How I'm taming the mane

Good evening my friends!


It's time to talk hair! If you follow along on the FB page or on Instagram, then you now know that I have hair...and brows...and lashes!!  This is big news! I've been bald since early June so this is progress. My lashes and brows fell out a while after my hair did but now, I'm happy to say, the whole family is back together. It may not be pretty, but at least it's something.


So, you might be wondering why someone with fingernails longer than her hair might feel the need to share hair care tips. Well, these tips are geared more for my chemo sisters and brothers who are following along. Losing your hair is a little traumatic, no matter who you are. Oddly, I was more scared about losing my lashes and brows because it removes some defining features from your face. Luckily, I planned ahead, researched and found a great tutorial for the brows - it's actually posted on the blog here...somewhere...do I have a "Helpful Links" page?  lol.  I'll have to check it out and make sure it's still up. Brows were easy, lashes were pain in my ass (excuse my French). I have two sets of false lashes, they were fine. I just never forgot I was wearing them. They felt weird to me, so most of the time I didn't wear them...so I had no lashes...so I still looked, well, incomplete.


(Let's pause for a story)
A few months ago, my vision had gotten so bad that I thought I'd better go see the eye doctor. I was worried it was somehow related to chemo. During one of my infusions, I was chatting with my roomie and she asked if my vision seemed worse. I told her YES!!! At that point, I thought, maybe there is something to this and I should get checked out. Turns out that my issues are more likely related to age than treatment. Well, dang it! Anyway, as I'm chatting with the doc, he has those lovely super duper close up pictures of my eyeballs on the computer screen. He laughs a little and says, "Wow, your lashes are pretty pitiful."  Don't worry, he's one of us, so it's ok if he says stuff like that. My response was, "Well, duh!!" He felt so sorry for me, he wrote a prescription for Latisse. Yes, that stuff that's supposed to grow lashes. He said it works great. It was originally used for glaucoma patients and they noticed that their glaucoma patients had spectacular eyelashes. Now they market to the lashless. I never had the prescription filled. It wasn't worth $150 bucks a month me. If it would be worth it to you, make note of it and don't be afraid to ask your docs. I think he said it takes 2-3 weeks and then they come in nicely.
(end of story)


My hair has been trying to grow back in since before chemo ended...so sometime in late August, early September, I started to see some follicular action. It started growing but the coverage was pretty light. Since I head heard stories about how coarse and unruly the initial regrowth could be, I started planning. I knew I couldn't stop the chemo fuzz, but maybe I could tame it. My goal was to do everything I could to make sure my hair was as soft and under control as I could get it. Chemo Fuzz is what comes out first. I'm sure everyone has different experiences but I had a feeling mine was going to be wiry, a little coarse, insanely curly and probably silver. I pondered what to do and I settled on ordering the Wen products. My thinking was that this hair is brand new, I need to be gentle with it and who needs all those suds anyway. I LOVE THIS STUFF! The hair that came in initially did have weird texture - it's still there I guess but the products have made it so much softer. When I was bald I couldn't stop touching my head. Now I can't stop touching my hair. I'm pretty happy. The deep conditioner is my favorite - I use it at least once per week (sometimes twice). I like all of the products but that's the best.  So there you have it. My attempt to prevent baby orangutan hair!

Life is good!

Love to all,

Andee

What are you thankful for?

It's that time of year again. Typically, I rant about how I'm thankful for all of my blessings, all year round, not just on Facebook in November. This is still true but I do have some things I need to share here. Unless you work (or have worked) with me, you might not know of my love of bulleted lists. Today is your lucky day, 'cause here come the bullets!!


I am thankful for...

• A husband who accepts me in all of my medically defective glory. Every single day, even when I looked more like Uncle Fester than the woman he married, he kissed me good morning and good night and told me he loved me. It may not seem like that big of a deal to you but when you feel fat, ugly and less than feminine, it's nice to have the hot guy living in your house treat you like nothing has changed. I know this year has not been easy on him. I cannot ever express to you how much I love that man.
  
• A family that has rallied around to help. They've helped with our children, cleaning, laundry, groceries, helping tend to our property, they've gone to treatment and sent me shoes for horribly painful feet (which aren't nearly as painful...thank you!). Neither Bobby nor I are good at asking for help - and thankfully, family was there so we didn't have to ask, we just had to accept. We can never repay the kindness and love we've been shown this year.
  
• For my children, who are WAY tougher than anyone might have given them credit for. We made the decision early on to be nothing but honest with them and they've handled it like troopers!
  
