I like writing my blogs in order and there are a couple that I would like to write before this but it's important to me to write about what happened yesterday, so here goes.
My brother and his family left on Sunday afternoon and I was feeling fine. I was recovering from chemo at a normal rate. Wasn't eating much or drinking much of anything for that matter. I was just happy to keep my nausea under control and to not be throwing up. It was in the evening when I grabbed a piece of ginger candy and took a small bite. It didn't agree with my stomach. I made a mad dash to the bathroom as I felt the sensation to vomit come on and that was a big mistake. Half way to the bathroom, I slipped on the carpet and face planted on the floor. I scraped my knees and took it hard on my right cheek. I wanted to laugh and cry at the same time. My sister watched this all happen and came to see if I was ok. I crawled my way to the bathroom where I proceeded to spit out the ginger and vomit. My chemo brain and dizziness were still in full effect. Once I collected myself, I went back to my room and laid down. I was feeling a bit of pain and nausea but I did my usual nightly morphine tablet and liquid morphine for break through pain. My stomach really wasn't having any of it so I missed my dose of Xeloda because I was afraid it would upset my stomach even more. I did the compazine suppository since I wasn't keeping things down.
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| Scraped up knee. No more running! |
The next morning, Monday, I woke up and wasn't feeling all that great. I had an appointment at 12:15pm to get my dressing changed so I called up the medical assistants to see if I could also get fluids and IV Zofran. Then things started to get worse. I started vomiting bile and having diarrhea. I can't take any pills or put anti-nausea up my butt at this point. Then the pain starts to come in full force. It's all over my stomach pain. It starts at about a 7/10 and is working it's way up. It comes intermittently every few minutes and it's excruciating. There is no way I can make it to my dressing change appointment. I have not felt pain like this before. I find myself on the floor of my bedroom, curled up into a ball crying. I tell my sister that I can't take it anymore and that I want to go to the ER now. If the rest of my cancer journey was going to be filled with this type of pain, I didn't want to do it anymore. I was begging God to either take me away or to help me. I didn't care what I looked like, I just put some deodorant on because I know I haven't showered since chemo which was on Wednesday. It's 12:30pm by now and my sister takes me to the ER at Kaiser in South San Francisco. Luckily I had grabbed a barf bag on the way out of the apartment. I'm puking in the car and she cannot get there fast enough. When we arrive, I had the security guard give me a wheel chair and I'm wheeled right in to check in. They check my vitals and all that good stuff and I tell them my cancer pain is horrid. They try getting me a private room as to not expose me to other people's germs so I'm staged the hallway for a minute. I sit there with my barf bag and I'm yacking. It doesn't sound pretty. Especially in those hallways. I can see the nurses working quickly to clean up room number 9 for me. Finally I lay in the gurney in my room and nurse Henry comes in to take some blood. Because we cannot get a blood return from my midline, he has to start an IV. At this point, I'm in so much pain, I don't care. On his second stick, he finally draws blood on my left hand but later I find out that the blood is no good so he sends the top notch phlebotomist who is awesome with patients with veins that are difficult to find. I forgot her name but she is very caring and nice. She finally finds a vein on my left hand near my thumb and gets a blood draw. She agrees that I am a difficult draw but to remind phlebotomists in the future that the vein she used should be a good one since it's a fat vein. Good tip. I'm still feeling nausea and vomiting and remember now, I have diarrhea, too. I couldn't control it. I felt it. I pooped my pants. I have my barf bag in front of me and my sis standing next to me trying to comfort me and I tell her, "Great, I just pooped my pants." We start to laugh. The force from the vomiting caused me to not be able to control my bowels. I'm actually quite surprised this didn't happen sooner. I ask my sister to let Henry know that my linens will need to be changed. In the mean time, I have my sis take me to the bathroom so I can clean up and throw away my undies. When I get back in the room, Henry has removed my old linens and hands me a bag for my pants and top since I'm now wearing a hospital gown. I ask my sister to grab me a piece of gum from my purse as my mouth tastes like utter hell vomiting all that bile. I take a few quick chews before I spit that out.
