Bumps in the Road

These past two weeks have been really testing my strength.  When I went to sleep on Sunday, June 3rd, I had a hard time.  My left lung had so much fluid in it and I couldn't lay on my back to sleep. I had to sleep on my left side.  At this point, the oxycodone was not helping relieve my pain and neither was any of my anti nausea medication.  The next morning my brother and mom were flying back out to Seattle.  I was debating on whether or not I should go to the ER because in my head I was freaking myself out that my cancer was growing.  But I told myself that I had to tough it out until the morning when I could call my oncologist.  Monday morning finally rolled around and at 8:30am sharp, I called my oncologist.  I spoke with the medical assistant and told her to have my oncologist call me because I was in a lot of pain.  Janet, my friend/niece that stays with me, took my family to the airport and I somehow managed to fall asleep.  I woke up at around 10:30am and I realized that my oncologist still had not called me.  I figured Monday's are probably most crazy for her.  I had a friend stop by and drop off some weed brownies.  I was so grateful.  We chatted for a minutes and when she left at 11am, I called my doctor again to see what was up.  The medical assistant told me that my doctor was just very busy but she would remind her.  At this point, I was in so much pain that I just decided I would head to the ER.  I had Janet drive me in and on the way, I called my oncologist again and left the message that I was headed to the ER because I couldn't stand the pain anymore.  Luckily, when I was about 3 blocks away from the hospital, my oncologist finally calls me back.  She apologized for the delay but gave me a couple of options.  I could go to the ER if the pain was excruciating, or I could head to the Radiology department and have a CT scan done.  She wanted to do a scan of my abdomen to see if we can find the answer as to why I was suddenly having uncontrollable pain.  I figured I could tough it out a couple more hours so I head to Radiology.  I check in and get called to the back shortly.  A tech comes out and tells me that I have to drink a little jug of solution.  Luckily it only tasted like water but I had to drink it all in 15 minutes.  And I had to go pee every 10 minutes.  Tech said he would come back in an hour to check on me.

Feeling miserable and waiting for my CT scan

I finally get my IV in and go in for the scan.  I lay on the little bed.  This is very uncomfortable for me since I know I have fluid in my lungs and its causing me to be short of breath.  The scan begins and I get slid in and out of the donut shaped machine.  Then the point comes where the contrast is injected into my IV.  This was painful.  It stung my arm but I bit my tongue and waited for the procedure to be over.  I waited outside the CT scan room while the radiologist looked over the scan.  I also had to wait for them to speak with my oncologist to see if my IV could be removed.  I received a call from the medical assistant who told me to have them leave my IV in and to head on over to the oncology center when I was done because I would receive fluids and IV Zofran (anti nausea) there.  One of the techs walked me over to the oncology center and nurse Pauline led me to a chemo chair.  She hooked me up to the machine and started my fluids and Zofran.  She said she would be giving me a subcutaneous shot of morphine for my pain.  I asked if my oncologist was around as I wanted to speak to her.  A few minutes later, she appeared.  She told me that she had some news from the CT scan.  She told me words that I dreaded hearing.  My cancer had grown.  That's why I was experiencing pain.  During the 2 weeks that I was off of chemo, cancer saw this and took advantage and started growing.  My oncologist felt my pelvic tumor and agreed that it did feel bigger than at our last appointment.  I knew it had grown.  I would lay in bed at night and feel it.  It felt bigger to me.  I didn't cry.  I didn't show emotion.  Deep down, I was secretly pissed.  My oncologist explained to me that we would have to stay on a strict chemo schedule so I wasn't allowed anymore chemo holidays.  No problem.  I'm ready to kick this jerk in the nards!  The scan also showed that the fluid in my lung had increased.  So I no longer had a small pleural effusion in my left lung but it was now large.  That is why I was getting short of breath.  I was to continue Lasix but if that didn't help, then I would have to get my lung drained by a procedure called thoracentesis.  I was not looking forward to that.  I physically started to feel better and my doctor was now taking me off of Tylenol 3 and oxycodone for pain and switching me to morphine.  I was also now doubling my dosage of Zofran at home to help control my nausea. I was now up to 80 mg of Lasix to help get the fluid out of my belly and I can continue to use that.  When 5pm rolled around, Pauline took my IV out and sent me home. Janet and I stopped at Hooters to grab something to eat as I hadn't eaten anything since last night.  When you feel miserable, you don't want to eat and now that I was feeling good, I was going to take advantage of it.

The bruise I got from my IV from the CT scan. 

