Sunday, July 19, 2015

Side Effects and a Second Home

At the beginning of this journey I was walked through the many possible side effects that may occur throughout both my chemotherapy and radiation treatments. Though many side effects were labeled "rare," it seems that I have the uncanny ability to catch them. 

The worst this far is the severe chemo burning in my feet. 
 From what I was told, the chemo toxins settled into my feet, causing extremely painful burns and blisters. This quickly disabled me to the point that it was impossible for me to walk. 

As of this last week, I was hospitalized for both a double transfusion and IV pain control. My super awesome oncology team was able to contact pain/burn specialists that helped us revamp my pain medication regime. 

After three days in the hospital, I am beyond thankful to say that my feet are finally healing.

Between chemotherapy, both inpatient and outpatient, and increasingly common transfusions- I spend a lot of time in the hospital. However, unlike most people I love being in the hospital. Undoubtedly, it is mostly due to the fact I have the medical staff possible. Between my awesome nurses and crazy good Oncology team, I have found P4 to be my second home.
(P4=the Hematology (disease of the blood)/ Oncology (cancer) floor)

Whether I am constantly consulting with my Oncology team or calling my nurses at odd hours, the level of care is beyond words. I am so grateful for the opportunity to be at UW Children's. And also for the opportunity to know, confide, and heal with such a remarkable medical team!

(Never a dull moment when spending time with a fellow Type One) 

Sorry for the long delay, but I finally finished the "Why Hope" page. I hope that it is a blessing to you.

Thank you so much for your support! Due to the chemo burning, my next chemo session is not until next Monday. Please pray that my scans during that week will show the cancer is dying. These scans are incredibly important as they determine whether the treatment can continue.

Thursday, July 2, 2015

The "Why's?"

Why do I have Type One Diabetes?
Why three kids with Type One Diabetes?
Why cancer?
Why cancer at 19?
Why bone cancer?
Why metastasized bone cancer?
Why a "big-league" cancer?
Why chemotherapy?
Why so much chemotherapy?
Why all the horrendous side effects?
Why do pediatric cancers exist?
Why do kids get cancer?
Why are all my roommates on my floor like - three years old?
Why are all my hospital floor-mates bald like me? 
Why do they have to fear death?
Why do only a few "get" to live?
Why do some people never have any hardships?
Why my family? 
Why others families?
Why at all?
Why ...?
Why ...?
Why ...?
I could write the "Why's" for hours . . . my mind is exploding with them.

 Franky, after just talking to a few cancer survivors/fighters I can almost guarantee their minds are fogged by the same question. 

I sit here perplexed. 

Usually my posts are questions that I work through and break down to help both my readers and myself. However, the questions right now seem to outweigh the answers.

Though I may never get answers, I know one thing. I have an opportunity to use this dark place and shed some light.



 (My awesome nurses have given me a new nickname. Hope it sticks!)
 
Though cancer may plague my mind, I can rest in the safety of God's will. This was not an accident; God has a deliberate plan for this in my life. James 1:12 says, "Blessed is the man that endureth temptation: for when he is tried, he shall receive the crown of life, which the Lord hath promised to them that love him."

Though there are many cancer related realities I cannot control, I can control one thing . . .

what I do with them.

(Inpatient chemo with my princess by my side)



I am currently writing the "Why Hope" page, but have yet to finish it. Frankly, it's not easy.

Sunday, June 21, 2015

Dealing with Death

Perhaps the title alone suggests, for many, an "untouchable area."

Yet here I am, and for the first time in my life I have come to the realization that I am not as immortal as I once felt. Yes, immortal is a strong word, yet it's how everybody seems to live. 
"Live like there's no tomorrow."

I entered this world of cancer only two months ago. It's a place of new feelings, realizations, and realities. Obviously, the chemo has worn my body down. On Monday I head in for round 6 - round 6 out of 36. That leaves a good 30 rounds to go, a bout of radiation, and multiple surgeries. Frankly, this doesn't depress/discourage me. If it takes these two terrible years to save my life, then I have no reason to complain. 

However, there is a much more luminous side to this disease than I have really allowed myself to realize. 

To be "straight up" with you all, where I am at in this fight is like this . . .

Ten people will enter this specific fight- and three will get to win. 

Get

Too many people (including myself before all this) assume that beating cancer is all about the size of the "fight in the dog," the "will to live," the "fight in the fighter."

It's not.

In the course of my coming out of sedation (2/3 chemos include being drugged so this is a frequent habit), I have learned a lot about my own cancer, and also cancer in general. The realization of what I am dealing with hasn't been easy, which is why I have written this post.

I keep writing even when I don't want to write. I write when I would love to curl up and deny everything that is happening. I write when reality is too painful and I'm ready to be done with it all. I write when I know that where I stand could help others - even the many who haven't and probably will never be in my position. So what is to be learned at this point in my journey?

Death is now real.

At any moment, it could be my time to go. In fact, statistically - that's the most likely. I totally get that if God doesn't plan for this cancer to take me, then all of my treatment will be my lifesaver! Just understand that our prayers may not be His plan. For me, that is what I'm having to process.

