Archive for February, 2014

No immune system! WBC dwindling BUT tumor marker GOING down!

February 23, 2014

I am entering week 3 of isolation, mask wearing, and hibernation. This has never happened to me. The chemo on the 12th was more than difficult. The chemo ate my blood cells and some cancer too! Finally a beginning of a downward trend with my tumor marker. I think my body found the entire allergic reaction and druggy experience unacceptable. I haven’t felt right since then, but found out last Monday that my counts were horrible or non-existent. I was told by my nurses and doc to look for signs of infection. No fever, but be on the look-out for violent shakes and chills. Without any white cells to fight infection, a fever would be unlikely. There was talk of real isolation in the hospital. Luckily I had some private coaching and assured my doc that I would not eat raw fruits and veggies, wear a mask, stay home, and avoid my husband and Alex. Luckily I still have my hearing! I can still hear conversations between my boys, laughter, and even a Skype call where Alex turned his face into a cat with much laughter on both sides. We are all in isolation with Alex going to school and coming home as a potential carrier. He understands the danger. We speak behind doors and use technology of texts and emails. I continue to take shots to boost my counts, but after 8 shots, my count only moved from .03 to .04. You would have thought my counts were normal as the nurses cheered at Hoag that my counts did not fall to zero. After another conversation with my doc, he told me that I can expect to skip chemo next week. We want my counts to be normal because more chemo means more disappearance of my immune system. The unfortunate thing is that my body is in slow motion and fog. It just isn’t working right yet. No reading, no cleaning, no speedy tax prep, just sloth like behavior watching movies or tv and much rest is my routine. So, here I remain in hibernation/isolation. Tomorrow, we will check to see if things are turning around. If I am unable to get chemo, I just have to focus on healing my body. I wish I could say more, but I am out of balance without my immune system. More sleep and dreaming of sunshine in the days to come.

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Another allergic reaction…back to UCLA on Weds

February 11, 2014

I just looked back at my description of my allergic reaction in 2012. This was similar, but worse in many ways. The chemo drug requires 3 L of fluid and the fluid was going in, but not coming out. This was the first problem as my nurse explained that “old people” have this issue. I am a 90 year old in cancer body years.  My stomach was distended which we did not notice until later. It all began with a wave of nausea, so I took a pill for that only thinking that it may help. Then, chest pains began and I called out to my nurse. My mom saw a rash creeping up my neck with splotchy dots the size of dimes on my chest. Mom sent a text to Jim to come too (he was on a call for work). Next thing I know, I had 5 nurses, a call to my doc, push of lasix to get the fluids out, plus steroids and push of benadryl. It was a long 15 minutes, but lasix finally started working. In the bathroom escorted by my nurse and mom, I saw the rash was now descending like a huge blotchy sun burn even on my legs. The chest pain continued and the rash burned, plus a few other issues. Things were not resolving as fast as they should have been. I couldn’t talk, but called out new symptoms while telling my heart to calm down. I was also on oxygen. I love nurses especially my infusion nurses. They worked like a well oiled machine speaking in codes with a responsive rhythm always calm and focused. I kept looking at their faces for answers, but no one was stopping this rhythm until my rash, BP, chest pain resolved. It seemed to be hours, but was about 30 minutes or more. Finally, relief and I could speak and almost smile. My doctor arrived to see me this way and I later told the nurses that I bet he thought we made up the whole story to get his attention since things hardly looked that bad! Then, decisions needed to be made. Do I want to continue this chemo? I looked at the audience of nurses, Jim, and mom who were mostly shaking their heads, “no” and I said that is not what I want to do. Instead, we will try on Weds a drug in the same family with different fun side effects hoping it will work and I won’t be allergic to it. I also have a side problem of having no white blood cells or neutrophils to fight infection. So, I will live in the bubble today. This doesn’t mean I cannot go in the car like a dog with my head out the window. My head is full of fog from all the drug pushes from yesterday. My body aches from the shots to increase my white count, but there is sunshine today. I will find mine. Hope you find yours!

By the way, for a laugh yesterday, Alex called us during the crisis. He heard what Jim said, but once he knew I was fine told Jim about his pop quiz which was his crisis. Glad to know that he wasn’t worried at the time.