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| Trying to sleep after getting pain meds. |
I'm laying in my bed in pain and I ask them to get me something ASAP. We start out with morphine through my IV and that seems to work for about 10 minutes. The pain is less now but it is coming back more frequently. My ER doctor, Dr. Ma, decides it's time to try Dilaudid which is about 7-10x more stronger than morphine. The pain is finally gone. And it doesn't have me falling asleep or feeling loopy. I really like Dr. Ma. There is a gentle warmth about her and she tells me that she wants to send me to x-ray to see if there is anything blocking my intestines. The tech comes over to wheel me to x-ray and I ask if I can get some pants or something to cover my butt since I'm naked under my gown. They hand me another gown and I wear it backwards so that it looks like I'm wearing a muumuu type gown. I just don't want to flash anyone. I take 3 x-rays and I hear the tech say that I'm completely empty. Doesn't surprise me as I have not had anything to eat in 24 hours and I've been vomiting everything. I head on over back to room number 9 and Henry is now gone for the day. I have a new nurse named Julie and she turned out to be a real gem. Dr. Ma enters the room and tells me that my x-rays look clean and that there were no blockages which is what she was looking for. This is a good thing. She continues to tell me that my potassium is low and that they will be hooking it up to me via IV. I'll also be taking home a prescription where I'll be taking one tablet of potassium twice daily. If you've ever seen potassium pills, they are huge! At this point, I'm taking fluids, Zofran, and potassium through the IV in my hand and Julie asked if we could use the midline on my arm to speed things up and with Dr. Ma's permission, she switched the infusion from my hand to my arm.
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| I'm smiling but I'm not feeling chipper! |
I've lost track of how long I've been in the ER by now, I think it was now 4pm and it didn't seem like it to me. Julie brought me some ice chips to work on ingesting something by mouth and then later I could try saltine crackers. The Dilaudid seemed to be my miracle drug. I lay in my bed relaxing and trying to get some sleep. I am really glad I had a nurse like Julie. She was just absolutely amazing. She was very knowledgeable in pain meds and answered all my questions. Dr. Ma came in to give me my paper prescription for the Dilaudid that I will take home and she gives it to my "mom." Inside my head I am cracking up that she has called my sister my "mom." She then says that Dr. Dilda will be my new doctor. Again, I think I am hearing things and I am holding back chuckles in my head. I thank her for all she has done for me and she leaves. When Julie comes back into the room to check on me, I ask her to clarify the name of the next doctor. She looks into the computer and says, "Oh, you dirty birds." My sister and I start cracking up. Just wanted to make sure the pain meds weren't making me loopy and hearing things. Dr. Dilda comes into the room to introduce himself but pretty much Dr. Ma has controlled the situation and nurse Julie is driving the ship. I don't really need him, he's just the one who will give the ok to discharge me. He says I'll finish my bag of fluid and if I'm feeling good, then I can go home. I try eating 2 saltine crackers and they seem to go down ok. I'm feeling proud of myself for a couple of minutes and then the stomach pain returns and I realize that I'm just not quite ready for solids yet. Now I know that I'll be on a liquid diet.
It's about 6:30pm when I am finally discharged and I can't believe that I've been in the ER for about 6 hours. It really didn't seem like it. Not when you're in that much pain. My sister had gone to the pharmacy for me to pick up all my meds (the Dilaudid, potassium, and also sublingual Zofran). She also picked me up some Pedialyte popsicles. Nurse Julie handed me some disposable paper pants that I get to wear home since my undies are now in the garbage from my pooing incident earlier. I check out and I wait by the door for my sister to pull the car up front. The wheelchair is now my friend. I'm very exhausted and weak and all I want to do is get home to rest. Part of me wanted to remain in the hospital where they can take care of me but then part of me wanted to go home. I'm much more comfortable at home and I'm not exposed to all those germs that a hospital has.
