Vague Notions

This week I realized I've had several vague notions,

1. A notion is an idea, often vague and sometimes fanciful. A notion is lighter than a theory and embraces a whimsy that a simple idea never could. You might have the notion that you can slow global warming by taking public transportation and reusing plastic bags.

So my notions have included that because I felt so good before the first infusion, I would feel just as strong afterwords.  On Thursday, it was great to visit a little with Cathy and Melinda (who came bearing yummy food gifts).  But even though I was tired, I was still just ready to ride things through. 

Come Friday, Ben went to an appointment, and then we arranged to meet for breakfast/brunch.  I went by the office for just a bit beforehand, but was having a hard time concentrating.

Which brings me to the idea of focus...one of the strangest things has been my ability (or should I say, inability) to focus and concentrate without feeling overwhelmed.  I found myself being able to listen but not talk, watch but not discuss, or make minimal conversation but nothing meaningful.  That's basically continued through today. 

The stomach/nausea thing has been there...mostly I've been able to keep the bad stuff at bay.  Lots
of anti-nausea medicines mess with you...I'll prepare better for the next time.  The ativan to help sleep at night is very useful....the one night I didn't take it, I was up in the middle of the night for a couple of hours.

Thank goodness Bill has been so great to me.  We actually went out yesterday and picked out a much needed new dishwasher to replace our current leaking one.  And, today, we went to Palm Sunday Service, although that was about all I could handle.  I do feel a little stronger this afternoon.  Tomorrow, I plan to go into work in the morning, through our Monday Lenten luncheon.  And then, probably a nap!  I've found a good nap around 2:00 or so is just about right.  

There's probably 20 or more possible side effects...we were told that I could experience just a few or all 20.  And, there's no guarantee of when a side effect will hit; i.e., I could be fine for several days and then have a day of nausea or extra-tiredness.

So, it's a day at a time.  I have been humbled!  And, I feel extra compassion towards those people who have to deal with chronic physical and mental ailments...it's very easy to forget the hidden anxieties and hurts that are constantly or repetitively  present.  

Thanks so much to Ben for helping me grocery shop and deal with the groceries, for MJ for some yummy brownies, for cards in the mail from sweet friends, and for y'alls prayers and support!

Love y'all!  

Stupid Cancer

      Seen at the end of my first treatment - notice the green barf bags and bandaids close by!


The actual infusion was easy-peasy...the port worked so great, I had not pain or discomfort with that.

There were a couple of volunteers who reminded me of Dad and Uncle Bob, asking what I needed (hot blanket, yes, water, yes, an extra pillow, yes, cran-grape, yes).  Speaking of Uncle Bob, while I was going through my infusion yesterday, he was having shoulder surgery.  Shout out to Bob!!  Hard to believe his was going to be out-patient surgery with a long recovery at home.  Means lots of work for Aunt Karan AND Bob!

Two of the nurses in my area graduated from JSU where Ben is, and from the nursing school where MJ WILL be getting into for next year.

Ben came in to visit before I was completely done (remember I was way delayed to get into the infusion room).  So he was another bright face for me!  He was got a Starbucks coffee (so great to have a Starbucks shop in the main area of Kirklin), and came in another time to check on me, then was ready to get the car to pick me up.

On the way home, I wanted some won ton soup, and Ben loves Chinese, so we got to-go from Mandarin House (that's a plug for them) and came home.  I was ready to eat.  Within an hour or so, and while Ben and I were watching a movie (The Interview), I wanted to sleep and slept for several hours.  When I awoke, I felt all the feelings that you might imagine.  Not sure if I can describe them, just say that slo-mo, other-worldly, overwhelmed were part of it.  Took all the anti-nausea meds I could take.  Around 8 I had a the blueberry muffin that Bill brought me and a frozen chocolate banana. It was perfect.

I have Ativan to take for sleep during these few days, so I went ahead and took one just in case and slept pretty well with my cPap and in the easy chair (still helpful with the drainage site).

This morning, I'm mostly alert.  I talked to Rosalie from Knoxville - even though we haven't talked in a while, she's one of those friends that you can just pick up with as though no time had passed.  I was able to return several texts (THANKS!) and FB messages (THANKS!).

I had some oatmeal this morning and have been drinking some diet Sprite...gotta keep the fluids going.  Cathy is bringing me some chicken soup lunch, and Melinda is bringing dinner tonight.

Lots going on with mom, and dad and Marianna.  Thinking of you guys a lot.  And Debbie (my sister) is in process of getting their new home ready to move into.  LOTS HAPPENING WITH EVERYBODY!!

