Testing, Testing

Yesterday and today were all about testing and getting most of the preliminaries wrapped up before the chemo.  I had to start off with getting an IV, which is a bigger-than-it-should-be deal (discussed earlier in blog).  Again, my blood pressure dropped, teeth started chattering, and they had to throw warm blankets on me, but it seems to be getting better each time.  There was no hyperventilating, though, and I was able to breathe through it and get back to normal so I could stand up and walk away.  

Next was Nurse Education while simultaneously I had to drink a big bottle of Contrast Fluid for the CT scan later.  The bottle was labeled "Berry Smoothie" but it was so far from that it was almost laughable.  The nurse sat down with Chris and me for an hour and half and just talked us through each drug that is part of the chemotherapy mix that has been prescribed, and what to expect with each drug.  It sounds like each of us is different, of course, and so there is no way to absolutely say what will happen, but he talked in generalizations along with best case, worst case.  It's nice that they don't want us to have surprises along the way.  I cannot remember exactly which drug does what - thank goodness I have a ream of papers that capture everything he said and more.  However, he talked about the nausea, and how every effort is made to "manage" it.  If my prescription nausea med doesn't work, I am supposed to let them know and there are others to try. He said I am not supposed to accept being debilitated by nausea, so that is good to know.

He talked about fatigue, and that is one thing that there is not much to help with, other than try to stay active but take breaks as your body dictates.  He talked about skin changes and how my taste will definitely change.  Food might taste overly salty or metallic.  I have readjusted my thinking about food for the time I am doing chemo.  The reality seems to be that I just need to get through it, and food will present many challenges, from various forms of stomach upset to sores in my mouth.  So, I will plan to do my best, but the nurse said there is no way to expect to eat salads and green smoothies through this process.  I now plan to eat foods that I like or love and what will comfort me, and I guess more importantly...foods that I can tolerate.  They equate it to morning sickness to some degree, and I remember eating mashed potatoes almost daily during the early days of Caroline.  

Of course he talked about hair loss.  That can begin as early as the 10th day after the first round of chemo.  He also talked about something I hadn't heard about at all, which was nail damage.  Apparently one of the drugs darkens the nail bed, then ridges become present in the nails, and then the nail can begin to separate from the nail bed.  He said it is very painful, and they try to prevent it by having the patient immerse the tips of the fingers in ice while that particular chemo is being run.  The ice is supposed to prevent circulation to that area of the finger and help with the nail problem.  He said some people do the ice and get damage anyway, and some people don't do the ice and don't have a problem.  I will do the ice and hope and pray for the best.  

Finally he talked about the port that will be placed on my upper left chest, near the collar bone.  He demonstrated exactly how it works, and talked about what to expect in the Infusion Room.  I can bring one friend, we can eat, drink (refrigerator provided), watch movies (with a headset), read, chat, etc.  There are a couple of pretty common things that can go wrong the first day...weird reactions, allergies...and so once again I am so thankful that Chris has made plans to be there with me, yet again.  Even Jonathan asked today if Daddy would lose his job since he is helping me so much.  I assured him that everything is ok with Daddy's job.  I used to work there, too, and they have been so very accommodating and it has been appreciated beyond measure.  After all of the talking he took us to the Infusion Room, and that is when I lost it.  I tried to be brave and hold it together.  There were at least 10-12 people in there....big leather La-Z-Boy looking lounge chairs.....2 full walls of windows with amazing views......cheery colors...smiling nurses....completely average/normal looking patients.  But what I saw most were all of those hanging bottles, everywhere.  And I knew that I would be sitting in there soon, and I would know those nurses' names, heck I might even know the names of some of those people.  The guide nurse kept talking, and I was nodding, and trying to smile through quivering lips, then clenched teeth, then I couldn't hold it in any longer.  Poor Chris.  At least he knew the best thing to do was say thank you and start ushering me back down the hall.  Of course the nurse had seen it all before, and he said that he wants patients to see the Infusion Room before their first treatment for that very reason...so it's not so shocking and overwhelming.  Mission accomplished.  I was definitely shocked and overwhelmed, so hopefully I can hold it together better next time.  At least there was no ugly crying, so that's a bonus.

Chris took the photos off of our phones before the trip, so I thought I would add a couple of pics.  This was actually before my MRI, I think, so it has been a couple of weeks.  I took it to show the kids Mommy's funny shower cap. 

This was the same day as above, and again, I took it to show the kids Mommy's funny slippers. 

