Still Kicking and Moving All Around

Hey Everyone,

I’m doing well on this end. I’m currently in remission, and my follow-up next week will actually reconfirm that. We will also discuss the next steps.

A lot has taken place this year and I’m just moving with the flow of things. I’ve been doing my share of writing via different formats online, so I’m excited about helping those also going through myeloma or any other blood-related cancer. I know this is still a harsh struggle for so many of my fellow MM’s.
I know in the past few months a few people I follow on social media have had a time with the prognosis of their disease, and one has recently passed away. When I hear stories like this it reminds me, that no matter remission this is still a blunt reality that never leaves you. I will always be on pins and needles, as so many of us living this new life. However, with that said I’m LIVING MY BEST LIFE and doing what I want to do, with a great bunch of friends and family in my corner.

Check out Meet the advocates… That’s me down there. A caricature by the great team of Blood. Cancer. com. They have comprised a great series that we the advocates hope to share our experiences, and hope they are beneficial in some way to you. We’re all in this together!

Ask the Advocates: The Diagnosis

Cheers and Happy Holidays!
2018

Categories Uncategorized

New Year Survival Tips


The holidays can be joyous with plenty of cheer, but as we leave those festivities of 2017; you may continue to fester the continued reality of your multiple myeloma. The reminder that beginning or continuing your goals to beating this illness is still fresh and a part of your new year’s resolution. 
New Year Starter Survival Tips
Family and Friend Time
I know many embraced the time they have with loved ones for the holiday, but now more than ever you’ll need that bond for 2018.  Having those who care for you no matter what life brings your way can settle your peace of mind. The elephant in the room is real – now it’s time to beat this with those who you trust to hold your hand through the process.
 
Eating Resolutions
Okay, the holidays are over and if you’re lucky you’ve gained a few pounds. I say this as too often we can’t stomach a lot due to the exhausting meds. Well now it’s time to stay on a regimen that allows you to intake a proper diet. Though some are fortunate to eat without any issues, care should still be taken in building those necessary nutrients.
Vitamins
Popping another pill while going through other medication can be daunting; However, adding vitamins to your regimen is a must! A multivitamin can help build up a weak immune system. The research is out there, it’s just a matter of finding the right fit.
Reflection of the Future
At some point that elephant has to be addressed, and addressing your new life with a positive ” I can beat this attitude” makes all the difference in the world. Get your game plan ready to move ahead in treatment, new team, clinical trials, whatever it is to allow you to move forward. 
Cheers my fellow MM survivors- may the New Year be positive, prosperous and healthy….Smile, You’ll get through this.
Peace!
Y

Low to No Sugar updates- Week 1

It’s been just about a week within this challenge, and one thing that’s been established is that  I’ve been very mindful of labels. Since I’ve been on my fitness journey, I’ve looked at labels for it’s calorie intake, but not really focused on the sugar make-up.

Now that I know the servings suggested a day, I can work my diet around those suggested. I found myself not craving anything sugary. I’ve even stopped my gum chew, which I normally do once a day, with the exception of 1 day.

Meal plan.
-Water 22 oz with 1/4 tsp of lime juice
-No carbs or white rice, pasta, starch, can goods
-Homemade soup (green pea and broccoli)
-shredded chicken stew (carrots, onions, garlic, cabbage, green beans, chicken thighs, and tomatoes)

Here’s a few pictures of my diary.

Yesterday was a bit off, where I did engage in a bagel… that was my carb, which equals sugar- looking at about 43- 48gm of starch.

 Yellow Split Pea Soup

 Chick Pea Fritters

Organic Whole grain and shredded chicken and vegetables

No- Low Sugar 2 Week Challenge

If you haven’t figured it out as of yet. I’m a Fitness Advocate in training. I truly believe diet is the key in maintaining your chronic issue. Starting tomorrow, I’ll start my no to low sugar challenge to shed some weight. I’ll make a meal dairy and cut some foods that lead to the harsh sugar element, that does cruel things for someone dealing with myeloma.

If  you’d like to join me- contact me via Twitter

I’ll also share a few recipes on this journey and hope to report of declined weight.

Foods With Sugar:

  • Cola.
  • Sweetened cereals.
  • White bread.
  • Candy.
  • Granola/energy Bars—up to 25 grams for one bar.
  • Juice and other sweetened beverages.
  • Bakery Items (muffins, cookies, etc)
  • Frozen yogurt and ice cream.

