How are you?

Point of Reference

2010

The gal in cancer support group e-mailed me, "How are you?

This morning the answer just seemed to be...

Fine...but I'm thinking about a 'growing feeling that something new is going on in my abdominal area'

But if I don't think about it, doesn't it kinda just go away, for a while?

I'm fine until I get the results of the next scan in a month, and the results of the somewhat helpful tumor marker within the month...

I'm fine ... because I'm going to meet my recently discovered family soon

I'm fine - I'm fine

This piece, “Point of Reference" (computer assisted from original) was modified from, “A Day in the Life of Michelle,” mixed media, July 2010.

The art was inspired in Art Therapy recently at Premiere Oncology in Santa Monica, California.

Hexalen®, day 2, 4th month

Today:

1. Take two ChemoCaps with light breakfast

2. Opps, nauseous. This is the first time with these meds. Take anti-nausea pill

3. Back to bed to rest

4. Physical therapy on leg followed by photo of ChemoCaps in therapy room

5. Back home to take a nap due to side effects of drug

6. Lunch: gotta be careful. No problem with 1/4 sandwich

7. Swallow two more ChemoCaps

8. Drive to see oncologist: 30 minutes from door to door

9. Blood draw

10. Chat with doctor

11. CA-125 tumor marker is down! On January 5th it was 510 and a month later CA-125 was 53! Truly exciting results!

12. Stop taking ChemoCaps because white blood count is too low

13. Return to doctor's office in a week for another blood check

14. Pick up a few items at the market

15. Take nap #2 because of the fatigue from the ChemoCaps

16. Go on the Internet, read emails, and check Facebook

17. Review genealogy materials from cousin. WOW! Here is a picture of my grandmother when she graduated from high(?) school

18. Create a Food Network inspired dinner. YUMMM

19. Telephone conversations with friend and cousin

20. Create entry for blog

21. Stretch

22. Clean up

23. Go to bed and remember, no eating or drinking in the morning: MRI check-in at 7:55am

Oh well, maybe tomorrow I'll have time to work on my art projects. Opening Reception of Art Exhibit is in three weeks at Premiere Oncology.

14 Days off: #9

Twice a week a physical therapist works on my right leg. The sarcoma tumor that was removed from my thigh started a chain reaction: limping, hard and tightened hamstring muscles, pain in my patella, lymphedema in the thigh, MRI, physical therapy, and specific home exercises.

Currently, I also see a lymphedema specialist once every two weeks for specific treatment due to the daily swelling.

And it all started with the discovery of a lump below the skin.

14 Days off: #2

Day two

of predicted five days of rain

I'm into collecting rain water

in the empty ChemoCaps

container

While I was setting up the photo shoot

a soft breeze knocked one over

so I need to work out

other water collecting jobs

for these three

Oh,

the buckets and pots are elsewhere

collecting the much-needed rain

P.S., Does radiation treatment

damage muscles, as in shortening

hamstrings?

Hexalen®, day 12, 2nd month

“Don’t Suffer in Silence”

Around two in the morning I realized I was thinking about the pain in my right hamstring muscles, and having a chat with my radiologist. I wanted him to see the damaged muscles and really find out if the 30 radiation treatments of a year ago, that burned 5/6 of my upper thigh, were really necessary.

Then I heard another voice say, “But remember, years ago limbs were amputated as a result of Sarcoma tumors.”

Oh!

Then I asked myself, how could I creatively explore the scope of this early morning wake-up call:

1. I can make another collage with photographs of legs and acrylic paint accents, as I did with “Leg Pain,” now hanging at Premiere Oncology +.

2. I can make a felt-based piece of art, similar to “The Highs and Lows of Leg Pain,” * also hanging in a Santa Monica art exhibition #.

3. WOW! I could make “Trilogy of Leg Pain,” similar to “Hair Chronicles on Canvas” ^.

4. I could also write a conversation between my legs, like I did with my two different chemotherapy drugs at the Ferris wheel in Santa Monica++. I could put it on my blog.

“Oh my, the pain in my leg is gone,” I heard myself say around 2:30 am.

In reality, this early morning writing was like going to group therapy where I allow my voice to be expressed and acknowledged.

A reminder - do not suffer in silence.

+ see Nov. 30, 2009 blog post

* see Sept. 19^, 2009 blog post

# see Nov 30, 2009 on blog post

^ see Sept. 11, 2009 blog post

++ see Nov 24, 2009 blog post

This blog entry was developed and read during "Writers Workshop" at The Wellness Community, Santa Monica, CA.

Hexalen®, day 6, 2nd month

The process of taking my ChemoCaps*

is going well

There are no accompanying pains from taking the medicine,

just count and swallow with liquid

along with a nice meal

The development of side effects is the mystery...

How much of the body will be red, swollen, and later peel?

How much more of my hair will drop out when it is not supposed to?

Will it be difficult to swallow, again?

Will my memory go into a freeze?

