Sequestration and What it Means for Cancer Patients

My wise, knowledgeable, and kind-hearted friend, The Savvy Sister, posted this information earlier in the week and I think it is too important not to pass along. As a cancer patient, my perspective is different some – maybe even different than yours. If you do not have cancer, you may not feel as strongly about this issue as I do. However, if you know someone with cancer – especially an older adult – they will likely be affected.

[Photo by Christiana Care]

The effects of sequestration on Medicare are very serious for cancer patients. According to an article in the Washington Post, as of April 1, funding to cancer clinics has been significantly reduced forcing some clinics to turn away patients. This consequence of sequestration was unanticipated, but that does not diminish it’s negative impact. According to the article:

Medications for seniors are usually covered under the optional Medicare Part D, which includes private insurance. But because cancer drugs must be administered by a physician, they are among a handful of pharmaceuticals paid for by Part B, which covers doctor visits and is subject to the sequester cut.

It’s not a matter of these clinics fearing they won’t make any profit or being heartless by turning away patients. It’s a matter of these clinics not being able to administer some of these drugs because the amount of funding they get from Medicare for the drugs is less than what it costs to purchase them. It’s simple arithmetic.

Cancer medicines are incredibly expensive…and yet, the are extremely necessary. The Rituxan drug I receive every eight weeks costs more than $9,000 per treatment. My firstline treatment of Bendamustine + Rituxan ran more than $23,000 per treatment.

So, what are Medicare patients doing? If their clinic is not able to treat them anymore, they are now forced to go to hospitals to receive their treatment. This is not the worst thing in the world, however, there are problems with it:

1. The hospitals are going to reach max capacity in treating patients.
2. The cost of hospital cancer treatments can often exceed the cost of treatment in a private cancer clinic – and these extra costs will most certainly be felt by the Medicare patient.
3. The hospitals may not be as convenient as the clinic where the patient currently goes. And let’s not forget the emotional toll of having to switch treatment centers mid-stream.

To someone who does not have cancer, switching treatment facilities might not seem like a big deal. But when you’ve developed relationships with the doctors and nurses who are treating you – when you’ve developed that trust relationship – leaving them would be hard. They are part of your survival support team. Leaving them and starting over with a new team can be traumatic – for patients who have already experienced enough emotional and physical trauma.

We have a lot of problems in this country when it comes to healthcare (we also have a lot of good things like great doctors and nurses and excellent medical facilities). Some of these issues will take time to fix well, but this is one issue that needs to be corrected now.

What can you do about this? Sign this petition. We need 100,000 signatures by April 27. Will you be one?

And let me lastly say, I’m not here to debate or argue politics. Everyone is entitled to their opinion and, as a cancer patient, I have a strong one on this issue. :) But I think we can all agree that no matter what our views are, we all want the very best care for 1) all cancer patients and 2) our senior adults.

Thank you for reading and for signing the petition (if you choose to do so). :)

Blessings,
♥Rachel

Feel Good Friday: Great Stats & Toddler Steals the Show

I’ve got two – count ‘em, TWO – pieces of Feel Good Friday material for you today. Bonus! {grin}

First up is the Cancer Statistics, 2013 report released by the American Cancer Society yesterday stating the rate of people dying from cancer has declined 20% overall (24% for men; 16% for women) from its highest point in 1991. Amen and amen!

This is not to say there still are not too many people dying from cancer because one cancer death is one too many, but this is progress and that’s what we need. The American Cancer Society estimates there will be 1,660,290 new cancer cases and 580,350 deaths from cancer in the United States in 2013. Way too many, but significantly less than 20 years ago and that is definitely something to feel good about. More details about the report can be found here.

Secondly, I’ve got a video for you that my sister sent to me this week. A musician was performing New Year’s Eve and his toddler son decided to join him on stage. This little guy has some serious moves! {I have no rhythm, so it’s pretty impressive to me that he can shake his little diaper-clad booty this well.} What a cutie!

{If you are reading this in email,
you may need to click over to the blog to watch the video.}

–
Blessings!
♥Rachel

Navigating Your Cancer Treatment: Andrew Griffith

If you are dealing with cancer, there is no such thing as too much good information. Please note the my use of the word “good.” There is plenty of information available to us online that is not good, but the good stuff – that’s gold.