SOOOO grateful for you all.  You make my days better.  Take special care of yourself,

Here we go....

Began writing this at 9:35 am.

7:30 am:   Bill and I were up bright and early this morning, pumped and primed for this part of the adventure.  We made it to Kirklin right on time and got checked in.  After about 15 minutes I asked the receptionist if she would remind me of the educator's name.  She told me Miss Betty, but that Miss Betty was on vacation.  Wait, what?  So I said, I was told I'd be meeting with Miss Betty, and Miss Receptionist said "they" must not have known she was on vacation when they scheduled me.  I said "they" just made the appointment last week and that Miss Betty had called me about watching the educational video.  Miss Receptionist looked blankly for just a sec (I'm giving her some credit here) before saying that a nurse would be meeting with me, and that nurses had done the education part before Miss Betty was hired so they were used to it.  So, at least partially satisfied, I sat down again.

8:15 am. Sitting in waiting room.  At this point we had watched lots of people go in while waiting for my name to be called.  The wait was humbling and sometimes entertaining.  The ladies to the left of me (Darlene lives on the Tombigbee and Darla lives on the Warrior River), began discussing their husbands' treatments and subsequent side effects.  Thankfully they moved on to other topics.  Did you know that you cook alligator tail by using seasoning salt on both sides and flipping it on a hot greased skillet?  Well I'll be durned, as Darla replied.

While I was distracted with tales from the wild side, Bill went up to Miss Receptionist to politely inquire as to our appointment time of 7:30, now long gone.  She said she would check.

Bill and I had THE talk:  we will be working and meeting regularly in this clinic for 4 months, so we don't want to be those obnoxious people; on the other hand, our plan had been that Bill would make to work well before the 10:00 rehearsal time today.  BUT you already know how well our plans have been going!

Right at 8:45 just as Bill stood up to check again with Miss Receptionist, my name was called! Woohoo! Here we go.

At this point I had already dissolved into tears twice. When Malinda had texted me this morning to wish me well, I had told her that I was nervous but not anxious. That changed!  My anxiety level increased with every Pro Bass story I heard from Darla and Darlene.

So as soon as sweet Nurse Betty asked how I was in the most appropriate compassionate nurse voice. I dissolved once again.  She said all the right things about apologizing and how I should have been brought back sooner, etc.  I love me some Nurse Betty.

She went through all of the info that we needed and wanted...sometime later I may share some of that but right now I'm hooked up and can't reach my folder.

By 9:20, Bill hurried out the door, and hopefully made it to rehearsal in time to deal with all the issues that come up before the baton is waved.  Nurse Vickie called me back and has talked me through this whole thing.  I feel very cared for and am in a much happier place.

Vickie was able to access the port easily (GRATEFUL!) and I've had the first two medicines, one to raise my white blood cell count and the other an anti-nausea med.  After this I'll have the two chemo drugs (I may update you on those two later, also when I pull the folder out).

Time to chill, listen to some music and focus on positive energy.  I am feeling overwhelmed with expressions of love and support.  I could give shout-outs all day long.  Here's a couple:  Melinda Burnett has set up a Take Them A Meal site so friends can sign up to bring meals (and is bringing the first meal tomorrow!); Rachel Estes texted me from Panama while serving on a medical mission team; Malinda Weaver and the mission peeps at VHUMC are covering it! and so nice to make contact with some friends that I haven't talked to in a while.

By the way, they allow friends to come into the infusion room to check in but not to sit and visit.

Can't thank y'all enough.  I know I will feel like crap but now just grateful. It's 10:35 and we are running the race.

Manic Monday

Do you know there are about 10 songs written with Monday in the title?  Last week was Rainy Days and Mondays.  Today is Manic Monday...little known fact, but Prince wrote the song for the Bangles to record.

Yesterday, Bill and I had the absolute treat of being in Bowling Green, KY to watch Music City Mystique perform at the Mid-South Regionals of WGI.  We had the added benefit of being able to spend the day with Bill's sister, Marj and her husband Tom (they live in Louisville and came down for the day).

MCM won first at the preliminary on Saturday and first on Sunday for their group level, which is Independent Percussion World.  SO EXCITING!  This puts them in very good status for winning at the World Championships in Dayton in April.

