Chemo group starting December 2014

Hi Everyone,

Just letting you all know that Morgan and I made it safely back home! It was a true story of trains, planes and automobiles - but praise God, all went well and we made it back safe and sound! We were supposed to get home on the 30th, but once we landed from our long 11 hour flight from London to Houston, we discovered our flight to Denver had been cancelled, and they were oversold on all the other flights. Morgan and I were tired of flying anyway, so we just parked ourselves at a hotel and rested and then flew out the next morning on the lovely new 787 Dreamliner - both of us upgraded to first class! That is such a wonderful new plane....you could probably go without a pressure stocking with how well they pressurize the cabin.

At any rate, we arrived and quickly hopped on the tube to go into central London. We spent the afternoon shopping at Herrod's and had afternoon tea there - very nice. We also shopped all over that area and had great fish and chips at a local, non-tourist pub. I had a great cask ale and Morgan had a Ginger beer...ick. She didn't like that. :-) I offered her a sip of my beer and she declined, she was probably jonesin' for a Starbucks! By the time we finished, it was pitch black out (they are way north), and so we headed back on the crowded tube (almost puked during that ride), and got back to the hotel in one piece. Note for next trip...we will not stay all the way out by Heathrow. That is too far.

That night was tough - major stomach/intestinal cramping, kept me up all night...we didn't get moving until 10:00 a.m. However, I sucked it up, we bought a Big Bus pass and toured throughout downtown England. We stopped at the National Gallery for some art gazing, which we both love, and some lunch. Then we walked from there all the way down to the London Eye, saw Big Ben, the Westminster Abbey and the Parliament building! It was starting to get dusky by then and we got some beautiful pictures - I'll share them on Facebook.

The next night was a little better, got up and on the plane - was able to get Morgan upgraded this time to first class with me. She was VERY thankful, as that was a very long and dull flight. We ended up in Houston, where the story began. :-)

Today I am feeling terrible - stomach/intestines hating me, tastebuds dead, appetite gone, lips dried and cracking, mouth sores, aching joints, etc etc. However, I look back and realize that I could have been going through all of this in London and now am at home where I can just relax and allow my body to recover. I am very thankful for this and I know Morgan appreciated the trip and time with mom. We certainly didn't get to see all we wanted, but the beautiful city, all lit up for Christmas was spectacular and we definitely want to return - AFTER we are finished with this fight against BC.

I see a few new folks and also see that we all have been struggling.

Wheelygirl- hang in there and ask for another NP. This one may be fresh out of school, and you definitely need confidence in who is providing your care!

Canuck - I am sorry you feel alone and hope you find comfort in others who have similar treatment plans. I am on TC plus trastuzumab, so I can at least relate to that with you... please know that you are NOT alone and we are all here to cheer you on!

April - I hope you are home and getting plenty of rest and fluids!

Mammamule - Welcome and congratulations on getting through your first treatment! It appears you are sailing through with flying colors and I truly believe in "mind over matter". How we approach this has a lot to do with how we experience it. Listen to SpecialK - she is a wealth of information and is absolutely correct in all the advice she has given. What a blessing to have her on our journey to help guide and walk us through it all.

Happy New Year to all! My personal prayer and thoughts going into this new year:

"Do not conform to the patterns of this world, but be transformed by the renewing of your mind (and body ;-). Then you will be able to test and approve what God's will is, His good, pleasing and perfect will" Romans 12:2 NIV (with my extra comment added)

We all have a plan for our lives - a perfect plan not to harm us! Let us all find our legacy and live our lives to the fullest - through the best and the worst of times. That, at the end of the day, we will each be filled with a sense of completeness.

All my best,

Akitagirl

april - no, icing the mouth is strictly for prevention of mouth sores. 

Our wonderful daughter cooked us the best New Year"s dinner in the world and made us dinner boxes to go so we could pick them up and come home and eat with my 78 year old mother (who I am very blessed to have alive and living with us). It was by far the most nutritious thing I have eaten in over week. We are truly blessed.

Hugs to all, Happy New Year!

