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.
“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?” BastilleFebruary 5, 2014
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.
In reference to #13 (each person hears different things), I highly recommend another set of ears for any important doctor appointment. As a patient who has had ongoing chemo for over 3+ years, I definitely hear things differently. My chemo fogged brain or living in pain causes me to definitely hear every other word. On Thursday, my doc arrived to review the lovely checklist that I created. My mom came too. As my doc reviewed the list, I heard, “blah, blah, blah” and next drug has these side effects, surgery, moving to another city for a trial…all info created a bubble of anxiety which made me feel that I was in a tunnel. Meanwhile, my mom heard that there are options and Jim heard that there are still many items outstanding which require follow up, but due to the holiday we have to wait another week. We all heard the same thing about next week. Next week will be the week to know if this drug is providing any bit of disease stabilization. If not, the next drug option would be an every single day chemo. Hmmm…I cannot think about that now. I remind myself that I must stick to the one day at a time.
Before chemo, my niece along with my sister created an amazing carnival of activities for our New Year’s Day party. It couldn’t have been better. Such special family moments of playing, “who is smarter than a 5th grader”, making a mask photo booth, writing a letter to our future 2015 self (I passed on this activity since I cannot think about tomorrow), pick a name from the basket and tell of your favorite memory of that person…and much more. All so creative and all was so meaningful. I enjoyed every minute.
After chemo, I talked to the palliative nurse who gave me some ideas on how to manage things without a ton of drugs. Mostly, she was amazed with my attitude and perseverance. She reminded me mostly of quality of life and making the most of my day, hours, and minutes. She will call me in a couple of weeks. I cannot even think about the couple of weeks. Deep breathing, looking at the wispy clouds in the sky, and seeing the palm trees in the wind, I miss my family who left yesterday. I will find my sunshine and hope you find yours. Instead of your new year’s resolution, why not find your idea of the year that represents you and stick to it. Weight and fitness seem to be so unimportant (especially for me since keeping on weight means staying alive). What about sticking to the simple important priorities like family, friends, and just plain ole’ enjoying your day? What about being kind to others (meaning everyone: on the road, off the road, in the store…)? What about NEGU as it applies to everyday living? What about not stressing about the silly things? What about living in the present? I am asking you to find the idea for 2014 and stick to it. My idea is NEGU and even more focus on enjoying the moments. Take a look around, there is so much to enjoy. Today is now. Yesterday is gone. I find my joy in the simple things and hope you find yours.
Lessons Learned Living with Cancer (but can work with any chronic illness)
1. Be your own advocate BYOA
2 mistakes happen
3. Take control of your treatment TCT
4. Drug dosage based on 200lb man, you may need to adjust
5. Sometimes there are no answers
6. Living with the unknown, part of the journey, try to accept it and live in the present
7 it’s okay to visit the island of negativity, but make sure it is a short flight
8. There is always someone sicker than you, dying today, yelling for your doctor’s attention, so choose to be demanding at the right time
9. Nurses are the best source of info
10. Ask questions, don’t be afraid
11. Ask for help, to friends, neighbors, co-workers,
12 for you to succeed, you can’t do this alone, this journey requires you to get help,
13. Take notes and have someone else present, each person hears different things.
14. Eat and drink, whatever, whenever, your body needs fluids and nutrition to fight the cancer
15. Seek out 2nd, 3rd , 4th opinion, you can learn something from every doc.
16 use your time wisely and save your energy for what is important to you.
17. Think outside the box, have an oncologist who thinks the same way or find a new one.
18. Find your style, dress for a successful chemo! Mind over matter.
19. NEGU: Never Ever Give Up
20. Hope is a 4 letter word, so never lose hope
Best medicine ever! Love my creative sister! Love my Cheer Squad!