I’d like to introduce you to online friend and author of some good stuff. His name is Andrew Griffith, and his latest position was as the Director General of Citizenship and Multiculturalism Branch at the Department of Citizenship and Immigration Canada.

He also happens to be a mantle cell lymphoma patient who was initially diagnosed in 2009 and relapsed in 2011.

Andrew blogs about his experience at My Lymphoma Journey. If you are a cancer patient, this blog will be an excellent resource for you because what you will find is a first-person account of someone walking through cancer. Your cancer and treatment plans may be different, but many of the emotions and experiences Andrew talks about are universal. His blog is full of experience that he shares in a unique and incredibly meaningful way, hitting not just the surface level details of his treatment, but also providing personal reflections on this trial.

In addition, Andrew has written numerous articles for other cancer resource sites, such as the MD Anderson CancerWise online publication, KevinMD, and Cancer Knowledge Network. One recent article, Tips on Navigating Cancer, provides valuable information for any cancer patient, but especially those just starting out on the journey. One of the things Andrew recommends, and I whole-heartedly agree with, is to come to your appointments prepared. Do your research, come with written questions, and understand your “file” – your medical records, reports, and such. You are responsible for you.

Andrew recently authored a book, Living with Cancer, A Journey, available at Amazon, iBookstore (media-rich edition), and Kobo. A hard copy version is available at Lulu.

The Kindle edition is a bargain at $3.99 because amid the 300+ pages are the heart and soul of a cancer patient who takes his treatment seriously, but living life even more so. If you want to  know what a cancer patient thinks or feels, read this book. If you want to know what the treatment experience is like, especially one that involves stem cell transplants, read this book. If you want to know good book or movie recommendations, read this book because he includes those as well! :)

I think you will find Andrew’s blog and book, both, valuable resources, well-written, and deeply thoughtful. You can also follow Andrew on Twitter where he posts links to quality cancer and healthcare related articles.

Blessings!
♥Rachel

Survivorship is a State of Mind

We are headed to see Dr. Daniel this morning followed by my maintenance treatment. Seriously . . . time really does fly. Has it really been 8 weeks? Is this what happens with age??

The mind is an amazing machine. When I was first diagnosed, I assumed my first thought every day would be of cancer. The farther I move away from that day, the easier it is to forget and I really love that.

Yet, every eight weeks – no matter what – I am reminded I am a cancer patient. I go to the cancer clinic to see the oncologist and then sit down for several hours of chemotherapy. Hard to ignore that reality, right?

In the days leading up to treatment, I find myself gravitating toward articles, quotes, and inspiration related to cancer. I came across the following earlier this week {yes, on Pinterest} and it just grabbed me. I sat there reading and re-reading as it sunk in.

Survivorship is a state of mind and healing can come without curing.

Talk about some truth! Being a cancer survivor is as much a state of mind as it is a condition of the body – if not more so. You might be cured, but if your mind is stuck in “I have cancer” mode, you are not surviving – you’re existing. In my situation, my body is not yet cured, but as time passes and I learn to rely on God for all of my strength – my soul has begun to heal from the shock of having cancer.

And that makes me happy.

Have a wonderful day!
♥ Rachel

The Bitter Seed

I sat there wondering — if bitterness took root in my heart, would I recognize it?

I had just finished reading about Esau in Genesis 25. Esau was a bitter guy. Many of us might even think, rightfully so. His bitterness was easy to recognize as I read the story of his life.

Esau and Jacob were twins born to Isaac and Rebekah. Esau was delivered first, making him the eldest son. Many benefits came with being the oldest child – a larger percentage of the inheritance, the privilege and responsibility of becoming the family’s leader some day, and the honor that came with the birthright of the first born.

One day when Esau had come in from hunting and was very hungry, Jacob convinced Esau to hand over his birthright in exchange for a bowl of stew. {Seems like a pretty uneven trade to me, but hey – when I’m hungry, I can do crazy things, too!} Many years later, when Isaac was old and dying, he planned to restore Esau’s birthright to him through a blessing. When Rebekah and Jacob found out, they tricked Isaac and he actually blessed Jacob with the birthright, instead.

