cancer

Sometimes the grass is greener because it’s fake.

Posted on by austinnme7589

I haven’t written in a few weeks. It’s been harder than normal to find positivity in my life lately, which made writing cathartic for me but caustic to read. I’m still dealing with a lot of unresolved anger and grief over my condition and I have to work with the fact that some days are truly harder than others, physically speaking. All told, it’s lead to some dark days that were hard to get through. Thank god for my amazing family. Without my parents and my husband, I honestly think I would have lost my mind.

Since I last wrote, a lot has happened. My health has continued to deteriorate, my workload at work has only increased, and some of the worst news ever happened. One of my oldest, dearest friends got diagnosed with Acute Myelogenous Leukemia (AML). Being that him and I both turn 30 this year, and that AML is one of the eventualities that my doctors are trying my condition from progressing into, this just hit hard. AML is extremely rapid in developing and hard to get rid of. You also require a bone marrow transplant to achieve a true cure. So now, my best friend and I are on the walking similar paths to a bone marrow transplant together.

Trying to be positive for both of us is a struggle some days, when I just want to shout at the world ‘FUCK CANCER!‘ But I can’t. Because apparently, screaming and ranting in the middle of work gets you some odd looks. And possibly a one way trip to a long stay in the psychiatry ward of the hospital. Which is fine, but that isn’t what I want right now. Right now, I want to stay curled up on my bed, with my dog laying near me and listening to music. It’s stress-free, my husband comes to check on me every thirty minutes, and I feel warm, loved, and safe. My world feels pretty normal, if a little fuzzy.

If I move from my bed, it’s like someone hit ‘play’ on my life and all of the pain, fatigue, hair loss, frustration, and more come into focus with a startling clarity. And it’s incredibly overwhelming. Combined with the workload at the office, my emotional fabric has been looking pretty shoddy lately to be honest. As the fabulous Jonathan Van Ness once said, : ‘I

Queer Eye: More than Makeovers

The side effects of my condition have been worsening. My hair is starting to thin out en mass, so taking a shower is fun. So is just living, as I shed over everything, like I’m a cat. My bone pain has been more intense lately and my feet and hands have started swelling/retaining water. The oral chemotherapy is causing massive cystic acne breakouts on my face, neck, back, and scalp. That shit is painful! I hate it because wearing makeup makes it worse, and I’ve spent over $1000 on products meant to help control it, and nothing works. My fatigue is so bad that is making it so I can’t sleep. I’m literally over tired, so I’m averaging roughly 4 hours a night. My appetite is taking a hit lately too, so I’m not really eating right.

And so it’s back to the doctors with more appointments, and more tests, and more blood work. I am so fucking sick and tired of being sick and tired. Though, on the plus side, I have been fully approved for a Stem Cell Transplant, and I have 9 FULL MATCHES!!! That’s incredibly amazing and uplifting, as it means I have fantastic options for the Stem Cell Transplant. I have to get a bone marrow biopsy in the upcoming days before I meet with the transplant doctor again to talk about scheduling. So while there is a light at the end of the tunnel, there’s still a lot to go through.

And so it’s back to the doctors with more appointments, and more tests, and more blood work. I am so fucking sick and tired of being sick and tired. Though, on the plus side, I have been fully approved for a Stem Cell Transplant, and I have 9 FULL MATCHES!!! That’s incredibly amazing and uplifting, as it means I have fantastic options for the Stem Cell Transplant. I have to get a bone marrow biopsy in the upcoming days before I meet with the transplant doctor again to talk about scheduling. So while there is a light at the end of the tunnel, there’s still a lot to go through. But I have a goal to work towards! I will beat this, and I have a fabulous support system. Things are bad some days, but I can deal with the bad days to get to the good days. Because that’s what worth it. Those are the ones worth living for. That’s what the best songs are written about.

So bring on the music.

Riding the Struggle Bus

Posted on by austinnme7589

This week has been an absolute bear to get through. Between back-to-back meetings at work and multiple changes in weather that impact my bone pain and increased fatigue, I am absolutely riding the Struggle Bus on my way to the Fail Boat. I feel like every morning I am going to wake up to a horn honking outside of my window and my husband will say, ‘Oh babe, your ride is here.’ When I look out the window, there it will be in all of its yellow glory:

Even with an increased workload and dealing with the bone pain, I have been able to manage. But the biggest challenge this week has definitely been the fatigue. My tired is tired. I monitor my sleep patterns using a Fitbit, and it has been incredibly frustrating to see that I have ‘slept’ for 8-9 hours each night this week, but due to restless periods, time awake, and the fact that I have difficulties actually get deep, restorative sleep, I’m actually only averaging about 4 hours of sleep a night. And this has been going on for over a year.

