Quarantined

Hello. Hope everyone is staying at home and safe out there. Not anything different for me and many cancer patients on treatment. We always have to be pretty much quarantined to avoid any sick people since our immune system is low. Now everyone knows how it feels for us to not be able to go anywhere, and if you do, you have to wear a mask…even though I used to not do that, but now I do for sure. I get scans tomorrow and the results on Tuesday, but right now I think I’m more afraid of getting COVID-19 than my scan results. I’m just getting over pneumonia that I got from having a simple cold, much less getting a virus that attacks your respiratory system. I don’t think my lungs are strong enough to fight a virus like that. I’m pretty stuck at home for real now and not being around people, especially those that have any symptoms. My husband is still working which I’m thankful, but at the same time I PRAY he doesn’t catch the virus and bring it home. He would most likely survive if he got it, but I don’t think I would.

I know I don’t write much anymore. There is only so much a person with cancer can write about their journey with cancer. It gets repetitive cause it’s always the same…. Get scans, get results, then get treatment. And your always sick. And like I said before, you don’t really get to go anywhere anymore without being afraid of catching some virus.

The brain radiation I was supposed to get to kill the 6 new tumors was put on hold as was the chemo treatment until I got better and have no symptoms. So I guess I’ll be resuming treatment this week now that I’m all better. I’ve been on strong antibiotics and was treated at home instead of being put in the hospital, the doctor didn’t want to admit me with all the COVID-19 business. I have a nebulizer here at home that I’ve had to use to open my airways, and I have finally quit coughing up blood, that lasted for 4 days. The congestion I had in my nose and lungs is finally gone, and I’m feeling much better. I’m glad I wasn’t admitted into the hospital. I hate being in there.

So now, like everyone else, I’m just waiting for this COVID-19 to pass so that we can all get back to normal. I miss going to the park, movies, and out to eat. Spending time with family and friends…etc.

I miss having game night with all my kids, and I miss the one grand-baby that we have here close. Shes’ growing so fast and learning new things and I’m missing it. 😦 But my kids are afraid to come over with her just in case they have the COVID-19 and don’t know it. Here in Bastrop county we are not on shelter lock down like other counties around us, but everything is closed, even the parks.

I’m really glad as a nurse that I’m not working in a hospital right now. I have 2 daughter-in-laws that do. One works the NICU (Neonatal Intensive Care Unit) and the other works in ICU. They have said how they don’t have PPE (personal protective equipment) and one of my daughter-in-laws has had to buy her own. One of my nurse friends said she received a letter from the governor of New York asking if she could go up there and work, which she said she did not respond to. I haven’t received such a letter, but I couldn’t go even if I wanted to, which I wouldn’t. I wouldn’t want to go to New York even if there was no COVID-19 going on. It’s way too crowded for my taste. I prefer the quietness of country settings rather than big cities.

Well that’s about all I have for now. I’ll give an update once I get my scan results next week.

Ciao for now.

L.

Good news and bad news

Got the results of the brain MRI today. There was good news and bad news. A note to Chelsie, Jenny, and Katy…Please don’t freak out when you read this. Everything is going to be ok. Chelsie…please don’t dwell on this and please don’t let it ruin your trip. I want you to enjoy and have the best time ever. I will be ok and I’ll still be here when you get back. I promise.

The good news is… the radiation has killed the 4 brain tumors that I had. The biggest one being 6mm is still dying by the radiation. The doctor said the results were better than he expected.

The bad news is… there are 6 new spots in my brain. Once again, they were caught really early–the biggest one is only 3mm. VERY TINY. They are going to do the targeted radiation again to kill those 6 tumors. And the doctor is expecting good results with the treatment. Bad thing is that I have to go in for mapping and the making of a new mask. :/ I dread having to wear the mask again.

This news was really hard for me to process. The doctor told me the good news first…then he dropped the bomb..after I heard that, everything thereafter was a blur. Eric was with me though for support. He always goes to the results appointments with me. Which I’m glad, cause I cried all the way home. I just wanted to SCREAM! I was so angry. I just couldn’t believe the news. I’ve been thinking so positive in hopes of bringing the positive to me….but it didn’t work. Eric says I should go in expecting to hear the worst so I’m not so let down when I get bad news, and good news will be really good news.

Whenever I get bad news I don’t want to talk to anyone. I revert into myself and I just want to be left alone to be able to process the news. That’s why my beautiful girls, I don’t call and tell each one of you right away…cause I need time to process. After you read this if you need to, or want to talk, that’s ok. I can talk now.