Here's a video of the show from Sunday:  Music City Mystique 2015

The only downside to Sunday was that I was feeling feverish and achy.  I got it under control for the most part by spacing out Tylenol and Ibuprofen.  BUT, I realized I had some swelling around the incision where the lymph nodes were taken out.  So, Bill let me rest on the drive home.  Swelling was worse Sunday night and more so on Monday morning.  I made an appointment with the surgeon this afternoon.  He is based out of Brookwood, but apparently does surgeries and clinics at St. Vincent's as well, so today was St. Vincent's day.  The swelling looked even worse after I called for the appointment, so Bill and I decided to go early to check with the nurse that I was going to survive this  (we started thinking about the last surgery I had; the site got infected and I was put back in the hospital for 3 days).  By the time the doctor got to me, he did an ultrasound and said, yes, there's lots and lots and lots of fluid in there.  He inserted a drain that he described alike a straw. Not to be too gross, because it sounds gross and it is gross, he drained off quite a bit.  The drain will stay in til he removes it next week.  I also got an antibiotic that I have already started.  He said he was surprised I didn't feel worse (my mama didn't raise a whiner!).

Another interesting fact...because some drainage had gotten on the table, by the time we walked out of the office, two guys had come (from maintenance? from the "OMG it's an infection" office?) and were taking the table OUT.  Don't know if they were going to disinfect it or throw it away!

Soooooo while we were waiting to pick up the antibiotic (here's the reminder to say the VESTAVIA Rite-Aid, VESTAVIA please, because if you say just say Vestavia Rite-Aid on 31, they will definitely send it to Hoover), Bill got the call from his doc's office with results from last week's MRI.  His gallbladder needs to be removed!  Apparently, the MRI showed some gallstones, so it's pretty clear having it removed is the best option.  We have a couple of weeks to get that scheduled, and it will be done on an outpatient basis, laparoscopically.  It's a very common procedure, but the timing adds more stress to Bill's already stressful life!

However, we have Ben home this week, as it's JSU's spring break week.  He's getting some observation hours done at VHHS, with Mr. Horton.  He enjoyed his day today, and will be there several more times this week.

Still planning on starting treatment Wednesday morning.  I still haven't watched the video that the educator sent me, but I will get that done in the next hour.

Here's hoping that next Monday isn't worthy of another Monday song!
Denise

PS:  (Can you do a PS on a blog?)  I had a great conversation with one of my retired Bham City School peeps...I had to miss a lunch gathering last week, so she was bringing me up to date.  She said one of the things they did at their gathering was to talk to each other about what their preferences might be if they got sick or incapacitated.  Preferences such as:  how would you want to communicate (text/phone/email, etc.), what's your husband's phone contact and can we call him?, would you want to be visited in the hospital or would you want us to wait til you got home, etc.  I thought it was so great to have that conversation with your small group of friends so you would have a hint of how to move forward and act.  Also, here's a reminder to GET YOUR WILL and HEALTH CARE DIRECTIVE updated and signed!  We did ours last week, and it's a relief to know that it's in place.  It's not morbidity, it's common sense.

By the way, PLEASE text or email! It would be fine to check in with me, and even to say that you would like talk if I have the energy or time!

I Love My Doctor

I could not be more grateful for Dr. Nabell.  She called me a few minutes ago (yes, on a Friday afternoon) to let me know that the liver biopsy was NOT CANCER!  Praise and thankfulness!

I also got a call this afternoon from the chemo educator for Kirklin, giving me a code so I can watch an informational video presentation online about treatments.  She will also be meeting with us at 7:30 next Wednesday morning to talk more and answer questions before the 8:30 treatment.

The only things I know right now about the treatment is the type of drugs (Cathy reminded me that the drug I couldn't think of is cytoxin) and that these first four rounds will be 2.5 hours long.  If I learn anything more from the video that's  interesting, I'll post it.

Thanks again for your positive energy and friendship!

Denise

Ready to Update!

Yesterday was liver biopsy day...I wasn't ready to update though, but this morning is better!

6:00 a.m., found the right place to go in the North Pavilion, UAB.  It's easy to forget about the North Pavilion when you are driving around UAB, because it's sooooo confusing how many buildings there are!  But the North Pavilion is like the AAA of UAB.  Beautiful entrance, better signage, and easier to get around.

After waiting a bit, I got to a room and had an IV put in.  Then after waiting some more (with Bill in a private room), they took me to the procedure room.  There were three other people in the room with me, the doctor, the nurse and then a tech guy.  They were really good about telling me what was going to happen and what was happening.  They marked the area where the biopsy needle would go in.  The IV was enough of a buzz to allow me to close my eyes and relax.  They put lidocaine (or whatever it's called that they numb up your mouth with when you get dental work done) in the area where the needle went in.  And a sonogram was used to locate the place where they wanted to go with the needle.

If you've ever had your ears pierced, then you know that sound that happens with the needle gun going through your ear lobe.  That's kinda what this needle sounded like.  I think they took about 3-4 samples, and then I was done.