“But if you close your eyes, Does it almost feel like Nothing changed at all? And if you close your eyes, Does it almost feel like You’ve been here before? How am I gonna be an optimist about this? How am I gonna be an optimist about this?” Bastille

February 5, 2014
Finding my balance, finding my perspective, I was lost when I heard that my tumor marker hit an all time high of 1470 on last Monday. I did the usual analysis only to find that the data wasn’t giving me what I wanted. Each time over the last 3 plus years when I received chemo, my tumor marker always fell even if just a few points. This wasn’t the case. I analyzed my symptoms comparing anything new. I looked at my notes. I was listening to my body, but it was whispering to me. Some symptoms gone and some new symptoms, but what did it all mean? I contacted my doc who decided to move up my chemo and also schedule a procedure to attempt a biopsy and drain the ascites. I never asked enough questions still feeling the weight of confusion of unclear symptoms and cancer growth. My mom arrived for the week. My usual refocusing or redirecting or even trying to detach myself from my discomfort wasn’t working. Every morning I was withdrawn from my circle of love and confused from my body whispering. I was foggy even though each day I found some happy moments. When overwhelmed by my new discomfort only described as heaviness, I was unable to push my awareness away for long moments. The routine that we attempt to maintain for Alex’s sake seemed to exhaust us all. I was happy to have my mom here to push me to enjoy each day something only explained by a mother daughter relationship. Words unspoken, but understood. Less stress of having to explain my thoughts, I felt alone, and wanted at the same time to escape. Not sure where I would go, but it all seemed too much. The confusion by the consistent unexplained caused me to be more withdrawn.

Arriving at Friday, I was definitely not asking the right questions when the doc explained the procedure to us. Lucky for me, my team of Jim and my mom added important information that I forgot. Hours and hours passed. Unable to find the right non allergic adhesive for my port, I had some itchiness. Each step was again a reminder that you need to always have someone by your side. I was pushed on the gurney to the procedure room and there was someone else in my room. I joked that this must be a 2 for 1 day, but all seemed to be confused. I wondered if the person on the other gurney was awake enough to know what is happening. I wasn’t hooked up to any sedation drugs yet. First, the Female Fellow walked in and all I can say is that I blocked out her name because #1 she had zero bed side manner and #2 she wasn’t the doc we all talked to for over 30 minutes in pre-op. She annoyed me with her attitude towards my questions. She annoyed me with her confidence which had no connection to me as a patient. As smart as she was, she was stupid in knowing what a cancer patient needed to hear. I demanded the first doc, I demanded the chair doc who my oncologist expected to do the procedure. As expected, the attempt for this biopsy was not straight forward. She casually explained what she would recommend which sounded like a major procedure, invasive, requiring much recovery, and she said it as if she was just going to brush my teeth. No big deal to her. I demanded to get answers from my oncologist, asked to call my husband, and thrilled I could get my act together to stand up for myself. My oncologist arrived and this long story short turned into having no procedure done. I have chemo on Monday and this procedure would not yield enough tissue safely to help me in any way. I was thankful that my oncologist was there. So, what ends up to be the longest day ever resulted in no clear answers again. The only news was that I had more pelvic ascites, but I never asked if this could explain my new symptoms. We left at 9am and returned home at 7pm. Lucky Alex was taken care of, so he had no idea about the saga.
Monday: I was exhausted. Was it due to the fact that it took 3 calls from me, 5 calls from Hoag, plus an email from my oncologist to get my order right for Monday from the local oncologist? Was it due to the fact that my 8:30 appointment, turned into an appointment starting at 12:30? Lastly, was it the fact that in 10 minutes I missed the mistake that I was given double the dose of  IV anti nausea meds? Just what I needed was an overdose of anti nausea meds. My favorite mixologist pharmacist attempted to lighten the mood by first saying he told them I don’t usually get that and that I will have a bad hangover headache which will now require more meds like Ativan for the anxiety and oxycodone for the pain?! I was beyond reacting telling myself that any energy required to address this should be reserved for Alex in a positive way. My silence had a greater impact with numerous apologies and recipes to avoid the constipation caused by this accidental overdose. Then, my tumor marker was even higher from Monday at 1700 (norm is 35 and my norm we think is 13) and now record breaking for me in the over 3 years of treatment. Shock, disbelief, and frustration barely describes what I was feeling. I was numb to this news and confused. Jim provided constant reassurance even though there were words unspoken for what this could mean. I know both our minds wander to what this rising tumor marker could mean. Instead, my rock star husband made a list of next treatments and focused on all things positive for me. We scheduled a call with my oncologist. Before the call, we decided that I must continue with this next cycle of treatment to know if it is working. We also decided that to be smart I will need another scan after that. My oncologist agreed and was equally agreeable with Jim’s list of next ideas, plus he will attend a conference this week and find some more ideas. So, we can do what we do which is take things day by day. Find the happy moments in these cloudy days and appreciate every single day no matter what!