How am I feeling?? Well…I still can’t believe I have 6 new tumors in my brain. But I am starting to accept the fact that I do, and treatment is inevitable. I wish there was a chemo that crossed the blood-brain barrier so that chemo would not only kill new tumors, but prevent them as well. But unfortunately there’s not. So I just have to keep on doing radiation as they come. I’m also sad. I feel like this cancer is slowly sucking the life out of me. I’m constantly fatigued from the chemo and radiation along with the chemo only makes it worse. So mostly my life now consists of sleep. I’m glad I’m on anti-depressants and I talk to a therapist weekly, plus I have my faith and belief in God, all of which help get me through this Hell. And most of all…the love and support of family….my reason to keep on fighting.

I wish I had more positive things to say here..but there is nothing really positive about cancer and it’s journey.

Until next time…

Catching Up

Hello! I know it’s been over a month since I’ve written, and people are asking why I haven’t been blogging…there is no particular reason other than I just haven’t felt much like writing. A lot has happened during the last month though…I’ve had chemo flu over the last two cycles, (I’m having it now), I got sick for a week with a really bad cold, which flared up my asthma really bad, then I fell down the front steps taking my puppy out, twisted both ankles and caught myself with my hands, which in turn hurt both of my wrists. But everything got better within a few days except for my right ankle. Went to the ER and turns out I sprained it pretty bad, tore some tendons, but luckily didn’t break anything. So I have been on crutches over the last month. My ankle is slowly starting to get better, but I still can’t put full pressure on my foot especially the heel area. So I have been pretty much home bound with my ankle elevated for the last month. I couldn’t drive anywhere because it was my right ankle. I just started driving this past Monday, I had a doctor appointment in Austin.

Also I did go back to the eye doctor and got re-examined, got a new set of glasses, they worked for awhile, and once again, they stopped working for me. I called my brain radiation doctor and asked if my vision changes could be from the radiation or the tumors, cause these vision changes didn’t start until after the radiation, so he said he can tell me more after the MRI, which I did yesterday, and I see the doctor for the results tomorrow. I sure hope everything is OK with my brain. But this vision fluctuation needs to stop, cause I can’t keep going to eye doctor and getting new glasses. I sure hope we can figure out what is causing this.

My eldest daughter Chelsie is on her way to India right now to attend a yoga retreat for a month. I’m nervous and excited for her all at the same time since she is traveling solo. But that girl LOVES to travel and has no fear. I can’t wait to hear all the stories when she gets back. We had a family dinner this past weekend so everyone could see her before she left, and we will have another one when she gets back. She may not be able to text or call us once she is there, but she may be able to email. We will see. The place she is going to is in northern India at the bottom of the Himalayas. Should be a beautiful place.

Well that’s all for now…I’ll get on here real quick tomorrow to give the results of the brain MRI. 🙂

Feeling good!

I don’t have any new news to share tonight but I just feel like writing. I have had such a bright wonderful day today despite the rainy dreary day it has been all day. My spirits are high right now. I still have my brain scan to do at the end of Feb, but I’m feeling pretty confident that will be clear too. But for now, there is no radiation scheduled for the next 3 months. Yayyyyy!!!! I have had so much radiation I’m surprised I don’t glow in the dark! I’m not taking my good news for granted by any means because I know things can change at the next scan, but for now…I’m going to dwell in this moment. 🙂 I still have chemo every three weeks, but I’m used to that now. My next set of body scans will be in another 3 months. That would be awesome if those are clear too! I know that I will never go into remission, but I can go into what is called NED which means No Evidence of Disease. That means that none of the tumors are showing active. I know that can happen to women with MBC cause I’ve heard of some women with MBC that have gotten to that point. Unfortunately even at that stage, chemo still continues every 3 weeks. Why? Because doctors are afraid if they stop the chemo the cancer will start up again. So no matter what, I will be doing chemo every 3 weeks for the rest of my life. And radiation as needed.

I had my eyes checked in Oct before the brain radiation and the glasses that I got do not work anymore already. So my Oncologist sent a note to my eye doctor and after talking to him too yesterday he decided he is going to redo my exam at no cost. I believe the brain radiation, not to mention all the chemo, has had an adverse effect on my vision. I am using my reading glasses to see far, and now the reading glasses are not strong enough to see close. :/ I must need some really stronger lenses now. I really cannot see at night anymore, so I have not been able to drive. I’m usually the night driver because my husband falls asleep driving after 8 PM especially if he has a full stomach. So until I get my eyes fixed we cannot go out late at night.

