Saturday, December 31, 2016

On my third chemo day, something remarkable happened late in the day……

I woke up on Thursday – chemo day – and felt good.  Jeannine was here and wanted to go to chemo with me, and I was excited about that.  When I arrived, Erica, the infusion nurse asked how I was feeling.  I said, “I’m good – just feeling kind of ‘hyper’ today.” She said that was from the steroids that I take the day before.  I told her I was full of questions, and she said that Dr. Powers was in, but I didn’t have an appointment with him.  I told her she could probably answer them.  Mainly I wanted to know what the reason for all the steroids was, and she said it was to counteract the chemo side effects, and it would make me feel this way.  I talked with her about how I had the near-fainting spells on both Mondays after the 1st 2 treatments.  She thought I just probably got too hot and had not eaten breakfast 1st.  I did tell her that I had learned to eat more protein throughout the day, and eat protein before bed, and that helped me not be so shaky in the mornings.  I had been eating breakfast before showering lately, and that did help.  I said the hot flashes had kind of returned even though I was taking the gabapentin, and I really didn’t want to increase that dose until I had to because of the side effects that add to my shakiness.  I was also concerned about my blood work, because I knew I was slightly anemic, and I wondered if that contributed to my needing to eat more often.  She said she would gladly print out the results of my lab work this morning so I could see it all.  She is just so sweet, reassuring, and accommodating.  I will really miss her when I go home.  I hope I get someone there that is as kind as she is.

She drew my blood.  My, that port is nice.  I don’t feel a thing when I put that numbing cream on, covered with Press N Seal ahead of time.  When the results were ready, she brought me the print out with the items circled that they look for.  She said my values were great!  The hgb and hct did drop slightly again, but she assured me that they were just fine.  “You should see some of the them that come in here!  You are doing GREAT! We would not give you chemo if you weren’t.”  My white count is holding well, so that is good.

Just before Erica started my meds, Dr. Powers came to my side.  He asked how I was doing.  Apparently, Erica had said something to him, and we discussed again some of the questions that I had.  He just continues to be the nicest doctor I think I’ve ever had.

She then started the IV Benadryl, 25 mg again, and I was able to keep on visiting with Jeannine right through that part – no restless leg syndrome at this dosage.  Then the Pepsid followed by the Decadron.  I have to wait 30 minutes after that before starting the Taxol, and it takes about an hour. 

Just after the IV started, out came Dr. Powers again.  His nurse was with him.  This time he looked over my head really well and checked out the 3 spots that are already there.  He DID NOT FIND ANY NEW SPOTS!  Woo hoo!!!!! He is very pleased that the chemo seems to be doing what it is supposed to do.  The incision on top of my head, from the last surgery, has opened up just a tiny bit, but he said it was OK and healing alright.  I was glad to hear that, because it kind of concerned me.  So, over all, he was very reassuring to me.  I just can’t have enough good things to say about this man.  How I wish I could take him home to Hutch with me.  I gotta say, I have had the BEST doctors here at this KUMC.  God was, and is, so good to me to provide the very best care here. I just have to trust that He will lead me to good care in Hutch, too.

The time went pretty fast with Jeannine there to keep me company.  We caught up on lots of things!  When I left, I really felt pretty good, so we stopped at the grocery store on the way home.  The rest of the day, I felt great!  My energy level was high, and I was able to enjoy my family the rest of the day. We had our 2nd Christmas with Jeannine and the girls.

As I sat down to eat supper, I ran my hand through my hair to brush it back, and out came a bunch of hair!!!  

Oh, no……it has started!!!  It’s funny because as we left the chemo center, I had just said to Jeannine, “Isn’t it amazing how you can just walk away from a place feeling fine after you’ve been filled with an hour of poison and feel no effects?“ I knew the time would come, so I really wasn’t all that upset about it. I know that I’ve talked a lot about my hair, but honestly, losing my hair is not that big a deal for me right now.  Half of the back of my head has been bald since the middle of October anyway, and part of that area – where the flap is – will never grow hair again.  So, I really have accepted the fact that I’ll not have a normal head of hair again. 