Bladder pain is all but gone. I would like to share with you all my latest caringbridge update. I decided to start a caringbridge as my family is all over 600 miles from me and I have a HUGE family. You can also get your entire site made into a PDF file so I am keeping it this way for my kids when they are older to look back on and see what we went through from my perspective. (P.S. Dorothy is my cancer's name)

So, as my Facebook friends and my family know; my car died on Tuesday morning on the way to work. As I told people about it they were devastated for me. I was upset, but not in a way that caused any undue stress. I knew that there is a local taxi service to get me to and from work and that my friends would gladly provide transportation to chemo. Took a couple hours to figure things out logistically and then I simply let it go. This is what I wrote on Facebook:

Dear Dorothy; You have no idea who you are dealing with. I may be just a single person, but I am a warrior. I have fought harder enemies than you and came out the victor...remember depression...yep, I won. Alcoholism...still winning. You finally decide to break my car...and you know what, you can have it. You were too late...it already did it's job getting me to all my appointments. What you seem to forget is that I do none of this alone. God stands beside me, and goes before me in to battle. My family and friends cover me when I am weak and make me strong again. So thank you for reinforcing to us all that with God and each other NOTHING can stop us!

This morning (New Year's Eve) I woke up exhausted and called into work and decided to spend the day in bed (which turned out to be a good idea because I ended up sleeping almost the entire day).

Then I got a phone call...I let it go to voice mail and when I listened I wasn't sure what I was hearing. It was a car salesman (Matt S) from Westside Motors here in Thief River Falls calling to tell me that he had gotten a phone call from Santa and that my gift would be ready to be picked up at 4pm. The benefactor gave him specific instructions to remain anonymous.

At 4:00 pm the boys and I went to Westside and were shown our brand new (to us) 2003 Dodge Caravan. The papers were signed and we were free to go...

Then Dorothy stuck...hard. I asked to use the restroom as I felt as though I was going to vomit. For the next half hour I suffered quietly in the restroom, sweating so badly it soaked the t-shirt I was wearing. During that time the boys grandma had come to check on me and I told her to take the boys for supper and that I would meet them at hockey.

When I finally emerged I sat in one of the recliners in the customer waiting area and felt like death for what felt like forever...I kept thinking, "I gotta get outta here before they want to close and practice starts at 5:30." I mustered the energy to get up and immediately a gentleman asked if was ok...I looked like death...sheet white with dark black circles for eyes, my t-shirt drenched, and now shivering cold. I told him I was fine...what was I supposed to say, :No, I'm not fine, I have cancer and I think I'm having a reaction to my chemo?" No thanks, I didn't need that kind of drama. I will admit, for a little while when I was alone in the bathroom I considered taking an ambulance to the hospital...but my cell phone was in my jacket...in my new van. There was NO WAY I was going to put the people who work at Westside through having to deal with a sick customer on New Year's Eve at 5:30. I have VERY strict instructions to get my ass to the hospital with any fever that reaches 100.5. It means immediate antibiotics and if other signs of infection are present I would be admitted for IV antibiotics. Chemotherapy leaves my immune system compromised and any trouble could be dangerous. Not only that, it could delay chemo treatments. I don't care how sick I get (easy to say that now) but I want this to go NON-STOP until we get to the end.

So...almost alive, I was ready to leave. I called the boys' grandmother and told her that I was going to go home instead of hockey and that I would be ok. I thanked her for bringing them in to town early so they could be there for the vehicle surprise...they both loved the new vehicle and enjoyed playing in and around it.

I came home and had a hot bath, texted my mom and sister to tell them the news about Santa and have been on the couch since. I am hoping to be able to work tomorrow after missing today and will miss half of Friday for chemo. I may go in for a few hours this weekend if I am feeling ok to try to make up some time.

So...Dorothy may have thought she won...but she didn't...again. And she won't...ever.

Sooooo...Santa was a few days late bringing my present (probably couldn't figure out how I made the nice list in the first place and ordered a recount). Today I was given a 2003 Dodge Caravan by an anonymous donor. I went to pick it up and proceeded to get deathly sick at the dealership...guess Dorothy was jealous. Home now and resting. There TRULY are good people here and I am so lucky to be surrounded by them.

And...my super 'milk out my nose' laugh of the day was thanks to Heather B.:

My Facebook status Yesterday: ONE THOUSAND visits to my CaringBridge page...you really are a nosey bunch!! I love you ALL for the support, the care, the understanding, the love. I feel so lucky to have such an awesome team on my side!

Heather B replied: I confess, I probably wracked up 346 of those visits.  Who were the other three visitors?  (tee hee)

Here's to a 2015 that is even MORE awesome than 2014 was, this was definitely one of the best years of my life.