A lot of the above are not in my diet anyway, so this shouldn’t be too cumbersome.

I wanted to do this challenge not only to lose some weight that has increased with the multiple cocktail of treatments that I am on, but to also stir away from any diabetic problems that tend to progress with high sugar intake- My motto “Intake with Moderation”.

What Our Goals Should Be- 

According to the American Heart Association (AHA), the maximum amount of added sugars you should eat in a day are:

  • Men: 150 calories per day (37.5 grams or 9 teaspoons).
  • Women: 100 calories per day (25 grams or 6 teaspoons).

With so many foods processed, I’m sure you can imagine we’re way over those suggested.

Disclaimer:Any change to diet or fitness and nutrition program should be discussed with your physician. This program that I’m doing is my doing, and has been addressed in one way or another with my treatment team.

Maintaining Hypertension with Multiple Myeloma


Hypertension may seem like an ancient reference, as the term “High Blood Pressure” is normally used; no matter the reference it’s still a prevalent topic in your health.  This disease has a way of springing up out of the blue, but does it really? Oftentimes we may shrug off signs that something else is going on, especially when trying to maintain multiple myeloma.  The thought may be “Now what… something else to deal with”, but this something else is a huge deal.
What is High Blood Pressure?
High blood pressure is not easily defined when defining the cause, but it‘s suggested that anyone can develop the disease, and though it’s not curable it can be managed once you’re diagnosed. Blood pressure is the force of blood pushing against blood vessel walls. High blood pressure (HBP) means that the pressure in your arteries is higher than it should be. Your pressure is defined by two numbers that include systolic and diastolic readings. A pressure reading generally of 120/70 is normal, whereas 140/90 is borderline stage 1 high pressure. Systolic pressure refers to the first and top number when reading results, It’s the amount of pressure in your arteries during contraction of your heart muscle when compressed. Diastolic refers to the bottom number when the heart rests between the beats. Think of a water balloon filled with a great amount of water that is compressed but then when you let some of the air out of that balloon, the pressure despite high compression is still high and filled with all of this water that does not lower– It may actually burst.
HBP leads to strokes, heart attacks and seizures.
Stages of HBP
Low Normal=
90/60
Normal=
90-119/60-90
Pre-Hypertension=
120-139/80-89
Stage 1 Hypertension=
140-159/90-99
Stage 2 Hypertension=
160+/ 100+
Source-Medicinal News
Considering all meds taken on an already hectic myeloma maintenance schedule, adding HBP meds on top of that may be more normal than not. As written previously many of the treatment medications tend to heighten the blood pressure, such as Krypolis (Carfilzomib). How to get around from taking yet another form of medication for another problem is to follow the instructions. Though I do have a family history of hypertension; this was not my case until I started Kryoplis. I’m on the smallest regimen there is, but now that I’m faced with this first hand; I see how important it is to follow the regimen for maintaining your pressure. I remember years ago I would introduce my mother who had HBP to other alternative options rather meds, and one day I asked her what would happen if she stopped taking her pills, and her answer was golden… she said “She would die”. Now that I’ve had a few close calls when it comes to watching my blood pressure, I totally get it now. High blood pressure is nothing to play around with- period!
What to Consider When Maintaining Your Pressure:
Nutrition
Stress
Exercise
Family History
Nutrition
Salt, Salt and more Salt is a huge disservice to your myeloma condition and your heart. If you’ve never paid attention to the amount of sodium certain foods hold before, now is the time to take it in consideration. Limiting the amount of salt in your diet can be the right move in maintaining your myeloma and blood pressure. The intake of water holds a huge importance; However with that said too much water (believe it or not) can increase your pressure, which is why some patients are prescribed diuretics (water pills) along with HBP med to balance maintenance. Including a healthy portion of vegetable and fruits are encouraged, as well as limiting your alcohol intake.
Stress
This is always a factor with handling myeloma in general, but lowering the amount of stress in your life is suggested in lowering your pressure. If you feel like you’re heading to zone 10 with a piercing headache as well as pounding heart palpitations then that means it’s time to settle down. Some great stress relievers are yoga, exercise, sitting in a quiet dark room until you feel calmer.
Exercise
You may think how does doing exercise help bring my blood pressure down? Well believe it or not it’s about moderation and light exercise does the body and heart good when you achieve those goals at a pace that is sensible. Anything from light walking paced slowly around the block 2-3 times is a good and balanced start.
Family History/ Age
Well speaking from experience family history and age believe it not does play a factor in your spike in blood pressure. I’m not sure of the specifics considering there’s no real call out how one gets this disease, but these two play a factor. As long as you’re diligent being mindful of this and making gradual improved health changes then that is a key in heading in the right direction. Though this may be another thorn with dealing with myeloma now dealing with high blood pressure, but small changes as listed can make a huge difference in making a healthy you dealing with this affliction.
Heart disease is important to consider when faced with multiple myeloma, as there are so many direct consequences in one shape or another that can affect your heart; Now I understand why things such as getting blood pressure reads multiple times during treatment is necessary. The heart literally is our lifeline not to take for granted more so when taking meds to resolve other issues. As long as everyone on your team is up on monitoring your condition from all aspects it should be fine.

