Session One: Week 1

Here's Week 1.

Sorry to be so late in getting this together. My first week of treatment has gone mostly well, especially no big-ticket side effects. I'm pleased. I've been told by my doctor and others that a pattern is formed with the first session.  With a few tweaks with minor meds, I'm hoping for a very tolerable, un-eventful series of treatments. Thanks for your support, it's what helps me the most.

I've mostly drawn from emails that I sent to friends/family to bring my blog up to date. 

Day 7:  Sunday, January 23, 2011:

I'm doing incredibly well considering.  Mostly my days have been quite good.  I've had a few bad nights of not being able to sleep caused from meds.  I'm off everything as of today, so hoping for the best tonight. The Zofran anti-nausea drug really did a job on my brain--wouldn't let it stop for a minute. I'm off that now for a couple of days. Something was raising my heart rate and making my head pound and my brain work at full speed again last night.  Didn't get much sleep

When I started this adventure my mantra was, "One day at a time".  It's worked very well,  What I've added to it is, "One night at a time".  Let 's hope that does the trick.

The EMend (three pills, $150 each and worth every penny, taken day of chemo and the next two days) to prevent nausea really worked well.  I've been able to eat pretty much whatever I've wanted--wonderful.  Also, everyone talked about how the shot of Neulasta (to boost my white cells) would cause aching and flu-like symptoms--pretty much avoided that, too. I'm feeling strong. Yesterday we walked around Meijers to get some activity. Had a problem with constipation earlier from the Zofran and now am fighting a bit of vaginal irritation; but seem to have that under control this evening.  I've been taking a lot of probiotics to get my gut and other areas back in shape; both are very affected by the chemo. So, all in all, I'd say I'm doing fantastic!  It's been a "Doctor Oz" weekend--you know his favorite topic!

I'll see my doctor again on Tuesday to get a reading on my white count (she said it would be at it's lowest point then).  I'm hoping that it will still be in the normal range, although I expect it would be on the low side.  Then I wouldn't be as vulnerable to infection. 

Thanks for your wonderful thoughts and prayers.  I believe it's you and all my friends/family who are carrying me at this time. THANKS.   hugs,  Josetta

I thought you might be interested in this info about the 5-HT3 antagonists (EMend) to prevent nausea: Chemotherapy affects normal cells in the body, especially faster-growing cells like those that line the stomach.  The side effects can occur when chemotherapy directly stimulates a special "vomiting center" in the brain. EMend blocks the nausea and vomiting signals in the brain, rather than the signals in the stomach.  (I didn't have to pay for the pills. There was an error on how they were prescribed so my insurance denied the claim. The doctor supplied a free sample. I expect next time they will be covered by my insurance).  Because the pills are taken within 24 hours of chemotherapy, they're covered by Part B of Medicare -- not our prescription coverage.  Same for all the chemotherapy treatments.

I slept well last night. I wake every two hours to go to the bathroom and drink 12 oz. of warm tea or milk. I find that if I can continue to keep fluids going in me, I feel much better.  As Gilda Radner said, "If it isn't one thing it's another"...bloody nose, itchy bottom...nothing major just little challenges.  I hope to get my Blog updated today (I say that everyday).  At least my head/brain is feeling closer to normal and not racing.  For a few days I felt like I had a major case of ADHD--constantly distracted and couldn't sit still.

All in all, I'm feeling quite good.  Today's challenge again will be to get food in me every couple of hours...I'm continuing to lose weight--down to one pound more than when we married--which was my lowest weight since probably 6th or 7th grade.  My Dad was right when he  said, "When you get older, you have to keep about 5-10 pounds in reserve in case you have a medical challenge." Heed his advice.   Thanks for caring and remembering me in your prayers.  hugs, Joey

Day 5:  Friday, January 21, 2011, Evening:

How great to hear from you.  I'm doing really, really well.  I started my chemo on Monday...it's late Friday evening. Tonight I feel just fine, few aches and pains--not bad for being 69.

I had one night without any sleep from side effects of med but last night slept well. I'm off all meds now except for Aleve or Motrin.  I hope to get my blog up-to-date tomorrow. 

Keep up the prayers, good wishes and thoughts--I know that's what is carrying me at this time. It takes a village for me, too.

