7-26-14 Little Bit a 'Dis…Little Bit of 'Dat...

It's Saturday. Post Chemo Day #10. I have become totally self-absorbed and self-centered and self-aware. The leather couch is my cocoon. Maybe my skin is morphing into leather...

When I think back over the past 10 days, there was not one day that was 100% horrible. One day that I thought, "This is the worst I've ever felt in my life." But, on the whole, it has been a terrible draining few days.

I got a sore throat on Monday or so. I told the nurse when I was in for my pretty much daily blood draw. She was not a nurse I knew (or that I care to know!) She came out and said, "Well, if you'd read your notebook you'd know that's a side effect." End of story. Loy said later, "Boy, she was kind of scolding you, wasn't she???" Turned out they called me later in the day and said I should come in the next day for a bag of fluids. Take that, mean nurse!!!

I think it may have been from the sore throat, but about Tuesday my appetite just shut down. I didn't feel nauseous, just as not hungry. I would try to eat something and it was like eating with no saliva. Sawdust. I tried, but just could not do it.

By Thursday, I decided to give up totally on nutrition and just look for calories. Two yogurts, an apple, half a DQ ice cream (you know things are bad when you can't finish ice cream!), a little dab of chicken and rice. I viewed this day as a success. By now I was unable to take pills because they were sticking on the way down and choking me!!! Not fun!!

Yesterday I mentioned the sore throat again to a nicer nurse. She looked at my throat and said, "Yes, it is really quite red and swollen." She talked with the doctor and they think it will heal on its own now that my blood is good again, so that's a great sign.  So, yesterday I ate a whole 1/2 cup or so of lasagna! And half a hamburger. This morning I ate almost a whole blueberry pancake!! YAY!! My throat is still not normal, but on the way. Stupid nurse.

I weighed myself today, though, and if I can't put 5 pounds on in the next 10 days or so I think they'll yell at me!!!

On Tuesday I went to bed at 6:00 p.m. I can't believe it!!! It was so light outside. I fell right asleep, then kept waking up and it was still light. Finally I thought, "Ok, this cannot be. I must've slept through the night and it is 8:00 a.m." Nope. 8:00 p.m. Not a very restful night of sleep. Next chemo I'm going to try to always stay awake until at least 9:00.

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Through all this, there has been one staple in my diet that has gotten me through. One healing balm drink that has invigorated and quenched…Sonic limeades. I have been getting one of these every single day and loving every juicy gulp. I did branch out last night and got a lemon slush instead and I think it may have the same miraculous medical properties. BUY STOCK IN SONIC.

One other medical breakthrough that, while I cannot prove it, I have 100% assurance in it's healing properties…my brother, Den, has always made breading crumbs to die for. For years we would beg him to tell us the recipe to make his famous breading. He has always been stubborn, and would not divulge the secret formula. Finally he admitted that he doesn't have a recipe--he just throws whatever cracker crumbs he has leftover and they just sort of mix. (And, I don't know…he may add spices also?) I called him and said, "Den, I have cancer. Would you please send me some fish breading?" He quickly acquiesced, so yesterday my package of Den's Golden Healing Crumbs of Life arrived. Once I start dosing with these babies, I'll be cured. I am debating an internal dosage vs. just applying them directly over the cancerous spot…  :) Thanks, Den!!

Yesterday and today Loy and Luke went up to Sioux Falls, which required I have a "babysitter." So I asked two friends to split the shift.

Pam came for the day. We went to the doctor's office, got lunch, and then I sent here to the grocery store. She was kind of lamenting how hard it is to shop for someone else…guess what was the hardest decision for her to make??? Which rawhides to get the fur girls. She's been a friend for 30 years (really) and we don't get to see each other very often, even though we live in the same town, so it was fun to catch up with her. (And, Pam, I never finished telling you the story of that book…it is called "Seven" by Jen Hatmaker and it sounds an awful lot like your cousin and his wife to me. I think you'd like it.)