After supper, we kind of made a party out of cutting my hair.  Jeannine wanted to trim it, and I wanted it short enough that it would fit under my hats, and not be hot on my neck when the hot flashes came.  

After that I got the two wigs out that had come, and the one I thought I’d like the best just didn’t work for me.  It was more blonde and longer – kind of whispy. It looked really nice online, but it just looked like a wig on me – couldn’t get it to look quite right.  So, then I tried on the shorter, darker one.  

That one just seemed to be more me.  I thought it might be a little dark, but I liked the highlights that lightened it, and it seemed more comfortable on my head.  I put the picture on Facebook and asked for opinions.  Honestly, I never expected so many warm and kind responses.  😊 Immediately, my timeline lit up!!  My sister called immediately when she saw it and was crazy about it!!  She said,” Take the tag off of that one!  It’s a keeper!”  So, I guess I got that message loud and clear – that one’s a keeper.  I’ll send the other one back.  I thought it might be fun to have a couple, just to have a change if going out where no one knew me.  But it’s such a chance you take when you order online for color, shape, etc.  But it’s not like I’m picking my hair for the rest of my life!  😀  Throughout the rest of the evening, I just couldn’t help running my hand through my hair – yep – it was for real – 4-6 strands in my hand each time.  One of my FB friends said, “Well, stop running your hands through your hair!”  😊

Now for the absolute HIGHLIGHT of the entire day.  Get ready for this!  This absolutely blew me away!  Late in the evening, I got a PM from a former nursing student of mine who is a FB friend of mine.  I have permission from her to share this, but will not reveal her name.  We both share this in hopes that HER story may save the life of someone else!!

“I have followed your posts and updates and wanted to share something with you. Because of you I had the mole on my chin checked out. I had put this off for at least 6 months. Well it was melanoma in situ with an underlying benign tumor. Had a biopsy done on December 13th. Got the result the 15th and had an appointment on the 16th at 8m to have it looked at. After looking at my options I went with the aggressive option with recommended margins. It took a significant chunk out of my lower chin. Biopsy came back clean and I am cancer free. Thank you so much for sharing! You are the reason I had this checked. I pray for you daily and I am so grateful for your courage and strength.”

I sat there reading that with goose bumps and tears in my eyes.  How many times have I asked God, “Why?  Why did this happen to me???  What possible good could come from all this??”  I know God has a divine plan for my life, and I try not to question that, but my humanness is still there.  I know already that there have been many positive spin-offs from this, and for all those I’m very thankful.  I have, in turn, received so many blessings myself, and I’m most thankful for them!  But THIS….this just blew me away – overwhelmed me!  To think that I may have directly saved someone life…..well that’s almost too much to comprehend.

“We never really know how we touch each others lives. I am overwhelmed by the fact that you are in my life and have had the courage to share your story. I will forever be grateful and in your debt. I'm teary eyed writing this. Sending much love and prayer.
Thank you! Thank you! Thank you!”

I’m so grateful she shared her story with me, and SO thankful her outcome was good.  Again, perhaps HER story will save the life of someone else.  As she said, we never know how our lives touch others.  I pray we both keep touching lives for the good.  Made my whole day – whole week!

The next day, Friday – after chemo, I still felt good – good energy, not too shaky – as long as I eat plenty of protein throughout the day, it helps with the shaky feeling.  That seems to be my main side effect.  Some of it I can control with diet – some of it is just there.  The steroids help me have the energy and feel good, but they do add to the shakiness.

Before Jeannine and the girls came I bought a couple jigsaw puzzles.  We all enjoy working on those, so we spent some good time working on one of those for some of the day.  Jeannine made a delicious chicken potato dill soup that we all enjoyed.  Sula had made cheese bread, so we ate well, especially good when I didn’t have to fix it!! 😊

Today, Saturday, I woke up with a little less energy and a little shakier.  😞 Breakfast didn’t take that away, but it’s not all that bad.  This is just a more stay-at-home and take-it-easy day.  My eyes are kind of teary and feel a bit swollen.  I remember that happened after the last one, so undoubtedly a coming-off-of-steroid effect.  I’m pretty much following the pattern that I’ve seen developing.  My “type-A chart-keeping” 😊 helps me see patterns developing.  

