Author: KimJHA

Monday was a slightly better day than the previous 3 days, I was able to stay awake all day, and could read or knit in 15 minute increments or so and I could actually pay attention to a TV show long enough to follow a plot.

I was up early enough to keep my morning routine and feed the Toothless Wonder Cat prior to the 8 AM start of the Tournament of Roses Parade start time.  I did watch the parade and was actually able to watch most of it without my mind wandering too much.

Several people texted me Happy New Year and queried how I was doing.  Their words of encouragement were greatly appreciated as despite the slight improvement, I am still finding my inability to control my brain frustrating.

Tomorrow I have to get my blood draw and we’re planning on doing some grocery shopping after.  I also have an acupuncture appointment later in the morning and need to stop at Costco to pick up new refills on the Rx’s.  I start the steroids tomorrow night in preparation for Wednesday’s treatment.  Wonder how that will improve my ability to concentrate?  Knowing what is coming is not easy and I am doing everything I can to NOT think about the sleepy, mind jumping frustration and boredom that is coming.

Life is ignoring the coming side effects

Sunday started out pretty much the same as Friday and Saturday.  My feet and fingers still feeling slightly numb, slow to wake up, drift off several times before I actually wake up for the day, and thinking today I will be “normal”, only to get 30 or 40 minutes into my day to find I am exhausted and need a nap already.  My brain not able to concentrate longer than a few minutes at a time, and my tastebuds still on strike.

I spent my day lounging on the chaise with occasional forays to my spot on the sofa.  I napped while feeding the Toothless Wonder Cat, woke up and napped again while waiting for him to finish his grooming.  I was awake more than I was on Saturday, but that was frustrating as I still could not distract myself with knitting or reading as my mind would not stay focused.  Nothing worse than being bored and exhausted.  You would think with a mind that will not focus a person would not get bored, but it’s amazing how boring having a brain that flits all over the place actually becomes.  You think of tons of things you would love to be doing, but cannot do one of them effectively.

I still have the sore on my tongue too.  It’s slightly better but still there and irritating.  It hurts when I am at rest and really hurts when I try to eat.  I think of how good something will taste and when I eat, it tastes horrible.  It tastes metallic.  As I was putting together a bite for breakfast, I decided on lox and a bit of cream cheese on an English Muffin.  I wanted to go heavy on the protein.  I had salmon on my fingers and put it in my mouth and it tasted horrible.  Hubby asked me if the salmon had gone bad, nope, just my tongue.  Metal fish is not a fun breakfast.  I ate it anyway as I know I needed the food.

I was exhausted from my day and took myself off to bed by 9:30 PM.

Happy New Year everyone.

Life is exhausting

Saturday was no better than Friday when it came to my ability to concentrate and stay awake. I am finding it very difficult to follow a conversation with my husband, if it goes on longer than a few minutes I find my mind wanders, and it’s very difficult for me to remain focused on the discussion at hand.

I cannot concentrate enough to knit or read or do anything. My mind constantly wanders, I zone out. I am also very frustrated with this turn of events, which is making my short tempered. I am trying very hard to not be frustrated, but it slips out.

Because of this and many 5 minute discussions, we have decided maybe now is not the time to start our kitchen remodel. We thought it would be the perfect time, we’re both home, Hubby could gut the kitchen himself, saving us some money, but with my shortened temper and inability to concentrate we’re both very worried that I will not be happy with the outcome and be even more frustrated than I am now with the process. A remodel is hard enough under normal circumstances; we don’t need to make it worse for me by doing it while I am struggling with the effects of chemo. So our remodel is on hold, again.   We have also decided no more driving for me.  Not that I was doing a lot of driving, but with how I have been over the past week and how much worse it is becoming, driving is now out of the question.  Hubby will have to be my chauffeur.

I still have the mouth sore, and that is frustrating me too. I just don’t have the energy to deal with these little hurdles and that is adding to my frustrations. I had a hard time eating my dinner last night because it hurt.

I slept even more on Saturday than I did on Friday. My naps were longer, not just 20 to 30 minutes here and there, I was taking 2 hours here and then 2 hours there. I have been so sedentary the past two days my body aches. I want to move but don’t have the energy to move. Just thinking about all this is exhausting.