The rest of the week, I spent it on the couch catching up on my DVR.  I devoured my weed brownies.  They are the best thing for stimulating my appetite. By Thursday, I started developing a pain in my right jaw and clavicle.  When I would eat something tart or sour, I would really feel the pain.  When I tried eating my pizza for lunch, it was getting stuck in my throat so I drank some water to wash it down.  I then started coughing and all of a sudden my lunch came back up!  I had to change since I had thrown up on myself.  On Friday, I had nothing planned but had to stop by the lab to get my Coumadin level checked.  I showered and then started to get ready.  I was applying my make up and then suddenly I started to feel sick.  I had taken my anti-nause meds at about 6am and hadn't eating anything since I wasn't feeling hungry.  I sat down and took a break.  Next I had to RUN to the bathroom.  I started vomiting uncontrollably.  The nausea was horrible.  I was now concerned that I wasn't going to make it out of the apartment.  I ended up vomiting a good three times before it finally stopped.  I had tried taking some Compazine (anti-nausea) when I thought I was done throwing up, but since I wasn't done, the pills just came back up.  I was able to finally make it to the lab.  The phlebotomist took a look at my arms and suggested she use a very small needle on the inside of my wrists since I was all bruised up and she couldn't find any of my veins.  I agreed.  The poke didn't hurt but I noticed that as the blood was being drawn, the poke site started to puff up.  I think this is infiltration and it's not a good thing.  She pulled the needle out and luckily had gotten enough blood.  She bandaged me back up.  Later on I was so mad because my wrist hurt and I ended up getting a very bad bruise on my wrist!

Horrible bruise that hurt!!!

I emailed my doctor to let her know I was having a bad episode of nausea and vomiting and asked if there was another option of anti-nausea, like a patch, since I wasn't keeping anything down. I also told her about the pain on my right clavicle and jaw.  She wrote back to me explaining that the pain sounded like bony pain caused by the cancer.  I'll take that.  I kept telling myself that it was my cancer spreading and scaring myself.  She ordered me some suppositories that I can take for the nausea if I was not able to take oral pills. Yuck.  I did not want to put anything up my rectum but at least I had that option.  She also told me to come in to the oncology center and she would hook me up with some fluid.  My sister had came over to deliver her recliner that she was letting me borrow and I had her drop me off at the oncology center.  I had nurse Elsie and she had a hard time finding a vein to put my IV in.  While I was in the chair, I emailed my doctor and asked her if I could have a port and she agreed and said she would send a referral to Interventional Radiology.

Another reason why I need a port.

That weekend, the pain in my jaw started to migrate down to my neck.  It got to be very painful and I couldn't move my neck much.  It was also hard for me to swallow as this caused more neck pain.  When Monday rolled around, the right side of my neck was swollen and I noticed that my veins were looking very green and visible.  I couldn't see the veins on my left side.  I was moving somewhat like a robot and the pain was at an all time high.  I wasn't eating much and I was short of breath.  I had a 10am therapy appointment, a blood draw for my Coumadin level, and also a chest x-ray to see if there was enough fluid in my lungs to be able to do a thoracentesis.  I also emailed my oncologist to let her know that the pain in my neck was worse.  I didn't think this was bone pain since there are no bones in the neck other than the spine.  I went to my therapy session and afterwards I checked in at Radiology.  While waiting for my name to be called, I made a quick phone call to the oncology center.  I spoke with one of the medical assistants and told her about my neck and that I was in Radiology if I could stop by real quick to have my doctor take a peak at my neck.  She told me to come over right away.  I rushed over and luckily my doctor was in between patients.  She looked at my neck and gave it a feel.  I told her that I was concerned it might be a blood clot.  This idea had came to me as I had earlier messaged a caregiver in one of my support groups and something similar had happened to her mom.  My doctor agreed that it looked like a blood clot.  Since I am already on Coumadin, I'm on the right track for treating it, and we addressed the pain by increasing the dosage of my morphine.  I ran back to Radiology for my chest x-ray.

My right side is swollen.  Can't see clavicle and veins are visible.

Later that afternoon, my oncologist called me confirming that I had a very large pleural effusion and that the pulmonary specialist's office would call me with an appointment for tomorrow to have my lung drained.  While I was happy to finally be getting some relief, I was so nervous to be having this procedure done since I had watched a YouTube video on it and it freaked me out.

These minor bumps in the road have really been testing me.  I feel like I've had to endure so much pain when I really didn't have to.  I'm glad I have a great relationship with my oncologist and whenever I contact her, she is fairly quick to get back to me and addresses all my concerns.  I have to admit, feeling sick from chemo and getting the blood clot in my neck did make me feel like my body is falling apart.  I was confused as to what my body was trying to tell me.  Was it that it was all downhill from here?  I felt like my time left was being drastically cut.  So much that one evening, I grabbed an old, empty notebook and started to compose a hand written letter addressed to my family regarding my final thoughts and wishes.  I told myself that this was way too early, but based on the level of pain that I was having, I knew that it was just safer to write it out now.  I wrote about what I wanted to be done to my body and what type of memorial service I wanted.  I pointed out the things of value that I own and who I wanted them to go to. I tried to keep it light hearted and threw in a few jokes.  I got the majority of what I wanted to say written down in that letter but I knew that I wasn't done yet.  So far, it's 5 pages long.  I told one of my sister's about this letter and where they would find it.  I told her that it wasn't to be read until I was no longer here.  At one point, I did take a break and a few tears ran down my cheeks.  I'm 30 and I'm writing a letter about my final thoughts and wishes.  This is my life and my reality.  I plan on fighting and fighting until the wheels fall off, but I'm also realistic.  Anything can happen to me at any moment and I want to make sure that my voice is heard and also lessen the burden for my family.  Hopefully that letter won't be read by anyone else's eyes for a VERY long time.