I slowly walk up the two flights of stairs it is to get to my apartment. That's going to be a problem if I plan on using my wheelchair more often. I change into my pajamas and hop into bed. I set up my nightstand with an assortment of fluids I can drink and all my meds. I'm concerned that I haven't taken my Xeloda for the past 2 doses and manage to get it down. I still have to take my chemo pill and fight cancer even though I may not feel up to it.
I'm hoping that this has just been a yucky reaction to chemo #8 that I had on August 1st. I don't want to believe that my cancer is getting worse or growing but I know that it is a possibility. Just a week ago I was feeling great and eating. Things can change in the blink of an eye. I have my PET scan scheduled for August 20th and I'm very anxious for it. This will tell us if the chemo is working or not. If it's not working, we will switch to another regimen. If it is working, we will continue. And I'm afraid to continue. This is so hard on my body. It just seems like it's getting worse and worse. I am putting my body through hell and I don't know if it's worth it or not. There is no cure. There is no guarantee that this chemo will buy me more time. I have to think about what I'm doing here. I won't give up but at some point, the chemo will no longer work and I will have to choose quality of life over beating up my body with treatment that I'm not responding to. I've thought about hospice care. Just living my life out. But I know what makes me want to throw in the towel is the side effects. The one thing I cannot stand is the pain. I am a tough cookie and will endure it till I am on my last leg but I know there are tons of drugs out there that can help me manage it. Same thing with the nausea and vomiting. I'd rather be cooped up in a hospital managing those side effects than to be at home enduring the pain. I'm not going to give up that easily. And I feel so bad for my sister. She has to watch me go through this and there isn't a damn thing she can do for me. I never want to feel that pain again.
The next day, Tuesday, I went in to the infusion center to get my dressing changed. I couldn't even stand in line. I was so weak. Luckily, the medical assistant, Latishma, saw me and told me to sit while she took my Kaiser card and checked me in. I couldn't help but to break down and cry. I was so exhausted. I had thrown up that morning and I knew I was dehydrated. I asked her if my oncologist was in (because she had taken a few days off) and luckily she was back in the office. I saw my doctor first and told her how I was now on Dilaudid but I was getting break through pain and that I was really tired. She decided to put me on the fentanyl patch now which is a patch that I change every 3 days. I hear it's strong stuff but I'm still getting some intermittent pain where I have to resort to the Dilaudid. She also set me up with some fluids and IV Zofran while I got my dressing changed. I can feel the fluid in my belly starting to collect. I haven't been eating anything in days and yet I'm gaining weight. I'm too afraid to take anything by mouth, which included Lasix, so I'm thinking paracentesis might be a good option for me later on this week.
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| Nurse Pauline changing my dressing. |
My mind is exhausted. I try to sleep if off only to have these crazy dreams and breakthrough pain. I am really praying that this is a bad reaction to the chemo. I don't want this to be a sign that I am dying. That chemo is not working, and that cancer is winning. I'll never lose my battle with cancer because I did get those precious moments with my family and friends. My life just wasn't meant to be lived as long as everyone else's. And I don't know why I got chosen to get cancer. Why God thought that I was strong enough to endure this roller coaster that cancer is. I think the sucky part is that my mind and major organs are all running in tip top shape. Before I decided to go to the ER, I knew I wasn't dying. My brain was 100% coherent. I was just having a lot of pain. And after the labs, I found out my kidneys and liver are doing great. Basically I'm physically not dying but part of me wishes that we could just get this over with because I'm so tired. I really do not know how much more I can take. It is draining me to my core. I've already asked God for forgiveness and to heal my body. But yet, I still feel pain. I still throw up. I don't know what it all means. What works and what doesn't. I try and take suggestions from my fellow warriors and caregivers and I'm still miserable. Something has got to give. I go in for more IV fluids and Zofran tomorrow. I hope this does the trick. I really need to start feeling good or this chemo #8 in addition to my next PET Scan results will weigh heavily in my decision to continue treatment or not.
