Wednesday, September 12, 2012

Pink Ribbons Post - Tests,Tests and More Tests

Pink Ribbons is a feature series I have started that is posted every Wed.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.  At the end of the post, you will find the links of the previous posts from the most recent first and going back.  These are not current events.  This is me sharing with you from the other side of breast cancer. 

August 5th, 2010  This is a long post, it was a long day.  :(

Mandy from Dr. Etters office called to set me up with a Pet scan today! I had to be on clear liquids from that point on. I told her I had already taken my diabetic meds and without food, I would be crashing by 2 pm. She said to tell everyone that I was diabetic and would need food as soon as I cleared the exams I needed to be NPO for.

My friend Joyce drove down 30 miles to take me to the hospital...then 30 miles the other direction.  She is such a joyful help!   I told her about you - my WoW buddies with your pink bracelets and she teared up. She blinked them away, exclaiming "that is so sweet! I want to wear your bracelet." KJ later said "I guess we are buying a lot of bracelets."

So first I met Piper in Nuclear Medicine (or is it Nucler medicine if you're from Texas?)  Piper was the nurse/technician who would draw my blood, mix a radioactive isotope into it and then re-inject it into me. I asked if I needed to take any precautions, toileting, microwave ovens...spider bites anything at all? She laughed and told me I was fine. It was the "nucler terrorist" who put out warnings that my urine was radioactive or that I would glow in the dark until I passed it through.

Piper told me she was 4 years out from her own cancer diagnosis. She wouldn't tell me I would be fine but that I will be given the best fighting chance. Both she and her dh were diagnosed with cancers on the same day... Friday the 13th. (Can you even imagine?  Forget it's the 13th!  Let's just talk about ON the SAME day!) She said they are not superstitious but they confess to getting anxious every Friday the 13th. :) She introduced me to Steve, a ruggedly handsome man who would be doing my bone scan. I was relieved to be told I did not have to disrobe for any tests...unless I wore Madonna's metal bras. (No worries there, although there have been times I've thought I needed one to hoist these girls up where they belong!)   Steve was that handsome cowboy, rock climber, skier look kind of guy.

photo courtesy of

He had one of those althletic builds that came from real activity, not just strutting around in a gym. He actually DID physical exercise...well based on the width of his shoulders it appeared he did.  (This isn't Steve, but this was the kind of handsome that he was.  I'm grateful technician Steve was fully dressed.  It would have been terribly distracting.) I had to wait two hours before Steve could run my bone scan.  That is to give the isotopes time to absorb throughout the entire body.  I laid on the table with a plate running over me. He had one of those thick dark molasses syrup & whiskey kind of voices.  And when he said "Tina can you twist your head to the right?"   I thought "Steve..speak to me in that voice, I will twist my head upside down." :)

So in the meantime I was sent up to CT scan waiting area where I must wait for the next 1.5 hours, I had to start drinking contrast mixes in a strong concentration of raspberry crystal light. So strong in fact, I am quite certain my teeth are still purple tinted. Steve left me in the care of Kathleen. She was a magnificent black woman with awe inspiring hair. Her hair was perfect, finger curls dripping down from her scalp. I couldn't help but eye it and wonder how long it takes to reach a style like that.  It was similar to this chick right there  --> 

I recently had another visit to CT for another exam.  She did not have the magnificent curls.  I inquired about her curls and she began to laugh.  "Oh Child, that hair is a wig!"  Well it was a magnificent wig, I wonder if I could have pulled it off while I was bald?  lol   Sure enough, the next time I went in for another test, the curls were back.

She was informed of my diabetes and my need for food as soon as I could eat. She promised to keep an eye on me and had a single size apple juice on hand. She took my pertinent information and was very interested when I spoke about my lap band. I explained I could not guarantee drinking down the contrast in 10 minutes.  But I'd do what I could. She was very curious and asked a lot of questions. It was kind of fun.  It was nice to talk about something not related to cancer.  (Again, when I went back a year after this for another CT scan, a much thinner Kathleen was waiting for me.  She gave me a hearty hug and told me she had gone on and had a lap band procedure herself and had lost 50 lbs in 4 months.  Good for her!)