I have been dealing for a while with increased caffeine intake, but even that has stopped working now. And that’s irritating because I still have things that need to get done. Life doesn’t stop just because you need sleep, you’re sick, or your body is slowly giving up the ghost. I think the bags under my eyes have become full on luggage sets now. And the fatigue is all-encompassing. It’s not just the need of sleep. Tiredness is due to lack of sleep. Fatigue involves difficulty concentrating, anxiety, decrease in stamina/energy, difficulty sleeping, and increased sensitivity to light. There are many other things that are affected by true fatigue, but these are just some of the big ones. And these affect all areas of your life. Concentrating on anything is difficult. Basic math, finding words, comprehending what you are reading, etc. All of that is affected so it makes working a million times harder. Lack of energy makes it difficult to exercise, move around, visit with friends, and more. And difficulty sleeping just means that no matter how much or how often I sleep, it does nothing to resolve the issues.

So what is a person to do? How do they deal with something that is so physically, mentally and emotionally draining? Obviously, my first go to is sleep. Even though I never wake feeling refreshed and mostly wake up still feeling tired, at least I can continue to function throughout basic tasks. Next, music is a must have for me. It can help me stay awake during times when I am driving, give me a bit of energy (you know you rock out to your favorite song when it comes on the radio), and it makes my mood better because I love it.

The third thing I do is rely on equal amounts of caffeine and water. Water is incredibly important to make sure you are hydrated, as dehydration can only lead to an increased feeling of fatigue. But caffeine is my life-blood and if I could get it in an IV, I would. I would mainline that stuff like it was my job, no lie. I’d have like 18 IVs going at once – things would be crazy). Fourth, I make sure to keep a great sense of humor. It helps when I yawn in the middle of a meeting and someone can’t stop from making a comment. Humor diffuses tension and it also is a great release for people to laugh. It also helps me retain a positive attitude.

Lastly, I find some low-impact hobbies to fill my time and keep me entertained when I don’t have energy to go out, but still want to visit with friends or family, or even just be by myself. I am a huge proponent for movie or board game nights. They don’t require a ton of energy and they are fun! Plus, with the right company, it’s worth everything. Reading in my spare time, painting, or catching up on TV shows helps me not feel bored. Boredom can be the enemy when you have no energy, because its an easy slide into depression when you remember that you can’t do everything that you used to be able to.

These actions can help on days when fatigue hits hard. Also, being open and honest about when you are struggling helps. It’s not always easy, as I well know, but asking for help is not a weakness. Admitting that you are struggling due to fatigue or pain can end up helping you in ways you didn’t expect, whether it’s at work, at home, or out with friends. Remember, struggling doesn’t mean you are failing. It means you are trying to the best of your ability, but something just isn’t working. Asking for assistance can only help us in the long run, as people can’t offer help when they don’t know it is needed. We all succeed when we realize we aren’t alone.

My thoughts are stars I can’t fathom into constellations

Posted on by austinnme7589

In the last few weeks, after even more doctors appointments, I have been approved for a Stem Cell Transplant (SCT). I am equal parts happy and terrified. Happy, because a SCT could save my life. I have the chance to get better and live beyond 35 years old. Terrified, because I could die before I hit 31 if the procedure doesn’t go right.

As with any major surgery, or medical decision, my thoughts are all over the map, and my emotional fabric is wearing thin. Some days, I think I have it all together, and I can make decisions. Other days, I can’t even decide if I want to eat breakfast or not. The struggle is real my friends. When I am willing to make decisions, I am getting my affairs in order. It’s completely bizarre to me to be taking some of these actions. No class in high school or college ever taught me how to write out my will, or why it was important. No one ever told me what personal accounts need to be closed in the case of my death, or what website accounts like Facebook or LinkedIn need to be closed. Did you know that your student loans are forgiven in the US when you die? As long as you don’t have a co-signer and you submit a copy of the death certificate, the loans are forgiven. At least that’s one relief.

All of these actions are being done proactively, just in case something goes wrong, because no one told me that this was something I would ever have to prepare for. I am working on maintaining a positive attitude, but when you are told you have terminal cancer, it shakes you to your very core. Because even with the potential of a SCT that will make me better, I still have a long road to recovery afterwards. And there will be things I cannot do and will not have the strength to worry about, like making sure bills are paid on time. Or making sure my dog gets groomed. But no one ever told me how to make sure these things are taken care of, and they should have, because these issues will affect everyone at some point in their life.

So I am going to give you some life tips that I have learned recently and some links to great resources that I have found helpful in organizing my life, and making it easier on family, friends, loved ones, and most importantly, myself. These tips are helpful to everyone, not just those in a dire situation.

