Symptoms That Lead to a Diagnosis.

This is going to be a long one.

Rewind to August 7, 2015. This is the day I moved into my townhouse. I was so excited. My own place with one of my best friends. It felt like a step further up the staircase into adulthood. The week I moved in I got really sick. I have bad allergies so it really wasn’t a reason for concern. What ever dust or mold was in the house was bothering me and I got a nasty sinus infection. As it progressed it moved to my chest (like congestion does) so I developed a cough as my body was trying to get rid of the extra phlegm and mucus (those are gross words). The cough lasted a while but I never thought much of it.

Now, October 2nd of the same year. It was the first coldish weekend of the year and we went to Alligator Point for a friend’s birthday. It wasn’t sunny so I didn’t get much sun but I did get a wind burn on my face from the chilly air. My cheeks were all dry and flaky and tomato red but I didn’t think much of it either. Until it didn’t go away. January rolled around and I still had a rash on my face so I went to a Patient’s First who gave me a steroid cream and referred me to a dermatologist. (The steroid cream didn’t make it go away just FYI)

I went to the derm thinking I had rosacea or eczema but once he saw me he thought it was much worse. He actually though I had the Lupus rash. He treated me for acne just to rule that out (None of the creams or pills helped either. Also just FYI). From there I went to see an Internist. They didn’t believe I had Lupus but wanted to do blood work and a chest X-ray just in case. I never went to the chest X-ray because I couldn’t find time (see paragraph below). My lab work came back negative for signs of Lupus so we were back to the drawing board. At this point I just had a lot of unanswered questions.

School had started back and it was my most difficult semester of college so far. My time was not my own. Plus I was working 25ish hours a week which meant finding free time to go to the doctor was near impossible. The classes I was in did not allow me to miss days and I hate missing work. I have only called in a couple times the whole two and half years I have worked there.

I lived life as normal for the next few months. I studied hard. I went on a cruise with my friends. I passed tests for classes. I turned 22. I paid rent many times. I went to Disney with that sweet boyfriend I have mentioned. All sorts or normal things. What wasn’t normal was how tired I was all the time. In the moment I chalked it up to me being an exhausted college student- late nights, early mornings, not getting the vitamins I need. Looking back on it, it was a much bigger deal. I couldn’t even make it out on a Friday night with my friends without feeling miserably tired the whole time. Naps became not just a nice luxury but vital to functioning day to day. During this time the cough got much worse. I couldn’t laugh or walk up a flight of stairs or sleep through the night without falling into a fit of obnoxious coughing. My best advice to all of my friends is, do not be paranoid but be persistent about your health.

Sometime in May at work one day I realized my neck was swollen. If I rolled my shoulders back it felt like someone was wrapping their hand around my throat and choking me. You could definitely feel and see how swollen it was. My first instinct was that it was my thyroid which I know is a big deal ,therefore, I told my mother immediately and the next week we were back at the Internist. They agreed it was larger than normal and ordered an ultra sound on my neck.

Those results came back and my thyroid was perfectly fine but there was a cluster of swollen lymph nodes in there. This lead to them ordering more blood work and a chest X-ray. This one I went to. The scans came back with some grim news. There was something in my lung. No one knew what it was but a CT would show what was going on. That was the next step.

July 1st I reported for my chest and neck CT. Let me just say, everything that could have gone wrong during that test did go wrong. I am not good at veins and needles. A CT requires an IV for the contrast that they inject in you. I asked them to do my left arm because it is easier to find a vein in that arm. So, naturally, the nurse started on my right arm which is the arm no one finds a vein in. After sticking me three times and digging around in my arm, still nothing. So they moved over to my left arm. Got it on the first try. They should have just listened to me in the first place. Beside the point. Everything was going great but then the tube that was connected to the machine that injects the Iodine popped off and I ended up getting a bath in it. That stuff tastes awful and it is really sticky. I left with crunchy hair that day. But anyway, they reconnected it and then the tube sprung a leak through a tiny hole in it. They pulled me out, redid my IV and tried again. Then the part were the medicine actually goes into my arm started leaking. So they pulled me out, redid my IV again and then put me back in the CT machine to finish my images. It was just a bad experience all around and I’d be ok if I never have to have another CT for as long as I live.