After waiting in the initial room for a while, I got moved back into a private room.  I had been told before and at this time not to move for 4 hours.  For whatever reason (!!!!), Bill didn't get pulled back into my room for about an hour.  In fact, the doctor had come to check on me, and I told him that I had asked the nurses 3 times for Bill, and the doctor was the one who actually went to get him from the waiting room.  That was service!  Grateful for him and the concern he showed me!

So I dozed and watched some TV and didn't move until about 1:45.  At that time I was able to get dressed and Bill picked me up in the car.  The rest of the afternoon I just slept at home.  Malinda and Aleta let me know that Aleta was bringing dinner from Wednesday night church dinner, and she got here just in time!  We were ready for this lovely meal!  Aleta also brought me a beautiful prayer shawl (how did she remember my favorite colors!) from the ministry team.

Bill had his follow up appointment with the gastro doctor, which he was able to get to after bringing me home.  The doctor gave him some anti-nausea medication, as well as set him up for an MRI on Friday morning (tomorrow).

So, yesterday I was totally fuzzy and cranky...today is a little better.  I'm very very very grateful that I have co-workers and work support to be able to get some things done at home.  AND, that they will cover for me and with me when I need.  I'm a little scared (okay, a lot), that I will be asking MORE of this as time goes forward.  Day at a time, though.

Thanks for the love!  Sitting with my lap quilt from Georgia, and my prayer shawl from Vestavia.  Covered in prayer.

Rainy days and Mondays

It never rains but it pours.

1/7 of our lives are Mondays.

Everything is funny as long as it's happening to someone else. Or you have a day's perspective.

God writes a lot of comedy.

Soooooooo.....Monday afternoon, I got home after work to find Bill home at 4:30, which is early for him.  He had been laying down because he wasn't feeling good.  I made dinner, and about 5:15, he came down to sit, but said he wasn't hungry.  After watching him sit there for about 30 minutes looking and sounding pitiful, I called Summit Express to see if they were still open (a doc-in-the-box experience).  I was kinda worried that he had the flu or the stomach bug that's been going around, and I really didn't want to 'catch' it, and figured that if we could stop it early, it would be best.

Bill decided to drive himself, and got there right before closing.  By 6:30, he called me and said that the doctor wanted him to go by ambulance to the hospital, considering that he was talking about tightness in the chest with the nausea and the doc didn't want to take any chances with heart attack possibilities.

I met Bill at the emergency room.  After EKG, chest x-ray, and blood enzyme reviews, the doc didn't think that his nausea and chest constriction was heart related, but to rule that out, they needed to keep him overnight to continue checking blood enzymes and to have a stress test Tuesday morning.  We got him settled in a room, and around 11:30 he was able to enjoy a turkey sandwich (with no food or liquids after midnight due to this morning's tests).  If you know Bill, you know this part is important because, since he hadn't eaten since noon or so, he was pretty loopy from needing to eat!!

I came home after the sandwich was delivered and got a bit of sleep before getting back there around 7:15 this morning.  In the meantime, Cathy Corley said she would go to the Kirklin appointment with me at 9:00 so I would have another pair of ears/eyes.  Bill and I had determined that he would probably be in the stress test at that time, so I went forward with the appointment rather than reschedule.

Sure enough, about 8:15 they came to get Bill, and I got back in the car to meet Cathy at Kirklin.  I got back to Brookwood at about 10:45, where he was resting from his testing.  He said he had gotten the report that the test came back with no indication that his heart was at risk.  Good news!  This same kind of event happened about 7 years ago (tightness in chest/nausea), and he had to spend the night then again as well.  He had been diagnosed with reflux and was placed on prescription which has worked very well for many years.  This morning, we called that doctor again for a review of medications and to see if there may be additional things to do gastro-wise.  He has an appointment with Dr. Denton on Wednesday at 3:00.  At about 2:30 he was released from Brookwood, and we came home where he has been sleeping ever since!

I'm telling everyone that Bill was just feeling neglected and that he wanted some attention.  Ha!!

At discharge time, the nurse said that if he felt the same way again, he needed to come back to the emergency room again because you never know...

His work colleagues were very supportive re: his managerial duties, and helped ease his mind about he was supposed to finish yesterday!  And my peeps, as usual, would have done anything they needed to do.  If I didn't contact you, it's only because things were basically under control and no news was no news until we knew something!

A big thank you to Cathy for being at Dr. Nabell's office with me.  Some highlights of that meeting:

1.  Nurse Nancy checked my port and said it looked perfect and showed me how they would be using it.

2.  Received the pathology report from the sentinel node with the cancer that was taken 1.5 weeks ago.  Good news in that it is NOT lymphoma.  The other 2 nodes had no cancer in them.  Based on the report, Dr. Nabell still wants an MRI of the chest which will give additional insights as to if there is a blip(s) of cancer in any of the breast tissue.