Then, around 5:00 Lisa came. She used to babysit the kids back in Kearney in the '80's. And she cleaned my house for me. So, when she came over I said, "Would you do a load or two of laundry?" She, of course agree, and I think it has turned into about twelve loads!!! She even ironed!! She has let the dogs out, let the dogs in, thrown the ball, cleaned the kitchen, made blueberry pancakes. She always was a great housekeeper--if her current job doesn't pan out she could always get a job as a personal assistant!!!

However, there is one fly in the Lisa ointment…last night I was sitting there in my jams--PJ pants and a lycra tank--and she said, "Kitt. These don't match." :) How many people would say that????

I am trying to NOT fight the restrictions on my daily life--like the restrictions that I not online shop or drive. I guess I do feel they are a little bit unnecessary. But, here is a transcript of a conversation with Lisa yesterday:

Me: I would like to go to Walgreens for some new makeup.
Lisa: Where is the closest one?
Me: At 48th and Huntington. Turn at the corner, then go to Huntington and turn right.
Lisa (when we arrive at Huntington): So I turn here?
Me: No, you have to go a few more blocks.

Me (as I realize we have just passed Huntington): Oh, I guess you should've turned there. Just go up to the next block and turn left.
Lisa: Turn left???
Me: Oh, no, I meant the other left--turn right!!!

Later last night, when I am trying to navigate her home by a back way:

Me: Turn left right after that stoplight.
Lisa (slowing to turn left BEFORE the stoplight).
Me: No, AFTER the light.
Lisa: So, when you said AFTER the light this time you meant it??

:)

Guess I won't drive for awhile.

I am blessed with so many wonderful friends. Really.

I did get my little head shaved on Thursday. Lori, my hairdresser, said that she could tell the hair was about to fall out, so I decided to take control and just do it. There is something almost empowering about that. So, we're wearing scarves and hats again. I got new make up last night, so I feel like a new person.

Ann just brought a wonderful supper over. And, guess what? I am eating!!! I was going to wait for Loy and Luke to return (in about an hour) but thought, "I have cancer. Why should I wait???" It tastes good. I may eat it again when they get home. YAY food!!! And, Ann, if I could get this recipe I would absolutely adore that…it may have to be added to my list of surprising health foods.

If you're in the mood to pray for me, here might be a few things:

1. That the sore throat would totally heal. (It is better today than yesterday, so that does seem to be happening.)

2. That my GI problems would cease.

3. That I could gain 5 pounds back so the doctor's office would never need to know…

4. That the next chemo session would be better tolerated by me--I think if I didn't get the sore throat maybe it all would've been more manageable.

 
Killing me to NOT be up there where this is what's happening!!!!! But I am so glad that Luke finally got to met Carter. Carter obviously love, love, loves Luke!!!

Talk to you soon!

Love,

Kitt.

7-21-14 The Fun Just Never Stops...

Well, I don't know if I should blog today or not. I'm not in a "happy place." I have a chemo-induced sore throat, my tummy feels strange, and I get light-headed whenever I get up.

BUT…I was blessed to see a dear friend while we were out doing the rounds of blood draws this morning. And I have two cuddly little naughty pups laying (lying?) by my legs. Two other dear friends have texted me today just to check up on me. And I have a husband who is trying to protect me from myself.

Evidently I have started cooking something at the stove three different times and then just walked away and left it. I didn't realize I was doing that. That is bad. Is it any wonder he has taken over all my pill taking? Who knows what I would be taking when if he didn't come in and take over!! (But I will admit, there is a part of me that is kind of ticked that he thinks I can't take care of myself!!)  :)

These chemo drugs seem to be more energy sapping than I remember from last time. I sleep. And sleep. Sometimes holding my cell phone is too hard--and, if I can't hold my cell phone you KNOW I am exhausted!!! My iPad is supposed to come either tomorrow or Wednesday, so that is good news. Maybe I can listen to some books on tape. I'll be like that commercial where the English-speaking guys get in the car and listen to the Spanish language tapes and, by the end of the commercial, they are fluent. Maybe I'll try that!!