Those results came back and this time there was an actual suspected diagnosis. Hodgkin’s Lymphoma. He told me I had a large mass in my right lung and nodes in my upper chest and neck that were pressing on my trachea. I sat and cried beside my mother as the doctor told me about the disease, how it requires chemo, and how the next step was a biopsy. I was numb. There was no way I had cancer.

July 13th was my biopsy. My least favorite test I’ve had to do so far. They used ultrasound to actually find an enlarged lymph node then with ultra sound guidance they put a needle in my neck, into the lymph node and injected lidocaine to numb me. Which hurt like a mother. Then they took four small needles and stabbed them in the node to withdraw fluid samples. Last they took a scalpel and split the skin a tiny bit and put in this giant  hollow needle that takes an actual sample of the tissue. It makes this loud pop noise like a toy gun.  They did that four times as well. I was awake and aware for the whole thing. None of it hurt like you would think it would but it was the kind of pain you feel in your teeth and toe nails. A dull, vibrating, hurt that resonates throughout your whole body and makes you hate being alive.

Now we are at July 18th. Their suspicions were confirmed. I had cancer. My doctor had already found an amazing oncologist for me who had experience in Hodgkin’s. Chemo was definite. Radiation was still a maybe. The rash on my face was triggered by my immune system fighting itself. The doctor told me to think about harvesting my eggs and my appointment was going to be on July 21st with Dr. Karen Russell. July 20th I had to go get an ultra sound of my heart done. It was a baseline test to make sure I am healthy enough to start chemo. My first oncology appointment went great. Dr. Russell was amazing. She was light hearted and goofy but so incredibly intelligent and knowledgable about my disease. She had a way of answering questions to where I could understand but without being demeaning.

It was information overload, however. I found out my kind of chemo will be ABVD. Which is an accronym for some really fancy-sounding, medically-named drugs. I for sure will be losing my hair. I will still be able to have kids. I will need to have a port put in. They showed me the “Infusion Center” which sounds really futuristic and intriguing but it’s just where they hook you up to the IV and pump you full of poison. Oh but they provide you with lunch. So…that’s cool? They also wanted to get started with all of this right away.

I still did not have a stage at this point but a PET scan would be able to determine just how screwed I am. They also told me I would have to do a PFT- Pulmonary Function Test. Tuesday the 26th I reported to TMH for the PFT. The tech was the absolute nicest and most motivational man I have ever met. I want him as a life coach. Basically it was a test where I had to breathe through a snorkel while my nose was clamped and see how much I could take before I suffocated. For those of you who don’t know, the nodes in my chest are compressing my breathing tube so much that it is almost flat. Needless to say, I don’t breathe very well. But especially not when I have to breathe through a straw. Oh and this whole time I was locked in an airtight glass tube looking at my mom like a sad puppy.

Wednesday the 27th was my PET scan. The nurse called me from the waiting room and literally walked me out the back door of the cancer center to a trailer. It was like the start to a scene in a horror movie. We stood on this metal platform and it raised us up into the trailer where a man was waiting dressed in slacks and a polo (which made me highly suspicious). We stepped into the far end of the trailer in a tiny, dim lit room where he sat me down in a recliner and gave me an IV. He injected radioactive sugar into me which is the kind of dye they use for this particular imaging test versus the iodine of a CT. Just FYI. Then I just had to sit in the dim room for 45 minutes until the dye worked its way through my body. I didn’t even have cell phone service in the trailer. I was sure I was about to be brutally murdered. The actual test took about 30 minutes. All you do is lay on a narrow moving table and they slide you in and out of the machine. I coughed the whole time. What else is new.

Friday July 29th. The day of my surgery. I showed up to TMH bright and early. They did all the customary vitals checking, pregnancy test ( I had to sit with a cup of my own pee for almost an hour. Haha), yada yada yada. Then they brought me to a room. To my delight it was the little kid room so there was a Disney princess poster, Spider-Man poster and a Spongebob poster. I watched the Disney channel the whole time I was there.