I was frustrated because I learned I was NOT having a pet scan. Insurance said "we won't cover a pet scan by itself. You have to have a CT scan and bone scan first THEN we will pay for the PET scan." What a racket. I wanted to call Kelly and let him know that little tidbit. My cell wouldn't work. Nuclear medicine is a cell blocked area. So I had to find a public phone to call him.  I couldn't call or text but I kept getting this message..."senior class for seniors 2010 requests to pair with you. Do you accept this pairing?" I hit no. It popped up immediately again. I hit no. For the next hour my phone was repeatedly assaulted by some pervy senior wanting to mate with my phone. It exhausted my phone. Literally. It sucked my cell battery down like a 10 cylinder engine sucks in gas.

So I'm sitting there waiting and someone walked into the room with great purpose. Most people moved quietly and reluctantly into this area. Not this man, so I could not help but look up. The words burst forth from my mouth..."Pastor Chuck!"  He stopped so suddenly he nearly skidded and whipped around and exclaimed "Rosey! How are you?"  I had to ask him, "How did you know it was me?  He laughed and said "because you're the only one left who still calls me Pastor Chuck."

Chuck had been my pastor 13 years ago in a struggling church. He was the minister who said in a sermon "When someone extends compassion to you in your time of need, be grateful. For compassion is learned. It is born out of the personal pain in which we learn how to extend compassion to another." It was so powerful to me I have never forgotten those words.  He is a very special friend.  Our little church wasn't doing well and eventually the district and shut down our little church.  

He hugged me and asked if my diabetes was worse. I shook my head and took a big breath to say it out loud for the first time to someone who was not in the medical field. "No. I have breast cancer."

He turned white and gasped out. "So do we!"

Now isn't that sweet?  His wife J, a most gentile woman now has cancer but he included himself in the process.  Later when I shared this with KJ and he nodded. He agreed that while I have the actual breast cancer it impacts his own life so intimately that he feels WE have breast cancer. He plans to use that terminology as well. 

His wife, J is going to the same surgical group I am and she's seeing oncologist Mary Muscato. I'm seeing oncologist Joseph Muscato.  They are a husband and wife team. We both have our first appointments this Friday.  J was told to expect chemo first before surgery. I was told it MIGHT be before surgery.

Chuck explained that she was told that doing surgery first required waiting 6 weeks for chemo to start.  The incisions had to be totally healed before doing chemo. Chuck was on his way to see another patient. So he hugged me and I told him I'd be praying for them and getting in touch with J. since it looked like we might be "breast buddies".  I'm pondering this news that her chemo is first.  I still have very limited internet access so this is new information.

Since then I have learned how important 
it is to wait those six weeks.  I hear the horror stories
 of women whose doctors started chemo just 10 - 14 days
after a mastectomy or lumpectomy.  Many of those poor dears
 have incisions that rupture, necrotic skin, infections, or incisions
 that won't heal properly because the doctor rushed and the chemo
disrupted the immune system!

We are preparing for something to start soon anyway. So this weekend, I'm going to order a chemo hat. I will need something to use before I get these precious handmade ones you are working on.

Kathleen brings me my next quart of contract to drink. I told her I was going to the gift shop. Big disappointment. It's remodeling and all they had was cards and flowers. Not a way to kill an hour, but I found my cell worked in the main lobby. So I called KJ (MR. Rosey) and told him about Chuck and J.  

And I got cold. I mean R-e-a-l-l-y cold. My fingertips turned blue and felt icy. I kept looking around to see who opened an air vent and saw nothing. I finished the call and walked back to the waiting room and sat down. I immediately started shaking and chattering so hard, my feet literally were bouncing on the floor. 

Kathleen rounded the desk, took one look at me and said "oh honey, you are having a reaction! Hang in there I will be right back." Her comment made me realize I was shaking like KJ does with HIS IGG reactions.

This kind of reaction, called "rigors" is defined as the sudden attack of severe shivering accompanied by a feeling of coldness ('the chills') and is associated often with a marked rise in body temperature. It may be described by patients as an attack of uncontrollable shaking.   Enquiry should be made about:

  • Symptoms suggestive of local infection, particularly respiratory infections, urinary infections, biliary disease, and gastrointestinal (GI) infections.
  • Recent surgical procedures.
  • Any relevant past medical history such as rheumatic heart disease.
  • Recent foreign travel.
  • Medication and allergies.