I feel so overwhelmed and done. 4 weeks into the new chemo regime and I am done. Hubby keeps reminding me this is temporary, and hundreds of thousands of women survive this every year, I can do this too. This is going to be a long two more months…

TCST

Life is dealing with the frustrations

Thursday was a fairly decent day. But then I was still hopped up on the steroids taken prior to infusion. I was awake at my normal time and felt ready to take on the day. I did have an acupuncture appointment scheduled mid-morning, so made sure I was ready to go for that after taking care of what I like to call my morning routine. Check emails, update my blog, eat breakfast, feed the Toothless Wonder Cat, get washed up and dressed before I take on anything else.

I was ready to take myself to acupuncture in plenty of time, and discussed my problem with not being able to multitask and follow a complicated knitting pattern with Homa. She added some treatment points on my head to try and increase blood flow hoping that may help.

When I was done with treatment headed back home to find Hubby eating lunch. I helped myself to a piece of the left over BBQ chicken and joined him. After we were done we headed to another appliance store to check out other appliance options for our kitchen remodel.

After a few hours I started to slow down, but we found some other options we liked but had some research to do on ratings and complaints to make sure we wanted to go that route, so we headed home.

I was ready for bed by 8:30 PM. I took care of my bedtime routine, and was sound asleep before I knew it. I slept in until after 7 AM. My brain was fuzzy and I was still very tired. Friday was not going to be a good day.

I spent the whole day curled in my spot on the sofa battling a mouth sore and napping. Hubby had to run to the store to pick me up a couple more lemons so I can continue to battle the sore on my tongue.

I felt overwhelmed just trying to deal with the sore. I didn’t have the energy to even think about how I dealt with the previous mouth sores and didn’t want to deal with this one. I just wanted to give up and go back to bed.

The air has been so dry here I’ve had nose bleeds too, and that was depressing me as well. I just want this all to be done. I want this all to go away, forever. I want my real life back, not this one where I have to worry about mouth sores and nose bleeds. Where I don’t have to remember to take CBD oil so I don’t feel sick, and I’m not worrying about making sure I remember to call the surgeons (oncology and plastic) in two weeks and wondering when I will be referred to the radiation oncologist. More doctors, more treatments, more, more, more shit to deal with.

I had to resubmit my disability claim to continue my coverage, and that frustrated me, probably because I was getting so tired. I’m tired of being tired. I’m tired of remembering to get my blood draw on Tuesday mornings. I’m tired of putting together my chemo bag every Wednesday. I’m tired of having a port, I’m tired of forcing myself to eat because I can’t taste anything, I’m tired of being a cancer patient. I want my old life back. I want to be normal, not cancer girl.

So yeah, Friday was not a good day.

Life is being tired

Wednesday, December 27 – Happy Birthday Little Bro

Don’t want to out my little brothers actual age, we I’ll just say 40+ years ago I became a big sister.  It was my late Christmas present.  He slept a lot back then and threw up even more.  He was born with pyloric stenosis; the sphincter muscle from the stomach to the intestine was too big and wouldn’t let food pass.  At 6 weeks old he was back in the hospital having surgery.  Since then he has spent the rest of his life making up for that first six weeks of starving!  He is an adventurous eater and I have yet to hear of him turning any new item down.  I love my brother as he has introduced me to several new foods I had never thought to try.   At about the age of 2 he once ate half of every one of my crayons.   Rainbow diapers for days!  He once drank gas that a neighbor had left in a beer can to help did with priming on an engine he was working on.  That was another admission to the hospital with chemical pneumonia.   I missed him most when he joined the Navy and traveled the world, but he stayed in touch and brought home many new delicacies to try.  I could go on all day on with memories of my little brother, so I won’t.  I will say I love him with all my heart and I am so glad my parents blessed me with such a great brother who is not so little compared to me anymore.  He grew up so much taller than me!  Happy Birthday Little Bro!

Wednesday was also Infusion Day, so I had some things that had to be done, like taking my Zantac and Dexamethasone in the morning with the rest of my pills, than at noon take Benadryl and Tylenol in preparation for Infusion scheduled for 1 PM.   Planned out my chemo bag the previous night, just needed to pack from my list in the morning.  I also needed to apply this week’s temp tattoo:

Do you get it?  I think I made it super easy this week.