I just love this.  The night before the lumpectomy, several of the girls from my small group came over to spend a little time with me.  They brought this wine to commemorate how we are going to CRUSH this cancer.  They also brought other yummy food, but most importantly they each took turns praying over me, very specific and special prayers that not only humbled me, but lifted me up.  Very special ladies. 

Another group of friends helped feed our family the weekend of the lumpectomy, and they sent along these beautiful roses.  I loved having them here in our room where I could see them all weekend.  So thoughtful!

Beautiful flowers from my wonderful sister in law!!  So excited to see her next week!

Gorgeous bouquet from The Ayco Co, where Chris still works and where I worked before.  I hate the reason for these flowers, but I remain so thankful for people taking the time to do things for us, big or small. 

I certainly am not picturing or mentioning every little thing that has been said or done or sent since this whole thing started!  Chris just happened to download these pics tonight, and there are several very meaningful things that have happened that I didn't think to take a picture of.  For example, even today, I received such a heartfelt card in the mailbox from a neighbor I have yet to meet, but her children attend the school where ours are about to start, and we have a mutual friend, and she just wanted to reach out and make herself available, along with promises of prayers.  Wow.  That is going out of your way to be kind.  I will remember that, and hope to be able to reach out to someone like that at some point.  OK...since I am mentioning things that have made me smile, let me also say that the very first cancer-related pick-me-up I received came from my friend Kati, herself a very, very recent breast cancer "thriver."  Her children made signs that remain hanging around my house, and also inspired my children to make nice signs for me, like "Stay Strong" "Best Mom" "Get Well Soon!" She also brought a medley of fun things, my favorite of which has been this handy heart shaped pillow that I have used every single night since I received it I think.  Finally, my sweet brother, who told me in the car when we were driving back to the beach after getting the original diagnosis that he planned to re-start his prayer journal, sent a beautiful journal for me to use.  It is already in my special place, and I am looking forward to having a dedicated place to journal private thoughts and prayers.  I love being able to look back on things like this and see answers that have come.

Finally I had the CT scan.  This wasn't like an MRI where the machine is loud and making a lot of sounds.  This one has a moving table that slide you through the imaging machine.  This was no big deal until they added the contrast to my IV.  The nurse said it would "feel a little warm."  Well, it felt like fire racing through my veins.  What a strange sensation.  I cannot really describe it, it happened so fast, but for the first time ever I really had a couple of seconds of realizing how the blood travels through the body because I could feel it move along, like one of those lights you try to trap in those arcade games.  Heat rushed through my scalp, face, then shoulders arms, chest, pelvis, legs, in that order, I think, but in 1.2 sec.  Then it lingered for a few minutes and I wouldn't call it pain, just uncomfortable, unpleasant, but still sort of neat. 

Here is the CT machine.  There I am in the hospital gown (with jeans) signing the umpteenth consent form. 

This is the Bone Scan machine from yesterday.  Amazing technology.  Again, no pain, no shots for this one.  The machine did have to squeeze in really close, but all I had to do was stay very still. 

Chris was photo happy.  Here I am, smiling because IV is out.  And I am covered with warm blankets.  What's not to love?

Unfortunately the wig lady was not able to meet with me yesterday.  I was a little disappointed since I had allowed time for that, but I guess I underestimated how in demand she is.  We were able to make an appointment for today, and so my desire to get that "taken care of" before our trip has been met.  First, though, I had planned to handle today's appointments by myself.  All I had was the wig lady and the EKG up in Sandy Springs.  Piedmont has a heart specialty place up there near Northside Hospital.  However, I slept wrong last night.  I remember trying to turn on my right side, but because of the lumpectomy I cannot really get all the way on that side, so I was sort of crooked with my left arm twisted back, I think.  Anyway, I woke up with a very stiff neck that I kept hoping would loosen up, but it didn't.  I could feel pain all the way into my left shoulder blade, but I didn't take anything, thinking it would "warm up."  Finally, I was getting dressed and tried to put on the sports bra that seems to work best with the remaining tenderness, when all of a sudden my shoulder seized up completely.  This type of thing has been a recurring problem since my mid 20s ( I have a few good stories on these for another time).  To make a long story short, the kids are able to get the lid off the hydrocodone and pour juice in my mouth, then get Chris on the phone.  At that point I couldn't move my upper body at all, so once again he came to the rescue.  I feel TERRIBLE because I know he had so much to do at work, especially with us leaving tomorrow.  But he was scared and the kids were scared, so he raced home.  I wasn't scared of this just because I am very familiar with this happening so many times over the years.  

