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.