I didn’t try that new eating pill today. Just in case I do feel any side effects I want to take it when I’ll be home and not have to go anywhere or do anything important. Tomorrow my new puppy goes for shots and to get chipped, then Friday I go get my eyes checked. Both of those appts are in the morning so I may be able to take it in the afternoon. My doctor wants me to take it twice a day, in the morning and in the early afternoon. So we will see how it really works!

I have a room in front of the house that has a lot of clutter that I am going to clean out and make it a craft room where I can do my puzzles and any other kind of crafts I start getting into. I’m also going to start going to movies during the day. Movies that my husband doesn’t really care to see. We have a theater less than 10 minutes away and they have matinees all day during the day. I’m trying to think of things to keep me busy during the day so I’m not so bored. Too bad it’s not summertime, I could go to the YMCA swimming pool that is up the street at the Bastrop Park. I love to swim.

I’m hoping for a better year this year and so far it has started out as one. I know I am somewhat sickly during the 3 week cycle between chemos, but at least without radiation I am not as bad. And THAT is what I’m looking forward to over the next 3 months at least. 🙂 Baby steps to healing.

I’ve been trying to think if there is anything that I have done different during these last 3 months to get such good scan results… I am on leave from work which has cut away the stress, I’ve been really sick and not eating which makes me do unintentional intermittent fasts which makes your cells eat up all the bad cells, and I have eaten more fruit roll ups, gummies, and rice krispy bars laced with THC. We all know THC works to kill cancer! And of course pray and keep the faith for healing. So I guess I will try to keep all these things going over the next 3 months and see what happens at the next scan. 🙂

Thanks for reading! Goodnight! 🙂

Good News!

I’m happy to blog tonight that my scan results came back showing no new spots, some shrinkage of the spots that I have and the spots in my bones are showing less active. There is no increase in growth on the spot in my liver…so no radiation yet. I AM SOOOOO HAPPY!!!! What a GREAT way to start off the New Year!!!! Plus there is a new drug that just got approved by the FDA for the kind of cancer that I have called,,,Enhertu. I was told that this will be the next drug that I get on after this treatment stops working instead of the 2 chemo pills that was the next line of defense. Of course it comes with it’s own set of side effects, but it has shown to be 60% effective in stopping progressions and shrinking tumors. I don’t just start it now because it is a stronger chemo, and with stronger chemos come more serious side effects. Hair loss being one of them. I was hoping I wouldn’t lose my hair again, (I don’t want to go out of this world bald) but it looks like I will end up going out of this world the way that I came in, BALD. Oh well…I’ll gladly take the exchange for living longer! But for now I am really glad that this chemo that I’m on is still working. So I am excited about all this news. I did talk about some of the symptoms that I have been having like vision changes, comprehension and processing of questions, memory loss and weight loss due to no appetite. The doctor said with all these new meds coming out and people with cancer are living longer than before, they can only throw pills at them. And he doesn’t like throwing more pills at me than I’m already taking, and neither do the other doctors, so they are telling patients if they can, to learn to cope with the symptoms. He says that is one of the downfalls to living longer with these chemo drugs….are the side effects. He did give me a new pill for my appetite called Marinol that is a synthetic of THC that supposedly only gives you the munchies without all the other side effects. So we will see how that works. I have lost over 20 pounds in the last 6 months and before that I had already lost another 20 plus pounds. I had needed to lose a little weight, and I would still like to lose a little more, but unfortunately I’m not losing weight the correct way so I am losing muscle mass as well which has made me really weak and thin looking. Sickly. I can’t help losing weight. I’m so sick all the time, have literally no appetite, and sometimes when I do eat, it comes right back up! So hopefully that Marinol works for me and drinking Ensure and homemade smoothies on a more regular basis will at least help maintain my weight. I’m also going to start taking my puppy for short walks for exercise and I’m still trying to start up yoga. I just need the energy to do this stuff.

I miss the structure of daily routines like when I used to work. But my sister suggested to set my alarm in the morning, get up have coffee and breakfast, and get into a regular routine of doing things. Exercise, reading, doing puzzles, drawing/coloring, organizing my rooms, drawers, etc…find things to do that I can put into a regular routine and set times for those, then move on to the next thing. Great idea! I have my alarm set for 10 AM everyday. If I wake up earlier than that, so be it.