  • First, go to RocketLawyer.com and complete a Living Will, Power of Attorney and Last Will and Testament. You can get a couple of free documents from them during a free trial, and their tool walks you through how to complete one accurately for your state. Once complete, you only have to print the document and sign it in front of a notary for it to be legal.
  • Second, get the journal I’m Dead, Now What? from Amazon.com. This will help you organize things in your life for important events, beyond death, such as where to find copies of your marriage license, divorce papers, etc., as well as lists of accounts you have for social media, and personal accounts like LifeLock. This journal can then be referenced by friends or family members who know of it’s existence if you are ever unable to make choices for yourself – such as a bad car accident, you are in a coma, you cannot speak, etc.
  • Third, enroll in Long-Term Disability benefits from your company if they are offered. Often times, we don’t think about the worst case scenario ever applying to us until it happens. Then when we need the coverage, it isn’t there because we never thought it could happen. It may cost you a little extra per pay period, but it’s worth it if you ever have to take more than 6 months off of work (this applies only to my friends in the US.)
  • Fourth, enroll in a 401k or IRA whether its through your work or through a company like Fidelity. These accounts make it super easy to save money for retirement, and the money can also come in handy in the event of your death. Some companies offer 401Ks and will offer a company match donation to the account of a certain percentage. TAKE ADVANTAGE OF IT FROM DAY ONE! No one ever told me this until I asked my mom, but I am set up to have a lot in retirement, or to make it so my husband doesn’t have to work for a long while in the event of my death.
  • Fifth, make sure you understand what your health insurance covers! Knowing what your insurance covers will help you anytime you need to fill a prescription, go to the doctor, go to the emergency room and more. Knowing who to contact regarding your benefits is also helpful when you have questions. Remember, asking questions can only help you, and it will save you money in the long run!
  • Finally, invest in life insurance. Some companies will offer it to employees for an additional fee, so take advantage of it if you can. Otherwise, you can buy it through companies like AARP, Aflac, and more. This can help your family when you have passed away, because it can pay for costs that crop up quickly, such as funeral costs, paying off a mortgage, ensuring a car is paid off, and more.

Having some of these tidbits of knowledge changed my life. They helped me organize my paperwork, ensure that my wants and needs are met in case I cannot make the choice myself, and I was able to communicate the information to my family in a clear way. I am also set up financially for the worst case scenario. As I am a planner, this has relieved a lot of stress from my mind and has allowed me to feel a little less discombobulated.

I’m still dealing with the emotional side of a terminal diagnosis, and how that affects my work, my relationships and my life, but having some plans helps me cope. It gives me a sense of control in an otherwise uncontrollable situation. The emotions are a lot harder to deal with and they effect the mental side a lot, but by having a plan in place for certain things, it means there is less for me to worry and stress over. I am able to fully focus on me and my health, which in turn can only allow me to keep a positive attitude for the journey ahead.

A Four-Month Roller-Coaster Ride

Posted on by austinnme7589

If I am really being honest, my roller-coaster ride began in July of 2018. I was working incredibly long hours (up to 18 hours a day!) doing a technical system implementation that was thus far the highlight of my career, as it would affect 7,500+ employees globally. I was mainlining caffeine like it was water, sleeping for around 4 hours a night, and eating any sugar I could get my hands on to get me through the afternoon slumps. But it all paid off. The system implementation went off without a hitch, my executives were pleased as punch, I received some accolades at work, and my resume had some new additions. Things were coming up roses for me.

But as I came off of the high of a success, I figured that I probably shouldn’t be frequenting Starbucks so often that all the baristas knew me by name, and that sleeping should happen wayyyy more often than I was currently doing. So with no major projects on the horizon, I started weaning myself off of caffeine and sugar with the intent of sleeping more at night. As this happened, I went through the normal withdrawals, so I knew that headaches, shakes and lightheadedness was to be expected. Blood sugar drops happened too and I got Hangry when I missed a meal!

As the days of July faded into August, I noticed that while I had given up most of the coffee (from 3 Venti’s a day to 1 Grande – yay for progress!) and I had cut out sugar almost completely, I still wasn’t sleeping. I was averaging about 4 1/2 hours per night still, but now I was waking up with night sweats. Without the caffeine and sugar, I was feeling super lethargic and I noticed that I didn’t always have a great appetite. But I attributed it all to just trying to ease back into a “normal” life after a system implementation that had taken up 3 months of my life. So I figured I would go to the doctor later. I still had some major deadlines to meet at work, and I was working hard for the money, so hard for it honeyyyyy.

“Strength grows in moments when you think you cannot go on, but you keep on going anyways.”

As September past and October began, I realized I still was only averaging no more than 5 hours a night. And this had been going on for months. While I could attribute a portion of that to my crazy insane work schedule from May through July, August through October should have been fine. I was eating less, my energy levels were depleted and I wanted to sleep all of the time. I also had the world’s worst night sweats. I was soaking the sheets a minimum of twice a night and a maximum of four times a night. I literally had to sleep on towels because I didn’t have enough sets of sheets to constantly change my bed. With all of these symptoms it looked like it was time for a trip back to my oncologist.

