Chemotherapy #2

Last week was fairly uneventful, I was in some pain for a few days and it has been hard to sleep, but after the pain passed things were good. They told me at my mid cycle appointment that my counts were looking good.
Tuesday I had my second treatment, the normal 3 hour visit where they took a second set of blood counts, I met with the doctor, and then I got to hang out on an IV drip for 2 hours while they filled me with chemicals. My dad took me this time and got to meet the doctor.
After Chemotherapy was done we went to eat at Iggy's because I thought I wanted a hamburger, but about 2 hours later I was really regretting that when I started to feel nauseous.

I spent a few really exciting hours laying in bed feeling sorry for myself and then my aunt Katie came over and trimmed my hair a little shorter, plus we colored it which was nice because I think I had some grey hairs sneaking around, and I love a good fresh color. It looks great, we picked a colorant that made my hair really shiny so I'm very pleased with the results.

 The only downside, as evidenced if you look at the next image, is that I shed approximately a sink-full of hair at least twice a day. Strangely, my hair is thick enough that the thinning doesn't seem to be noticeable yet. I keep expecting to wake up with a bald spot somewhere, and it just hasn't happened yet.

 

Anyhow, I have a job interview today which I am quite excited about. I've moderated my anti-nausea medications differently this time so that even though I've been a little more sick to my stomach I've been able to stay awake more and that feels good. Here is to hoping my interview goes well!

Faith: Lessons I'm Learning

Today in church a lot of people talked about trials and overcoming challenges in life through faith and this gave me another opportunity to reflect on how I strengthen my own faith through the trials I have been given. I see people who are sharing in similar experiences, and many people experiencing things much more difficult and it makes me think a lot about faith.
I feel like in life whenever we come to a trial we also come to a crossroads of faith, one shared in the story of Job in the bible. Job is such a wonderful and faithful example of how to handle the difficult times in our lives. Job of course is sorely tested and during his trials his family loses faith, as evidenced in Job 2:9, "Then said his wife unto him, Dost thou still retain thine integrity? curse God, and die."
Clearly his wife is fed up, she has had enough of these difficulties and she really feels like Job ought to give up as well, because really isn't it sometimes too much? Job of course responds with faith, Job 2:10, "But he said unto her, Thou speakest as one of the foolish women speaketh. What? Shall we receive good at the hand of God, and shall we not receive evil? In all this did not Job sin with his lips."
From this example I learn a few things, one, it is not a sin too complain, or recognize that you are experiencing a trial, it is even a matter of course that some of our trials may come about as lessons from a loving Heavenly Father. It is foolish to expect that this life would be easy. I love a quote that I discovered on my mission from the October 2007 General Conference, a talk by President Henry B Eyring titled, 'God helps the Faithful Priesthood Holder,' he says,
"But it is never going to be easy for you or for those you serve. There will always be pain in service and in the repentance necessary to bring the power of the Atonement to change hearts. That is in the nature of what you are called to do. Think of the Savior, whose service you are in. At what point in His mortal life can you see an instance wen it was easy for Him? Did He ask easy things of His disciples then? Then why should it ever be easy in His service or for His disciples?"
Finally, I was reminded of a lesson I learned watching the movie 'Joseph Smith: The Prophet of the Restoration', which I really love and highly recommend and can be watched if you go to this web address here: http://www.mormonchannel.org/joseph

There is a point towards the end where Joseph is talking to Emma as he is about to surrender himself to trial at Carthage Jail, which for those who aren't familiar with the history (really, watch the movie), is where Joseph and his brother are soon after murdered by an angry mob. After Joseph explains what he is about to do and that he intends to go because it is God's will, Emma asks, "Do you ever wonder if He asks too much?" Which considering their lives to this point and the trials they have undergone, seems a fair question, and Joseph, ever an example to me of faith answers simply, "I do not let myself."
This part of the movie has stood out to me every time I watched it, even though it is just a few moments, I think partly because the first time I saw it, maybe 8 years ago, I was really surprised by the idea. As time has gone by and I have revisited the idea over the years, and carried those thoughts in my heart, I have learned that it is easier to have faith and hope if you stop asking. Instead of saying, "Why is this happening to me?" I try to ask myself, "What can I learn from this?" "How can I make this situation better?" and "What does the Lord expect of me?"
I have found that I can't avoid hard things, but I can find my way through them. I still occasionally spend a few minutes here and there feeling sorry for myself, because while I know it isn't productive, it does kind of feel nice sometimes to wallow in the despair and frustration of life. Afterwards because I know that I have a loving Heavenly Father who wants me to be happy, I pick myself up, or sometimes he lifts me up, and I get back in the game, because real joy comes in those moments when we have to work at it.
I know this isn't specific to my condition, and I know that not everyone who reads this will share in my same beliefs, but this is my story, and I get to decide how I tell it. I decided years ago that the only true and lasting happiness comes from living the Gospel of Jesus Christ, and if you love something share it.