 

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Numerous people came in to talk to me about what was going to happen that day, I got an IV, I had to wear the dreaded hospital gown without any underwear and got awful swamp butt from it. They finally came and got me and took me down to the holding area for the “operating theater” which makes me think of a serial killer. I watch too much SVU and Criminal Minds I think.

My favorite part is when they push the loopy medicine that makes you the equivalent of wine drunk. I was talking to my mom when it hit and I just started blinking a lot and talking very slow like Samantha from Sex and the City. I don’t remember much after that except for getting to the operating theater and having to slide myself over onto the operating table and realizing my whole white butt was out for the world to see. I was too drugged to even care. I still don’t tbh.

I woke up in recovery next to curtain. Who ever was on the other side was snoring SO.FREAKING.LOUD. I thought it was the most hilarious thing coming off of anesthesia so I was laughing so hard. I got many weird looks for that. I also got the hiccups. They brought me back to my princess room where mother was awaiting my arrival. The pain started hitting so they gave me Percocet and then I took a really nice nap. Overall, surgery wasn’t too bad. I’m still really sore today but the drugs they give you make up for all that. Sorry, Mom.

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For those who are unfamiliar, some chemo drugs are super toxic (duh) and if they leak into your tissue you could possibly have to have things amputated. To avoid this they put in a port. Mine is called a Power Port. Sounds fun, right? Its a little rubbery device that is right under my skin in my left chest above my heart. A catheter that is attached is threaded  into one of my central veins. So when I go for treatments or for lab work, they just pop a needle into the rubber thing instead of having to find a vein each time. It hurts right now but it’s actually a really cool thing. Modern technology meets modern medicine. Unstoppable.

So. Now we are up to today. August 1, 2016. I had an appointment with Dr. Russell today. Here is the low down. I am Stage 2 Unfavorable. I kind of want to get that tattooed on myself somewhere. Anyway, the thing in my lung is a big deal. It is very active and aggressive so I will most likely have to do radiation. Chemo will either be eight treatments over four months or twelve treatments over six months. Then the radiation. I start chemo this Friday the 5th at 8:00am in the Infusion Center. I can’t promise I won’t cry that day.

 

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8 thoughts on “Symptoms That Lead to a Diagnosis.

  1. Your strength is such an inspiration! We are praying for you and your sweet family. Thank you for updating us on your progress and in allowing us to be part of your journey. God is good, and we know that you are securely in His hands. Love you Cait💞 Wallenfelsz family

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  2. Caitlyn, I am so very very sorry to hear this news. I’m sure you are probably experiencing a wide range of many different emotions. I’m so glad God has placed a wonderful family & friends to support you. Thank you for sharing your heart and being so open to share your journey. I have many precious memories of you in Girl Scouts & at Celebration while you & Emily were growing up. I will be praying for you, sweet girl ♡ Mrs. Mooneyhan

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  3. The infusion center is an awesome place. I have many friends that work there and I promise you they will love you and take care of you as if you were their own sister mother or best friend. I’m so sorry you’re having to deal with this but I know God has you in his hand and will keep you safe and strong all you have to do is ask and will give. I will keep you in my prayers even though I do not know you.

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  4. Thank you for sharing your journey with us! I love that you still have a great sense of humor. Try to stay positive. Cry and scream when you need to. Take care of yourself mentally. I know this will be a long journey but I am so glad you have a great spirit and amazing support system!

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  5. Caitlyn, I kept seeing things on FB and it sounded like it was YOU. I did some investigating and found your blog. So sorry to hear what you’ve been through and all that is ahead. You have a great family and many friends that love you and are praying for you! God hears our cries and He understands our pain. May the Lord strengthen and encourage you daily through doctors, nurses, technicians, family, friends and His Word. We love you and you will be daily in our prayers. The Goodin Family

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  6. Hi. As a fellow HL club member all I can say is that yes it is scary but you can do this. And you might not lose your hair on AVBD. Lots of us don’t. I didn’t. It did get thinner & I got it cut really short so it wasn’t as noticeable. My best wishes.

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