Next time Mr. Rosey is getting infused and complains of being cold, I will understand how he feels. Kathleen came right back and started tucking these wonderful heated cotton blankets around me. I loved her at that moment. She told me I would be fine but this happened to some people. It would get better. And it did. The bouncing reduced to jitters then shivers and then plain chilled over a 30 minute time frame.

Then TJ came out to get me. TJ is cute in a boyish way, he's chubby, friendly, and he laughed easily. He was medium in height and I couldn't help but notice he had his hair cut the same as my son's, a 1/2 inch buzz.

He took me back and pulled blood out of my iv to check the levels of contrast. I swear it was as purple as that raspberry crystal light they had me guzzling. TJ was also very curious about lap bands and as he injects this tube and that one he's asking me for details. I go to the scan room and was VERY relieved to see a short tube I had to go through. Perhaps only two feet in width as opposed to a long cylindrical coffin I expected from internet photos. Tj got me situated and starting running scans. Four in total.

But there seemed to be an eternity between each one. I'm praying "Oh Lord, please let these be clear. No cancer anywhere else. Please."   In my mind's eye,  I saw his monitor screen lighting up like Christmas trees while he shouted for Dr. House to "come to CT Stat!"   I could see all of Dr. House's crack medical team bent over the monitors asking each other.."What the heck is that?" as they pointed at the bright blobs on the screens.

When TJ came back out to start the IV flowing for more contrast. I told him...You know it's pretty terrifying how long it takes between pictures. He asked me why? So I told him, "because I'm terrified you're finding cancer from my nose to my big toes and you're in there consulting with specialists from all over the country."

TJ chuckled and shook his head. "No Rosey," he said..."95% of my time is spent on paperwork. Charting what I do and what you did." Then stroking his barely bristled chin he said to me..."It might be a good idea to let patients know that when I explain what will happen. At least to newly dignosed cancer patients anyway."  I agreed it helped me chase Dr. House all the way back to Hollywood knowing TJ was just doing non Hollywood type paperwork.

The ct scan was finished and TJ helped me back to the waiting area where Kathleen was watching for me. She held in her hands a box lunch and explained she had ordered me an express lunch and I was to sit and eat it before my bone scan. :) I hugged her, and whispered to her my thanks and told her that her care and compassion made this easier to get through. The poor woman welled up with tears, called me a "oh you sweet thang" and gave me another hug. Then she shooed me away.

Steve told me to eat the lunch. I was his last appointment and he would wait for me.

Now there is a trick to eating when you have a lap band. You have to eat slowly. If you eat too fast or too much you will yak it back up. So I ate half the sandwich and a couple of the baked lays. Then I reported for my scan.

I had overlooked characteristics of MY lap band. It likes to burp.  I can't explain it scientifically. My best guess is that food lodges in the lap band pouch and as it softens and digests a bit, pieces of food drop through the band into the empty lower part of the stomach.  My theory is that as the food drops a small amount of air/gas is floated up the pouch and into the esophogus. It's a tiny little burp that most people aren't aware of. But it happens constantly as the food mushes and falls.  I call these series of repetitive burps, my "piggy noises."

I had not counted laying down for the bone scan. (Every photo I ever seen of bones, they all have been standing upright...except in that show "Bones", where they are in pieces around a room.)  So I had to lay there while rugged handsome Steve is moving in and out. And the lap band is gurgling, it's bubbling and I can't burp the bubbles up and out from a laying position. It wasn't long before Rugged Handsome Steve told me we were done and untied my feet. (to keep them in one position during the scan). He helped me sit up and like a ricochet in the Grand Canyon here it came...bbeeeerrrroooooouuuuuppppphhhhh!

He did not even crack a smile but asked "Good lunch"? Ahhhh could you just hate that? I told him lap bands like to talk after a meal. He just smiled, nodded and took my IV out.  I think he was just humoring me.

No one had warned me that these tests would make me feel like my blood had been replaced with lead. Or that St. John and I would be inseparable for several hours as I eliminated those contrast chemicals.  I was only a block or two from home when the bubbling started a lot lower this time.  I duck walked to the door, but by the time I got in the door I had lost control of the mess.  (Contrast fluids CAN cause sudden, intense and projectile diarrhea.  Fun, huh?)  Luckily I was wearing pants that contained the problem but a shower was a must have.  I tossed everything into the washer.  Then I curled up in a fuzzy blanket and for the next 4 hours I remained very intimate with St. John.  (I didn't want to share that information but in the educational sense, full disclosure required it.  So yes, I just told the world that I lost control of my bowels.)  KJ brought me home some soup and when I got was to go to bed.