Today was a blood draw to check my potassium. Wednesday is a blood draw to check my red and white counts. Then, I believe the next poke will not be for 2 weeks, until the next chemo session. YAY! But, these girls who poke me are pros. It never hurts at all.

So, that's about all I have to say. Not much. Just enough to let you know I'm still here.  Sometimes it just seems too much--that I have to do this five more times. But, I can't focus on that. I can pray for strength to get through today.

"I have made you. I will carry you. I will sustain you. I will rescue you." --Isaiah 46:4

What more can I need???

Kitt.

7-18-14 Haven't I done this before?

I am an independent person. Very independent. Since I was a child. Always. I'll do it my own way and when I want to! When I was two-years-old I decided I would NOT nap anymore. (What foolishness in my little heart!!) When Mom told me that my response, deep in my heart, was "No child of mine will ever give up their nap at 2-years-old!"  Well, guess when three out of my four kids gave up their naps???

Anyhow, I had given Loy a charge…keep my phone so that I don't make any silly, nonsensical texts. And Loy, being the legalistic, rule-follower he is, took me at my word. However, he is not quite up to the challenge of sneaky Kitt. I guess whenever he was out of the room I would snatch up my phone and start typing away. I don't think I did anything too crazy, but if I did, I'll pay you $1,000 to keep it to yourself!!!  Today when we were talking about it I quoted "Galaxy Quest"--which we had just watched on Sunday. He was kind of upset with me fighting him on the job I had given him. I said he should have said, "I have one job on this ship. It's stupid. But it's the only thing I do!!!!" I think he laughed at that.

Chemo Day is very long. It's not a bad day because you (the patient) are pumped full of lots of pharmaceuticals. You feel pretty good--kind of sleepy and not too worried. So, for me they began with the pre-meds, anti-nausea drugs (2 of them), non-anxiety med, bag of fluids, then the first chemo drug (this is at about an hour or so in to the treatment.) It can causer peripheral neuropathy (meaning your fingers and toes can get numb or painful or tingly as a side effect.) So they wrapped my feet and hands in ice packs during that time. Then we moved on to two bags of fluids--at over an hour each bag. You can imagine that there were several trips to the bathroom during this time. They just unplug the IV pole and in you go.

Finally you get to the really high powered drug, the one that has required all these bags of fluid. It can do kidney damage so they want to make sure it just comes in and then out of your kidneys. So, another hour and a half for that, then one more bag of fluid, then you go.

I slept some (and snored--now Loy has medical proof!!! That is really bad news for me!!!!) and got a care package from a friend, and listened to music. We tried to watch TV but didn't have any good shows, so turned that off. Nurses are in and out, so we talked with them. Loy went out and got lunch for us at one point.

Today I feel kind of tired and, while not nauseous, my tummy just doesn't feel quite 100% right. "They" say that if I am going to get nauseous it would probably hit on Sunday, so I'm planning on staying home from church to see how it goes.

My hair will vamoose probably on Friday, so I plan on shaving it on Thursday. I have two blonde wigs someone gave me, 15 or so hats (same donator), and 8 or so scarves, so I should be set and styling'!!

This cancer has been rated a Stage 2b. The size alone makes it go to at least Stage 2. The b is, I guess, because it touches the chest wall. I asked when we could see it shrinking and she said there is a possibility by the next appointment, but don't be concerned if it takes a while longer. No imaging will be done until chemo is all done, though. Then the surgeon will want some for planning purposes, I guess. And, the goal is not to shrink the tumor. It is to get it gone completely!! YAY! I'd be all for that! But we would still go ahead with a bilateral mastectomy anyway. I do NOT want to go through this again.

