Sunday, January 14 – Taking longer to recover

I’m still dealing with the body aches and exhaustion that now comes with chemo.  We went and purchased a separate heating pad for me today since I am wanting to use the one we have almost constantly while dealing with the body aches.  Today we also added upset tummy again to my ails.  Hubby thinks it is the Chinese food we order from a specific restaurant.  I wanted Hot and Sour soup last night, and I have not been sick since I started using CBD oil.  We order the soup from one specific restaurant, and today I was puking my guts into the bathroom trash can again while already using the toilet.  No more Hot and Sour soup for me…..

I am so tired of my brain not working, my body not working, my finger tips and feet being numb.  Not being able to taste most of what I eat.  I am so tired.  6 weeks seems like such a long time to keep going.

Hubby has been a such a help and a saint.  He keeps reminding me this is temporary, and I can do this.  I just want to be done already.  Can this please be done…

Life is endurance

Tuesday, January 9 – Blood work and check in with GP

Last night I made a pot of champ (mashed potatoes with green onions) and threw in some bacon for protein.  I figured I’d eat some with a bit of sauerkraut, as I’ve always loved mashed potatoes with sauerkraut.  By the time I was done making it, I was no longer hungry.  Champ went into the fridge to wait for today.  Maybe I’ll be hungry today.

As we were sitting watching TV I noticed a new sore in my mouth, this one on the inside of my bottom lip.  At first I thought, “When did I bit my lip?”, then I realized no, I didn’t bite my lip, it’s a new sore.  Oh the joys.

Hubby wanted to watch the Georgia/Alabama game last night so we watched.  It’s not very often he asks to watch football, even if it was a college ball game.  Georgia was up at the half and I was feeling very tired so went to bed.  I woke up when hubby came to bed and asked him who won, Crimson Tide came back after the half, caught up, stayed tied and won in OT.  He’s so sad today.  He pulled out his black ‘Dawgs cap and will be wearing that today as he is in mourning.  And to think this all started with a 40th birthday gift of a Bulldogs cap from a friend.

I have to go get my blood work done this morning, and then I have an appointment with my Primary Care, just to check in and keep my prescription for Paxil up to date.  It’s raining here today, so we need to make sure we give ourselves enough time to get to both places in time.

I am still feeling just the slightest ache across my shoulder blades, just want go away completely.  I’ll have to ask the nurses about this tomorrow when I go in for my infusion.

Life is trying to eat

 

Monday, January 8 – Back from hibernation

Now that I am awake and can think mostly straight again, I am back to post. For the first time since starting chemo I fell asleep upon our return home after an infusion. I went downhill from there, into sleep and brain fritz.

I did take the time, exhausting as it was, to get a medical marijuana card so I can purchase my own CBD oil. That was an ordeal considering how bone-tired I was during this odyssey to get me the CBD oil I needed that is controlling the nausea. Now if I could get it to control the aches that come on the day after infusion now and last for 4 days.

This time I did not resist the exhaustion or inability to focus and just rolled with it. I was not as frustrated, but I was still bored as I could not concentrate on anything long enough to distract myself when I was awake. I did manage to take in enough of the playoff games this weekend to understand who won, who lost and the just of the games.

We will try this again this week, see if I can stay on top of everything and keep posting while going through this.

To recap, exhaustion, aches and inability to focus. Today is a bit better, but still very tired.

Tomorrow is labs and a follow up with my Primary Care Physician, then Wednesday is my infusion day.
Chemo is kicking my rear this time.

Life is getting through the next seven weeks

Tuesday, January 2 – Labs, Groceries and Group

I am still tired, but not as much. And my brain is functioning a little better. I know tomorrow I will feel great as I start taking the preparatory steroids tonight for tomorrow’s infusion. I know I will feel really good until about Thursday afternoon and then it will be the sleeping, brain scrambled frustrating hell I went through last week. I still have the sore on my tongue and I still cannot taste food correctly. I am not getting any respite on that front. It’s really hard to stay motivated to go to chemo. At least the CBD oil has the nausea under control. So much for Taxol/Carboplatin being less nauseating than Adriamycin/Cyclophosohamide cocktail.

We went early to the lab, and despite their computers being down, was still in and out of there fairly quickly. From there we stopped at Trader Joe’s and Albertson’s to do the grocery shopping. I wanted to pick up the ingredients to make a big pot of Chicken Noodle soup. TJ’s didn’t have any bone in, skin on Chicken Thighs so I figured I would just have to get that at Albertson’s.