We headed out at noon, and when we arrived at the office I realized I had not remembered to take the Benadryl and Tylenol.  There is a pharmacy in the medical complex so we headed there and I purchased both and took them right away.  Damn chemo brain!  Hubby said I should and a reminder – just tell Siri to remind you.  I knew I kept him around for a reason.  I also recently taught him that little trick of Siri setting a reminder or alarm for him.  I hear him using it all the time.  LOL.

We arrived in time, but I was called back late, seems my liver enzymes were slightly elevated again and my Nurse for the day, Geremy, was waiting on the Nurse Practitioner, Susan, to get back to him on whether it was OK for me to receive the infusion.  After some discussion with Susan, not only was it OK to proceed with infusion, but when they asked me about drinking (two very small sips of red wine Christmas Eve, then boiled Hot Mulled wine on Christmas Day), then the Tylenol day of treatment.  They didn’t think it was the alcohol, but again, they think it might be the Tylenol.  They don’t know why Deborah has me taking Tylenol as a pre-treatment as that is not a normal course of treatment.  They told me to stop taking it.  I will also no longer sip off another’s wine or beer until chemo is done during a celebration.  Just can’t take the risk of ruining my liver!

Infusion proceeded as scheduled even though I took the Benadryl (and Tylenol) a bit late it was still within 30 minutes of infusion which is the minimum time limit.  Flush IV bags are still in very short supply, so my flush was a push, before the Chemo started.  I set myself up with my new easy knitting pattern for a cowl as I am noticing my neck get’s cold but not my head.  I put a hat on, but I’m still cold.  Need to fix that.

Also had my iPad so I could watch a movie or start watching the second season of “This is Us”.  I had an hour on the Taxol and about 45 minutes on the Carboplatin.  There is the set up time and flushing before and after, then the adding of the Heparin to prevent blood clots before we unhook from the port.  Then I am ready to go, right about two hours from the time I go into an infusion room.

We have decided to gut the kitchen and get started on cleaning up the house.  It is in desperate need of updating.  We’re no longer going to allow my cancer to stop our plans.  Since we’re gutting first, then reaching out to a designer to proceed with the rebuild, we also thought it would be a good idea to research pricing on new appliances and have an idea of what we want to install before we reach out to a designer to start the planning and build out process.  We stopped by Pacific Sales on the way home.  We walked out more confused than before. I want dual fuel range (stove top/oven combo) or a separate gas cook top with electric double ovens.  Hubby wants microwave/vent installed above cook top even if it is a range or just a cook top.  He doesn’t want digital controls on the oven(s), good luck with that!), and when it comes to a new refrigerator built ins all seem so shallow, at least the ones we saw.  The stand alone units were deeper, but they all seem to come with ice/water dispensers and the finishes were not what we wanted.  The Stainless Steel ones really picked up fingerprints horribly, and the non-fingerprint finishes looks horrid.

We’re going to stop by another appliance store Thursday to see if we can find other options other than just Viking as being the one brand we saw that had what we wanted in looks and style but the price range….  OY.

I also have an Acupuncture appointment Thursday morning, so we will probably go after my appointment.

I was tired after my chemo treatment so we didn’t stay long at Pacific Sales.  Besides Hubby had a cat to feed.

I have upped my dosage of CBD oil; I am now doing two drops every morning and night, with a one drop kicker mid-day.  This seems to have improved how I am feeling.  Still not eating very much, but not feeling so full for so long after I do eat, and indigestion in getting better.  Will try this dosing for a few days to see how it works before I decide if it needs more tweaking.

As bed time neared, I was tired, but I didn’t take any changes and took the Lunesta pill as I headed to bed.  I still had to wait longer than normal to fall asleep, but I did and was up only about an hour later than normal now.

Life is learning to control your meds to keep the body happy

 

Tuesday, December 26 – Visit with family

Woke up at my new normal, and cleaned up email, worked on blog, and then got ready to head to lab for blood work.  Because I go to the lab so early for the blood work, we usually feed the Toothless Wonder Cat upon return from lab. I took on the morning feeding after we got back.  When I was done, we went over to the Postal Annex to send off the gifts for my Dad, Mom#2, and little brother and his family since we cannot be there for our traditional New Year’s Eve celebrations and gift exchange.  Timing is just wrong for us to do this with my chemo schedule, and I’m not sure yet if the CBD oil would keep me comfortable for that long of a drive.