It was a different doctor last time and she had trouble finding the lump too, so I don't feel quite so badly that I missed it! It is positioned kind of weird and goes from front to back, so it's just not easily detected.

When I was in for my port on Monday an official hospital employee woman came in and said, "I'm your breast navigator." What???? I have a breast navigator? That's like having staff!!!  I had given Lex my phone that day and she kept handing it to me to read a text, just like I imaging Gayle does for Oprah. I felt like a movie star or something!!

My breast navigator had given me a book that said on the front, "It's all About You…" and then she wrote in my name. So, there you have it…"It's All About You Kitt!!" I KNEW IT!! I always knew it!!!

Oh, and I don't have just any port. I have a "Power Port." We're still trying to figure out just what Super Powers I inherited from that--teleportation? invisibility? ability to fight off cancer monsters??

My visualization for this cancer is that the chemotherapy is like little cartoonized piranhas--chomping away at the tumor. Feasting. Let's hope so.

Here's a picture of me and a monkey, given to me by my special friend, Dawn. Part of what makes this so special is that this particular monkey belonged to her beloved son, Jake, who was killed in a car accident about four years ago. He was quite a comfort to me yesterday!! Thank you, Dawn!!

And now, the cutest little window display you'll ever see!! Payton is at the shoe store (the one that opened yesterday) that my three boys have started. It is in Sioux Falls and, if you want to stop by, they would love to see you!!! It's called the "605 Running Company" and they will do a great job of fitting you in some terrific shoes!!

Thank you for all your prayers. I feel them. Really. Pray these little piranhas would eat and eat and eat. Pray my tummy would stay calm. Pray for endurance for my pill manager (Loy), driver (Loy), scheduler (Loy), cook (Loy), exercises (Loy). etc. (Loy).

Love,

Kitt.

7-11-14 The Good, The Bad, and The Ugly

In my mind I was going to take a break from all this cancer talk and tell you about my sleep study of last night. How interesting it was and how many electrodes were attached to me and how I slept and how I DID NOT SNORE DURING THE SLEEP STUDY. (This makes me a bit suspicious of Loy's reporting of my alleged snoring…maybe he just wants to sleep in the other bedroom!!!) (He says he has a larger sample of my sleep noises, so is not backing down!)

However, today was not a good day. . .

It all began last Wednesday when I was scheduled for a breast MRI and a PET scan. Since surgery was scheduled (bilateral mastectomy) this next Monday, these were precautionary scans just to tell the surgeon how large the tumor was and to make sure the cancer had not moved anywhere else in my body.

THE GOOD NEWS

The cancer does not appear to have spread. YAY! The PET scan is not 100% foolproof, but they only saw one place that was even interesting (other than the cancerous mammary) and that was my lower back. And I have had a bulging disc on and off there for years. The doctor has ordered a bone scan, just to be sure, but at this point no one thinks that is anything to be concerned about. (If it were to have spread there, I don't know as that would change my treatment plan anyway.)

THE BAD NEWS

The MRI says that the tumor is 6 centimeters, sort of going front to back. And it touches the pectoralis (which I guess is the chest wall.) If the surgeon were to take it out right now he would have to remove some of that muscle, which I guess they used to do in the old days, but no more if they can help it.

Now, (boys, cover your eyes for the next few lines) I am a small busted woman. How did I NOT feel something 6 centimeters in there? I have been good at doing self-exams? That is a big regret to me. I feel like I should've been more diligent, more observant.

FYI: 6 centimeters = 2.3622 inches

THE UGLY

So…here's the new plan. Surgery is postponed. Monday I will go to the hospital, be injected for my bone scan, have a port placement, then have my bone scan. Thursday we will begin chemotherapy. It's all the same components that were planned before, just in a different order. The thinking is that the chemotherapy will shrink the tumor so it is not near my chest wall anymore so it can be removed more easily. (Good news: it is just touching the chest wall, it does not appear to be attached to the chest wall.)