The First Few Hairs and Other Odd Experiences.

Hair loss started today. It's just like I read about. My head gets itchy, I stratch at it, I remove a couple hairs. I've been feeling it for a few days actually. Right now it's just a little thinning, I think it won't be noticeable for a week or two. But it's definitely happening.
Otherwise chemo just has made me feel kind of sick to my stomach and really tired. I sleep all night and then I manage to fit in a long nap in the afternoon. I sleep at least as much as my year old nephew, maybe a little more.
Also, there is random pain. For example, the inside of my mouth aches, and my neck hurts (mostly because it's been the victim in my recent surgical adventures). I also get little aches other places, but I sort of sleep those off.
Eating is hard. I'm always sick feeling and some food that used to be good is now disgusting. For whatever reason I've been really liking bean burritos. I never imagined having those on my favorite foods list, but it's pretty much the only food I legitimately enjoy eating right now. Most food is still pretty good, but bean and cheese burritos are like eating cake without the calories. At least in happiness level.
The hardest thing is that I keep pretending that I'm going to wake up feeling good, and I just haven't. It's not too bad yet, not nearly as bad as they described, but it really isn't fun.
It's also difficult not having anything really purposeful to do. This started when I wasn't working, and while I'm grateful I don't have to go to work I miss having scheduled responsibilities. It's hard to motivate yourself to get up and going when you don't feel awesome and you have nothing to do and nowhere to go. I am working on some little art projects, and that's fun. It keeps me thinking actively at least. And I think about riding my bike a lot. Sometimes I even look longingly at the bikes from my window. But then I go out and run a few errands and by the time I'm done it's time for another long nap.

And so it begins...

I am home now, just chilling after my first chemotherapy treatment. Up until a few moments ago I was doing fine but the queasiness is beginning. My first thought was, "They told me this would happen." So I did what they told me to do and took my first anti-nausea drug. Hopefully this will pass.

Chemotherapy took 3 hours, I didn't do much, I was feeling too chill to read or watch a movie, I just felt like being alone with my thoughts. Even though the room has other patients in it and there are nurses coming in and out, and the doctor stopping by to chat with patients,  it is surprisingly quiet and peaceful. So I spent most of my time just sitting and enjoying it. I wouldn't say its my favorite thing, but since I have a port and I used a numbing cream the treatment itself was fairly painless. My mouth tastes a little weird inside, saline and chemicals. And my pee was definitely pink, as promised. Now it is just to waiting out the other side effects and a quiet afternoon reading, or something.

Chemo Class and Port Placement

On Friday I had chemo class. It was really enlightening. I took awesome notes, cried a bit, and was given some homework (to read a bunch of papers about possible complications and info on the specific drug regimen that I am receiving to treat my cancer.) Here are some interesting things that I learned:

• Chemotherapy is individualized. Even though I am going to be receiving a common set of drugs the amounts, etc. are going to be specifically dosed to give me the best results possible. This is done using chemistry and math and is checked multiple times. It is also adjusted according to my reactions to the drugs along the course of my treatment.
• I won't lose my hair for a few more weeks. Generally hair loss begins 2-4 weeks after treatment starts.
• My immune system will be at its lowest a week after I am treated for about 3 days. During this time I am to avoid eating salads, fresh fruits and vegetables, and also to avoid crowded areas, physical contact, and ill people or people who have recently revived vaccinations containing live viruses because I will have the ability to contract them.
• My skin will be more sensitive to the sun.
• One of the drugs they give me will also turn my pee pink for about a day after I take it.