Ageism and Cancer

Cancer has a way of effecting chaos in anything it gets in contact with. It can also be said and witnessed that it does not discriminate in color or age. In this post I wanted to talk a bit about age and how anyone can be diagnosed with the cancer. There are 100,000 babies diagnosed with some form of cancer; The most commonly known are leukemia, brain, retinoblastoma (eye), and neuroblastoma (stomach). How can it be a that a child fresh and new has in some way been subjected to cancer so young? It’s so sad to hear stories whether your new to this earth or have lived a full life, you just may be affected with some form of cancer in your lifetime.

I recall some years back it was assumed if someone in your immediate family had cancer, you may be be predisposed as a hereditary trait, but the way it now shows this is no longer the thought. There are so many factors to consider besides hereditary traits:
Environment
Food
Water
Chemicals
Age

This post I wanted to just touch a bit on the age factor.

Children
Approximately 1 in 285 children in the U.S. will be diagnosed with cancer before the age of 20

*The National Children’s Cancer Society

Young Adults
The most common cancers among adolescents age 15-19 are Hodgkin lymphoma, thyroid carcinoma, brain and central nervous system and testicular germ cell tumors

 *The National Children’s Cancer Society

Adults
Most young adults from the ages of 20-39 are commonly affected with:
-Breast Cancer
-Leukemia
-Testicular Cancer
-Lymphoma
-Thyroid

To name a few.

* American Cancer Society
 
Seniors

Many in the senior sector are living longer and the amount of diseases are even more prevalent with later age. This is not to say everyone will have cancer at 60 or 70, but the toll of age related ailments may show form. For those in their mid 60’s it has been suggested that this age group is 10 times greater to show some form or cancer than younger patients.
Those cancers that show a strong association with mortality for this age group are:
-Prostate
-Uterine
-Pancreas
-Stomach
-Lung
-Rectum

Heart disease has been considered the leading cause of senior mortality, but now cancer has taken the lead in various forms.

Are there any true differences in care for those younger vs. older? Cancer treatment always reference to individual tolerance. We can’t say because you’re younger you have a better go with beating cancer, than someone in their 80’s. It’s really a toss up in getting a diagnosis early on, to gearing up for a proper treatment plan. Can you sustain the harsh medications, mental, and physical tolls? That is the real question for any age.

Unfortunately all ages can be affected from any chronic disease. Ageism and cancer is a very real reality.

 

Week 4 Challenge and Rev/ Dex/ Krypolis

Well I’ve completed my 21 day fitness challenge- didn’t have much time to give a day by day plan with the exception on IG posts -Yoliecooks.
It’s been some interesting few weeks, but happy to say I safely lost 5 lbs, and 4 more to go. This challenge has taught me that I don’t have to just go with the flow, but I can move towards a healthier eating regimen as well as workout. This challenge was more rewarding than when I normally workout at the gym… with that I’m proud of the results.

-Losing some of waist and stomach- states happiness on my part.

Healthy mindset is a must for those going through chronic conditions. The way to move ahead in making changes is towards your diet and getting some form of physical activity*.

*Always speak with your doctor when you want to go that route of physical activities in what should and should not be done, based on your individual situation.

Diet
My diet consisted of mindfulness– period!