While we may feel sorry for Esau because it seemed he was taken advantage of {and he was}, he also made many bad choices throughout his life that only compounded his difficulties. His decisions were likely influenced by bitterness.

Most of us have had experiences that could have or did make us bitter. Carston Wrosch writes:

Bitterness follows unwanted experiences—failures, disappointment, setbacks—that are perceived to be beyond one’s control.

Have you ever had something negative happen to you that you believed to be beyond your control? Right now, cancer is at the top of my could-make-me-bitter list. Didn’t ask for it, didn’t want it, don’t like it. Most people wouldn’t blame me for feeling bitter.

Bitterness is a sneaky emotion that can be especially insidious for cancer patients as we ask the questions why me? why this? why now? This can be especially true when we look around us to see our friends continuing on with their good, healthy lives. It is then that we can begin to feel the first taste of bitterness.

It’s taste is comforting at first. The self-pity that is at the heart of all bitterness is an old, familiar friend. We allow it to stay for a few days, and before we know it – Ms. Bitter has moved all of her belongings in for a long stay. The reach of bitterness is broad. It rarely stops by affecting the wounded or offended person, but spreads to many who come in contact with the bitter person.

Watch out that no poisonous root of bitterness grows up to trouble you, corrupting many. – Hebrews 12:15

I could be bitter about this cancer experience, but by doing so I would be compounding my problems. A bitter heart dwells on the negative. A bitter spirit constantly complains. A bitter soul ignores God’s blessings. Allowing bitterness to take root in my heart takes more from my life than cancer ever will – it takes away my ability to be thankful.

Maybe your experience is not cancer. Maybe it’s infertility or job loss or some other painful, unfair experience. Stay alert to the seeds of bitterness and don’t let them take root. Focus on the good in your life and don’t give in to the bad. The situation may feel out of your control, but choosing to not become bitter is completely within your control.

Happy Monday! Make it a good one!
♥ Rachel

9

Faith and Hard Questions

I’m reading “Wednesdays Were Pretty Normal: A boy, cancer, and God” by Michael Kelley and it’s got me underlining something on almost every single page. This book interested me because I wanted to see how a parent of a child with cancer wrestles with his belief in a good, loving, and benevolent God, while also accepting that this same God would allow his son to suffer. I thought it would be a good book. I didn’t expect it to be this good.

There such a tenuous thread that separates the two ideas of God in our minds, yet there really is no separation of the two – God is God. And He’s good. He was willing to sacrifice His own son for the greater good of saving us – unworthy sinners. So, why wouldn’t He allow suffering on our part if it means fulfilling a greater purpose?

This is what Michael said about some of the questions he had about faith early in the process of his son’s treatment for cancer.

What is faith? What does it mean to believe? Up to that point part of me had implicitly defined faith more in terms of what it is not rather than what it is. So for me, faith was not doubting. It was the absence of questions. It was following obediently without hesitation. You see the obvious problem as clearly as I did. That definition of faith works great as long as everyone’s healthy, there’s plenty of money in the bank, and the cars are running. But if faith is the absence of doubt, where does that leave you when all you have is doubt? If faith is not asking the questions, then where does that leave you when all you have is questions? If faith is absolute certainty, then where does that leave you when nothing is certain anymore?

Lots of truth there. We usually don’t have any difficulty believing, trusting, and praising God with all the faith in our soul when life is going smoothly. But when we hit that first bump, encounter a roadblock, or come to a crashing halt – our faith can grow a little thin and frayed on the edges.

I don’t question God very much. I don’t know why – maybe I think it’s disrespectful to question someone as powerful as God. I also think that’s just my personality – I don’t question a lot of things. I like to take people at their word and am not an incredibly inquisitive person. So, it makes me uncomfortable sometimes, to even think of questioning God – of asking Him WHY He would allow something, WHY he would not remove a disease or prevent a tragedy from happening. I just accept. I may not like it, but I accept.