Thanks for your great offer.  You're the second one today who offered a place in Estero/Naples.  Our friends in Clearwater offered, too.  I know it's a bit cool there today but not nearly as cold as it is here.  Today for the first time I mentioned that it would be nice to be somewhere warm cause it would be much easier to get out for a walk which I know would feel great to do. 

I'll see my doctor again on Tuesday to see where my white blood count is.  I had a shot of Neulasta (Teri's company) the day after chemo (Tuesday) to supercharge my bones to produce more white cells.  Next Tuesday I'll find out how effective it's been.  My doctor says that I'll pretty much follow a pattern I'm establishing this first session...so far, so great.  My blood count will determine how much I'll need to stay away from others to avoid infection which will determine how much a risk it will be for me to be around other people.  I'm hoping that the shot will keep me in the 'normal' range...   We'll see.     

Hope you're doing well.  I know you've had your challenges, too. I'm keeping you and all my friends/family in my prayers, too. We're all in this world together; we're really all more than that--we're connected--we're one.  I'm feeling the love and support that so many are sharing with me.  It's quite phenomenal.      hugs,  Joey

Day 4:  Thursday, January 20, 2011:

Evening: I saw my doctor this afternoon, she said I looked sleep deprived. I didn't feel tired but I knew I didn't get much sleep again last night. I feel like I have a different body attached to "me".  She said that next time we'll eliminate the Zofran (constipation/racey brain) and use compazine instead. I have the beginning of what could be mouth sores--she said the same thing friends recommended: 1teas baking sode and 1 teas salt in a bottle of water.  Swish after eating anything and gargle. Sounds easy and worth a try. 

Washed my hair today and patted it dry. No hot blow dryers, brush rollers, hair straighteners, etc. allowed. I like my new "do".  I knew my hair was wavy; actually I have some curls. It sure shortened my 'time to get ready'. Also, I'm thoroughly enjoying the new makeup and lotions that were given to me at a "Look Good...Feel Better" session I attended last week.  I highly recommend it to any friends/family with cancer.   http://www.lookgoodfeelbetter.org

Morning: My head is a bit buzzy, so hope I can make sense in this blog.  I'm doing quite well...no nausea, eating whatever I desire, no aches and pains as most said they'd experienced.  However, the anti-nausea medicine (Zofran) has kept my brain going at a high-rate of speed.  I'm tired but my brain won't let me sleep.  It's the weirdest feeling, maybe it's what it's like to get High or be ADHD.  

Thanks to a beautiful email card sent by my sister-in-law, Jeanne this morning; I've remembered that today is our 49th wedding anniversary.  Thanks Jeanne, the card is beautiful and touched my heart.

I'd written some notes to family that I've included below.  I've made changes to make them more understandable to you.  It seemed like the best way to capture what was happening with me.

Day 3:  Wednesday, January 19, 2011, Morning:

I'm doing exceptionally well for Day 3. I'm beginning to feel a little achy, certainly tolerable. My head is a bit spacy and loopy from the medicine I take for anti nausea--I'll tell more about that in my blog. I need to do some resting soon since I've been taking advantage of feeling good and getting things done all morning.  Later I'll do a blog entry. I thought Cathy would do one yesterday but she was busy with work (and tired from all she did on Monday with the cold caps).  She's added it to her Facebook and two of her good friends have friends starting treatments in a couple of weeks and are interested. She's helping them with info that we got from the company that she's re-written for us, to make it easier to follow...what can I say...she's been an incredible help with the cold caps.  There is NO way that I could have done them without her skills.  Not one hair on the pillow today!  We'll know before my next treatment that they worked.

Thanks for all your prayers and good thoughts.  I really do believe all of you are carrying me at this time.  Keep them coming...   Yes, absolutely, "it takes a village".  

Don's doing better, too.  Leading up to my first treatment was pretty taxing on him hearing so many things he didn't comprehend. The day of treatment (helping out with the labor-intensive cold caps the first time) was very stressful, also.  He's much better knowing that I'm not suffering.  I expect he was scared not wanting to see me in misery and not being able to do anything.

Getting through all the pills each day has taking some organizing. I made up a schedule on graph paper where I track the day/time I take each pill.  I think I have that down now.  Two pills I only had to take for three days at the beginning of each session at different times; I'm done with those today.  The rest will be easier to take now.

I thought I'd be so miserable today (from other's reports) that all I'd do was watch movies and sleep.  After I get cleaned up--I'm going for the movies!  ...and looking forward to watching.