3.  I'm paraphrasing here, but she basically said that she did not believe that the shadow on the liver would be anything but benign, but again, it's a necessary precaution.

4.  Based on what she knows as of today, she still thinks the original treatment plan is appropriate, and is ready to schedule that.  Obviously, if the liver information comes back differently, we would talk again.  Since that procedure is tomorrow (Wednesday), she anticipates getting that info back Monday.

5.  I will get a phone call today or tomorrow to schedule my first treatment, which will be probably Wednesday of next week (March 25).  The regimen will be treatments once every two weeks for 4 treatments (8 weeks).  Those treatments will consist of adriamycin and another one that I didn't write down!  (But I'll make sure to ask the person who calls me for my appointment).  After the 8 weeks, I will have weekly treatments of taxol for 12 weeks.

6.  Dr. Nabell gave me some prescriptions for anti-nausea (anti-nausea protocol), and for a cranial prosthesis.  Yes, that means a wig!  The medication prescriptions I will start immediately following treatment.  The hair issues will happen within/by the end of the initial 2 weeks.

So grateful for all the people who care about and for us.

Saturday South of Nashville

It's been a long time since we've gone on a day road trip by 5:30 a.m. but we did it this morning!  We drove up to Spring Hill, TN to watch Ben's ensemble rehearsal first thing, and then the Music City Mystique performance at 1:00 (with coffee and biscuit in-between!).

The show gets better each weekend...I just saw it two weeks ago and they've changed things even since then!  Unfortunately, the electronics messed up and never got connected, which meant that a lot of the cool sounds were missed.  But the audience still loved the show.  I could watch it all day long.

After the kids loaded the equipment onto the truck, we were able to take Ben for a late lunch.  Ben went back for rehearsal til about 10 tonight.  They'll finish rehearsing Sunday morning for about 5 hours.  After lunch, we were back on the road to get back home around 5:30.  A good day!

Plans are still set for this coming week.  Tuesday morning, we meet with Dr. Nabell.  As of Friday, we hadn't gotten the results of the frozen slice of the tumor, so maybe Tuesday we'll know more about that.  

Kirklin Clinic called me to let me know that they didn't have an earlier time for the next biopsy, so Wednesday morning it is.  They've been good about calling to verify that I have the info, and I also got a letter of "information for the day of your procedure."

Fortunately, Bill doesn't have playing duties on Wednesday, and he can get someone to cover his management duties.  We'll get to the North Pavilion at UAB hospital by 6:00 a.m.  The note says to allow 6-8 hours total from time of arrival to time of discharge.  That's a long day!

That's all I know for now.  I'll leave you with two readings that I found this week - one was sent to me by a friend in my Bible study group, and the other was posted on FB.

When Pain Invades

How to Stop Fears from Stealing Your Peace

Peace out!

Denise

Back to Work

It was good to get back to a full day at work today!  And so very nice to be happy, busy, and working with people I genuinely care for.  I'm a lucky person!

Dr. Nabell called me this morning to talk about the scans I had done yesterday.  The bone scan was fine.  It showed what I already knew about my hip (leg bone in hip socket).  Orthopedic doc told me a couple of years ago that I had arthritis in the hip and would probably be a candidate for hip replacement (but I'm too young now!).  The chest exam was fine.

The CT scan showed a couple of shadows in the liver, with the largest being on the right side.  Dr. Nabell said that the radiology department is VERY aggressive when they believe something is cancerous.  They were NOT aggressive in their comments to Dr. Nabell as they can't tell if it's meaningful or not.  SO, this means that I go in for a liver biopsy.  They will use cat scan guidance to see where the needle goes (outpatient but with IV sedation).

Now, STOP RIGHT NOW and promise me that you will NOT go on the Internet to search for liver cancer or ANYTHING ELSE!!  (You know who you are!)  I am not looking on the Internet for things I don't know I have or for a diagnosis that has not been made.  We have no use for information that is not relevant so don't go looking for it!  Promise me!

Since I've gotten that off my chest, I can let you know that the appointment has been made for next Wednesday morning, March 18 at 6:00 a.m. at UAB North Tower.  I DID fuss a little bit about having to wait another week, since I've already gone 2.5 weeks without a plan!!  I need a plan!!  The scheduling nurse said she would ask if there could be an earlier time, or maybe someone will cancel to let me slide in early.  So, we may have to wait til Wednesday, or maybe it can be done earlier.