I was thankful for my friend Julie watching the kiddos while I had the heart test.  Chris drove and slowly the pain eased up.  I didn't realize I needed yet another IV, so that was once again unpleasant, but they laid me down and I got through it.  They even had a hard time finding a different vein than the one from yesterday, and I had to get stuck more than once, so maybe I am making progress.  The technician took what felt like a ton of pictures with a machine that looked like a sonogram machine.  I watched the screen and saw all the chambers and valves in my heart from a bunch of different angles, but beyond that I couldn't tell much about it.  When they added the contrast that was sort of neat to see the colors light up inside the heart.  They won't tell me anything about any results, though.  I kept asking, but it has to come from the doctor.  

   

The hair place at Piedmont is called Hair With Care, and the lady running it seems to be top notch.  She met with us for two hours today, and educated us on wigs and the hair loss process.   Different people do different things....some cut their hair off really short before chemo so that there isn't much to fall out....others let it fall out by itself.....she told about one young 30s lady who brought 15 friends into her office/mini salon with champagne and basically shaved her head before the chemo.  She lets the patient decide.  I thought I would just let it fall out, but this is why we need educating on these things.  I didn't consider the "mess factor."  Apparently at some point after the first chemo there will be a tingling/burning/itching of the scalp and that is when the hair follicles begin to "release."  After that it comes out pretty quickly, and can get everywhere (furniture, carpet, drains, etc.)  Based on that, I have a tentative plan to see her when I estimate this happening, and she will cut my hair down with scissors in preparation.  I could barely get through this discussion, and I mentioned to her that she must see a lot of crying.  She just said you have no idea.  I bet I have some idea.  This lady, Jennifer, is a tough chick, I think.  She lost her mother to cancer 6 years ago.  I think we are going to get along really well.  That's good since I am pretty sure she is going to be part of a really strong memory and see me at a pretty low place really soon.  

But there were better topics, like the fact there are some pretty incredible wigs out there.  Like $4000 incredible.  Wow - that was shocking to hear.  But then, everything about this has been shocking, why should the wig aspect be any different?  Luckily, those are the European, human hair wigs (I think), and I don't plan on getting one that fancy.  I tried on a bunch, from cheap synthetic, to nice synthetic, to Asian hair, European, blends, you name it.  A cool part about the human hair is that you can style it in different ways like your own hair (curling iron, flat iron, whatever), but with any form of synthetic, you keep that basic style.  I had plans this morning of washing my hair, and sort of dressing up for this appointment, since I knew I would be trying on wigs.  But with my shoulder/neck pain, I had even skipped washing my hair, then with the bra fiasco I had Caroline grab a shirt from the closet and help me get it on (of course she picked the pale pink one, a color that is far from flattering on me), then I had already cried before getting to the wig lady, so I was not exactly looking my best, as planned.  Again I was mentally shaking my head, since yet again, MY plan was ripped apart and replaced by a plan that worked, just not the way I thought it should.  Reminded again how little I control.  So, I was feeling not too hot when looking at myself with these wigs, but we did snap a few photos.  

I really like this color, and it is similar to a winter color I had recently, but it didn't look too good with this pink shirt and we were a little concerned about how it might look with my "chemo skin" (apparently paler than usual).  I think this is the style of hair I am going to get, though.  It is very close to my current hair, with a little more layering around the face.

I guess I was getting testy here.  I think this is the color that I am going with.  It is closer to my natural brown, though a little lighter, with some caramely highlights.  There wasn't a perfect color, but both of these were good and close, and I am not tied to my color that much anyway.  This style had longer layers, but I think it was just too much hair, so I like the style of the one above better.  If you could see the forward view you would probably agree.  The darker one isn't quite as puffy as it looks in the pic above at that angle.  I haven't made a final decision, but I narrowed it down to these two styles and colors (I think!). 

We were discussing hair growing back, and so I put on a few short wigs just to see.  I like this one.  She was trying to get me thinking about where my comfort level is with short hair, which will dictate how long I wear the wig (unless I have a change of heart, which some people do).  I realized I want my "new" hair to at least come below my ears to be comfortable. 

This is the same wig as above, side view.  I think it it pretty cute.  I could handle this if my hair would do this. 

I didn't mean to write so much.  I guess there was a lot to say.  I need to get to sleep because tomorrow is a big day.  Sort of feels like every day is a big day these days.  But tomorrow is big in a very good way.  We are excited about this trip, and I haven't really thought about it, but maybe I'll write on here about it, too.  First stop, Grand Teton Village in Jackson Hole!