Hope all of you are doing well.  I send joyful/prosperous/healing thoughts to all of you and keep you in my prayers, too. Keep warm where ever you are.    hugs, Josetta

Day 2:  Tuesday, January 18, 2011, Morning:

I'm doing well, had my first treatment yesterday. I have a doctor's appointment today for a Nulasta shot that will supercharge my bones to manufacture more white and red cells and platelets--getting me back in shape for another treatment three weeks from now.

I'm feeling a bit tired, not surprising.  Yesterday was hectic because I'm using Cold Caps to protect my hair.  The process is very labor intensive: changing hats every 30 minutes, preparing them (massaging them to the correct temp) making the switch and then folding and replacing the hat in the dry ice cooler. Cathy and Don were busy the whole time, I sat there...very different for me.  I'm ready for some peace and quiet. It's nap time when I finish this note.

Yes, I'm surprised I'm writing, too. Today I have a little headache and I get lots of hot flashes but since I'm usually always cold, they don't bother me.  I believe it's all the GOOD THOUGHTS coming my way--without a doubt!

Hope all of you are doing well.  Thanks for your prayers and good thoughts.  Have read all your comments.   Joey/Josetta

Day 1:  Monday, January 17, 2011, 11:45pm:  Chemo today

I'm feeling a little bit achy (especially around my neck and shoulders) and tired (falling asleep watching something on TV that I want to "see/hear" which I know Don would say isn't new for me).  However, I'm more in tune with listening to my body at this time.

Sometimes I feels like I still have the Cold Cap on (my head doesn't feel cold to the touch, just that same feeling of moving my head and having it feel cold).  My stomach is holding out.

I'll take my vitamins and calcium tonight; do the ritual of brushing teeth, baking soda/club soda, using my mouthpiece.  No combing hair or doing anything to it. It doesn't look that bad considered it was squashed down for 8 hours.

I keep getting tingling in my toes and fingers periodically--moving them seems to eliminate it.  That's why I didn't want to go to bed right away.  I've decided sleep would be a better choice for now.  I'll take water to my bedside along with some Vernors for moments that I wake and want to continue to drink fluids as highly recommended to me.

So far, so good.  I know that my biggest challenge will come after getting my Nulasta shot tomorrow. It's important to me to have the shot to boost my body to produce white infection-fighting cells.  I started out with a sore throat this morning and a little bit higher white blood count.  It was with me all day and now feels a little less.  I'm hoping by morning it will be gone. I felt like the sore throat was mostly caused from talking so much at Rita's 70th surprise birthday party yesterday.  It was a wonderful time for me because Rita was so surprised and thrilled. It was also wonderful for me to visit with many mutual friends who have been a part of my life for six decades.  I also know that I won't be participating in a group gathering most likely until my sessions are complete (six sessions with 3 week intervals).

I have to THANK Cathy for being exceptionally prepared and taking over today.  Very often that's a role that I take.  I couldn't have done the Cold Caps today and there was no need for me to do it--she was prepared, ready and carried out her plan.  There were so many things (she can tell you about it). I know she didn't get a break of more than ten minutes all day. I hope she sleeps well tonight.

I've added photos of Don and Cathy doing their job.  Click on the 'Photo' tab above to view.

All this labor-intensive endeavor is to save my hair.  Most who have used this process in recent years have had great success.  It's done on the day of treatment (one hour before, during and four hours afterwards).  It sure was an incredible distraction from the chemicals going in me.  During the treatments, I felt fine--uneventable--fantastic!  ...what I asked for

Thanks to Don, too.  As always, he did a great job of driving, carrying/moving the dry ice containers as well moving around the dry ice as the cases holding the hats were changed and prepped for their second use.  He did all the other 'checking out' of other things that were desired. Couldn't have done it without him.  The nurses, the office staff, Lytle pharmacy have all been working hard to get all my scripts, respond to the rejects and making it happen that I had all that I needed to start out.  They're continuing to work diligently to have what I need at my second session in three weeks.  It's wonderful to have this great team taking over for me...waiting on hold and acting on the next action necessary and finding incredible options.

A quick note:  I watched the interview conducted by Piers Morgan on CNN Monday night--interview of Oprah Winfrey.  I found it to be an incredible interview, although not sure Piers understoodd Oprah's powerful message behind what she believes and practices. I could completely understand what she was saying and have embraced that perspective on life.  I hope her interview opens much dialog. I'm ending now with more thoughts.  I'm tired and my head is a bit loopy, writing different words than I'm thinking.