Well that’s all my news for now. Goodnight! 🙂

Scan time

Hello! It’s scan time again! I get scans on Monday and the results on Tuesday. I’ve been having scanxiety cause every scan I got last year except one was a progression so I am hoping and praying that I have no progression and this chemo is still working. I am soooo hoping for a better year this year. I can always tell by the doctors face when he walks in the room whether it’s going to be good or bad news. I have heard of women who live with metastatic breast cancer for over 20 years, It’s rare, but I have heard of it. I am hoping we find a chemo that works and starts shrinking these tumors and keeping everything stable. I would love to be one of those women who can say I’ve outlived my prognosis.

I have been sick this week with a bad cold and asthma flare ups, then I got a bladder infection. :\ But I finally got antibiotics for the bladder infection and the cold and asthma are much better. I get chemo on Tuesday and I am going to talk to the doctor about a med for my appetite because I have no appetite anymore. Nothing tastes good cause my taste buds are shot from the chemo, plus the smell of food makes me nauseas. I bought some Ensure tonight to start drinking for calories and nutrition plus I drink green juices and smoothies, I just need to drink more of them. I do have some “fruit roll ups” that give me the munchies and help me eat, but it also gives me a ‘high’ feeling that I don’t like, so I tend not to eat it much. I finally finished radiation to my lung on Monday but the radiation keeps working for 6-8 weeks in your body…so the fatigue continues.

I’ve been down as of late because I’ve been so sick and I’m just tired of being sick and tired all the time. I miss the life I had before cancer. When I could dance and go for long walks without getting breathless. When I had normalcy in my daily life. My life now consists of doctor visits, chemo and radiation, scans, tests, constant fatigue, lot’s of medications, catching illnesses so easily, and just staying home cause I’m too weak and tire too easily to do much of anything. I went to the grocery store with my husband tonight and I cannot remember the last time I have been to the grocery store, it’s been so long. I have been trying to avoid going out in public cause of the flu season, but we do still go to the occasional movie or out to eat. I did get the really strong flu shot that they give to the elderly so I am hoping I am covered.

I saw my therapist today which was much needed. Talking things out with someone who is subjective takes a lot off my chest and makes me feel better. She makes me see things in a different perspective, a more positive one. I have been seeing her off and on for over 16 years. And she has gotten me through a lot of lifes struggles. I highly recommend talking to someone when your having troubles dealing with life. Therapy really does work.

Well that’s all for now, I’ll update after scans, good or bad. Fingers crossed for good news!

Good days and bad days

I had a lot of good days during the Christmas holidays. I didn’t have chemo until after Christmas and I started radiation after Christmas too. Now I’ve been having bad days with a lot of major fatigue and weakness from the radiation and chemo together. Thus leading to no appetite and no eating which makes the weakness even worse. When I say major fatigue I mean I can barely keep my eyes open. I sleep all day. Today, Wed, and Thursday I have to go into Austin, which is like an hour away, with fatigue. I had such a hard time today. I did not want to get out of bed. I could barely walk and my arms were so weak even the steering wheel felt heavy to drive with. Not even coffee helped. But I made it. I had to really focus though because my brain felt really heavy.

It’s days like today that get me down and get me to wondering just how much longer my body will be able to take this. I just want to cry cause I feel so bad. Every year on Dec 31st I thank the good Lord that I made it another year –without complications, and I got to be here to spend the holidays with my family. And every Jan 1st I always wonder if this will be my last year…the year that I die. Living with metastatic breast cancer is no fun. The treatment is harsh and slowly kills your body and it’s ability to function. My body has been surprisingly strong and has taken the treatment like a champ! So I hope and pray that it keeps going that way. I know that my mentality gets down when my body shuts down, and when I feel better I get more positive mentally. But I just can’t help but wonder just how much longer I can take this on those down days. On those down days I feel like throwing in the towel and giving up. The ONLY reason I’m fighting and not giving up is because of my family, friends, and loved ones. Cause fighting Cancer is hard and the treatments with their side effects are horrible, and expensive!!!

The radiation has not been as bad as I thought it was going to be, the contraptions they put on me are tolerable. The hardest part is laying there for 30 minutes trying not to breath. Your breathing has to be shallow and slow. I just try to fall asleep, which I did today.

And I’m falling asleep now as I write this so I am going to call it a night. Goodnight! 🙂