Okay, better news now:

The initial look at the two additional lymph nodes that were taken last Thursday showed no sign of cancer.  Yay!  The frozen node results have not been received yet.

AND, the BRAC Analysis came back negative!  That's the genetic testing results.  That's good news.  Means no additional risk for the close or extended family, just to take normal precautions and regular doctor visits.

I am waiting for the day where I can just write that treatments are going normally and well and I'm on track for the next treatment!

If you have signed up for email notifications of blog posts, I just changed the notification time to be 7-9 PM CST.  The default setting is for first thing in the morning.  So, if I don't post something til after 9 CST, you won't be notified until the next evening.  I'm learning!


Peace out!  Love you guys!

Gratitude

Before you read anything more, I'd love for you to stop and go to this page and read this amazingly beautiful post that I just happened up on Facebook (as if things "just happen!").


The One Thing We All Want to Know

The Step Stool Smile.  Just. Wow.

I was thinking about which part I wanted to quote here, and I have way too many things that I think are fantastic about this whole idea of  wanting to know how we're getting home.

For me, the concept of sometimes I'm the smiler and sometimes I'm the one who wants to look away speaks truth.  Being the smiler or looking away comes pretty naturally.  NOT looking away can be difficult or challenging, depending on the moment, the day or the experience.  Going through this experience has only just begun to make me excruciatingly aware that I am not so comfortable being dependent or accepting when being offered support.

I am grateful and appreciative and will work very hard at not looking away!

That being said, right now for me, being home means that my friends and family continue with their snarky humor, that we can gossip about what the neighbors are saying or doing, that you and I figure out how to show our passion about social justice and missions, that when we scrapbook we ooh and aah over each others families and photos, that we go out for breakfast, lunch, coffee, or a drink (or even bowling with pizza and beer), that I can tell you about all the movies I (and maybe we) have seen, that maybe you still go to scary movies with me where we can laugh and scare each other for days afterwards, that we plan on going to see Anne Lamott when she comes to Birmingham, that we travel when we are able, that we share what we think about the latest Scandal TV show, that we go to plays and musicals, that we are rebels in any way that we can!

Things may change, but I don't want our relationships to (except to get better!)!

So, what's happened today?

Fair Warning!  I totally get if the info I put out there gets to be too much information.  You are hereby released from reading in detail about any of the particulars that I post.  This is simply for my ability to chronicle what's happening for the folks who like that kind of thing (which also includes me!).

This morning, I made my 2 planned phone calls from home:  one to Brookwood diagnostic center to tell them I needed a disk of the mammogram and ultrasound to take to Kirklin Clinic by this afternoon, and the other to check in with Kirklin about my scans for this afternoon.

Good thing I called...somehow I missed a call or I was supposed to call last week, but they wanted me to be at UAB by 8:00 (not mid afternoon like I thought) for the dye injections for the nuclear scans.  Since it was already 8:30 by the time I called, I jumped in and out of the shower, and we flew down to UAB.  Thank goodness Bill was flexible today!  (I have the feeling I'll be saying that a lot!).

Bill dropped me off at Jefferson Tower, UAB Hospital.  That's where I got the injection.  After that, it was going to be a 3 hour wait for the dye to get through my system, so I checked in with Kirklin again, and we walked over to Kirklin for the CT scan.  That was an interesting experience.  While getting checked in, I had a great conversation with Crystal, the intake nurse.  I was told that the scan included drinking 2 glasses of contrast liquid (tasted like water).  Then Crystal said that after an initial scan, I'd have another scan after receiving an injection in an IV.

(Note to self:  if you weren't sure that you liked needles or not, you DON'T!!)

She said that my reaction to the injection would be a metallic taste in the back of my mouth, then a warm flush like a hot flash (yep, I know what those are like), and then I would feel like I was urinating but I really wasn't.  What?  Say that again?  Yep, that's how women feel.  Men have reported their testicles tingly.  Hmm.  Wouldn't have guessed that.

All of that reaction in a minute or so, then done.

And that's pretty much how it went.  All told, relatively quick.   At that point, Bill and I walked to the car and flew back to Brookwood to pick up the requested disk information.  That was at 12:00, and we were back at UAB for my 12:30 arrival.  Bill took the disks to Dr. Nabell's office.  UAB was VERY timely (THANK YOU!) about calling me back so the dye was optimal.  I was taken to the not yet opened brand new nuclear medicine floor for the latest machinery, etc.  Krenisha told me that she had been working on the floor for about 2 weeks, and that everyone was going to be moving to that floor in the next 3 weeks.  That machine was like a donut...I laid down (both scans fully clothed in case you were wondering), and the table that I laid on moved back and forth.  About 20 minutes total.  We walked out of the office at about 1:30.