When we got to Albertson’s they didn’t have any either. I was frustrated and about to have a meltdown in the store, but Hubby was able to talk me off the ledge, and helped me with an alternative. The reason for the bone in/skin on is to get some of the fats, gelatinous connective tissues and bone marrow from the chicken as all of these are good nutrients for me, without having to go through the process of trying to deal with a whole chicken. I don’t have the patience to deal with that. When I explained to him why I needed the bone in kind he pointed out that I will basically be braising the chicken the meat will fall right off the bones so use chicken legs and add some boneless thighs to get the meat you want. Use the meat off the legs that “falls” off and don’t worry about the rest.
A little more work for me, but a good solution. Change is very difficult for me to deal with now. I have no ability to think outside the box and no patience to deal with alternatives to what I have set my mind on as my solution. While I am dealing with changes I find it frustrating that I cannot turn my mind to the alternative which just makes the melt down even harder to deal with. I know this is happening and feel powerless to stop the process as hard as I try when it is happening. I feel like a petulant child and want to change my affect but it is so difficult. Part of my brain is yelling at me to stop the words coming out of my mouth, stop the pouting I know is happening. Think of a solution. Tears threatened yesterday, and that part of my brain was “no, you will not cry over damn chicken thighs!” I am grateful for my husband who had the patience to talk me through this stumbling block and provide a solution that is good even though at the time my brain was not willing to accept it as a great solution, I could only grudgingly accept the solution even though that small part of my brain was cheering. It just can’t break through the controlling part of my brain that rejects any and all changes.

After dealing with my near melt down in the meat aisle we both forgot about getting the baby food for the Toothless Wonder Cat, and we checked out as if all was right in the world. We headed home and put all the groceries away and I ate a small bite and drank some more Lemon/Honey tea before we headed out to my acupuncture appointment.

I explained to Homa everything that has been happening since my last appointment, and how the neuropathy never went away, how I could not hold the smaller needles used with the finer yarns, I kept dropping the needles and stitches, on top of not being able to keep the pattern in my brain and losing where I was on the physical pattern sheet. I told her about my inability to deal with change, my near melt down, our decision to not let me drive anymore, all of it. She said I need to give myself permission to heal, and she added more treatment points for blood flow to my brain and the neuropathy in my hands and feet. For the mouth sore her only suggestion was to add gargling with salt water to help keep my mouth clean. Oh yea, I forgot about gargling with salt water.

I still had a very hard time meditating while I was in treatment, my mind kept wandering. Not as bad as the previous days, but enough that I would realize I was “flitting” and pull myself back to the meditation at hand. As usual, I started with requesting blessings for friends, family, my doctors, etc. Then I gave my thanks for all my blessings. I truly am blessed! I am so grateful for my husband and his patience with me during my two year old phase right now. I am thankful for my children who are rolling with all this and taking over when they need to, and being supportive when they are not needed in the house. My family for all the messages of support and love, and taking the time to come visit with me when they can since I cannot get to them right now. For all my friends who are praying for me and sending me good thoughts and messages of encouragement. My boss who checks in on my every week to see how I am doing to provide words of encouragement. For those who know people who know me who are praying for me just because the person they know has asked. I have so much support and love pouring in, and here I act like a spoiled two year old. I am trying so hard to be “normal”. I need to remember how blessed I am more often, like every morning. Maybe this will help me in my brain acting like that two year old.

When I was done at Acupuncturist we headed to Costco to pick up my Rx. One still has not been reauthorized by my GP, but the other was processed, just not filled. They told me about 20 to 25 minutes. I went and sat in the “waiting” area. 45 minutes later I was still waiting. I got up to ask and one of the cashiers told me I needed to stand in line. I already stood in line! I was told 25 minutes, I’ve now been waiting 45. Finally one of the three cashiers took my info and looked up my Rx to see if it was ready yet. Yup, waiting on the shelf for someone to pick it up and call me…. Again, I felt the tears threatening. WTF? Blew my nose and picked up my Rx and headed out to hubby who was waiting outside. He had just texted me to find out what the holdup was, timing.

That was when we realized we never picked up the baby food. So we headed back to Albertson’s. The Toothless Wonder Cat was waiting for us as I forgot to feed him when we got home from the grocery store. Hubby went out and fed him while I made myself some food as I had only snacked in the morning. The trip to Costco took so much longer than we anticipated.

I started a new easy knitting project that I could take with me to Support Group and took in the hats, scarf and cowl I finished from the yarn cousin “P” sent. I still have two more hanks of yarn to work with, but I just cannot handle the needles needed to work with that yarn, so they will have to wait until I can knit with small needles again. I am not even sure I could crochet with yarn that fine. I guess I can try and see what happens.

We headed to group and went to our separate meeting rooms upon our arrival. One of the ladies in my group loved the wristlets and wanted to pay for them, so I told her to make a donation to Dr. Susan Loves Army of Women instead. She did right then and there. One of the other gals in my group took one of the hats and the cowl for her sister that is battling breast cancer. Another gal took the beaded scarf, it looked beautiful on her! I left the rest for anyone who needs them.

I did tell my group about all the issues I am now experiencing with this phase of chemo. One of the gals who just finished the last of her radiation, but also went through the same chemo regime I am on said she threatened to quit chemo every week. She totally understood my frustration and told me it will be over much more quickly than it feels right now. She said just keep venting here and you will get through this. It sucks and she understood the frustration of not being able to control my brain, etc. She said threatening to quit every week actually helped her to stay the course. So that is my plan, I quit chemo after this week!

Life is venting and threatening to quit (reverse psychology at its finest)

Monday, January 1 – New Year, New Me

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, December 31 – Good Bye 2017

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