As some of you know, but many do not, I had the pleasure of enjoying an unplanned 8 day getaway to my local hospital. My day started out normal last Monday. I got up, showered, and headed out for chemo. When I got there, they told me I had a fever…funny, I did not feel feverish. I told them I did not feel hot or unwell. They checked me again, 103 degrees. Dang! Next thing I know there are 2 cops wheeling me off to the ER. I couldn’t escape if I wanted to. 😒

Before I move on, I should fill in the gap between my last blog.

May was a whirlwind of graduation and senior year activities. However, I noticed the neuropathies getting worse and an increased weakness in my legs. My legs had gotten so bad, that I could not put any weight on my right side. I literally have to pull myself up the stairs. Yes it’s hard. Yes, it’s exhausting. And the neuropathies had developed into their own little monsters. My feet would cramp, my hands would get stuck somewhere between open and closed with shooting pain all the way up my hand and arm. It was crippling. Nothing was worse than my jaw though. If you saw me at Alex’s graduation party, you may have caught a glimpse. I would be in the middle of eating, talking, or just doing nothing and my jaw would decide to lock close. Sometimes it was a slow struggle where the muscle just pulled tight and I couldn’t fight it. Other times it was like a snapping turtle, like that shark game that closes so fast you jump backwards. That was my jaw…just with tongue and cheek in the way. Blood was definitely shed on occasion. Plus, it would freak people out because I would be talking to them and then get lockjaw out of no where. They would get really nervous because they would have no idea what was happening!

By June, things had progressed with my disease. I really started to have a hard time walking, and getting upstairs became a full on event. I now had to use 2 arms to pull myself upstairs, my belly has grown so big that I can’t bend over to put on socks and shoes, and being that I am no longer balanced and have the body of someone 10 months pregnant, I began falling. Falling terrifies me as it opens the door to so many more injuries. I can feel myself going down and the only thing I always think is “ don’t hit your head” . It’s all bad if I get a head injury. Of course, I hope I don’t break any bones, but I have pulled a few muscles, earned some bruises, and have more scrapes then I can count. We did go on vacation, but I think that is when my downward spiral started. I never felt very well the whole time I was there and I learned I can’t climb into busses or vans without assistance. I fell flat on my face first time I tried. There was blood running down my knees as I walked to my seat. I fell 4 times on that trip. The best part was a spa treatment our travel agent gave us. I have NEVER had a spa treatment before, not even a massage. I need to do more things like that. It was delightful and the highlight after a bumpy week.

Have you ever felt like you just no longer have control? Like there is absolutely nothing you can do to fix something. As June closed, and July entered, my whole disposition was changing. My scans in June showed my tumors were considerably worse than March. So the immunotherapy with the chemo failed. I can’t say I’m too sad about changing the regimen. At least I get rid of the mouth swelling and best of all, the neuropathies!!!! No more lockjaw!! However, some things that I hoped would go away did not. The weakness is progressing. I now have issues with left side weakness too. Stairs are impossible. I actually broke down in tears trying to get up to my bedroom this morning. It’s so frustrating because mentally, you think it should be so easy, but it’s not. I actually fell this morning trying to walk into my kitchen. I have a sunken living room, and it’s just a little step, but there is nothing for me to grab onto for balance and I crashed backwards. That’s how bad it is. I can’t even get around my house. I honestly am at a loss. I don’t know what else to do. 

So, the other issue I have been having since mid June is that my gigantic liver is pushing up on my diaphragm causing my lungs to flatten and fill with fluid since they can’t expand. You can hear gurgling in my breathing and my voice gets really hoarse, so you can kind of tell when they are getting too full. I had them drained twice in 2 weeks and the fluid also causes quite a bit of pain. Not to mention I can’t breathe when it happens. As you probably guessed, they changed my meds again. I had my first treatment a few weeks ago and it went well. I just had aches and pains with nausea—- typical chemo stuff 😁

Last Monday was supposed to be my second round of this treatment. I had a laundry list of items I wanted to go over with my oncologist, and was very excited to see her. I checked in, they took my blood, and put me in a room. That’s when the nurse came in to check my vitals and temperature. 

I don’t know why they send cops to take you to the ER. Did they have a violent oncology patient try to escape once? Trying to envision that seeing the patients I see in the waiting room seems a bit far fetched. The nice thing is I went right to a room and they gave me a Covid test. I actually no longer had a fever. I knew I had a hard time breathing because that was on my list as it had been 3 weeks since my last drain and I was in pain and gurgly. I actually had to stop to catch my breath on my way to the office. I think I was hot from the anxiety and it went away so fast…nope, my test came back positive. I was skeptical. Jeff was skeptical. We both asked to retest but they said they don’t retest a positive test. In comes the chest X-ray. Now if you know me, you are aware that I am a firm believer in fate. Everything happens for a reason. The chest X-ray showed all the fluid in my right lung that needed drained, and it showed a pulmonary embolism in my dry, left lung. A PE? those can be deadly! Had they not done that chest X-ray, they would have never known!!! Even the ER attending came in and said if I had Covid, it is extremely mild, and they are going to focus on the lung issues. The first thing they did was drain my lung. 550ml in 3 weeks. That’s a lot for a small person like me. (Btw—I’ve lost 30lbs since January. Not healthy weight loss). The doctors realized this was not something that would go away as long as my liver continued to hog the couch. So they thought it best to install a pleural catheter so I can drain it at home. Basically, it is an external port that we hook up to a vacuum bottle to pull out the fluid. Jeff and I tried it the other night and pulled 300ml after just a week. Glad we can do this at home. For the PE, I got put on a steady diet of heparin while I was inpatient, and a blood thinner for home. Plus I had constant oxygen which they sent me home with. Not sure how I will get back to work…

Finally got released on Monday night. It was my “lost week”. The food was terrible. I NEVER got to sleep, and although I gave my self a sponge bath every day, I craved a shower. I can’t believe people who bathing is not an issue for them. I could just feel the bacteria growing on me..especially at a hospital. I feel like I lost time there. Many people reached out to me, which was so nice, but I wanted to wait to put the news out there because it was very overwhelming with just the few people who knew, so I was keeping the circle small. Plus I was hangry and miserable (mostly due to lack of sleep, or timeliness of my meds/ treatments) half the time and not pleasant to talk to. I love you all and am so blessed to have wonderful people in my corner rooting for me! Love to you all and I see my doctor Monday. Hopefully I get off this oxygen!!!!