It was refreshing to eat minimal and really pay attention on what I placed on the plate.
My regimen went a little like this:
Breakfast- (1 or another)
Smoothies (yogurt, fruits, and flaxseed)
Oatmeal and blueberries

Snacks- (1 or another)
Blueberry (under a cup)
Low fat Popcorn (under a cup)
Trisket crackers (4-5 crackers)

Dinner- (1 or another)
Less white rice and more brown rice- 1 small serving
Fresh vegetables
Salads
Fish or Chicken

It was fun to play around with the meals and record my eating schedule on the fridge.
Part of this challenge was a huge intake of water- which definitely did my body good.

More developments on the way :)

Y

2017- 21 Day Fitness Challenge.. With Dex/ Krypolis & Rev

Okay, so I’ve been displaying some of  my journey when it comes to fitness. My weight has been up and down for about a year now. I’m petite- so my normal weight was around 120lb before I started taking my myeloma cocktail. In 2016 after a horrible all goes wrong with a root canal earlier in the year- my weight dropped from 130lb (gained 10lbs) to 110lb…. it was that bad! Anyway, I recovered from that but found my weight was still leaning towards the danger zone for someone my height (5’3″).
I’m on a journey to change how we think our lives cannot change despite a chronic illness. I believe and have successfully pushed on my twitter the need to stay fit and healthy despite the situation- well aspiring towards a Fit trainer- I gotta look like I know what I’m talking about.

I’m taking part of a 21 Day Fitness Challenge and looking forward to sharing my journey with you.
Tomorrow is the day and I guess I’ll do more posting than I normally do.

Things to consider:

_I’m a fighter so I’m up for the challenge.
_I like to shop- I’m a fashion professional come on…. I like to look super cute in threads :)
_My journey is just that- Please note my Doctor is aware that I do include fitness in my schedule. ALWAYS go through your fitness journey with your doctor first.
_I recently was prescribed amlodipine… the lowest dose thanks to my intake of Krypolis.
_ Weight is a good thing- My team would rather I have some lbs rather lose, as these drugs can do their most, and we need all the nutrients we can get when combining (KRD)

Therefore, these to consider – I know not to push things if it gets too crazy.

Anyway, can’t wait to share my pics and results. Also to share my Yolie Cooks IG… coming soon.
I like to cook and take pics and I’ve been asked to show more- so 2017 I will supply.

Best


Health Advocate 101… For You

Okay, I’ve received a few call outs on some very important subjects in the war of Myeloma, and thought why not prepare a simple reference to be mindful, as you take on your new journey in fighting multiple myeloma…. or any ailment

Here are the top 3 for 2016
To tell the truth my time with Myeloma and handling other family health matters- I feel like I should sign up for a position as a Patient Advocate because there’s something to be said if you don’t speak up for the most important person in your life in this moment in time… and that is YOU!
101 A
Learn to Listen… Then Speak
Newbies- You”ll be bombarded with a lot of details about your present position. I’ve been there – it will be very overwhelming and at times frustrating.
Seasoned- I know it- you know the routine and want to get on with the technicalities. You’ve been through the routine with Social Workers, Oncologist, Nurses, Insurance Claims for a while now.
Well no matter if you’re new to this game or adjusted to the protocol- know this….
Learn to listen first then react. I know for some this is hard to do, at times I’ll jump in when the flow of conversation is happening between parties; However, what I’ve noticed is that you may tend to miss some important details while a doctor or nurse is giving that bit of details that may mean huge things in your treatment. Now that’s not to say you can’t ask these people to repeat it, but by listening the first time you can prepare to come back with a sharp reply to what they’ve just said, which just may pivotal in your journey. Basically this is basic communication 101- listen then speak – speak then listen. We get so caught up talking when someone is else is speaking we miss some important details, or details are repeated when other areas of the conversation are missed all together. Missing details on a myeloma diagnosis is not good!! Especially in today’s medical realm of getting a doctor for a good 10-15 minutes if you’re lucky. We have the time ensure we spend it reasonably and wisely when we get this doctor one on one. Now if your Oncologist doesn’t say much- well that’s unfortunate and may be time to seek someone who is a bit more involved, or in this case you may have to be the one to get the conversation going. The bottom line is the terminology and process is so complex and confusing, but by really tuning in and letting things process before reacting means a whole lot in the long run.
101 B
Be a Kind Nuisance
It’s funny… but they know me in my clinic… my whole team knows I don’t play that ^#%%@
I want to know:
-What are you doing?
-Why are you doing this this way today?
-Who said I have to do that?
-Who is this person?
-Uh Uh is that a new nurse?
Though we laugh about it, I’m in the know who my team is by name. Let’s face it if you see these people every week like myself, they should be like your second family to some degree. You want to nicely express what is going to work and what is not. I always tell them when it seems I’m a bit much with the questions- Look I’m an advocate for me. I know some of you may not have the strength to be bothered, but if you’re lucky that’s what your caregiver is there to help you with. Don’t just go with their flow… they must go with your flow!! Which leads to 101 C
101 C
Make sure They Know You Mean Business 
I’m not the one…. if you know me well you know that’s my signature statement. “You’re not the boss of me.” The only boss in this scenario is my Lord and Savior and Me- period! I take heed to 101 A,
but best to believe this is a partnership and if I’m not feeling what you’re handing me- then the conversation needs to be revisited. Take notes if your confused and come back to it later. I tell you you will get respected when you’re part of the team and fully involved in your treatment. At times you may have to be a bit strong, so they don’t forget about you- quite frankly. It’s human error I suppose, when the team is looking at hundreds of myeloma patients a day, they are not going to remember somethings about your situation…. unfortunately. Oftentimes, we can’t just lie back and let them handle it…. do you see how many times you have to give your name and date of birth to ensure they have the right person? It’s needed but very scary and detrimental if you’re given Dex that was supposed to be Krypolis…
Be alert and Safe my MM’s

