Here We Go Again

Well, here we are again.

I never thought I'd be back on this blog in this capacity, but I'm here.. so here we go!

Back on October 7th, I woke up and had this bump on my left jaw joint (or whatever it's called) in front of my ear, on my cheek. My jaw was SUPER tight and it hurt to open my mouth. This pain gradually wore off after 5-7 days, getting a little better every day. Of course I posted to the grand ol' Facebook about it, asking for advice. The general consensus was TMJ, but I thought it was weird for it to come on like that out of the blue when I've never had anything like it and I'm not.. young, haha. However, my life HAS been extremely stressful in the last year, sooo TMJ wouldn't really be that much of a surprise. Well, I let it sit and sit and just kind of tracked it. Having had cancer (and just being the way I am), I pay attention to weird things and I even took pictures to track it, ha. Anyway...

A month later, it was still there, I asked the internet professionals once again, and I caved and went to the doctor.

Family doctor first... "yep, that's not normal-looking, let's get an ultrasound of it." I was pregnant, so they couldn't do a CT like they wanted, so u/s would have to be good enough. When I went for the ultrasound, I took Ben and Madi because hello, they went everywhere with me and they've been with me for plenty of ultrasounds. The tech was extremely rude and told me I'd have to reschedule if they couldn't behave. I said a silent prayer and hoped they would be as good as they are when we go to other ultrasounds and appointments. They've been to A LOT of doctor appointments between my pregnancy and all of Madison's appointments, so I knew they could behave. And guess what? They did! The tech was SO shocked and I smiled a little, knowing my kids are awesome.

The result of the ultrasound was that there was a mass of some kind on my left parotid and we needed to do a needle aspiration biopsy to get a better understanding of what was going on. That was scheduled for two days later and let me tell you, it was SO much better than the needle aspiration biopsy I had on my neck seven years ago. It's such a weird feeling being jabbed with a needle when you're numbed up, and you can hear them gathering the cells (fluid) into the needles, but it was better than the neck! After the biopsy, I saw that the screen said the mass was on the left parotid (major salivary gland).

The report from the biopsy said, "There is an irregular hypoechoic solid nodule in the left particular soft tissues measuring 2.3x2.2x1.3cm. This nodule appears to be closely associated with the left parotid gland and may be intracapsular. Contrast enhanced CT imaging of the face is suggested for further characterization. Additional note is made of a small (6x4x3mm) adjacent lymph node, with a discrete fatty hilum. Impression: Solid, irregular left preauricular mass, likely intraparotid. CT imaging is suggested for further characterization." (Gregory Smith MD)

They sent this to my oncologist (who I've been seeing annually for several years since my HL in 2013), who said it does NOT look like Hodgkin's, but that we can't rule out some kind of cancer. Initially, I was scheduled to go see my oncologist, but they referred me over to an ENT since that's where they would send me next anyway.

I scheduled to see the recommended ENT (Dr. Seth Riddle), but I met with his NP first (Jinille, love her!) because he was out of town, and she took some pictures to send to Dr. Riddle and get his input. I went back the next week and basically, he came in and said it doesn't look good. He's very straightforward and I appreciate that. With my medical history, it's nice to be spoken to in a clear way. The cells came back as abnormal and we needed to continue to get a better picture here. He said we either needed to do a surgical biopsy or just surgery to remove it. (Some of the timeline at this point I may be mixed up on, but I went back to old texts with my mom to figure it out, haha.) We decided that an MRI would be the next step, but they needed to get approval from my midwives/OB in order to do so, since I was pregnant. In the meantime, we scheduled surgery for the day after Thanksgiving and basically just needed to gather more information in order to know exactly what kind of surgery we would be doing.

I got an MRI, which was extremely uncomfortable with my little human weight pressing on my belly, haha! I used my hypnobirthing techniques and affirmations to stay calm during the scan. It took about half an hour of lying still on my back on a hard table, but with Lauralyn's genius hypnobirthing methods, I kept it together. ;-) I felt off and sore for the rest of the day, but I kept it together and laid still.