I was in bed by 8:00 pm and it wasn't a school night.

It's finished. Well this is, but I have some venting to do. I have to get busy on something and I will pop in through the day to tell you about my "thoughtful one moment and then snarling butthead the next moment" hubby.   Oh and my sister who is so thoughtful to share with me how God is showing HER comfort in my health crisis. grrrrrr

Responses by WOW

Nell: Well Tina, while the topic is not a favorite of anyone here, you sure do know how to tell a story!! I find it interesting how God is bringing you and J together through this journey. I do pray this will be a blessing to all of you. I just love Kathleen! Will you see her again? When do you get all the results?

Paula: I agree with Nell. You can already see God's hand in this and that is such a comfort. Don't forget that when things get tough. (Not that they aren't already tough) It sounds like there are some amazing people working in that profession. I know for me, it matters tremendously how the doctors and nurses treat me. I'm so happy that you had a good experience. Rosey - Be thankful it was a burp and not air of another kind. hehe

Meeshia: It is always amazing to me that from the prayer perspective; we pray for God's presence and protection will be surrounding you through every step. And then to hear how He does provide that does nothing but make me smile and make my spirit sing. I suppose it comes from not being able to be there, that we pray specifically for those tender hearts people to be with you every where you turn. But to really hear that God is providing that (like I'm really surprised?) is totally amazing. It does not surprise me that God brought you to meeting your past pastor or that he brought tender hands and heart from Kathleen.

I can imagine you can write a book just on your lap band alone with all the strange thingof any of it! :) I'm sure that must add some comic relief in moments that could be much harder without the interruptions.  I'm sure that the waiting is what will get to you over the next few days. Do you know when you will have your doctor's appt. for them to give you the results of all of these scans? to be honest, I've read all your texts/posts but I can't remember if you did tell us when your next appt. was. I'm thankful that you talk to us and let us know what is going on. Thanks for making your fingers tired. I hope that it is soothing to your spirit as you type us updates.

Linderlou: While I hate what you're going through, I sure love the way you talk about it. I have a crush on Steve and I want to hug Kathleen. I laughed so hard when you talked about how your lap band reacted to your lunch.  I just love that God brought you back in touch with your former pastor and his wife. You'll be able to help each other through it. Maybe KJ is acting the way he is at times because he's so worried.  You're in my prayers, sweet Rosey!

Rosey: I understand what KJ is going through. He understood exactly what Chuck meant when he said "We have breast cancer too." We had several talks last night. K's been reading on the Susan G Komen site. One thing he got upset about was reading about the emotions and stages. The disagreement we had on Monday was over me not being "positive" enough. He said I acted like I was convinced I was going to die. I lost it because at that time I was terrified that I was going to die. Not necessarily of breast cancer…but of breast, ovarian, colon, uterine, brain and bone cancer all at the same time. I've been terrified. Now I've moved through that a little and accepting that is more likely that I just have breast cancer. But he was going on and on about having to be positive.

SGK website said theres no scientific proof that state of mind affects the outcome. It can make a difference in coping, but not survival. But he read that the pressure for the newly diagnosed to "Stay Positive for everyone else" causes more anxiety because they feel they can't even do breast cancer right. And we are letting loved ones down by not singing and clapping along with the breast cancer fight song. lol I had to agree with the article. I feel so much pressure to "have cancer the way they want me to". Then he read the stages of a diagnosis and we could see how I have been experiencing them. He spent a time weeping and talking through HIS fears, worries and boy howdy don't you know THAT was fun! But I needed him to do it because by hiding his fears from me, we couldn't address them.

Having cancer is exhausting with all the unknowns 

1 comment:

  1. Mercy but you DO know how to tell a story!! I completely understand the shivers you described. With each of my babies the first thing they did when I showed up for delivery was give me an IV with fluid and antibiotics (as precautions). I ALWAYS get shivers and shakes after they start the fluids. ALWAYS. Then they think I'm cold because the hospital is cold and cover me with heated blankets that do no good because I'm cold on the inside not my skin. And I can't stand up or control my body once they start. It's always fun to have the guy giving me an epidural tell me to be still while he inserts the needle. If I could I would!