Finally… Some Updates

Hi All,

I’m well and still kicking… Thank God!

I know it’s been awhile but I’ve been active on my twitter, so if not blogging I’ve been live on other forms of social media. I’ve been busy with life in general, whether work, forming businesses, Dr appts… it can be a bit taxing. Well one of the developments is forming a wellness training program for ….. you guessed it- people like me and possibly you. I’ve encountered a lot the last few years but through it all, I’ve been consistent with physical self. Now, what does that mean you ask? Well I’ve tried to stay fit and active to the best of my abilities. It’s not easy taking dex, rev,acyclovir, velcade… more recently carfilzomib. Quite frankly a lady gets tired and at times sluggish; However, I’ve worked out details to persevere despite the “sleepy syndrome” I like to call it. I really don’t know how I do the things I do, and how my body is still functioning as we’ve been through a lot together.

Ensuring my weight and physical activity is so important. You must be active in any shape of form possible with a chronic condition. When I was seeking a trainer a few years back, something told me this may not work, so I looked into how I can train as a trainer for those like me. What I mean by this is a trainer who is mindful and quite frankly understands my condition. When I first researched multiple myeloma through those sites with damning news basically estimated my time here on earth would be a wrap in 5 years. Well I’m happy and blessed to say I’m 8 years in. My condition is maintained, my numbers are remarkably going down… my latest m- spike is zero. Happy dance…. well not so fast, because again those side effects are real readers.
-Dabble with high blood pressure.
-Leg discomfort.
-Fatigue.
-Lesions on spine.
-Weight gain.. it’s usually the other way around but those steroids I suppose. I get the munchies every now and then but not for my weight to be ridiculous- so I’ll blame this on the steroids.
-Swollen hand joints that comes and goes…. crazy stuff.
-Neuropathy at thumb (I know crazy… but could be worst as I’ve heard the stories)- mine is not consistent it comes and goes.

Along with other minor things. I think many could relate to the few I have listed. Anyway, I say all this to say I needed someone to train me with all the stuff I go through at my level of the do’s and don’ts. It came to me in a vision… really it did. It came to me to study to become a fitness trainer or what I want to call wellness trainer with people with chronic conditions. I understand and know first hand as a mm client (if you will) what can and should not be done, that could cause damage or further issues. I’m young and like to look a particular way and basically stay active. I like the steps that I’m making where the future could bring me in helping many like myself. Well enough of that, as I still have some areas to study and so forth- but more details to follow I hope very soon.

On that note- I’ll end it here but I promise to post more often – my gosh it’s been a year.

Today is 9/28/2016 and I feel moderately well today.

Cheers!

Yolanda