Started planning my bag packing for tomorrow’s infusion, and waited a text message from my aunt letting us know when they were heading over for a visit.

We set up the left over BBQ just in case they wanted to eat once they let us know what time they were heading over.  Aunt, Uncle, cousin and her boyfriend.  We had a grand time talking, laughing, and sharing.  The afternoon slipped by quickly.

My Aunt did ask me about my diagnosis.  Even though she is a nurse, her specialty is not cancer, so I did go over my diagnosis with her and it was a little easier for me to talk about than I thought.  I’ve shied away from talking about my diagnosis for weeks now, not wanting to acknowledge that this really is a fight for my life here.  I’ve pushed that part into a box and put that box away in the deepest recesses of my conscience, to be ignored.

When Auntie asked me about the diagnosis, my first thought was do I even remember?  Yes, I pulled the box out, knew right where it was, and dusted off all those words that scare me.  Examined them and realized they didn’t quite have the same power to exude fear into my heart.  They are still scary words, invasive, aggressive, triple negative, which whispers to me lowest five year survival rate and someone has to draw the short stick.  But I notice the good words, no signs of spreading from the MRI, and the MRI is really good at picking up lymph node involvement; Stage 2A, this is better than Stage 3 or 4, right?

Maybe it was time to examine all those words again, having ignored them for so long.  Their power to terrify me is diminishing.   Don’t get me wrong, there is still some fear in there, and I keep it packed tight.  It remains in a corner, gray and black, swirling in a tight little ball, ready to pounce the minute I let my guard down.  It occasionally tries to taunt me, whispering the bad words: Mortality Rate, Recurrence, and Short Straw.  I ignore its whispers and refer to my bathroom mirror: Treatable, Curable, Survivable, Temporary.

I have so many praying and thinking positive thoughts for me, I will win this battle with so much behind me.  And I am so ever grateful for all those powerful prayers and thoughts helping me, giving me strength, providing me the energy I need to reduce the power from the words that scare me, making it easier for me to say those words again.

All too soon, and yet hours later, Auntie and Uncle, cousin and boyfriend said it was time to go.  Hugs and kisses, love and prayers exchanged, feeling boosted and ready to face the next cycle of chemo on Wednesday, we said our good-byes and they went on their way to figure out what they would do on their final hours of their visit to Southern California.

I finally felt hungry and tummy empty enough for another snack, and Hubby ate a plateful of the left over BBQ and sides.  I had a spoonful of coleslaw mixed with the garlic mash.  I have always loved the taste of cabbage and potato mixed together, in any form.  I added a couple pieces of sausage and a small bit of the BBQ Brisket and was stuffed to the gills by this little bowl of food.

Hubby went out to feed the Toothless Wonder Cat and I sat on the sofa to watch a bit of TV and promptly napped.  I woke about 30 minutes later filling a little refreshed.  I napped again later for over an hour.  I know as I missed my favorite evening game shows – Jeopardy and Wheel of Fortune.  Hubby had already moved on to Netflix.

Intricate knitting patterns are becoming difficult for me to follow, not sure if it’s the patterns or the actual holding of the knitting.  I’m getting frustrated and have pulled out the knitting several times now as I keep messing up the pattern.  I also cannot keep count and hold a conversation as I have been able to do in the past.  I used to be able to knit and watch TV, didn’t matter if I had to refer to a pattern to keep going; now I cannot.  I lose my spot in the pattern, I drop stitches, and I’m having a difficult time keeping my tension even.  I’m going back to my project list and pulling out projects that I think will have easier patterns so I can keep my hands and mind active, even if I have to revert to simple patterns/projects to keep this going.

Life is re-evaluating limitations

Woke up at my “normal” time – about 4:30 AM, and started my routine, brush teeth, wash face, check email, watch news, update blog.  Hubby wakes somewhere around 6:30 AM.  My, how our roles have reversed.  He used to be the one awake in the pre-dawn hours while I slumbered away until the alarm went off.