So that's a little bit about what I have to look forward to. The good news is that while there are a lot of restrictions I can still participate in mild to moderate exercise and I can drink all the slurpees I want, it is after all important to stay hydrated.

In other news, today (Monday) was Port Day. I was not excited for this, and I'm actually still not super happy about it because it is quite uncomfortable at the moment. I went in this morning and they performed a minor surgery to install a port that connects through my jugular vein and into my heart. This will make giving chemo, drawing blood, and other IV stuff much easier. Yay. I have mixed feelings on the matter, but I'm sure I will come to appreciate it, plus I was given a prescription for Lidocaine cream that should make the needle poking much less bothersome. This picture is backwards but it gives you the general idea. I am going to have quite the scar collection when all this is done. On the bright side, I got a ton of sleep today and I still feel mellow from the happy drugs they gave me during the operation.

 

I thought I better write this now because I'm not sure how I will feel tomorrow. It's the big day. I'm going to plan on an update at some point, I'm just not sure when. Chemo #1 here I come. :)

Testing, Testing, Testing

So at my oncology appointment they set me up for a few more tests. I'm going to describe them all in the next few paragraphs and then talk about my follow up appointment at the oncologists.

On Thursday I had a PET CT. For this test they did a quick glucose check when I arrived (no eating but I was encouraged to drink plenty of water), I never like that finger prick, but at least it's fast, and then they put an IV tube into my arm and injected a shot of radioactive sugar (it was in a cool metal tube because of the radioactivity) which my fast growing cells, such as cancer cells, would eat and then act as a contrast on the scan. I also got to drink some special liquid mixed into crystal light lemonade that was intended to coat my digestive system to make it visible as well. I spent about an hour in a dark room while my body processed all this stuff into the right areas, and then I got to go through the CT experience again. For about half an hour I got to lay on a table while a special camera took pictures of my insides looking for cancer. Not too bad an experience, I sort of took a little nap.

Friday I went and got an Echocardio exam because some of the . They used a sonogram (ultrasound) to get pictures of my heart from a few different angles. These are cool because you get to see and hear your heart, and there weren't any needles involved. I just hung out on a table while the ultrasound tech took pictures of my heart from various angles. At the end of the exam he showed me all the pictures and told me which parts of the heart they were. Also, when your heartbeat is being projected at a loud enough volume the "thud, thud" noises are definitely squishier sounding. Kind of interesting to hear my own heart pumping blood.

Monday I had a bone marrow biopsy. No big deal. Just kidding, I was nervous and scared and it definitely hurt, but they were very kind and considerate. They numbed me up really good and then took out a sample of marrow and then a small piece of bone. You just feel a lot of pressure and kind of a sucking sensation. The noise made me a little queasy and the painkiller made me feel jittery because whatever it was worked as a stimulant. It was tons of fun. The procedure was really fast though, about 15 minutes.

Today was the best stuff. Today I went back to the Oncologist and learned more about my cancer. I have Stage 2 A Bulky High Risk Classical Hodgkin's Lymphoma. All of the cancerous lymph sites are located in my clavicle area and the upper area of my chest, so near my collar bone.Not too bad.
I am looking at about 6 rounds of ABVD chemotherapy with some nasty possible side effects such as the weakening of my heart valves, damage to my lungs, and peripheral neuropathy as well as nausea, vomiting, loss of appetite, lowering if my immune system, and hair loss. After the chemotherapy there may be some radiation in the upper area of my chest. My doctor gave me some medication to help fight some of the negative side effects and increase my comfort level.
At the end of the week I go to a class where the nurses will explain more about the chemotherapy to me and then Monday they will place a port in my chest that will allow them to give the treatment more easily. Tuesday I start treatment.

First Oncology Visit and Cutting My Hair

I had my very first Oncology visit today. The doctor is really nice and I think we talked about all the major concerns. They are going to have me do some more labs, a PET CT scan (they use special sugars and a big machine to get images of the cancerous cells in my body), an Echo (heart ultrasound) to see how strong my heart is, and a bone marrow biopsy. This will help them decide which stage my cancer is in and how long and what type of treatments to use. There are some scary possible side effects, and some temporary inconvenient side effects caused by the treatment. One thing that will change after chemo starts is in the next few months my hair will fall out.