CanuckPrincess - you are strong, able and will overcome Dorothy. You obviously do not give up or in and God has given you this strength and continues to provide this for so many reasons, yet only few we now understand! What an absolute blessing to have such a wonderful need met at just the right time. Again...this whole journey reminds me of being in the desert, having been uprooted from home and promised a great wonderful land, only to find ourselves in the desert. Feeling sad and somewhat hopeless, we shout for something, anything, and we always end up getting just what we need, when we need it. Then, after time, the perfect time, the revelation of what's to come finally appears and becomes reality. This image sustains me through all of this and I look forward to this time next year, when we will have just returned from our cruise, this time next year when on January 2nd (tomorrow) I will share my 23rd anniversary with my husband. This year....I am still celebrating, but also seems dimmed and I sometimes wonder if my hubby will hang in there for better or worse. Of course, he has, but I still sometimes worry, as I am not one to walk around wounded or sick.

However, in spite of these feelings and experiences, next year...this will begin to become a memory and not a 'day-to-day' live video capture. All good things will come. We all just have to get through this little blip on our map of life.

Akitagirl

Is there something about hot showers that allows hair to totally fall out?

I lost quite a bit of hair during my last shower, so I thought it was only a matter of days... but I still had most of my hair and could go about pretending to be half-way normal (aside from having IV drips and diarrhea and a picky appetite, anyway). Then I went in the shower this morning and everything fell off, pretty much! Not on my pillow or elsewhere, just in the shower--pretty much all at once (I have a few sad strands left, which I chopped down a few inches, but they are definitely not going to last the day, I think!).

It's weird how the clumps of hair seem so totally dead and matted in the shower... I'd have freaked, but I'd been expecting this for weeks, so it wasn't as if it was a surprise... although the suspense as to when it would happen was there. I wondered if it would be a slow loss, with clumps here and there, but no!

So... pretty much massive hair loss a few days after the 2 week mark from first Chemo. Pretty much on schedule, I guess!

...Now I have to see how much wig-wearing I can bear. I'm still wrapped in a towel at the moment!

That yucky mouth feeling is not fun! BUT-- oddly enough, coffee was still OK for me--at least if it had milk and sugar in it. Anything creamy was OK. I had the heart-burn thing, too. So anything too dry or too acidic was not welcome!

I'm still sort of feeling that way. My mouth isn't feeling as bad, but I'm still getting a touch of heart-burn and still only want mild, creamy foods...

My sister is keeping me away from crowds, too. She forgot and let me go to the mall to return two items I'd bought before I was diagnosed and tried to herd me out quickly saying, "don't touch anything! use your hand-sanitizer!"

I don't mind staying at home, actually. But she was trying to get me out and walking a bit. There's a little park nearby my home, so I can always go there for a short walk and some air...

Wig--not bad for keeping my head warm. I feel like it's going to pop off sometimes, since there's not much to anchor it to! It's not too bad wearing it, though. Not uncomfortable, anyway. But I should get some comfy hats to wear inside, I think. My friends are crocheting and sewing me hats. They are so sweet!

---

still have the D problem... Left a message for my MO. But maybe it will get better over the weekend...??? I hope!!!!

Hmmm--- yeah, I can see the water pressure doing something... Oh, and also getting the hair wet will weigh it down and maybe pull it out faster???

Interesting--because I wasn't shedding anywhere, but once I got in the shower, gobs would fall out! So, at least I haven't had too much of a shedding problem. NOW I do, because I just have little bits and pieces left and they are ready to come out--so I wore a headscarf to bed last night to keep from shedding all over my pillow.

Bald head is no fun to look at. I try to avoid it. Just pop a pre-tied scarf or cap on my head and try to ignore the whole bald-look, which doesn't really suit me (not a pretty shaped head!).

My scalp felt a little tender last night, too.

Wore my wig for the first time yesterday... It wasn't bad, but it felt like it wasn't staying on my head very well, even with one of those non-slip bands...

Heartburn --- I don't have it usually, either, so I wasn't sure what it was at first. I mean, I sort of thought it was heartburn because it literally felt like a burning feeling in my stomach... But I'm not usually nauseous, either, so I wasn't sure if it was just being nauseous! But I had Pepcid and Zantac around because I knew heartburn might be a problem--so I was taking either one or the other every now and then when I felt the burning... I took some Zofran, too, in the beginning, but mostly because I wasn't sure what was going on...

I was definitely feeling like the chemo was killing my taste-buds and stomach lining! And apparently was doing stuff to my intestines and colon to cause the D-problem, even though I couldn't feel anything there. But I was told that TCHP tended to be hard on the GI tract and not so bad as far as nausea... And that was really true for me (in a bad way!!!).

---

I'm feeling pretty normal, aside from the baldness, in these last few days before my 2nd chemo. I only hope my D is under control enough that I can do the Chemo. I know some doctors won't go ahead with chemo if the D isn't controlled...!