Krenisha said that the scans were already sent to the radiologist who would be looking at everything this afternoon and would be getting back to Dr. Nabell.  She said it was probably not likely that I would hear anything today, but I will call Tuesday morning to find out when we can meet up for results.  As of right now, there are no results posted on my online Patient Portal.

We were STARVING afterwards (no food only water for me and Bill sat patiently after his regularly scheduled oatmeal breakfast), so we went to Fish Market...a huge advantage to being at Kirklin since it's across the street!  Nirvana!  And, yes, I had a dessert of key lime pie because I was rewarding myself.

I'm drinking as much water as possible to flush all that crap out of my system.  It was a lot longer day than either of us expected, but it's a relief to have this part done.  Based on what Dr. Nabell said last week, I will most likely have an MRI also, to complement the mammography.  Not scheduled yet.

So, with a lost work day, Bill is on his computer and I'm on mine...since we finished eating at 2:30, we won't really need dinner tonight!  Soup probably, as a good comfort food after the comfort of Fish Market!

No news continues to be no news.  Grateful that Dr. Nabell said not to be challenged by the uncertainty of the lymph node last week.  Grateful that my husband is caring and loving and funny and knows me so well.  Grateful that my family is there for me.  Grateful that my friends are also there for me.

Love you!  Denise

March 3 Reflections

This past Thursday, I had scheduled the  port placement and tumor clip placement at Brookwood.  It wasn't until Wednesday afternoon that I got the appointment for the next morning early.  By the time 30 minutes had gone by, I had the call to come in even earlier because they had some cancellations due to the severe icing that we were expecting.

So, Thursday morning, Bill and I were up very early to take our time to get to the hospital.  Family Promise families were at the church, and with school cancelled for the day, We had to make some quick decisions about who, what and how the families would stay at church.  Carla Palmer was fantastic making phone calls.  Lynne Beckham was a lifesaver being able to go in early Thursday, and ultimately stayed for about 24 hours making sure the families had good food and supervision. The volunteers that were able to make it in and help out were great.  Carla and Malinda worked hard to get this off my worrying plate.  So thankful for that.

We got to the hospital just fine, and were taken back pretty quickly.  Things worked out well for Bill to be with me all morning...due to the weather, UAB finally closed and the orchestra rehearsal was cancelled for that morning AND the evening.  Another gratitude!

I was put completely out.  When I woke, Bill was brought back pretty quickly.  So, the port got put in well.  It's a little bit bigger scar than I thought it would be, and more sore!

The unexpected twist was that Dr. Bullock said when he went in to take a biopsy of the sentinel lymph node, he found that the tumor was encapsulated within the lymph node.  He took the entire node out and it's been sent for a frozen dissection and a regular (?) dissection.  Results may come in Monday or Tuesday, hopefully.  From what Bill said, Dr. Bullock was pretty surprised to find it that way.  We don't know what it means.  A little unnerving.

We got home around 2:30 and I just sat in my comfy chair with my feet up.  So nice to have a home where I can be comfortable.

Two scars...about 2 inches, each.  One is on my right front side, and the other is on my left side (node) lower almost under my arm.

Yesterday was Friday.  I realized that I really didn't want to wait the entire weekend to hear from Dr. Nabell.  Monday I have scheduled the two scans in the afternoon.

I got on the very cool MY UAB MEDICINE PATIENT PORTAL.  I was able to send Dr. Nabell a message checking that she had heard from Dr. Bullock and what concerns she might have.  I was so grateful that she called me back before the day was out!

She basically said not to assume anything before information was received, and that the current track is the right track until tests show that it's not the track to be on.  She did ask for me to go to Brookwood to pick up the mammography and ultrasound info on disk so their radiologist could go over it.  She will also add an additional mammography scan.  If there is lymph  involvement, it's more important to have all the scans, so Monday will go as scheduled.  I will bring the Brookwood disk to UAB when I get the scans.

So more waiting while hoping that we can get a move on next week with actual treatment.  Rachel and Caden have come to help around the house a couple of times and it's been awesome to have them around.  They make me happy!  Bill has also been great, but that is no surprise!

Life is a highway, and I'm gonna ride it all night long

Long story short:  found a lump, scheduled a mammography, called back for an ultrasound, told to visit a surgeon for a biopsy.  Met with Dr. Tim Bullock at Brookwood's Surgical Associates.  He did a biopsy in the office by sticking in a hollow tube needle.  Quick and easy.  I had a BRAC analysis done at the same time, which I should have done a long time ago.  The biopsy was going to be coming back in 2-3 days, the BRAC comes back in 3-6 weeks.