For those of you who don’t know, in 2015 at the tender age of 25, I was diagnosed with a rare form of a blood cancer called Essential Thrombocythemia (ET). It’s a really long and complicated way of saying that my DNA has some mutations and I created way to many platelets as a result. This is monitored by an oncologist and can be managed, but can never be cured. Normally this condition affects more females than males, and the majority of people afflicted are over the age of 65. Naturally, I already knew I was special – my parents told me I was a special unicorn my entire life, I’m lucky, I know– but this was a level of special I didn’t quiet appreciate. Thankfully, people with ET can generally expect to live a normal life as long as they talk to a hematologist/oncologist who will monitor their condition.

So I called up my oncologist in the beginning of October and told him what was going on. He expressed some concern, as I was already on medication that should have prevented the night sweats, fatigue and decrease in appetite. Little did I know that this would change my roller-coaster ride from a small hill, to Top-Thrill Dragster in a short amount of time.

Over the course of the next four months (Mid-October through the end of January) I was subjected to a bone marrow biopsy and numerous blood draws, as well as multiple doctors appointments in multiple different cities. I traveled a lot and at one point I had five doctors appointments in six days. It was exhausting, physically, mentally and emotionally. I cried so much because I was so stressed. There were consultations where diagnoses were discussed ‘Is it…? Isn’t it..?” Tensions were running high between my husband and I, and for my family and the few friends in the know. I took a leave of absence from work for a while, because I simply couldn’t handle the stress while doctors debated about my diagnosis.

Blood for testing, but wasn’t positive I had any left to walk out with!

Finally, after all of the ups and downs, books worth of test results, and so much medical jargon it made my head spin, my oncologist sat me down and gave me the news. My cancer had progressed. I have secondary myelofibrosis.

What used to be a manageable condition with a normal life span, had now progressed to a more complex condition with a markedly decreased life-span. My bone marrow had begun scarring over, and when that happens, the cells that are created there struggle. Eventually over time, it leads to anemia, gout, tumors, and more ugliness that I was not ready to hear. The cancer was called myelofibrosis, but it was called secondary myelofibrosis for me because it meant my original diagnosis of ET had progressed.

The terminology and the news was overwhelming. What was I going to do? What were my treatment plans? Did I have options? The doctor didn’t have much great news here either. Unfortunately, myelofibrosis has no cure, and generally most people only survive an average of 5-6 years after diagnosis. He did caveat that with the fact that many people are older when diagnosed, but there just isn’t a cure. Also, some people can live as long as 20 years with this condition, or as little as 1 year. They can treat me with chemotherapy to suppress the symptoms, but I will never get better. Over time I will get worse, and eventually I may be a candidate for a Stem Cell Transplant (SCT), where I have the potential to be cured, but the odds are not super, as only 40-60% of people who get the SCT survive the process. It’s pretty harsh on your system. Through all of these statistics and a boatload of more information on support, resources and discussions about a treatment plan, all I could think of was this:

How do I tell my parents and my husband? How do I tell my friends?

I don’t have a great answer. For anyone going through something similar, I am willing to share my experience. You take everything one day at a time. You handle it with as much grace as you can and you allow yourself to grieve, because trust me, you will grieve. Allow yourself to feel all of your emotions. Before telling people, explain that you need them to be there for you and that you don’t have the emotional wherewithal to deal with their emotions in what is bound to be a tough conversation. I chose to have a few face to face conversations, while the rest of my family and friends will be notified by the blog post. It’s not that I don’t care about all of the people in my life, but I just don’t have the energy or time to reach out individually to all of them.

Right now, I am working on connecting with a transplant doctor to look at what would make me a good candidate in the future for a SCT, and what the process may look like. I’m also on some oral chemotherapy pills for symptoms and getting blood work done a lot more frequently than I would like. I feel like a pincushion. I have changed my diet, and I am spending time sleeping when I can, and spending time with my puppy and my husband. Visiting with family and friends has been a fantastic source of strength for me too. While looking to the future can sometimes cause pain, I am trying to move forward in life. I am looking at the next big project at work, and what it will take to get a promotion! I am also making an effort to be 100% present when I am with the people I love. I want them to understand how much they mean to me while I am around to tell them. All of the social media apps can wait. I just don’t have the time for them if I want to enjoy every single solitary second with the people who matter.

“What a slut time is. She screws everybody.”

John Green A Fault in Our Stars

I will be updating more as things progress and as I learn more. But don’t forget, listen to your body when it’s telling you that something is wrong, because it usually is correct. Also, listen to some great music for me and send me some suggestions! I love all types of music and its super soothing on days when I can’t get my mind off of things.