From there, we got the results that it was a parotid tumor. They recommended removing the whole parotid gland to prevent tumors from growing back in the future. There are many different types of parotid tumors, so a second needle biopsy was used to determine whether or not it was malignant. They rushed results, but it still took a few days and carried over a weekend. (I think the MRI and second biopsy were actually done on the same day, but stay with me here...) Also, this biopsy was a little more uncomfortable and I kept an ice pack on my face most of the rest of the day. (This image is intended to show you the parotid glands, but my tumor did happen to be pretty close to that too.)

The ENT sent me to an endocrinologist (Dr. Konstantinos Segkos) for the second ultrasound and needle aspiration biopsy. I guess having it done by an endo, it was more accurate and specific? It WAS different than whoever did it the first time, and he did an ultrasound of my whole neck and thyroid so I was covered in goop... disgusting. (Side note: My thyroid is still doing well!) He said there were a couple spots in my parotid that looked like there might be smaller masses too. The nurse in his office said they've seen more parotid tumors recently... weird. One of the pathology tests they ran was to find out if it was or wasn't lymphoma.

Results from pathology said NO to lymphoma, but unfortunately yes to malignancy. Bummer. So the surgery would absolutely be necessary, but I had time to think about it and decided that I really wanted to wait until after the baby was born before having such an invasive surgery - if for no other reason than to have "real" pain meds while healing. My midwives agreed that this was a good idea and the ENT okayed it/agreed as well. During my pregnancy, I developed gestational diabetes (GD), so I was also seeing Maternal Fetal Medicine (MFM, high-risk baby docs) twice a week for non-stress tests (NST) at this point in my pregnancy. They said I could have surgery during pregnancy as long as I had a NST right before surgery, but they also agreed that waiting would be more ideal. Meanwhile, I ran out of insulin and my insurance was being complicated, so I went a week without it. My numbers stayed in a good range, which actually meant that my placenta was not working as well as it should have been. SO... that plus the tumor resulted in MFM recommending induction in the 37th week. Everyone was on board with this and my parotid gland/tumor removal surgery was scheduled for January 9th, three weeks after baby was born.

Jensen was born on December 16th, a healthy little 6lb 14oz stud muffin, and I spoke with my oncologists about having a PET scan done BEFORE surgery. This happened on December 31st. I forgot how much NOT fun those scans are. You have to fast for the test and arrive early and WARM, so I dressed in my favorite sweatpants and hoodie. :) They inject you with a radioactive sugar substance and then give you a nasty drink to drink, followed by a 45 min or hour "nap". You can't read, play on your phone, etc. etc. etc. and you need to be still because that solution will go to the cells that are most active - like cancer cells eating radioactive sugar. It's a gross diet soda drink and it's probably my least favorite part. Then you have a scan done that takes about half an hour or so. It's one where the machine will tell you not to breathe and then breathe... those aren't fun. Fun fact, though... the guy who ran my test and everything... SAME GUY AS LAST TIME when I had my PET scans AND his last name is Jensen... what are the odds??

Anyway, PET scan showed the glowing parotid tumor (my term is "glowing") and some lymph node activity. Surgery was set for January 9th, and I'll discuss that in the next post.

I'm Grateful for Good People

Today, on our way to Bella's school, the cars were stopped on the freeway. I was in a side lane so I didn't have to slam on my breaks too much. As I started to drive around whatever was happening, I saw that a man had lost some boxes of thermos coolers (like the kind that are cylinders with a handle) and he was running out in the middle of I-15 then to the side with coolers and cardboard box pieces. There were probably 2-3 dozen thermoses scattered in the road. There were a couple other guys helping him. His pick-up truck was a couple hundred yards ahead, parked on the shoulder.