I went to feed the Toothless Wonder Cat.  He’s been in a fight and we’ve noted some injuries to his back leg and front paw.  I could see now open wounds, but the areas a slightly swollen and red and he’s walking very gingerly on those two legs.  He didn’t eat much; he’s still having some major gum issues.  I wish we could actually hold him so we could get him to the vet.

Once I was done feeding, or more like attempted to feed Toothless, I started the prep of the beignets, I was using a new recipe this year, yeast instead of baking soda leavening.  The Middle Son said he would be back at our house about 9 AM and that would have worked for him to make the beignets, but that didn’t happen which we figured would be the case.  Yeast based dough needs time to rise.

Once The Middle Son arrived, I put him to work helping me get the rest of the spread of snacks set up and once the dough had risen, he was put in charge of rolling, cutting, and cooking the beignets.

By this time the Darling Daughter and her family had arrived as well, so we were just waiting on beignets to finish so we could open presents.

The Grandson and his daddy played with his Hot Wheels while we waited for the French doughnuts to be ready.

Finally it was time, and we let the Grandson open all his gifts from everyone first.  We all stuck to his wish list this year, and got some great reactions.  First we started with the stockings and then moved to the wrapped gifts

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Once all the gifts were opened I went out to the sofa in the front room and watched some TV, I was exhausted from all this excitement.

I fell asleep and Hubby had to wake me up when one of The Boys came down to wish us Merry Christmas.  I needed to see him get his stocking.  One of my little brothers called me at that point, which was perfect timing as I was awake to answer my phone… I went back to sleep after he left and The Middle Son and the Girlfriend took off to spend the rest of the holiday with her family.  Naps were good, but I awoke with acid reflux.   I’ve noted I have more problems with that now even though I am taking Pilosec every morning and Zantac every night per my Gastroenterologist.  Yet another side effect of chemo.

The Darling Daughter and her family left a few hours later to go spend the rest of the afternoon with our son-in-laws side of the family.

The house was empty and Hubby was cleaning up our snacking feast from earlier.  I was disappointed to find he threw away some of the left over foods as he felt no one would eat them.  This is what I get for napping…

I was still tired the rest of the day, could not concentrate enough to knit, so I worked on my puzzle app while I vegged in front of the TV.  I was waiting for the Dr. Who Christmas Special.  We’ve been waiting for a year for a new Dr. Who.  I couldn’t stay awake for the whole episode.  Thankfully Hubby was recording it, so I can watch it later when I can stay awake.

All in all, Christmas day was a wonderful day, even though I couldn’t stay awake.

Tuesday I have blood work that needs to happen, we need to mail off a package to my dad and mom #2, and looks like we will have a visit from family visiting from out of town.

Life is celebrating holidays

I felt better when I woke up today, still a little off, but better than I had been.  Still tired.  I waited for Hubby to get up by going through email and watching the Dr. Who Marathon on BBC in preparation for the Dr. Who Christmas Special being aired Christmas night.

Once Hubby was up, we started on finishing up the last minute cleaning and shopping.  I did a final clean on the bathroom, and then swept the floors in preparation of Hubby steaming them with the Shark Steam Mop.  That exhausted me and I had to take a little breather.  Once I was able to stand without shaking again, I showered and dressed and went to feed the Toothless Wonder Cat.

He was not very interested in me feeding him and one “Dad” came out back he would only eat for him.  Once that was done, Hubby started some last minute laundry and we both left to run separate errands.  I to the grocery store and the drug store to pick up another humidifier and the last minute perishables needed for the next two days, Hubby to go pick up our catering order from the BBQ restaurant we always order from.

Once we were done with all the errands and finishing touches to the cleaning, we both took much needed rests.  Hubby laid down for a nap and I napped in front of the TV watching football.  My favorite way to nap!

About 5:30 PM, one of The Boys stopped by to get my order for CBD oil.  He was back in minutes and I took my first dose, a drop under the tongue.  Starting with 20-1 ratio of CBD to THC.  Need the THC to act as the catalyst.  Hopefully this will even out my bad days.