• For the women who heard my story and were inspired to go for their mammogram. I'm especially thankful that some of those woman caught issues early!  If there is a purpose for my diagnosis and experience, there it is! If you are due for a mammogram and haven't had it, please go. If you aren't due for a mammogram, please do your monthly exams.
  
• For strength I didn't know I had. In my early teenage years, I was a bit of a weenie. Luckily, by the time I was a junior in high school I realized I was happier when I stopped caring what other people thought. I was happy to NOT follow the crowd. After graduating from college I moved away (not too far) simply to prove to myself that I could take care of myself. Our life experiences make us who we are - even the heartbreak and scares we've experienced over the past several years, in some ways, prepared us for this challenge. And no, I'm not special and I'm not wonder woman. You never know how strong you can be until you have to be. Trust me.
  
• For family, friends and medical team members who laugh with me. Cancer isn't terribly funny and it took some time for everyone to get to the point where they were OK with laughing. Trust me, it makes all the difference in the world. Laughing is so much better than crying, I promise.   If you are a patient, let yourself laugh. Find joy in the everyday. It's there!
  
• For my doctors and nurses. I hope you never wonder if what you do makes a difference, IT DOES! I know you look after a lot of patients but I'm the only me I've got and you have made me feel like the most important person you see. Thank you!

That's all for today but that's certainly not a complete list. Every single day is a blessing, no matter who you are. Please don't take that for granted. I have learned to be thankful for even the worst days - because they remind us we're alive. What a year, friends, what a year!


Love to all,
Andee

Catching up

 

 

 



 

 

18 to go...18 to go...18 to go...18 to go...18 to go...

 

We are moving right along. I completed #15 today. WOOT WOOT! This week was one of those weeks that had 3 "blue thing" days. I just realized that I have not covered exactly what the "blue thing" is. Let me see if I can get this right...and have it make sense.  Here we go!

 



As you might imagine, the site of my surgery is structurally, well...odd. It is not flat and smooth. This presents a problem when you're trying to target an area for radiation, The technical term for the "blue thing" is a bolus. The bolus is used as a tissue compensator. In the documents submitted to the FDA, .decimal (dot decimal), the company that makes them, explain their function like this:

The Bolus Compensators are designed by the customer's treatment planning system to block radiation from hitting critical structures and healthy tissue while guiding the radiation to the target area.
 
I tried to find a good sample photo but wasn't successful. That means I get to try to describe it. Each piece is custom made based on the scans of the patient. It is then manufactured from machinable wax. One side is like a molded chest plate - it fits all of the wacky contours of my chest. This is put in place every other treatment day.  And that's all I've got to say about that.

Today after treatment I took a little field trip. I have been working remotely since the end of August but I haven't been to the office since just after surgery, in May. Well today I made the trip to Louisville to visit my work family. It was SOOOO good to see everyone. I was able to see my old friends and meet some new folks, too! Our staff has doubled in size since I went on leave. How about THAT for good news. It felt so good to have some normal and I sure did feel the love. I was straight up exhausted when I got home but it was worth it.  Thanks to everyone for making me feel so welcome after so long. I love you guys!!

Have a great day everyone, I'll be back later.

Love to all,
Andee

Let's Talk About Phteven (aka Tuna)

 

 

Hello there, friends. As promised I'm here to explain the crush on Phteven (AKA Tuna). Tuna is his real name. He is a chiweenie (don't you just love that?). Tuna has a bit of an overbite but, as you can see above, it's not always as prominent as it is in the meme shots . He was adopted as a pup and has become something of an Internet sensation. He just released his 2015 calendar. He is on Instagram (@tunameltsmyheart), you should check him out if you love the cuteness.

So how did I fall in love with Tuna? At this point I don't remember if I saw him prior to the incident I'm about share, but the short story is that I love the underdog. I have a special place in my heart for rescue animals and especially "special" rescue animals. Whether they have a disability or, like in Tuna's case, an unconventional look. Everybody needs love people!

Now let's talk about how Tuna became part of my chemo experience and for endless cell pic exchanges back and forth with my sister.  During my second (I think) chemo session, Karla and Bobby and I were talking. I have no recollection of what I was going to say but I began a sentence with (what I still claim to be) the words "I think" - as Karla and Bobby tell it, I, for some unexplained reason, said "I p-think." They found it very funny. The meme exchanges started shortly thereafter and Tuna joined the party pretty quickly. So, you might be asking how Tuna gained the "Phteven" alias. The story is that some guy asked the DMV for a personalized plate with his name on it. He told them his name was Stephen "with a PH"...when he got the plate it was spelled like this..

 

 





 

I'm not sure how true any of this is, but Tuna's overbite apparently fit and here we are.