This is really bothering me. I think because I had psyched myself all up for the old plan and now it's different. And because it's different because it's so large. And because when you have this mother-lode of a tumor, you want it out--NOW.

This next part will be very medical, so you can skip it if you want. Some people might be interested though:

Chemo will be cisplatin (possible side effects: vomiting, altered pottying, anemia, hair loss, hearing changes, change in taste, numbness and tingling in extremities) and Docetaxel (possible side effects: anemia, allergic reaction, fluid retention, hair loss, fatigue, mouth sores, rash and itchy skin, numbness and tingling in extremities, color changes in nails.) Sounds delightful, right?

And the chemo session…EIGHT HOURS!!!!! Can you even imagine???? The first drug messes with your kidneys, so you have to sit there and have three bags of fluid before they'll even start that one.

It will be every three weeks for six sessions, so we figure we'll probably be done around Halloween. Then there will be 2-4 weeks to recuperate, then the surgery sometime around Thanksgiving.

I dread it all. Really.

I went and got my hair cut super short today so that the hair loss will be a little less traumatic and I'll go and have it shaved in a couple weeks, moving to scarves and wigs.

So, if you think of me on Thursday, please pray that I would not have any nausea from chemotherapy (I prayed that last time and God miraculously kept me from ever getting sick.) Pray I can withstand all six treatments and that this monster tumor (at least in my eyes!) would shrink rapidly and shrink down to next to nothing.

I should end with something funny but, honestly, I'm not feeling it tonight. I am feeling discouraged, scared, mad, sad, and defeated. It just doesn't seem fair. (Not that I wish this on anyone else ever.)

But, you know what? The sun will come out tomorrow and I probably will feel somewhat better and more optimistic. And I've got a million things to do before Monday and before Thursday, so I'll be busy until then.

There's an old (kind of old) song that says, "When you can't trace His hand, trust His heart." I can't see why God would do this to us. But, I know He loves me.

"For each day He carries us in His arms." Ps. 68:19b

Wish I was here!!!!!

7-9-14 It's "Deja Boob all over again!!"

OK, here’s what I know…

It is triple negative again. (www.tnbcfoundation.org/  in case you want to do a little research!)

Mastectomy was a must. I have no choice in the matter. Bilateral is my choice.  Here's how I see it--once you've had a partial mastectomy (a/k/a lumpectomy) if it returns, you MUST go with the mastectomy. No option on that. The only choices are one side, both sides, one side with reconstruction, both sides with reconstruction. He will try to get some lymph nodes on the left side (where the cancer is) but it may be too difficult due to past scar tissue and the effects of having 33 radiation treatments six years ago. (Yes, it's been six years. Wouldn't you have thought I'd be in the clear?)

I had a breast MRI and PET scan today. Assuming both of those are good--no cancer metastasizing anywhere else and no super large tumor anywhere--surgery for a bilateral mastectomy (abbreviation for that is BMX--at least that's kind of cool, right?) on Monday, July 14. IN FIVE DAYS!!! Yikes!!  If the cancer is somewhere else in my body or the tumor is large we switch things up and do chemotherapy first, followed by surgery. 

Chemo is just about for sure after surgery. My doctor likes to wait 4-6 weeks post surgery before she starts chemo.  I WILL lose my hair again. It is not quite as terrible as the first bout of chemo was due to different drugs. It will take 13-18 weeks, depending on exactly which drugs she goes with. That puts us near the end of the year, I guess—best case scenario.

The cutting edge place for triple negative breast cancer is probably Sloan-Kettering in Manhattan. The time for me to go there for a 2^nd opinion would be after surgery, before chemo. She doesn’t think I’ll qualify for any studies because this is a recurrence, not first occurrence. If he recommends traditional drugs, it can be administered here. If he wants something experimental, I would have to treat there.

