that it is physically and emotionally tiring to repeat the same information to different people. If possible, the person’s spouse or a mutual friend may be able to give you the basics. Write it down and repeat it back to them to be sure you’ve gotten the correct information. And if there’s information that is unknown or not shared, don’t push for more.

Before a visit, you may want to remember a time when you were really scared or felt really sick. Think about what it felt like. What did you want to talk about? How did you want to be treated? You may also want to prepare yourself for changes in your friend’s appearance. Fatigue, weight changes, and hair loss are common side effects of cancer and many treatments. Start your visit by saying “It’s good to see you” instead of commenting on any physical changes.

 

Helpful tips when supporting a friend

 

Although each person with cancer is different, here are some general suggestions for showing support:

• Ask permission—before visiting, before giving advice, before asking questions. And make it clear that saying no is perfectly okay.
• Make flexible plans that can be easily changed in case something comes up or your friend needs to cancel or reschedule.
• Don’t be afraid to make plans for the future—this gives your friend something positive to look forward to. Be careful not to come across as pushy or demanding though.
• Be humorous and fun when appropriate and when needed.
• Allow for sadness—do not ignore uncomfortable topics or feelings.
• Make time for a weekly check-in phone call. Let your friend know when you will be calling, and let your friend know that it is okay to not answer the phone.
• Offer to help with specific tasks, such as  preparing a meal or many of the ones listed below. Many people find it hard to ask for help, and your friend will likely appreciate the offer. However, if your friend declines an offer, don’t take it personally.
• Follow through on a commitment to help.
• Try not to let your friend’s condition get in the way of your friendship. As much as possible, treat him or her the same way you always have.
• Ask about interests, hobbies, and other topics not related to cancer—people going through treatment sometimes need a break from talking about the disease.
• If you aren't sure how to help, ask.

What to say

Here are some simple guidelines to use when talking with your friend.

Avoid saying

*I know just how you feel.

• How are you feeling? (multiple times).
• You need to talk.
• I know just what you should do.
• I feel helpless.
• I don't know how you manage.
• I’m sure you’ll be fine.
• Don’t worry.
• How much time do the doctors give you?
• How long do you have?
• Let me know what I can do. (Instead, offer specific ways you can help or other things you can provide if they need it.)

Do say

• I'm sorry this has happened to you.
• If you ever feel like talking, I am here to listen.
• What are you thinking of doing, and how can I help?
• I care about you.
• I’m thinking about you.
• I don’t know what to say. (It is better to be honest than to simply stop calling or visiting out of fear.

Practical help

 

Your assistance with daily tasks and chores is valuable help to a friend going through cancer treatment. Be creative with the help you offer. Remember that your friend’s needs may change, so be flexible in shifting your plans as needed. Here are some suggestions:

• Shop for groceries and pick up prescriptions.
• Help with chores around the house, such as getting the mail, taking care of pets, cleaning, doing laundry, taking care of plants and flowers, and taking out the garbage.
• Cook dinner and drop it off at your friend’s house.
• Schedule a night of takeout food and movies together.
• Take them to and sit with them during chemo
• Take them to Drs appointments when they can’t drive.
• Organize a phone chain and/or support team to check on your friend regularly.
• Help the write thank you notes
• Prepare a meal for the spose even if thee patient doesn’t want to eat.
• Call, email, or text regularly. Let your friend know it’s okay if he or she doesn’t reply.
• Offer to run errands, grocery shop, do laundry, clean how or mow the lawn.
• Find out when their chemo days are and the time and send them a small gift to the oncologists office not to be opened until they arrive.
• Offer to sort through and keep up with coordination of medical bill.
• Drive your friend to an appointment or a support group meeting. You can take notes during a doctor's appointment or keep your friend company during a treatment session.

• Offer to be the designated point person to email friends and deal with multiple calls.
• Go for a walk together.
• Think about the little things your friend enjoys and makes life “normal” for them. This could be helping to decorate for a holiday or weeding the garden. If there is something your friend would usually do, there are many ways you can make it a bit easier for him or her to do it.

Forming support teams

Organizing a support team is a great way to help a friend living with cancer. Some online communities offer tools to coordinate tasks among friends and caregivers, and shareable online calendars may help you organize activities among your group of friends and family. Or you can always make a paper calendar and write in the various activities and commitments by hand. Make sure your friend has access to the calendar so he or she knows what to expect and when.

Gift ideas

 

There may be times when you want to give your friend a gift. As with any gift, keep in mind the interests and hobbies of your friend and your relationship to that friend. For instance, a close friend may be able to give something really silly or unusual, whereas a neighbor or work colleague may want to stick with something more traditional.

While giving a gift is one way to show you care about someone, be careful not to give your friend anything that promotes a specific treatment or philosophy as a cure for cancer. People make decisions about their disease after a lot of thought so it’s important to respect their choices and their coping process, whether it is what you would do in the same situation or not. Keep gifts fun, interesting, serious, or light, depending on what your friend needs the most at that moment.