That’s how I reacted when I first received my cancer diagnosis. I didn’t question God and ask Him why? I just accepted that it is what it is. But way down deep in my soul, there are stirrings of questions. I usually try to squash them down because {for some insane reason} I want to hide them from God. I don’t want Him to know that I have questions about His decisions.

I’m learning, though, that our God is big enough to handle my questions. And if I would get brave enough to reveal them to Him {as if He doesn’t already know what they are!}, I think He would teach me some interesting things. I’m going to work on that.

Enjoy this last day of August and hopefully a long holiday weekend!
♥ Rachel

Patty, This FROG’s For You

As a follow up to yesterday’s post on turning complaints into gratitude, I had to follow my own advice while waiting at the dentist’s office yesterday afternoon. It’s not unusual to wait 15 minutes or more past the appointment time before getting called back. I texted Barry something like “I should always give them an extra 15 minutes before arriving because they’re never on time.” I felt convicted by the complaint and quickly texted him again to say “But I’m not complaining. Just glad I have teeth to clean!”  haha!!  It’s all in how you look at it, right?

source: pinterest

I recently learned the mother of one of my good friends has been diagnosed with a moderate to aggressive form of b-cell non-hodgkin’s lymphoma. She actually began treatment yesterday and will complete six cycles over the next 18 weeks. I hate this so much for Mrs. Bishop, for Patty, and for the rest of their family.

I began thinking about how it felt back when I was in their shoes, back when there was mountains of uncertainty, followed by a heart-stopping confirmation, followed by treatment discussions and treatment itself. So much information thrown at you, so many new realities to process, and one-thousand-four-hundred-eighty-seven emotions to go along with all of it.

When you are diagnosed with cancer, it only takes a few tests and some words from your doctor to forever change your life. Time is now marked by BC (before cancer) and AC (after cancer). The Earth literally feels different beneath your feet. What you knew to be familiar and true and sure no longer is. And this is true not only for the cancer patient, but for those who love and care for that person.

At times like this, it is important to remember FROG: Fully Rely on God (thanks to my sweet friend, Becky, for passing that little nugget along). If we fully rely on God, we will find peace in the midst of the most terrifying and challenging circumstances. If we fully rely on God, we will be able to rest in the knowledge that He’s got this. If we fully rely on God, we can face the good days and the bad with the same calm spirit.

How do we fully rely on God? We believe. We trust. We have faith. We hope. We relax. Ok, so the relaxing thing might be a stretch, but the others are very doable! :) We remind ourselves of His promises and then we take Him at His Word.

God promises that He is always with us. And surely I am with you always, to the very end of the age. – Matthew 28:20

God promises to be faithful. The one who calls you is faithful, and he will do it. – 1 Thessalonians 5:24

God promises to give us everything we need. And my God will meet all your needs according to the riches of his glory in Christ Jesus. – Philippians 4:19

WE KNOW that God is always with us. Even beyond that, we know that God is always good. AND God is faithful and will do what He says.

Patty nor her mom feel prepared for this new challenge; however, God has prepared them both for this day by surrounding them with family and friends to love and support them.

Please join me in praying for Patty and her mom, Mrs. Margaret Bishop.
♥ Rachel

Other Patients Teach Me About Perspective

The past seven weeks have been tough.  I’m not typically a complainer {at least I don’t think I am!}, but the list of pains and issues that are have been bothering me the past two months is growing . . . and wearing me down physically and mentally.  Truthfully, I feel worse over-all now than I did most of the time I was going through my primary treatment.  If I haven’t been complaining verbally, I’ve been complaining a ton in my thoughts.

I’ve been feeling pretty sorry for myself the past few days.  After almost two months of constant pain of varying degrees, I’m desperate for relief.  I’m also having hot flashes that wake me up several times each night {which is quite amazing considering I am usually a rock hard sleeper}, a dull ache on the lower left side of my back, and fatigue, plus some other little issues – but those are all minor compared to the headaches & neck pain.