How fatigued will I become?

The effectiveness of the medicine is also a mystery until

I have a CT scan in a couple of months

In the mean time,

two capsules four times a day

14 days on

14 days off

Cheers!

...now it's time to take a nap

*ChemoCaps: my term for the

chemotherapy capsules

Hexalen®, day 4, 2nd month

How I'm doing...

The medication is working

inside of me

as determined by the blood work results-

Low RBC, Low HGB, Low HCT, High MCV

Three weeks ago only the RBC was Low and the MCV was high

Since you and I are not hematologists

You will just have to have faith

that my doctor knows what he is supposed to be watching

I have total confidence in him

I also feel the eight ChemoCaps are working because of the fatigue--

It is 5:30 pm and I have already had two naps

and

the palms of my hands are red

Next blood test is in 4 weeks

Hexalen®, day 6, #25

It sure feels good to just write that fatigue is my only side effect from the chemotherapy oral medication. My need for two to three naps is really a delight in relation to a few other in-treatment friends.

I wish all the cancer survivors who ARE having debilitating and toxic side effects will quickly be able to return to a normal life.

Hexalen® Six a day is the Way, day 5, #24

These tiny capsules are busy at work

While I needed three naps today, I was only able to take two

What's in these cancer-killing drugs?

Hexalen® day 2, ChemoCaps, #21

Hi, how do you do?

I'm going to call you my ChemoCaps for chemotherapy capsules.

Have you met my friends and family? They are listening, watching and lending all kinds of support. Some of them are cancer survivors, also experiencing the multiple events that go along with monitoring and treating the disease of cancer.

Additionally, there are the teams of people who are treating, monitoring, supporting, funding, and creating the tools to help the cancer survivors and their families.

So, ChemoCaps, we are not alone. There are endless numbers of people who are helping.

Hexalen® and count down #17

As many people know who have gone to the Internet to gain information on medications, the range of side effects can be pretty horrible/enlightening/comforting, and, none of the above.

But while my oncologist said that nausea would probably be the only side effect from taking Hexalen®, it is still hard to put aside my computer assisted research.

With just a few days away from starting my chemo #4, Hexalen®, I just received additional information from Phyllis, a social worker who works on a cancer information & resource line^, who spoke with an oncologist who* also prescribes Hexalen®.

It was comforting to get this second opinion from an oncologist:

-No violent reactions

-Possible loss of appetite

-Drop in white blood count (which will be monitored through blood tests)

Emotionally I feel better and as soon as my cracked skin is healed from chemo #3, I will begin swallowing my medicine.

*the repetition of the word "who" reminds me of the nursery rhyme/folksong about the old lady who swallowed one item after another--fly, spider, bird, cat, dog, cow, and horse.

There was an old lady who swallowed a fly
I don't know why she swallowed a fly - perhaps she'll die!
There was an old lady who swallowed a spider,
That wriggled and wiggled and tiggled inside her;
She swallowed the spider to catch the fly;
I don't know why she swallowed a fly -... #

Believe me, I don't plan a replay of what that old lady did, but it is fun to be reminded of the childhood songs and rhymes.

^Phyllis Tell, MSW, of the Ronnie Lippin Cancer Information & Resource Line, part of Tower Cancer Research Foundation. NOTE: Services are available only to cancer patients, families, and friends living in Los Angeles County. Toll Free Phone: 877.RLC.2120 and www.LACancerInfo.org

#http://www.rhymes.org.uk/there_was_an_old_lady.htm

Hexalen® and lingering side effects from Doxil®"#15

Just when I thought I had gained all the benefits* from chemo #3, aka, Doxil®, and when I thought the side effects were nearly gone, yesterday the story changed.

Hands are tingling again and the skin inside my mouth is swollen, again.

Oh, I wish there was a manual on this kind of stuff.

The reason I'm so disappointed at these new side effects from the old drug is because I was really getting prepared to start chemo #4, Hexalen®.

If only the two drugs could talk--hummm--

Doxil® to Hexalen®: "I'm feeling left out! You and Michelle are going to so many fun places. She is taking you to the Chinese market, the Santa Monica Pier, to fun places to eat! So, Hexalen®, because Michelle never took me to fun places, I'm going to stay around a little longer. Sure, I'm trying to keep the disease level down, but, I'm going to make life a little uncomfortable for Michelle!"

Hexalen® to Doxil®: "Now come on, we have to get along. We are both known as, {DRUM ROLL PLEASE} Cancer-Killing Drugs! We are Heroes! H-E-R-O-E-S! Michelle's Heroes!"

Doxil® to Hexalen®: "But I'm still feeling left out!"

Hexalen® to Doxil®: "I'm so sorry Doxil®. But Michelle had no choice because she could not touch you. Remember there is a warning--Do not get Doxil® on the skin! And do you remember that the two previous cancer-killing drugs were also liquid drugs that were infused into Michelle's arm. She could not take them home either, or to the beach or to the pier."