As I pulled up to the "scene" the car next to me switched over to the middle lane, parked, put on its caution lights, and the driver got out and helped the man. It was really touching to see a kind soul in our crazy, busy world take the time to stop and help a complete stranger who was desperately in need of help.

I imagined what the man must be thinking, having to run back in forth in the middle of the freeway, hoping that he didn't get run over or that cars didn't run into the backs of other cars because of his boxes being lost in his travels. I would be mad, worried, scared of the cars, adrenaline pumping, and hopeful for the help from others and safety while I tried to clean up the mess. And then I would be so grateful for those kind souls who stopped their cars and didn't allow traffic to pass so that the thermoses could be cleaned up. Something so simple and yet, so very meaningful. It brightened my day.

On the way home, I noticed that the highway patrol was out there and it looked like the mess had been cleared from the road.

What is the Purpose?

I have been thinking so much lately about this blog. I wrote religiously during my treatment and updated everyone on the stats and appointments, my health, and my potential future. Then, when treatments were done, I just kind of quit. I got in a car accident, I went back to work, and I found myself depressed, lonely, anxious, and overwhelmed. Ever since then, I've only posted every few weeks or months, and I'm never quite sure what to say. I feel an obligation both to myself and to others to continue writing, but I also feel as though I want to "go back" to my private life where very few individuals know what is actually going on. 

I recently read an article about miscarriage and announcing pregnancies early on vs. later. The author made the argument that if we share a pregnancy early on, if we lose the baby, we will have more people to lean on and provide us with support and love. She also discussed sharing a pregnancy early on so that we might have more advice to help us through the early weeks and months, when morning sickness rears its ugly head and, particularly in a first pregnancy, you are searching for any and every possible way to ease the nausea. She touched on the idea that when a woman loses a baby through miscarriage or stillbirth, all of a sudden other women who have experienced a similar situation come out of the wood works to share their story and provide comfort. 

Tonight I watched a video about depression and suicide. Last Fall, after my car accident, I "fell into a depression", as they say. Suddenly, I realized that for almost an entire year, I poisoned myself with chemicals and radiation to fight a disease in my body that very well could have killed me. It was only by a prompting from the Spirit that I went to the doctor last October or so for a check-up, as I had no tell-tale lymphoma symptoms. Sure, my prognosis was good, but the reality of it was (and is) that the cancer or the chemo or the side-effects could have had the complete opposite effect and, realistically, I could have died. 

I experienced anxiety for the first time in my life. I couldn't go to Walmart for longer than about seven minutes before I would start getting blurred vision and breathing heavily. I literally couldn't go into that store. One day, I had an anxiety attack in the early morning hours that was so massive I thought I was having a heart attack, at 28 years old (it was the weekend of General Conference). 

I began taking medicine for the anxiety and seeing a counselor for a plethora of reasons. I asked for and received multiple priesthood blessings and many family and friends prayed for me. I started to get better. 

At times, I would completely fall to pieces. Some days I would choose not to take my anti-anxiety/depression medicine so I could feel anxious, depressed, and alone. That would throw me off for days. Other days, I felt so strong I was sure I could do anything and help everyone. Those are probably the days I blogged - or starting blogging. :) 

Eventually, I "graduated" from counseling and chose to discontinue the anxiety medicine. (And I can now go to Walmart if I must. I hate it, but I can breathe.) :)

I meditated and talked with friends to help. I focused my energy on other friends and my family and helping them with their needs. I prayed to have strength and to keep going every day. 

But sometimes, I still have really crappy days where I feel alone. I have found that mental illness, like miscarriage, is a hush-hush topic more often than it is not. When you finally work up the strength to tell someone you are struggling with your own mental health, you learn more about them. You gain strength to tell others and, just like with miscarriage, people come out of hiding to share their experiences. You are no longer alone in your confusing and confused life. 

These two scenarios/topics got me thinking more about my blog, and as I have read and watched things about them in the last few days, I have pondered about what my new purpose for it is. This used to be a place to update friends and family on the progress of my treatments and my "road to recovery", but what now? And then it hit me. 