So I prepared my list of symptoms for Dr. D (ranked in order of frequency and severity {grin}).  I really wanted him to understand how icky I feel.  Because no one feels as icky as I do.  {Yeah, right!}

On treatment days, we get to spend a little time in the lobby waiting for labs, waiting to see Dr. D, and then waiting to be called for treatment.  Yeah, we do a lot of waiting.  Today, as God would have it, I saw the following while we sat there:

• A precious elderly man shuffling in with a walker in front of him and dragging his left leg beside him because he could barely pick it up.
• A thin, frail, middle-aged woman with pale skin, looking tired and wearing her pink cap and pink pajamas.
• A man arriving for his first day of chemotherapy, looking a little unsure of what to do and probably wondering how he got to this place.
• Another older gentleman who asked the nurses repeatedly how long his treatment would take.  We learned that he has a recurrence of cancer AND has recently been diagnosed with advanced Alzheimer’s.

And I have the nerve to complain!  I was possibly {likely} the healthiest patient in the room!  All it takes is a little dose of perspective to change how you view your current situation.  There is ALWAYS someone struggling more, facing greater challenges, and dealing with more pain than me.  Always.

I did review all my “issues” with Dr. D and we talked at length about options, things we can do, things to consider, and possible next steps.  First, I’ll have the C-spine MRI on Monday and we’ll go from there.  He’s not super concerned about the low back pain yet.  I had a good scan in June and I’ll have another one in October.  If the pain gets worse or I develop other symptoms, we might do one sooner.

As for the hot flashes, well, I can thank Treanda {one of my first chemo drugs} for those.  Funny, as I sit here typing this, I just got one!  So not fun.  :)  I have a couple of options for dealing with them, but my priority right now is getting the headaches and neck pain under control.

And that’s it for now.  I’m going to go chill out and think about all the good things in my life, because there are many

♥ Rachel

An Interview with a Bone Marrow Donor – Alexis Wismer

I am absolutely thrilled to be able to share this interview with you today!  A sweet friend, Alexis Wismer, saved someone’s life less than two years ago!  She became a bone marrow donor and was kind enough to answer some questions for us about her experience.

Alexis is one of the nicest people I’ve ever met, so it was no surprise to learn that she had been a donor.  The surprising part was learning about it after the fact because she kept it so quiet as to not draw attention to herself.  :)

This is Alexis with two of her very special little friends, Drew and Tess.

Have you ever wondered who needs bone marrow donations?  Patients with blood cancers such as leukemia and lymphoma, sickle cell, or other life-threatening diseases such as PNH depend on bone marrow donors for life-saving gifts.  The donor needs to be a genetic match, which makes it challenging to find just the right match for each patient – making it all the more important to get as many people on the registry as possible.

At some point in my (hopefully distant) future, it’s possible, as a lymphoma patient,  I might need a bone marrow transplant.  My friend, Dolly’s daughter, Kellie, received a bone marrow transplant from her brother, Kevin five years ago – saving her life.

Bone marrow donation is a critical, life-saving gift that many are eligible to give.  The registration process is fairly simple, and as we’ll learn from Alexis, the donation process was not that difficult, either.  I hope this interview with Alexis will answer some of the questions you might have and motivate you to sign up to become a donor!

Thanks for taking the time to answer these important questions, Alexis!

R: Why did you decide to sign up for the bone marrow donor registry?

Alexis: I was in grad school at Georgia Tech and was spending a day shadowing an alumni of my program at the Children’s Hospital and they were running a bone marrow registry drive that day. We both signed up…

R: Was signing up difficult?  What did the process involve?

Alexis: It only took about 5-10 minutes. There was a little card to fill out with contact info and then the cheek swab. That’s it! (There is a even a mail order registry kit online http://marrow.org/Join/Join_Now/Join_Now.aspx)

R: How long were you on the registry before you received notification of a potential match?

Alexis: Probably 3-4 years

R: When were you notified of a potential match?

Alexis: February 2010.

R: Do you know anything about your recipient?  Have you ever met or talked to him/her?

Alexis: Other than knowing she is a female in her 60’s. (If I’m remembering correctly, she is out of the country which prohibits further information from being disclosed.)

R: Did you have to go through additional testing to determine if you were a good match for the recipient?  Can you explain what that involved?

Alexis: There were a few blood tests and a day of getting checked out by lots of different doctors, but they coordinate and handle all the details. You just show up. Since I had to travel to Emory in ATL, they even put me up in a hotel the night before since my appt was in the morning.