I think the early pics we shared were related to my excessive sleep during round 1 of chemo and just grew from there. Here are some examples.

 

 

 

 

 



 

 

 

 

 

 

So that's how Tuna/Phteven became part of my life. I love this little guy. If you are lucky enough to see posts from my sister on FB, you know that she has grown to love him too. 

 

So now you know...

It's not much but it's a post.

I should be in bed but today was a good day so why not screw it up by staying up late?!  I do this for you, my friends (and for me but you don't know that).
If you keep up with my random posts on the Facebook page then you already know that I didn't have treatment today. I was in the car, in the driveway ready to roll out when the phone rang. They said that the machine was down so my treatment was canceled for the day. The good news is that I came back in the house and was able to sleep for a couple of hours. The bad news is that we've added another day before treatment will be done. The great news is that my skin was able to rest for a day and I was spared a day of fatigue-enhancing treatment. If my math is correct, the positives outweigh the negatives in this scenario. WINNING!!

I am happy to report that my chemo/post-chemo side effects are improving. I'm still hobbling around due to the neuropathy, but it's not getting worse. YEEHAW!  As you know, the radiation is causing some serious fatigue and some somewhat angry skin. I'll take angry skin any day of the week when the other options is "peeling off my body" skin.  It may get worse but for now, I'll take the sunburn and smile about it. Hopefully, I didn't just jinx myself but yes, so far so good. I will be updating the Radiation Tips page very soon so watch for that - if you're interested.

I have some posts in mind and I hope to get them written and posted this weekend. Finally, something new!  I'm off to bed friends.

Love to all!
Andee

Rapid fire morning update

Full post to come later but here are some quick updates:

• I am through 10 of 33 radiation treatments, as of yesterday. Fatigue is a bear and the burn is getting real. No peeling yet. Woot woot!
• My nose has finally recovered from round 2 chemo. It took some time but no more bleeding or, uh...remnants of constant dry nose and nose bleeds. Woot woot!
• My neuropathy issues are slowing improving but will likely be around for a while. That equals me hobbling around for a while longer. 
• My hair is growing like crazy. My head is about 90% covered with some filling in to do. Brows are back! Lashes are back, too. They are super short but they are there and just long enough for mascara. Of course it looks like eyeliner at this point but I'll take it.  I am emotionally done with wigs. Lol. I think it's because I no longer "look sick" with no hair, brows or lashes. I just look like a chick with crazy short hair. I still wear hats cause the dome gets cold and I can't style this stuff yet. There is almost enough to part it!

Gotta run

Love to all,

Andee

A perfect 10

Side effects that show up after chemo ends

This is going to be one of those factual posts. I've learned something new this week about side effects from chemo. They can appear AFTER CHEMO ENDS. During my taxol treatment I had some really annoying tingling in my toes. It was REALLY, REALLY annoying but somewhat tolerable. It certainly wasn't bad enough to delay treatment. Fast forward to a couple of weeks after treatment ended. The tingling started to change. It became less tingly and more like mild pain. I went through a phase where I had painful arches, too. Late this  week I've transitioned to real pain. It is not pleasant. My best description is that it feels as if the soles of my feet are deeply bruised. Every step is painful. I reached a new level of pain yesterday. I've mentioned before that I soak in a hot bath each night to help with the joint and foot discomfort - well that ended last night. With the new neuropathy in my feet, I was in tears after my bath. I'm assuming the increased circulation from the bath caused the pain but a few minutes after I got out of the tub, the soles of my feet felt like I was being stabbed with thousands of needles.  I usually have a good pain tolerance but this was too much. My dear husband held my hand until it eased a little and then I had to walk it off...literally. Though I was still in pain, I also had a restless feeling in my feet...I had to move. Needless to say, I will be taking quick showers for a while. I see my medical oncologist this week so we'll be discussing this turn of events. As always, i've found the upside. At least it didn't happen during treatment because I may have allowed a delay...maybe. Lol

If you are a patient, my advice is to be ready for anything. Don't let things get you down. Just deal with things as they come and keep your doctors informed. My hope is that this is just temporary and I'll get my normal back. One day at a time. 

http://www.mayoclinic.org/diseases-conditions/cancer/expert-blog/chemotherapy-neuropathy/bgp-20056305

Love to all,

Andee

Let's track, shall we?

Apparently morning quick posts are going to be a thing...