I want to be accessible to others. I don't want to shove my story down anyone's throat, but I want to exist and be here, in case they want to know they aren't alone. I don't know that I would announce a pregnancy early on, but I have already announced many other things here on this blog and I want to continue to do so. I want to be a place that even just one person might go and find comfort in the fact that they aren't alone, that I have been there, and that (hopefully) I can help in some way. 

I have toyed with the idea of writing blog posts for a secondary (albeit small) income. I have thought about "pushing" my blog around in more spheres to bring attention and "publicity" back to it. I have considered changing the name and even the viewpoint from which I write. So many ideas have been running through my mind the past several weeks. Tonight, this idea popped in my head and I knew I had to write it down before I forgot. {And thus we have a bunch of iPhone typos.}

And so, my goal is to be here. To share my experiences - the good, the bad, the ugly, stinky and awful realities, and the wonderful, uplifting, and real truths in my life. Tonight, I hope this has helped one person beyond myself. Writing is therapeutic, but reading can be too. Share this with anyone you would like. Let's help people know that they are loved, thought about, and absolutely never alone. 

MUGA Results

Friday arm... It's a good look. 

I actually got the results from the MUGA on Thursday. Nancy called to let me know that my heart is 100% bueno! Buuut the lab did forget to run a test on my blood last week that has to do with looking for tumors, so I will go back in a couple weeks (when my arms have healed a bit) to have some blood drawn for that. The doctors believe that my symptoms with my heart and swelling are residual effects from chemo. Yep, a year later. But hey, my heart is good and my best friends and family are good and I'm alive, so it's good. :) 

Friday night we went to a carnival at B's school. I was so grouchy and hangry, but Patrick is a saint and he just rolled with it. Here is B with her BFF, Z. Those two can barely breath without each other. They have the same kindy teacher, but Z is in the am and B is pm. Def a good thing. :) haha. I love this picture so much. These two are just best buds. Period. 

And I love M's Michael Jackson look. $5 shoes and the look of wearing shoes for the wet weather and independence and freedom through a summer dress. 

Here are my arms today. Good look, huh?

And I was suuuuper lazy and feeling down today, so all I did was clean up some clothes and run loads of laundry. I let M brush and comb my hair while I was lying down watching 'Safe Haven'. I left looking like this and it reminded me of how my older brother, Tyler, called me Afropuff growing up. 

It still looks like this, hours later. 

MUGA

Last night, Patrick and I watched a super depressing cancer movie called "Now is Good." We went to bed late and then Bella got in bed with us at about 1:00. At 2:00am, Makenzie woke up and was whining, crying, and wanted to get in bed with her pillow (which is long and skinny), a necklace, a nightlight and its cord, and the iPad. Holy bananas. I just wanted to sleep. Eventually, I moved Bella to the foot of the bed and that sort of worked. I needed the humidifier since I've been catching a cold recently. 

Today, I had my MUGA test. Our insurance has been giving us some issues, so it's been a mess getting this thing ready to go. But it finally happened after a long day at work. 

A MUGA is a test for my heart.  http://www.cancer.net/navigating-cancer-care/diagnosing-cancer/tests-and-procedures/muga-scan

They had to draw some blood, mix in some tracers and radioactive material, and then put it back in and scan me to see what it did, specifically with my heart and how it worked. 

Well, apparently lymphoma patients have awful veins after chemo. I think I am the perfect example of that. Last week, I had a check-up with Nancy from Dr. Rich's office and when they went to draw blood, just to run some basic tests, it took two nurses and three tries. Then one had to spread my arm and apply pressure while holding the needle in place, while the other got the viles. I left with a rainbow on my arms from the pretty gauze. 