Some ideas include:

• Magazines, audio books, novels, books of short stories or poetry, or gift cards to purchase reading material
• CDs or gift cards for downloadable music
• DVDs of movies, TV shows, or documentaries
• Accessories (ties, hats), or beauty items
• Crosswords
• Note cards or a journal
• Arrange a mani/pedi together
• A video message from family and friends
• Gift certificates for massage, spa services, restaurants, or museum/art gallery passes
• Gift cards to grocery stores
• A housecleaning service
• Portable hobby supply kits (scrapbooking, drawing, needlepoint)
• Pajamas or robe
• Flowers or plants

Friendship makes a difference

 

Continuing friendships and regular activities after a cancer diagnosis is a great way to further the healing process. But don’t forget that friends also need encouragement and support after cancer treatment has finished. After treatment your friend will be trying to find his or her "new normal" in this next phase of life, and friendships are an important part of that. With these practical suggestions in mind, your friendship can make a lasting difference to a person living with cancer.

No Man Boobs But a Very Strange Tan

With the radiation treatments done to prevent gynecomastia, I now have a "tan" (radiation burn?) in rectangle over the center of each pec.  It will be sensitive to sunlight for at least a year, the skin will peel and the hair will fall out in that specific, red area, never to return. Radiation.......very strange stuff.  Glad this is all I'll ever do.

My Come to Jeus Meeting with the Oncologists or How I Went All Samuel L. Jackson on the Physician

For sometime now, I've felt like a medical record number at Texas Oncology.  Most of the techs, phlebotomists and nurses have somewhat of a cold detachment and my oncologist, while a nice friendly guy, has a tendency to skirt over answers or completely" ignore answers to questions I've had, particularly about side effects of Lupron and possible treatments for same.  For months, I was too devastated with my diagnosis to be very assertive in getting these answers.

This changed Thursday as Derrell and I descend upon Texas Oncology after the office had received a sharply worded letter from me the day before.

"On my last visit with you, I expressed concern over and, per your request, listed out the numerous side effects I’m experiencing from Lupron. Of these, two were addressed: ..........none of the other symptoms I mentioned were addressed."

 

"Additionally, there was initially no discussion of painful breast growth. I had to ask about this THREE times at different appointments over almost as many months before anyone discussed treatment for it…what gives with that?

 

 

" While I like you personally, in this life and death battle against prostate cancer, I need a practice that is going to do everything they can to explain treatments, offer assistance when negative side effects present and are vigilant in testing for side effects that might present. "

"...please advise what Texas Oncology is going to do to address these concerns.  Lupron has significantly diminished my quality of life. I am unsure that I can do an “indefinite course” of this controversial and often poisonous drug.  We need to discuss the advantages/disadvantages of intermittent therapy in addition to addressing the side effect concerns."

 

 

" Now I have a bill for $55.00 that I don’t owe.  As a cancer patient, I must now deal with not only trying to do my full time job, I must deal with becoming a knowledgeable expert on prostate cancer treatment, as well as becoming a patient responsibility payment exert.  I have to argue with numerous billers about incorrect billing.  It’s all quite stressful and time consuming. Must I now also add the stress of arguing with my oncologist office to my, at this point, uncertain lifespan"

 

 

Derrell and I had to convince the nurse that I wasn't there for a checkup and didn't need to be in an exam room.  She finally relented and we were placed in a conference room.  Dr. Kasper showed  and, to his credit, he listened to every concern I had, including all the side effect from Lupron and what could/couldn't be done about each. He also listened to me explain my experience with the staff and remarked, "Well I obviously need to speak with my staff." Finally, he addressed median life expectancy.  This was hard to listen to but something I needed to hear (see below).

 

Every day is a gift.  Oh and everyday presents opportunity to rain down Samuel L. on those who need it. 

 

 

 

 

Median Life Expectancy

More to come in a later post about my Come to Jesus meeting with my oncologist yesterday.  But he did provide some eye opening stats on Median Life Expectancy for men with Stage IV, metastasized (to a major organ i.e. lungs), aggressive, Gleason 8 prostate cancer.  They are as follows:

No Treatment – 12-18 months

Hormone

Therapy only – 32 months

 

HT and chemo – 49 months

 

This is why I’ve agreed to chemotherapy starting July 28, 2014.

Saying No To Man Boobs and Wishing I Could Say No To Fatigue

Friday at lunch was my third visit to the radiation oncologist to get my breasts zapped so as to prevent the most unwanted side effect of hormone "therapy, " painful enlargement of the breasts.  It's proven to be a strange, if uneventful, experience.  Five sessions with each lasting less that ten minutes where you lay shirtless and flat on a moving table and radiation techs center the beam right on your nipple on each side.  They flee the room and you can hear the machine turned on and zapping the tissue on each side for about 45 seconds. It seems this turns off (kills?) the estrogen receptors that both genders have in breast tissue, but are typically never active in males.. The only side effects I'm told I should experience are a reddening of the skin that was exposed in about 2 weeks, then all the hair in the "square" that was exposed will fall out and never grow back, which should look quite strange if I ever go shirtless at a pool or the lake again.  Doing my part to Keep Austin Weird I guess.