Doxil® to Hexalen®: "I guess I'll just have to accept the fact that you are pills/capsules and I'm a liquid. Okay, I'll get over my anger and resentment. Bye Hexalen®"

Hexalen® to Doxil®: "Bye Doxil®. See you around."

*Benefits: dramatically reducing the CA-125 tumor marker (from 6705 to 122) and less observable disease on the PET/CT scans

Hexalen® and Thanksgiving Flowers, #9

Thanksgiving Dinner with dear friends was an opportunity to voice how grateful I'm for the science, medicine, and individuals who are bringing health and life to me and others.

Since I have not started taking my Hexalen® chemotherapy pills, I felt really good that I could TOTALLY enjoy the chips and dip, soup, salad, etc., etc., etc. Even the left overs are fun to eat.

I'm just wondering and some what anticipating that when I start popping the six Hexalen® pills a day (for 14 days on and 14 days off) that my life will be governed by having the container of anti-nausea within arms reach. Believe me, I hope I won't be getting sick to my stomach!

P.S., My oncologist said to begin taking the Hexalen® within 14-21 days from my last appointment (nine days ago). He gave me some leeway because the mouth sores and cracked 'n dry skin from the previous chemotherapy needed time to heal.

Flowers from: Paul's Unique Creations, Santa Monica, California.

Hexalen® and the Ferris wheel, #5

While on my walk on the Santa Monica Pier, it seemed I could almost hear a conversation with the Ferris wheel and the Hexalen® chemotherapy pills.

If you are new to this blog, Hexalen® will be my next chemotherapy drug. Unlike the three previous cancer-killing drugs which were given intravenously, I will be taking six capsules throughout the day. Possible side effects: nausea.

Okay, back to what sounded like a conversation between the Ferris wheel and the Hexalen®:

"Hi, What's up?" Ferris Wheel asked.

"Aren't you funny! Ferris Wheel, You are up! You are up there in the sky!" Hexalen® said in a somewhat impatient way.

"Guess what? I think we have something in common."

"What do you mean? In my plastic container there are 84 capsules." Hexalen® called out.

"Do you have 84 seats up there?"

"No, actually, I take more than 84 passengers. Good guess! But, what we have in common is that we can both make people sick to their stomach!"

"Oh YES, Ferris Wheel! You are right. My cute, little white capsules, can make people...you know...kinda...like...they want to...you know....barf.

I wish we could have something different in common."

"You are right. I'll think about it and you think about it too," And Hexalen® nodded good bye to Ferris Wheel.

"Bye bye, come back soon Hexalen®. Bye"

Hexalen® goes to the Chinese market, #1

Today I was on a mission to get the recommended ginger candy to help reduce nausea, something I might be experiencing once I begin Chemo #4 in 2-3 weeks.

I already have a fresh prescription of Zofran®, the small pill I rarely used while I was being given Chemo #1, #2, and #3.

But the biggest event of the day was discovering other places my bottle with 84 Hexalen® capsules seemed to fit into the Chinese market displays and shelves.

My future photographic walks with Hexalen® will be patterned after the famous adventures that have been generated from Jeff Brown's book, Flat Stanley.

New treatment plan: Chemo #4--Hexalen®

I'm entering a new phase of treatment for the primary peritoneal cancer, aka, my cancer #3. (It is being treated like ovarian cancer)

In 2-3 weeks, depending of severity of the side effects from Chemo #3 (Doxil®), I will begin taking the Hexalen® pills--14 days on, 14 days off. After three months of treatment I'll get a scan.

Oh yes, I said 'side effects from Chemo #3:' difficulty in swallowing vitamin pills and food, open sores in my mouth, swollen lips and mouth, (and I even didn't receive Botox®, but prescription Lidocaine 2% for the mouth did wonders. For the first time since this mouth stuff began about five weeks ago, this afternoon I felt some relief).

Back to the side effects: red, peeling, dry, and very tender areas of skin on various areas of my body. (But, I keep reminding myself, the Doxil® really brought down my tumor marker so overall it did a good job. "Don't forget-Don't forget" is the mantra). Okay, I finished complaining, that is, until I get so overwhelmed that I have to write about this again.

Now back to new treatment: I feel rather excited that I won't be getting infusions. My oncology nurse was excellent and gentle so my blood vessel just seemed to dance up to the surface of my skin. Nausea is a possibility (be positive), so I just purchased the Zofran® pills with an easy-off top (my hands hurt but hopefully they will be back to normal when I start Chemo #4).

Something I'm going to really miss is the support I received from my ChemoBuddies (CBs). I always had someone to talk with while I was receiving chemo through the vein. What is a cancer survivor to do??

I can't call my CBs three times a day while I'm taking my 6 pills a day!

And then, do I celebrate during the 14 days I'm taking the 84 pills OR do I celebrate during the 14 days that I'm not taking the pills?

What is this cancer survivor to do??

Maybe, I can make some art...