Today, there was a student working in the radiology dept and doing everything with me, with supervision, of course. I told them my veins aren't good, and he couldn't get it to work on his first try, so he asked the supervising fella. He just called in a snazzy nurse who is good at what she does. (Or maybe he did try it first... Goodness, I can't even remember.... I think he tried it.) anyway, she tried twice, left some sweet bruises, and called in another nurse. He tried twice, left two crazy bruises, and then stopped. They put my arm down, put the tourniquet on super tight, sang happy vein songs, and the veins just kept getting blown. So they called in a couple ladies with an ultrasound machine. They used that ultrasound to find a deeper vein. She tried twice and finally got it on the second try! Seven (or eight?) tries later and we were successful! She had one lady twisting my arm to the side (since I couldn't bc of my wrist surgery) and everyone else in the room helping with supplies or well wishes. It was such a feat! 

They got the blood and I sat as still as I could for half an hour while they mixed it with the tracers and radioactive stuff. I didn't want to blow that vein too! Finally, they put the blood/radioactive/tracers mixture back in, flushed with good ol' saline, and took the needle out! Woohoo! I felt so bad that it was taking so long. I wasn't mad at anyone and it wasn't actually that uncomfortable, for the most part. It hurts more now than it did earlier haha. I felt so bad that something that should've taken ten minutes took over an hour. I'm sure it was exhausting for everyone involved, not just me. 

There were only two series of scans, but I had to hold my arms above my head. I hate doing that. It's sooo uncomfortable, tightens up my neck muscles, and since my surgery, it was just hard to do. But twenty minutes, not too shabby! 

So the MUGA is done! I found out that last week, they missed one of the tests they needed to run with my blood so they need me to come back. Ah! After today's adventure, I am just not thrilled about that. I can't even straighten my right arm right now and I have a couple really hard, bruised spots. But I'll do that. Sigh. And probably go back next week for my MUGA results anyway. 

I'm totally pooped and I wish it were Friday, but I'll survive. I'm icing my arm and I sent my family to the pool so I could rest on the couch. I did learn today that all these vein issues could become another issue if I ever get pregnant again, including my ability to get an epidural. Eek. Don't know for use, but eek. Someone is gonna have to teach me how to breathe. Haha! 

In other cancer news....

I had two people send me emails today about a friend who was recently diagnosed with Hodgkin's. I think these two totally separate people were talking about the same person (based on their description of said friend). What are the odds of that? It's interesting to me how this really is now a part of my identity. I don't mind, though, because it has had such a huge impact on my life, and if I can help someone else, that's even better. 

I didn't intend for this to be a super negative post. I just wanted to document today's test and adventure. Happy Hump Wednesday. 

Looking Back and Forward

In just a few days, it will be one year since finishing radiation (August 26), the last of my cancer treatments. Cancer has been on my mind for weeks now, but I haven't known what to say or write. I guess I still don't; I'm just being brave enough to let my fingers type and see what comes out.

It has almost been one year. I actually weigh five pounds more than I did a year ago. I gained MORE weight, you ask? Yep, I did. Don't judge me, I judge myself enough.

So let's talk fat then... I have more of that than I ever have in my life and in places I didn't realize you could HAVE fat... or rolls. Fluff. Whatever you want to call it, it isn't as fun as marshmallow fluff on a peanut-butter sandwich. But... that's probably how I've maintained it.

I have had people tell me I can just get up and go or that I can lose x amount of weight because they did, their cousin did, their mom, their uncle, whoever... But I've also had friends who have been very supportive and understanding. Trust me, I know what I look like and how much I weigh. I'm more up-close and personal with it than you are. I also know that I think about it a lot and talk about it plenty.

Yes, I weigh more than I did when I gave birth to my big babies and my wedding ring hasn't fit in over a year. But this is not baby weight. It's not lazy weight. It's not 'I ate whatever I wanted whenever I wanted' weight. It's cancer weight. Stupid, stupid cancer. There are many reasons people hate cancer. This is one of the reasons I hate it. I think I hate it even more because I worked really hard for over a year after M was born to get back into a healthy state. It's hard to be unhealthy and, unfortunately, I'm still unhealthy.