Fatigue continues to be an issue.  In the last week, during which I returned to work full time, I find that its all I can do to make it through my 8 hours at what is a relatively sedentary job.  Even with a solid 7 or 8 hours sleep, I'm still running on half my cylinders.  Yesterday, I managed to do a fairly good workout (elliptical, stretching, arms and chest) at the gym and grocery shopped.  When I got home, it was all I could do to put up the groceries.  Derrell woke me up and hour and a half later from napping when he came home from work on break.  I thought the nap would rejuvenate me, but I was wiped the rest of the day to the point where I decided, after showering and getting dressed, that I just didn't have the stamina to make it to a friend and coworker's long planned party.  The energy just wasn't there and I was in bed by 10pm.

This lack of energy comes despite upping the quality of my already pretty darned good diet.  Berry/kale smoothies, multiple prostate friendly supplements and vitamins, vegetable juices, salmon, increased amounts of organic veggies and fruits........I will say, my skin looks amazing. But the energy and stamina is virtually non-existent.  It's become apparent to me that a man in his 50s needs some degree of testosterone to function normally. The oncologist's plan is to keep me on Lupron indefinitely.  I'm not sure that's something I can do.  I've lost 13 pounds (mostly muscle), have little or no energy most days, severe tinnitus, a slight to moderate headache almost all the time, my extremities ache 80% of the time, I'm docile and weak and I just plain old feel like crap virtually all my waking hours.  This is not quality life.

Interesting Stats On This Blog

I'm fairly amazed by the worldwide audience of this blog.

Entry	Pageviews
United States	3866
Germany	37
Canada	31
Spain	15
United Kingdom	7
Hong Kong	7
Mexico	6
Ukraine	6
Australia	5
Indonesia	5

A Long Month Was June

Not having posted in a month, an update is in order.  Lupron slammed me hard in June. By the second and third weeks, the side effects (noted in last post) increased dramatically in intensity to the point where I couldn’t work.  Having been virtually bed ridden for 2 and a half weeks and lost 13 pounds, I’m only the last 4 days or so beginning to feel at all close to normal.  I had 2 visits to the oncologist office this week.  The first with my regular Onc, Dr. Kasper.  He allowed as how when you decimate the testosterone of a “younger” man (i.e. 50’s as opposed to 70’s and up), they tend to get slammed by it as they are usually producing normal levels of the hormone.  Indeed, my tests over the last few years had always shown that I was in the mid to high part of the “reference” or usual range for adult males (221-716 ng/ml).

 

But with Lupron, they’ve knocked my testosterone measurement to 12 ng/ml. That’s twelve as in 12 more than zero.

 

So I have almost no male hormone coursing through my body.  Almost none.  At all.

 

The good news is that the tumor has likely shrunk and the metastic cells in my lungs have likely been reduced or eliminated as its testosterone that feeds prostate cancer.  The bad news is I feel as weak, shakey, achy, not normal, depressed, hot flashey (yet easily cold at the same time) and just all around blech as I’ve ever felt in my life.  This has been nothing short of disabling.

 

To add to this, Lupron can cause about a fairly high percentage of men to develop gynecomastia, or enlargement of the breasts, that is accompanied by pain in the tissue.  The only preventative is mild radiation treatments to the breasts which seems to kill or at least turn off estrogen receptors in that tissue.  Not needing additional pain and realizing how further depressed I would be should my usually fairly well defined male chest become feminized, I decided to pursue that treatment yesterday.  The radiation oncologist D and I spoke with was well experienced, sincere and knowledgeable.  He was also the 5^th or 6^th physician to refer to the gravity of my “high volume” disease.  He’s only seen it once before back when only estrogen was used to deal with PC and that patient “just melted away.” 

 

His comments pushed me on my decision about pursuing chemo.  The regular Onc’s assistant had called about and mailed me a federal study on men with advanced PC taking chemo in the first four months of hormone treatments having and extended life span of approximately 1.5 years.  It’s 18 weeks of treatment, once every 3 weeks.  I can expect hair loss, nausea/vomiting and knocking down my white blood cell count for a few days after every treatment.  But there seems a strong likelihood it buys me a year plus.  Seeing as how I’d always envisioned myself as a cranky, mischievous old guy some day, I’m gonna buy the year plus, nausea et al be damned.

 

I’ve had relatives and friend send me info about consuming nutrient rich juices made from “15-20 lbs” of organic fruits and veggies daily.  While I get it and understand the theory behind it, the truth is, I can neither afford nor do I think I could down 20 pounds of organic fruits and veggies a day.  The best I can do (and have been doing) is to up my consumption of these daily with what fits in the budget and appetite.  I’ve often enjoyed mixed berry smoothies for well over a decade, so this is not new to me.

Finally, Derrell remains by my side in this fight.  A solid partner.  He’s thankfully had no further seizures since May 30 so it appears the medication he’s taking is working as intended with few side effects.  The love and support I feel from him, be it accompanying me to Dr’s visits or bringing me water and blueberries when I was in bed or simply holding my hand, is remarkable and comforting.  I may have never won Powerball or MegaMillions, but I won the relationship lottery somehow.

 

That’s all I know today.