For you? 

You never know what you have until it's gone.

Don't take life for granted. I find it amazing how much my perspective has changed- and even now life in the doldrums seems precious.

Yet most importantly - know you have hope.

Hope that lies beyond this world- beyond this suffering and pain. I couldn't imagine facing these realities without such hope. That is what keeps me smiling. That is what keeps me fighting.

Hope is the realization that cancer can be beat; and an early death is only the doorstep to an eternal beginning!

(Stem Cell Harvesting and also a double red cell transfusion on Saturday. When I tested my blood sugar that was 4 needles in me at once- new personal record!) 

Sunday, June 7, 2015

"Cancer Difficulties: In Me" by Me

What is the most difficult part of cancer?

This seems to be my most frequently asked question (and often one that I wondered) before I entered this new world. Before I break it down, I have to disclaim and inform you all of an important fact: this is me. I can’t speak for others who have had cancer, but now I can certainly relate. Every cancer is different and difficult in many ways. 

So what are the hardest things about cancer?

It’s evil.

Both my younger siblings and I have lived for five years with a deadly and serious disease- Type One Diabetes. T1D doesn’t play by the rules. It ruins days, ruins weeks, ruins plans and wrecks havoc on normal life.

Cancer is different.

 Cancer attacks the body and mind with an evil vengeance. . . At times it makes one doubt their will to live. It cripples the soul and works to drag one’s focus onto the ominous task of surviving. Cancer thrives on the fear of the unknown - the opportunities that could arise at any moment. Hence, I think I can easily state it’s apparent evilness.

It’s selfish.

I used to have an incredibly focused and driven life.

Fueled by my ambitions of becoming a pediatric nurse, my days were carefully structured and managed to raise grades and become the best nursing student possible.

Then I was blindsided by my cancer.

College stopped completely as new tests, surgeries, and appointments filled my agenda. With only two weeks two go in the semester, I was completely stripped of my opportunity to finish strong. My ambitions and dreams have come to a stand still, and now I have at least two years of fighting. With a year of chemo/ radiation/ surgery/stem cell transplant, and then the process of removing/rebuilding my entire shoulder blade - happiness and hope are easily fogged out by the darkness that is my cancer.

My emotions are easily shaken by the longing for normal life of one day being a pediatric nurse! The simplicity of helping others without the dark reality of living just to “beat the odds”.

It’s powerful.

The sickness that I feel isn’t comparable to anything in life that I had experienced. I assume it is this way because our bodies are never meant to be this sick. Chemo kills the cancer, yet it feels like it’s killing me at the same time. Both the cancer and the chemo are working to destroy.
It’s a deadly duo.
 All this with the lovely combination of Type One Diabetes. Any T1D knows the comforting sickness that high blood sugars entail. Well, combine that with the BG-spiking chemo and we have a combination that will really send one for a ride! Yet even diabetes has a hard time topping the lovely side effects of chemotherapy - so far.

My reality.

So there it is. Up above I have detailed the side of this disease I usually don’t describe: the harsh, demanding, selfish battle with cancer that seems to strip me of so much!

Even as I type this out, my head begins to spin. Emotions begin to flood my heart and thoughts of the hardships ahead make me yearn for a normal life.

But first of all, this is all momentary. I can do two years. I can handle a month in the hospital in complete isolation because that means I can beat this cancer! I can do a year of chemotherapy because that means I can beat sickening statistics! I can do momentary.

Second of all, yes, cancer appears to be robbing me of everything I dream about and love. Cancer can take my normal life away. It can destroy even the normalcy of feeling physically well. But it can’t take away my core! Though at times I don’t feel like myself, I have an incredible support team, family, and God. Cancer can’t touch that.


Finally, the most significant question that people are asking me, and that I have wondered myself, is why God allows cancer and other trials in our lives. This is a very important question, and I want to lay it out somewhere other than the end of this post. Within the next few weeks, I’’ll actually add a tab called “Why Hope?” permanently on the blog. That will provide a great way to share with you the significance of what God is doing in my life right now.

Thursday, June 4, 2015

The Awesomes / Not Awesomes Update

Well hey there world! 

There's so much to write about and then the difficult task of, well, writing it. 

I had my first 5-day admitted Chemo. This was actually incredibly interesting in so many regards. As I sit here reminiscing of where I was just a week ago, it is like trying to think back to a year ago. How so? I'm not sure. I suspect either the chemo did it- or my nurses slipped some "forget-everything drug" into my port. 

Due to the fact that my awesome nurses are now part of my blogging audience, I'm gonna go with the chemo.

In my opinion, the 5d Chemo has wrecked many more side effects and havoc. Through the week of chemo, I "felt" like I was me. I slept a crazy amount - yet I still played soccer in the hallway with my PT dude, talked to my doctors (sometime), and did all the extremely thrilling things people do in hospitals . . . but I only vaguely remember all of it. My family has enjoyed fabricating false stories and now I have had to beg to find out whether they are true or not.

(My T1D nurses! If I look partially drugged ... it's because I was.)