I don't mind losing my hair, but as long as I was going to lose it I figured I may as well have some fun with it first, so my awesome Aunt Katie cut it for me. We saved my ponytail so I can donate it because my hair was pretty long and it may as well do some good for someone. I'm enjoying my fun short style now. :) My nephew Parker came along and he got a hair trim too. 

The Early Days

Telling people is honestly the hardest part of finding out you are sick. I'm not exactly a private person, so it's not a matter of wanting people to know, its more that every time you tell someone you have to explain certain things. You sort of have a moment where you have to support each other and feel stuff all over again. Sometimes people really don't know how to react. Sometimes I just don't even know how to say it. The worst part for me is I don't like making other people sad and it's hard to put a positive spin on illness.

I've been told that I'm handling this well, but I think it's mostly that I'm not good at feeling unhappy. I feel like frustration, anger, and sadness all take too much energy, and I've had a lot of practice in life at being able to find peace inside myself. I feel like there is this place inside where no matter what is happening to me I can reach down and find a simple kind of joy, which I suppose has been a real blessing during this challenge because I don't have to think too hard about it.

It hasn't been all easy though, I had a lot of stress about insurance in the beginning, and the fact that I'm in between jobs. I had a really different plan for myself for this summer, and I was not happy about changing it. I was planning to have so much fun and now it's kind of more like I'm just seeing so many doctors.

The other big thing that people don't know, because you can't know really, is that I'm really not sick feeling. My Hodgkin's Lymphoma is painless. There is a little pain at the surgical site, but I've been dealing with the tiredness and mild to moderate itching for months. I hardly noticed it to begin with and just knowing what it is doesn't make it worse. At least now I know why I keep getting sick. It won't really be hard until I start treatment though. So until then I'm going to relax, and have fun. I have a good life and I plan to enjoy it.

Diagnosis

At the end of May I was driving home from work one day and I noticed some solid lumps above my collarbone. They were unfamiliar, but I didn't know when they could be so I decided to give it a little time and see if I noticed any change. Two weeks later, the second week in June I was getting ready to leave on my big summer vacation and I started to feel more nervous when I realized they had continued to grow.
I showed them to my mom, and then of course we googled it and all sorts of scary things popped up, and unfortunately I had symptoms to match some of the worst of it. I was so anxious, I tried to ignore it, and I really just wanted to leave and have fun.

I debated what I would do until June 11 and then I decided to spend a day at the Salt Lake Temple and try to figure it out. I just let my emotions run their course, I was scared and frustrated. At the end of a session I was sitting in the Temple and an older woman who had gone through with me came up and took my hand and said, "I just wanted to tell you, I was sitting next to you and I noticed how very young your hands were next to my old wrinkled hands and I was thinking, you just have your whole life ahead of you."

I finally felt some peace about my situation.
The next day, June 12, I went to the doctor for the first time. They ordered blood tests and an ultrasound and then a fine needle biopsy. Then on July 2 I had a lymph node taken out for biopsy. The surgery went well and they got an adequate sample. On July 3 I had it confirmed that I had Classical Hodgkin's Lymphoma.

I have had a lot of different feelings since it was diagnosed. Relief at knowing what was wrong and that I can recover. Scared about cancer and treatments. Curious and a little excited, I know that is maybe a little odd but I enjoy unique and new experiences and this is definitely one of those. An adventure I never wanted but I'm willing to go on.

The hardest part is telling people. I don't mind talking about it, but every time there are emotions and a lot of questions I can't answer yet. This is still so new for me. So I'm taking my time, getting used to it, and trying to make the most of things.

The biggest comfort is knowing that I have a Heavenly Father who loves me. I know this won't be easy, but life rarely is.
I was reminded of a talk President Dieter F. Uchtdorf have in the April 2014 General Conference titled 'Grateful In Any Circumstances.'
He said, " We can choose to be grateful, no matter what.
"This type of gratitude transcends whatever is happening around us. It surpasses disappointment, discouragement, and despair. It blooms just as beautifully in the icy landscape of winter as it does in the pleasant warmth of summer."
I know that as long as I remember my Heavenly Father and his goodness that I will be blessed. He is watching over me and he knows better the details of my life. "I can do all things through Christ which strengtheneth me." Phillipians 4:13.