Family started showing up about 6 PM and I was ready.  It was so much fun to have the house full.  Dinner was ready to go by 6:30 PM, and we had the tables all set up.  Full house and it was so worth it!  I could actually taste all the food which was exactly what I wished for!  The conversations flowed all around as we all caught up, exchanged ideas, exclaimed over adventures and were just family gathering to keep a tradition going started by Hubby’s grandparents.

One younger cousin was astonished to learn some of his history and exclaimed to all of our delight “What, I’ve been living a lie all these years!”  (He found out his ancestry on that side of the family is Spanish decent, no Puerto Rican.)

The younger generation was sent home with Christmas cash, and the older with gift boxes of cookies.

We were then blessed with the other Boy (Sons from another mother), and his fiancé.  Since he will not be here Christmas day since they have obligations with his fiancé’s family, he was able to open his stocking last night.

Everything was cleaned up and put away, and we were ready for bed.

It was a great night and I am so glad we kept this tradition going.

Life is keeping family traditions

I woke up early but tried to sleep more because I just felt off. When Hubby got up, I tried reading. I was still having a difficult time regulating my body temp, and because I was so cold during the night I slept in my fleece lounge wear, socks and a knit watch cap. When I finally decided to get up, I was still having problems with being cold.

I fed the Toothless Wonder Cat, and then made myself some oatmeal. My tummy really didn’t like that. It didn’t come back up, but I felt horrible. It was a chore to even drink.

I alternated between cold and hot all day, mostly cold. Any my stomach really didn’t like me all day. I couldn’t concentrate on anything either. I hate bad days.
I’ve decided to let the boys get me come CBD oil. Maybe that will help even out my good vs. bad days in this phase of chemo. I took a Reglan (anti-nausea), but it really didn’t help much.

Blink remains a different texture than the rest of my breast tissue. Blink got so soft there for a while, now I wonder if the chemo is winning or not. Is Blink fighting back? Is that why the texture has changed over the past few weeks? I can do this, and the bad days are temporary, even though they suck. I know a good day will follow the bad days, but there are times when I wonder if this is doing what it’s supposed to be doing.

Sunday is Christmas Eve. Family is coming over. We will have BBQ, and fun. I am excited and scared that I will still feel yucky. I want to feel good for Christmas. I want to be happy and excited, to taste what I eat, enjoy our family and not feel exhausted the whole time. I want to forget for a while that I am fighting for my life. I want my hands and feet to feel normal for 24 hours, and not worry that I will drop something important or burn myself because I can’t feel normally.
Oh yeah, there is that part, even though I had an acupuncture session on Friday, the neuropathy has not improved like it normally does. It’s not worse, but it has not faded. I’m only 3 weeks in, and the numb feeling is not going away. What will happen in week 5 or 7?

Will CBD Oil help with the neuropathy? Maybe I should just roll a fatty and get stoned to the beejeebus as my #2 mom suggested. Then I won’t care if I have neuropathy, or if the texture of Blink has changed. I won’t worry about surgery or what they will find when that happens; I won’t have flashes of blackened burned “flesh” when I do my visualization of the chemo killing the cancer. I won’t care that I can’t taste anything, or worry that I will get mouth sores.

And then I will fall asleep, I am sure. Since I want to be awake for family, which rules out a big fatty.

I will try the CBD oil and go from there. One day at a time as hubby keeps reminding me. One day at a time. We can do this, and we will survive.

Life is figuring out how to manage bad days

As noted on previous post, I did have to take a sleeping pill again last night to get to sleep. Slept until about 7:30 AM this morning. I got up and prepared to go feed the Toothless Wonder Cat. It’s been in the 40’s so I decided to meet Toothless in the front yard where he likes to sun himself.
He came over and took a few licks of baby food and left. I was so disappointed…
The steroids are wearing off, and I am feeling tired, and just slightly off. I have a hard time regulating my body temperature on these days. I’ll be hot, then cold, then hot again. If this goes as the past two cycles, eventually I’ll just be cold.
I went to my appointment with Homa, and fell asleep during my meditation during my acupuncture treatment. And I needed the heater and a blanket during treatment.
Once I was home, I boxed up all the cookies, and decorated with sprigs of pine, rosemary and thyme.
We delivered almost all of them; one neighbor wasn’t home, so we will get them tomorrow.
Now if I could just stay warm.

Life is layering