I read an article today that I really loved. (It can be found here.) No one's cancer is the same. No one's life is the same, honestly. But this means that even if you and I are diagnosed with the exact same type and stage of cancer, it will do different things in our bodies. You might make it and I might not. Or I could make it out squeaky clean and you could end up with some other cancer down the road or a recurrence of your original cancer. Cancer is evil.

There is one thing I don't like in that article. When someone dies from cancer, we say they "lost" the fight. I don't think that's true, and I don't like saying that. My parents recently had a friend pass away from cancer. That evil, evil cancer. He fought and fought, but he didn't "win". What do you mean? He fought and fought and he's a loser? I don't think so. Aren't we the losers because we know longer have our friend, our loved one? And yet, weren't our lives enriched by knowing this person? I don't see "losers" in the situation, though I do see those family members who are without their loved one.

My words are all jumbled and I apologize for that. I'm tired of hearing about people "losing the fight". I'm tired of cancer. 

I'm tired of "you survived cancer, so _________."

"______ didn't make it, but ______ did."

Cancer sucks. It takes lives. It makes life more difficult. It leaves its mark. It doesn't just GO AWAY. It's a beast.

YES. Cancer gives you a new perspective on life.
YES. Cancer helps us appreciate who and what we have in our lives.
YES. Treatments can save our lives.
YES. We are alive.
YES. I am alive.

But I still hate it and sometimes, I don't even like the mark it has left on me. Well, some of the marks. :)

So here are the facts...

BECAUSE OF my cancer, I can't just get up and go. I can't work out five or six days a week. Three wears me out. Yes, it's been a year, but I can't do it like you. So I'm still overweight, and no one hates it more than me.

BECAUSE OF my cancer, I may or may not ever have children again. Only time will give us that answer. (And we all know that time can be really difficult to wait for...) :)

BECAUSE OF my cancer, I get tired faster than most people... even though it's been a year. Some days, I come home from a regular day of work and I'm too tired to do much more than make a simple dinner and survive until the kids go to bed. Sometimes I give them melatonin to speed that process up.

BECAUSE OF my cancer, I'm uncomfortable in my skin.

BECAUSE OF my cancer, I had to buy new clothes for work because I literally didn't own any pants that fit. (Not so fun when it's for bigger sizes than you are used to buying.)

BECAUSE OF my cancer, I am conscious.

BECAUSE OF my cancer, I sometimes feel very defeated.

BECAUSE OF my cancer, I've had to look at life differently and live it differently. This isn't necessarily a bad thing, but people don't seem to understand.

I'm tired of people assuming I am capable of things I am not because I am not 100% and because I will never be who I used to be. I'm tired of being judged for the same reasons.

Yes, I am a cancer survivor and it could be worse. Yes, I did exceptionally well during my treatments. Yes, I'm a live. Yes, I was blessed with a new outlook and appreciate for life. Yes, I have so many things to be grateful for. However, sometimes I just don't feel that way and I think that's okay.

Here's the deal. I hate cancer. I hate it. I wish there was a cure. I wish people didn't have to die from it. I wish people didn't have to go through cancer or cancer treatments. It's evil, it's mean, it's selfish, and I wish it would just go away. Until then, I hope people will become more educated on the mark cancer leaves on a person and their loved ones.


*What a rant this was. Whew.

Rockstar

*** This post is from October 22, 2013 and I'm just now publishing it... I never finished it, but I'm publishing it.***

Today, I was a rockstar.

I worked in the morning. Finished putting grades in for the first term.

Then I went to my massage and chiro appointment. Then I set up a follow-up appointment for something related to the car accident. Then I called someone related to the car accident. Haha. Sorry, I can't post details.

I called the clinic and made sure a few bills were re-submitted under the correct number.

I called my radiation oncologist to talk to them about my heart again and scheduled a CT with angio for tomorrow.