A random list of thoughts about cruising with cancer:
A random list of thoughts about cruising with cancer:
A quick update…since my lovely anaphylactic reaction to the chemo on 3/12, trip to UCLA trauma via ambulance (vaguely remember good looking paramedics?!), I am now back in hibernation with .03 white blood cells to fight any infection. I know the routine: hibernate, mask, no raw fruits, no vegetables, and hose off any middle school child who lives with me! Tomorrow, I will go back to Hoag to check my blood again. In the meantime, there are the usual threats of antibiotics and lock down in hospital. I don’t fall for that trick, so I remain at home with no more episodes of anything to watch. I watched it all during the last 3 week lock down. This time we have no time for 3 weeks and I took a shot to boost the white cells equivalent to 10 shots, so I can exit the house asap! I MISS PEOPLE! (Okay, truth is that I only miss some people since I still like to avoid emotional vampires and I have zero tolerance for negativity.)
My organization has gone out the window, so I have time to fix that. My analysis paralysis continues of all my data of drugs. With the allergic reaction, I had to toss out a class of chemo drugs which used to work great for me. I was given a drug combo which I had about a year ago (even had it in Waikiki to be exact), but my bone marrow needs a giant break. I am really a chemo poster child. I know how to deal with all side effects of dozens (okay 20 different chemo combos) of drugs and manage to have a life. I cannot call it a normal life, but it is my life and I love every minute of it. So, you know when I read in Oprah magazine that a woman is giving up after only one year of chemo, I scream at the magazine, “are you kidding me?” Unfortunately, as a chemo poster child, I hear it all the time. I know how difficult the drugs are and yes, I would rather have hair and not have constant gastro issues. I would like to taste my food, but we eat with our eyes too! I have lost track of how many weeks I went to Hoag or UCLA and lost track of the number of times I am asked the same questions about my nausea or lack of appetite. These maybe should be revised for me. Not sure what the series of questions I should be asked. All I know is that I am not 90 and don’t enjoy talking about all my bowel issues. I am living every day to the max, so I would like a new question/reward system. I am still looking for a reward system or punch card system. Congratulations you win a FREE tshirt since you have completed this drug combo and answered 4 questions about nausea and diarrhea!
My last comment is about nurses! You know I love my nurses, but when I meet one who decides to tape my breast (my entire breast) when accessing my port, there is an issue. A small square inch of non adhesive tape is all I need. I am not expecting to do skin grafts on myself. I want another nurse. If I tell you that I don’t want a nurse, I don’t want a nurse. What is with the questions or putting it on me that I am “difficult” or calling me PIA (pain in the ass). Call me what you want, but how about focusing on my experience? I am a professional patient approaching 4 years of treatment. Besides not getting a tshirt or a punch card, I have high expectations. I know my “stuff” and I’m not afraid of information. Maybe if you are afraid of telling me, you may want to choose something other than oncology. There are major warrior nurses! When I meet one that doesn’t meet my criteria, I am not sorry. Too bad too sad, but I have things to do even if it is hibernating. So, off I will go back to my hibernation zone with positive thoughts of white cells growing, growing….and on count down to exiting!
Over the past 3 weeks, my body has been unstable with lack of immune system and now lack of red blood cells. My thoughts are foggy as I completed the 5 days of chemo. This will be followed by next week at UCLA.
My only way to sort my weekly thoughts is to categorize them. It may not make sense, but it is the best I can do now.
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.
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.
My new lessons learned are: it takes a village to survive cancer and know your history because your life depends on it! I am sure I realized this before, but I am often slapped in the face with the reality.