PLUS, I have to get ready to watch the Alabama/Washington college football play off!!!  ROLL TIDE ROLL!!! 

Over all, I think I’m still doing very well, and I’m so thankful to God for His every blessing that keeps coming.

I want to wish everyone a Very Happy, Prosperous, Healthy, and Blessed New Year!!  Much love to all of you for all the wonderful support and prayers you continue to send my way!!

And as always…….I remain in His hands…..

Wednesday, December 28, 2016

More of the journey....

This has been another basically good day for me.  Made it through a shower and hair washing without feeling like I would faint. We went out for lunch at Freddy’s.  Oh, I LOVE that creamy custard!!  Then I did a little Kohl's shopping - had an extra 15% off coupon.  I saved almost twice as much as spent. I needed some warm tops that open in the front for chemo days, so they can access my port, which sits under the skin on my left shoulder, about 3 findger-breaths below the far end of my clavicle – right under my bra strap. The incision is comfortable enough now that the strap does not bother it. Pretty much everything I had pulled over my head. Found two comfy zippered fleece ones. Paid a 3rd of the original price.  I love Kohl's sales!!

From Kohl’s, I needed to pick up some groceries before supper.  I had just a few things on my list, but always end up with more.  Shopping in this store seems to often wear me out, but today it WASHED . ME . OUT!  I got home and threw a "cowboy casserole" I saw on FB in the crock pot, and crashed in the recliner for a "long winter's nap."  By the way, that casserole turned out to be better than I thought it would. It was a hit with the boys, too.  (who came back this afternoon from their mom’s.  The leftover chocolate cheese cake from Christmas was still a hit with them, too!

Now we are just waiting for Jeannine and the girls to arrive for a week.  Can't wait!!  They are due in sometime this evening.

3rd chemo is tomorrow.  CAN wait!!  I'm anxious to see the results of the blood work they'll do prior to the infusion - to see if I'm more anemic.  I think this may account for the weak spells and less stamina I feel now.  My hemoglobin and hematocrit went down slightly last week.  (I was almost to get back to normal after the surgeries.)  There was a fair amount of drop in the lymphocytes, too – dropped from 30-10!  Not sure how significant that was.

I think I've learned to manage the shaky spells by eating more protein.  I eat a protein bar and drink a protein drink before bedtime, and I think that has helped me be less shaky in the mornings. I'm thinking that what I eat, and when, may have more to do with how I feel than the medications - at least where the shakiness is concerned.  I’ve continued to take the gabapentin at bedtime, and I’m wondering if the side effects of that decrease a bit as you get used to taking it.  The hot flashes have all but disappeared.  I may have 1-3 during the day – mild and short. What a blessing that is!!

I’ve devised a daily chart to keep track of things like energy level, shakiness, dizziness, fogginess, nausea (have had NONE so far!!!), appetite, hot flashes, elimination, day activities, medications, etc.  I’m also keeping a chemo journal.  These help me see if there is a pattern related to the chemo or the other meds I’m taking.  And it helps me with the questions I want to ask when I see the doctor or the nurse. Both of my near-fainting spells were the Monday mornings following the 1st and 2nd chemo infusions.  It may be totally coincidental, but we’ll see after the next chemo infusion.

My two wigs came today!  I’ve barely had time to just quickly try them on.  With my long hair still sticking out from under the quick try-on, it’s hard to tell how they will really look.  I think they are going to work just fine.  Pictures will follow later after I’ve had time to work with them a bit.

I finished crocheting Annie’s sweater, but I think it’s going to be too small for her.  I put it over her head, and when I tried to get her leg into the leg opening, she growled at me!  I may try to put her legs in 1st next time and then slip it over her head.  It seems to be a little stiff.  I had hoped it would be softer and stretchier.  I think I tend to crochet a little tight.  I make it out of plain Red Heart yarn.  This was pretty much an experiment, so I may try it with a little softer yarn when I get home and get to the yarns that I already have.


Overall, I must say that I've had a pretty good week for this stage of the journey.  I continue to REALLY appreciate all your prayers.

And as always……I remain in His hands……