R: Once they determined you were a match, tell us about the process?  How long did it take?  What kind of pre-donation steps did you have to take?

Alexis: It moved pretty quickly once the first blood test confirmed I was a match. I had a full day of doctor’s appts and then a couple weeks later started the four days of injections to boost my bone marrow and then I spent a day in Atlanta for the actual procedure.

R: What was the actual marrow donation process like?  Can you explain to us how it works now as I think the process has changed through the years.

Alexis: They did not have to drill into my hip so it actually wasn’t very painful! They are now using peripheral blood stem cell (PBSC) donation, which is non-surgical, in most cases. According to the bone marrow registry “There can be uncomfortable but short-lived side effects of donating PBSC. Due to taking a drug called filgrastim for five days leading up to donation, PBSC donors may have headaches, joint or muscle aches, or fatigue. PBSC donors are typically back to their normal routine in one to two days.”

I never had much pain leading up to it. You are hooked up to machine for about 4 hours where they take blood out of one arm, run it through a machine to separate out the stem cells and then put it back in your other arm. It started to get a little uncomfortable at the end with the big needles in your arms (and you obviously can’t move really). But I drove home from Atlanta that afternoon and was back at work the next morning.

R: Was the donation procedure painful?

Alexis: Not really. Just a little uncomfortable. :)

R: Do you hope to meet the person who received your donation?

Alexis: It would be nice, but I think given the restrictions with out of country donations, the chances of it actually happening are slim to none.

R: Would you do it again for this person or someone else, if necessary?

Alexis: Yes!

R: What would say to anyone considering signing up for the bone marrow registry?

Alexis: It takes about 5 minutes to just sign up and you never know whom you might be a match for. And even once you are match, they continually give you the option stop at any point in the process if you change your mind and don’t want to go through with the donation. They don’t pressure you at all.

The following shows a timeline of how things progressed once Alexis was notified she was a match thru the date of her donation:

February 1: Email (and I’m sure a phone call, too) notifying me that I was a potential match.
February 2: Health History & Consent Forms
February 8: Blood drawn
April 30: Email notifying me I am a match for the recipient
May 14: Physical Exam in Atlanta – lab, xrays, ekg
May 26: LabCorp
June 3: First Injection (in Atlanta)
June 4: Second Injection (at home)
June 5: Third Injection (at home)
June 6: Fourth Injection (at home)
June 7: Bone Marrow Donation

To learn more or sign up to be a bone marrow donor, visit The National Marrow Donor Program.

Promise me you’ll consider becoming a donor.  Be The One to Save a Life!
♥ Rachel

Thank You Is Not Enough

On August 10, 2011, I typed out a little update about my first day of chemo and clicked the Publish button.  The idea was that I would use this blog to keep family and friends updated on my treatment progress and experience.  What I discovered in the process of posting updates is that I was actually having fun.

Wait.  How can that be?  Who has fun during treatment for cancer??

Well, I guess me, because I’m a little weird like that.  {grin}

source: pinterest

Through this blog, you give me something to look forward to every day – something to focus on beyond myself and my current circumstances.  This has become an outlet for me.  It forces me to look for the good – the blessings in disguise – during a period of my life when I could easily dwell on the bad.

I enjoy writing and had forgotten that part of my heart.  Through cancer, God gave that back to me.  And you spur me along with your encouragement and prayers.  Never, EVER underestimate your power to influence, encourage, and support someone.  I have experienced the goodness that is within you and I am grateful!

I don’t know everything (and I hope I never come across as someone who does).  I am learning and growing and (hopefully) becoming a better woman right along side each of you.  I appreciate that you let me into your world and allow me to chat with you.

So, 266 posts later, my life has been blessed in the sweetest ways because of YOU.  Thank you!

************************

If you haven’t entered the drawing for two copies of Lysa TerKeurst’s new book, Unglued, be sure to check out yesterday’s post and enter!  The book is about learning how to make wise choices when faced with raw emotions.  I think we’ve all been there, haven’t we??  (Some weeks, I go there daily {sigh} . . .  So don’t forget to enter.  Go do it.  Now!  :)

Happy Friday!!
♥ Rachel