Also during my stay I got to meet two of the nurses with T1 Diabetes. The one on the right is practically one of my main P4 nurses for the next year: we have a blast! All of my nurses are incredible - I just didn't get a picture with every single one. (I have a feeling I will be kindly reminded by the rest upon my return) They also have become fans of the "Diabetes4Dummies" videos Daniel and I put together - as they had ever so kindly referenced on the welcome board...

(If you haven't seen "Food Police", you can watch here)

Instead of rambling on, I thought I would conclude this update with my ER trip. As many of you heard, I was in the ER on Tuesday - for 14 hours. Although it was extremely complicated then, thankfully it is more simple now that we are on this side of it. Tuesday I was instructed to go to the ER after "blacking out" and also having low blood pressure/ sodium levels. Upon getting to the ER, my blood pressure was fine, but my heart rate was hitting 130s (should be 60-90s). To make a long story short, they had an EKG done, put me on fluids, and monitored me for 6 hours. I was very dehydrated from the 5d Chemo, my wonderful sleeping spells (wasn't drinking fluids), and high blood sugars (from Chemo). After my heart was stable, they re-evaluated and gave me the go-ahead to go home. 

Ten minutes from home, I get a call from the ER saying that I possibly had blood clots in my lungs - thus putting a strain on my heart. So, we turned back and headed up for an MRI. Due to a bad night in the ER, we waited 9 more hours and didn't get home till 6 AM. The tests came back negative on the MRI, and it was just my lovely Ewing's tumors in my lungs (EKG) and severe dehydration (heart rate) that caused the wonderful dilemma. Anyways, thank you all so much who were praying for me during the lengthy event.

In conclusion, thanks a million for your support, prayers, and encouraging messages you have sent! 
Small/big detail: my platelets and white blood cells are low so I may be going in for transfusion on Saturday/Sunday. I also have a 2 Day Chemo on Tuesday (if transfusion goes well), so if you could pray that my counts cooperate and I can stay on schedule that would be awesome! Seeing I have a year of this to go, I'd rather not get off track this early on. 

You guys are an amazing support group!! 

I'll update soon!

(My main activity during chemos, with my little princess)

Saturday, May 23, 2015

Temporary Hairlessness

I'm finally back on my laptop since last I posted. 

I thought that with all of these crazy happenings I would be totally on top of blogging, FB, and all the updating . . . but usually, I would rather sleep than think. 

So here are some answers to the top questions I am sure many are wondering at this time...

How are we doing? I would say very good, considering. I personally figured that once I started chemo I would "snap into the reality" that I have cancer. It didn't work. Not to mention, we pretty much had a "second diagnosis" while in my first round of chemo (In my last post I let you all know that the cancer spread to my lungs). However, for me that is a much bigger deal than I care to delve into right now. Thankfully, my oncology team is still optimistic about it all! So I'm going to bank on that and the BIG reality that we have a big God instead of going off into all the lovely statistics and articles I have read. 

We head in to the hospital this coming Tuesday for five days of chemo treatments. I'm not at all looking forward to being cooped in the hospital for a week, but since this will be common-place for the next year, I'd better buck up and learn to like it. The staff is absolutely incredible! I couldn't have better doctors, nurse practitioners, or nurses in the world! (NOT to mention I have a Type One Diabetic Nurse!! Yeah! so totally fun) So I do have positive things to anticipate - which is a blessing. 

(The "temporary hairlessness" happened on Monday. I shaved it instead of it all falling out soon)

I find days have their own ups and downs. Obviously they aren't all "ups." Between sickness, nausea, low white blood cell counts, and the craziness of having three T1Ds, days can definitely bottom out. Yet what helps is the incredible support that we have (you included): being with my family, getting outside in this amazing weather, and focusing on anything other than the fact I have cancer. :)

In conclusion, we are starting to find our groove. We just have to keep plodding and focus  on beating the odds and kicking this cancer!! Thank you so much for your prayers, emails, and love. It means more than I can sometimes personally express thanks.

Until the next update, See you then! 

(I must say, supervision is much more fun than actually working ;) Lots of fun out with Sam and Jon)

Wednesday, May 13, 2015

First Chemo Down: Bad and Good News

Hi my friends, fellow-cancer fighters, and readers:

It's me!!!

It has taken me a full three days to get through my first round of chemotherapy. Not to mention the surgery in which my chemo port was installed and also when my bone marrow biopsy was done.
I still feel a little loopy but I wanted to go ahead and send out an update!

So there's some good news, and some bad news.

The good news, is that the cancer has not spread throughout my body! 

However, the bad news is that the cancer had spread to my lungs. There are multiple small tumors, and one large tumor in my lungs. This is another blow from the back- mainly because the PET scan seemed to show that the cancer was localized. Sadly, that is not the truth.

The gameplan from this new finding is going to entail more intense chemo and radiation. Also, at the last 3 month period, my body will be in the hospital for a whole month to severely attack the remaining cancer.

Please pray for my family and I. We have a year-long battle ahead, and
"bad news" never helps. 

All I can rest in, is that God knew this was going to spread far before any of us. 

Thanks Again! :)