It'll be great when the holidays are over, so I can be in more easy touch with my doctors, too. almost everyone was out of the office at some point over the past few weeks...

Specialk - I did not take any preventative measure regarding my nails during treatments as I did not know that was a potential side effect.  My big toe nails have become tender, is there anything I can do now or is it too late?

Just changed from my pajamas to yoga pants and an exercise shirt. Every bit as comfortable, but psychologically feels so much better! Plus not embarrassing if I end up answering the door!

Any idea how long till the stubble on my head falls out/off? I really hate to get out the blade and cream unless necessary, but it kind of bugs to be prickly.

Nail changes are pretty common - at least lines, ridges and darkening.  Those on taxanes are in a bit more danger of nail loss, but not everybody has it happen.  Unfortunately, it is a side effect that can spell permanent problems, so prevention is worthwhile, but also not 100% foolproof.

I never went shiny bald - I shaved the hair down to about 1/4" and still had sparse patches throughout chemo.  I still had to shave my legs throughout chemo, just not as often.  Lost it everywhere else though.

Try a wig cap under your wig - it is kind of like a pantyhose for your head, lol!  Here is a link:

http://www.wigs.com/nylon-wig-cap-by-beautimark.html?color=brown&gclid=CKG-1Jik-8ICFWRp7Aod2hoANA

or cotton:

https://www.tlcdirect.org/Pair-of-Cool-Comfort%E2%84%A2-Wig-Cap-Liners.html?did=15

Hi, jcfree. Sorry you have to be in this group, but I hope it helps you a bit. (I definitely need this board... so many questions and things to think about! I'd never be able to research it all by myself. I'm so glad this is here as a resource!)

I had my first chemo on Dec. 17... and it wasn't a picnic, either! (I landed in the ER and hospital... and still have low potassium & magnesium levels to deal with). I'm scheduled for my second chemo on Wednesday. Good luck with this round!

Most all my hair fell out 2 days ago... I still have little wisps of hair, but they are shedding like crazy. I'm trying to get used to wearing a wig. And a friend is having fun making some hats for me.

I wonder if I should try the icing thing? I really don't want my nails to fall out!!! Anyway--much good luck with that, too!

april25, so sorry to hear that you ended up in the hospital after your treatment, hope you are faring much better now and can tolerate the rest of your sessions. Thank you for the encouragement!

Mamamule, good to hear the treatments are working on your tumor it does make it worth it to soldier through the treatments because they are working when you can see it yourself. My tumor was 5.3 cm on my right side. For whatever reason I have to take this journey and so I will and take it head on, for my family and myself. Maybe someday I will know why this has happened and the life lesson I need to find from this. God bless you both and healing blessings through your journey too. Great to know there are women who are going through the same thing and through our mutual sharing we can help each other along the way.

Dear jensmart,

Don't be afraid to cry! the first time is very scary. The nurses won't mind and they are there to support you. Can you go take a look at the chemo. room and meet the personnel before Wednesday? That might help. Really, it won't be so bad once you get started...We are all thinking of you and wish you the best!! Farmdau56

There's a reason the docs offer us xanax and ativan and other stuff... This process is just full of anxiety and worry and stress! I filled my xanax prescription right away! I haven't had to use it much so far--but I'm glad it's there. Crying is just a natural thing in these circumstances. I'm sure everyone can understand that. No one should worry about crying or even screaming!

I don't want my eyebrows to fall out either--and mine are kind of thin and wimpy eyebrows to begin with, so it shouldn't matter so much, but hey... It's normal to be upset at all the physical changes! I guess we should be focused on getting rid of the cancer... but all these other things matter, too.

I had Kaiser in So.Cal. The infusion clinic had chairs in little alcoves along the window-side of a corridor that ran around several sides of the hospital. There were nurses moving around, and some patients heading toward the restrooms, but it was fairly private and quiet and relaxing. My sister came with me and there was a second chair in the alcove that she sat in. I'm sure you will feel comfortable (as possible, anyway!). I think they try to make things as private and comfortable as possible.

----

I nearly feel OK now (still a bit of D, and low Potassium, though). Too bad I only have one day before round 2 starts!!! I guess they time it so that the body kind of is on a recovery from the chemo before... but *sigh* I wish I could have a few more days to enjoy this! I am so NOT looking forward to what comes with round 2... or the ones after that! But... focus on the cancer-killing! I just have to keep telling myself that.

Do they test to see if the tumor is shrinking? How? Ultrasound? And when? I might be happier if I knew the chemo was having an effect!