When the biopsy came back, Dr. Bullock shared that it was a triple negative breast cancer. He had set up an appointment with Dr. Brian Adler with Brookwood's Oncology & Hematology Center.  Bill and I were able to leave Dr. Bullock's office and go straight to meet with Dr. Adler.  Dr. Adler's office is the same office where I went for oncology before with Dr. Lisa Larson.  Lisa has since retired.

Dr. Adler was wonderful and answered our questions about triple negative and what his best recommendations were.  Rather than go for another opinion with a diagnostic team at UAB, Dr. Adler said he respected Dr. Nabell at UAB.  They set up an appointment for us to meet with Dr. Nabell.

Since we had the snow storm warning day (that ended up being just a cold day), and everything was closed, I wasn't able to see Dr. Nabell until this past Tuesday, March 3.  My notes from that meeting are below!  I sent these notes as an email to my parents, my sister and my kids.  Then, I felt somewhat better about sharing this news..

March 3

Well, some questions answered, other questions still remain, and a couple of decisions made!

* Met with Dr. Lisle Nabell at Kirkland Clinic (of UAB Hospital).  She has an office in the hematology/oncology department there.

* I really liked her immediately.  She is considered a breast, neck and head cancer specialist, and has been at Kirkland for about 20 years. Due to my 'at ease' with her, I decided to ask her to be my oncologist.  I still really like Dr. Adler at Brookwood Hospital, but I felt that Dr. Nabell was able to more confidently and knowledgeably talk about my situation.

*  Which is:  what she would consider as a Stage 2 although again, that's mostly based on the size which I'm not seeing as important as the type of cancer (triple negative).  

*  She had slightly different to a lot different recommendations for treatment.  She said her best recourse is chemo first and surgery last.  Because Kirkland is a cancer center, they have access to various trials.  She will be checking on a specific trial to see if I would be eligible for it (which I may not be, since I've had cancer before).  I am set up with a nuclear bone scan and cat scan for Monday.  She doesn't expect to see that the cancer has spread, based on clear lung and heart sounds, and the fact that I've had no symptoms.  The scans will show that for sure.  They will also do an ultrasound of the area to check for lymph nodes, but, like Dr. Adler, she didn't feel any swollen nodes.  Seems like she said MRI but maybe that's the cat scan.

*  Also, I need to have a port put in (for chemo treatments) and a 'clip' put in near the tumor so they can tell where the tumor is/was in case it shrinks.  There is a slight chance (about 20 percent) that the tumor will completely disappear with the treatments.  The clip also lets them know if the tumor is shrinking, which will indicate that the chemo is working.  Even if the tumor disappears, they will still do surgery.

*  Surgery determinants:  don't have BRAC analysis back yet.  If positive, then mastectomy is indicated.  If negative, then option for lumpectomy, OR mastectomy.  Downside of lumpectomy is that radiation is included after that surgery to make sure the edges are 'clean.'  Also, I'd have to be diligent about checking very regularly with mammograms.  Would continue to be 15-18 percent chance of cancer returning.  So, while I'm having chemo, I have time to meet with a plastic surgeon to talk about options, once the analysis is back (probably will come back next week at some point).  '

*  Dr. Nabell had definite plans for chemo treatments.  I've received the "What to Be Aware Of" info for chemo patients, so that is helpful to read ahead of time.  The treatment will include 2 chemos every two weeks for 4 treatments, and then another chemo for 12 weeks.  Yes, you read that right...about 4 months before surgery.  

Hopefully I can get the port and clip in this week, and after the scans on Monday, be able to start treatment mid to late week next week.  She said that I would be very tired 2-3 days after the treatments.  Hair will start falling out by 2 weeks.  She said there may be some nausea included.  After she sees the scans, etc. and starts me with treatments, I can send you the names of the chemo, but only if you're interested!

My attitude is strong, and I'm not about pity or being a victim.  There are a lot of people with much worse conditions.  I know this will be a long-haul so I appreciate the positives coming at us!  Bill has and is being great, of course.   Rachel has been tremendous at helping out at the house and is planning a couple more times, which is amazing.  Ben is full of positives for me as well.  Rachel has not talked with Caden yet, which is appropriate since I haven't started treatments yet.  The information from today will help.

If I get anything wrong, Bill will tell me and I'll correct it!  Glad he was there today to listen too!

Thanks for all your good wishes and prayers...keep them coming!

Proverbs 17:22A joyful heart is good medicine,   but a crushed spirit dries up the bones.