Howdy!
I'm getting ready to roll out so I thought I would give a quick update. Also, today is another "Blue Thing Day!"  Yippee!! Short story here (more detailed post planned) is that they use a blue wax piece, custom made for Yours Truly, every other treatment. Typically they do "skin sparing treatment" but OH NO, not on "Blue Thing Day".  I'm now a week in and the redness is starting to appear - nothing major at this point. It should reach truly nasty levels this time next week. I've had that "sunburn" feeling since the beginning but the skin is still trying to stay normal. I'm doing what I can to take care of it but ready for the worst. They say if it gets bad and peels it will NOT be like a sunburn. The exposed skin will be like (if you get grossed out, stop here..........

 

ready?....

...the skin under a blister. Nice and raw. OH JOY!!  Let's just say a little extra prayer that THAT doesn't happen.

On a more fun note, I decided that now is the time and I started my next restoration project...ME!! I've been watching portions, being more choosy about what I eat and I've been walking on the treadmill each day. I'm proud to say that I've already lost 3 lbs since Monday! I have so much more work to do than just weight loss. The lack of anything close to strenuous physical activity for the past 6 months has made me weak, on top of everything else. This is going to be a project but I'm game! I'll keep you posted on progress...somewhere.  Operation: Fat Be Gone is underway!

One final thing - I made myself giggle just a bit yesterday. I have a bit a of a commute to treatment each day. It's not too bad but it give me enough time to get bored at red lights. Yesterday, I started my trip by listening to Radioactive by Imagine Dragons, as I do each morning. It puts my mind in the right mode (laughing) and it's a pretty good tune. At a particularly lengthy red light cycle, I realized that I had some other songs in my library that could apply and so the beginnings of a radiation treatment playlist were born. So far we have the following:

• Radioactive - Imagine Dragons
• Sunburn - Fuel
• Burn - The Cure
• Burning Bright - Shinedown

I have others in mind and will add them soon. For some reason, this kept me entertained all the way to treatment. The other commuters trapped with me at intersections were probably wondering what in the world I could be so happy about.

Celebrate life and laugh a lot today! I promise, it helps.

Love to all,
Andee

Tracker update

Feel the burn

Good morning friends! 

I (unintentionally) woke up way too early this morning 😬 so say a prayer for me. 🙏

Things will get hopping shortly so I thought I would try to give a brief update. Yesterday was "Wear the Blue Thing" Day and also "Doctor Day". I'll explain the blue thing, as best I can, in the next post. Doctor day is pretty self-explanatory - I see the radiation oncologist on Tuesdays. We chatted about how treatment is going, she checked my skin (for now, it's still there) and then she asked if I wanted to see my treatment plan. With pictures...of my INSIDES!  Well, heck yes I wanted to see. She showed me the areas being treated, how and where the radiation is entering the body, where the beams were treating in relation to my heart and lungs (both are very close to the line of fire and could take a tiny hit).  It was pretty fascinating. She also pointed out that the scan showed a seroma (fluid) where I had nodes removed but it has actually gotten smaller. Then she said the words every cancer patient wants to hear - "The scans showed no surprises. We don't like surprises."  Well zippitydooda! Thank you ma'am! Every time you have a new scan, of any kind, there's always the fear of someone saying "we've found something".  Well not this time. Oh yeah!!  Woot woot!!!

I gotta go. Pray I stay awake and somewhat coherent today. I can do this. 

Love to all,

Andee

I forgot to update the tracker...until now!

I promise I haven't given up on the blog! Brief update...

Good morning friends!
I'm trying a quick post before I leave for treatment #4. Goodness gracious...I still have so much to write about but here's the short version of why I've been so quiet online. I promise, I still have a lot to say but my world has changed dramatically with this round of treatment. Let's review a few points...

• I help get the kiddos fed, dressed and out the door for school so we get up early.
• After they are off to school I get ready for treatment
• My round trip for treatment takes almost 3 hours - though the time on the treatment table is only about 15 minutes.
• I get home and try to eat something and work for a while. I can work until it's time to pick the kiddos up from school so I can get about 3 hours in, if all goes well.
• With side effects and risks of treatment and my medication (there will absolutely be a post on this...at some point) I have to walk daily. Short story is muscle and joint pain and/or weakness and increased risk of blood clots - I have to move whether I feel like it or not.
• Then a soak in a hot bath to help with the "discomfort" mentioned above.
• I no longer have insomnia because I'm so exhausted by the end of the day, when I lay down I go to sleep...for the night.

There are not a lot openings there and it's been challenging on some days. I'm still fine and still a goofball so don't read more into the above than I'm just sharing facts...I told you I would share and boy, do I!  lol

I'm sure I'll better adjust to everything as we progress. If you are a patient, my advice here is to take radiation seriously. It's not necessarily the treatment itself that will get you (I'll revisit this part if my skin falls off) it's the schedule.

I gotta run. The race for the day starts now. I hope to be back later.

Love to all
Andee