Want to hear the whole story??? If I've already told you, you can skip the next few paragraphs…

Six years ago they used an ultrasound-guided needle biopsy to diagnose me. That was awkward and undignified, but not too unpleasant of a procedure. So, late June I went in for a routine mammogram. (And let me say right here, I am pretty darned good at doing self-exams!) Anyhow, when the technician comes in and says, "The radiologist would like a few more picture of one area…" I went, "Uh oh." We did those. Next she came in and said, "The doctor will speak with you." That's the ol' kiss of death. I knew it was bad. She said she had seen something and needed a stereotactic biopsy to see what it was. They could not do the ultrasound-guided one because it involved calcium deposits and ultrasounds do not pick those up well.

An hour later I was in for my biopsy. They have you lay on a table with strategically placed holes. Then they crank you up and work below you like you're a car having its oil changed! And, to add insult to injury, she said, "You're so small…I took the mattress off the table." Sigh. 

So, I am laying on this metal table that is covered in a sheet. Down below they have a mini-mammogram machine which they say they are going to use "gentle compression" with. Right. It's a mammogram machine. Girls, you know what it felt like!!!

Anyhow, they would position me and then all three would run behind the wall and do a mammogram picture. Then they'd come back and position me a little bit better and run back again. Finally I was in place.

The doctor came in and numbed me and then did the procedure. It really was not too bad of a procedure. I did not feel any pain. Just the indignity of it all, being in a vice grip while hanging through the table. 

I got a call last Wednesday (one week ago today) saying it was cancer. I was not surprised. I felt that the radiologist really knew, but had no proof. Then we swing into disaster mode. 

I've got my pre-op physical scheduled. I've got a haircut scheduled (going super short to lessen the change when my hair falls out). I am going to schedule a massage for this week. (Thank you, Loy!!)

People ask, "How are you doing?" I don't know what to say…I still feel just fine. I tell jokes and sing. But I also cry. I think when I am sad and cry it is because I'm thinking of all that I will miss if things turn out the way we dare not even mention. 

One funny thing, though…Loy and I were doing our post-supper devotional the night I got diagnosed. The Bible verse God chose for us to read that particular night was, "The mountains shall depart and the hills be removed, but My kindness shall not depart from you…"  --Isaiah 54:10.    I've never been known to have "mountains"!! But they're going to depart and those pesky hills be removed!! :)   I laugh at that, but remember that God's kindness is here. Whether this is what I think I needed or not, God is doing what is best for me. I don't like it, but I can't understand it right now. 

I hope I remember that at all times through this next few icky months.

I'll post this on Facebook, but if you don't "do" Facebook, you'll have to subscribe to my blog. It's too hard to email it all out each time. (And I don't want to do a CaringBridge site…I like doing my blog instead.)

Thank you for praying for me when I come to mind. And, just so you know, every encouraging email or text I get, every Bible verse you print out for me, every note I get is saved and read and re-read. 

This is on St. Kitt's Island. Right now cancer is the monkey on my back!!

7-2-14 The Prayer Request

Hello All,

Let's just get it out there. The report was bad…cancer has returned. 

That's really all I know at this point. I will meet with my oncologist next week to look at what to do. I don't know if it's big or little or aggressive or slow. Is it the same cancer as last time or a new one? 

I am sad. Very sad. And kind of in shock, although I will say that I just "had a feeling" it was going to be bad news. I tried to pass that off as just my German pessimistic genetics, but I guess maybe those genes are right sometimes. 

I don't mind people knowing, but I hate the telling. So, I have emailed or texted some of you instead of calling. 

We're still planning on making a trip to Arkansas this weekend. I can sit around here stewing and fretting or I can go see my sister and brother and nieces and nephews and take my mind off my troubles, right?

So, that's the news. I'll write more later, I'm sure. You know that is how I process things.

Wondering if I'll need that Asian wig…chin-length, black hair with bangs? 

Love,

Kitt.