Let me know what you thought of the interview if you saw it. You can use the comment link.

Thanks for all your prayers, good thoughts, caring, emails, and cards.

hugs and warmest regards,   Joey/Josetta    

I'm ready to begin treatments

First, I want to thank all of you for your prayers, caring words, healing thoughts, cards, emails, comments and inspiration. I'm feeling your support around me.  At first I saw it as a protective shield like the thick plastic/glass that they used to have in banks.  Gradually it's changed to a beautiful, rounded crystal-like thick shield that completely surrounds me from toes to head.  It provides protection from fear and anxiety.  It also surrounds me with a feeling of peacefulness and calm that comes from your love and concern. THANKS...words are inadequate to express my thanks to all of you.  You're a thousand times better than a pill or a potion..

I've decided to begin my treatments on Monday January 17.  My oncologist, Dr. Jasti, will be moving her practice to the new Karmanos Cancer Center in Rochester in a couple of weeks.  Her present office area where my first treatment would be given is crowded, tired and chaotic appearing.  I was having a difficult time feeling like it was a place of healing for me.  When I mentioned this, it was suggested that I have my first treatment done at their beautiful Clarkston office (Great Lakes Cancer Institute Building) and the remaining sessions done at the Karmanos Cancer Center.  So be it!

My visits to Dr. Folby and Dr. Flaherty (Karmanos-Detroit) provided me with valuable info to learn more about my situation and to understand the impact of a metastasis; yet at the same time realizing that there is no 'right' chemo treatment for an individual.

Dr. Flaherty is a researcher, teacher and practicing oncologist.  He believes it's necessary to use the biggest 'hammer' to avoid recurring cancer, no matter what the damage (long-term side effects). I would agree if my cancer had metastasized. My chemo is for preventive purposes in case I have one or some stray cancer cells in my body. Also, I could use the strongest most toxic chemicals and there's no guarantee that it would be the 'right' chemicals to eliminate my cancer cells (if I have any).  No one knows. It's a risk determined by statistics.

My analogy:  I see myself trying to mount a special sculpture to a wall.  It has a nail attached to the back.  I have many options:

• Carefully hold it and press it into a small hole I've made in the wall -- using no hammer/tool.  (Be the 50% of the statistics that use no therapy and have no cancer recurrence).  
• Use a padded hammer and carefully tap it until the nail goes into the wall . (Take an aromatase inhibitor (daily pill) for five years and be one the 76% who have no recurrence).  
• Use a huge mallet and pound the sculpture till the nail goes into the wall with the possibility of damaging the sculpture itself (take aggressive chemotherapy treatments and be one the 84% who have no recurrence.

I've decided to go with the aromatase inhibitors and chemotherapy (there's something inside of me that says that I need to know I've done what I can).  I've chosen a less aggressive chemo treatment, with less major side effects (heart damage).  I know that at anytime I can stop the treatments or change the treatments.  I'm comfortable with my decision and ready to start.

I'm so grateful that I called a halt to the original start date of January 3.  I had surgery on the 2nd to have my Medi-port 'installed'. I found out about the test results which indicated the need for chemotherapy on December 27...giving me a couple of days to make a decision and 'prepare' for this huge commitment.

In these two weeks I've learned invaluable information that's helped me to make my decision and prepare myself for my treatments.  I've decided to use Penguin Cold Caps to preserve my hair.  It's pretty much guaranteed that with the chemo I'll be taking, I'd lose all of my hair with the first treatment. Cold caps are a labor intensive process that's done an hour before, during and four hours after the treatment. Cathy's taken the lead role, learning how to do it. She's in charge of preparing and changing the ice caps. There's a link on the right if you want to learn more about it.  I've met and talked with several who have used it.  They've all been successful in keeping their hair. Michelle has been so gracious to loan me the necessary coolers, special thermometer and other 'tools' necessary to carry this out. More than that, she's been extremely helpful in giving me tips on how to use them. She's also been extremely helpful (as have other women) with sharing their techniques to avoid other side effects of the chemotherapy.  I'm feeling well prepared for this adventure...

I also attended a Look Good...Feel Better session that's put on by the American Cancer Society, the Cosmetic, Toiletry and Fragrance Association and the National Cosmetology Association.  It's like a make over for the spirit.  I met a couple of gals that were in the midst of their treatments.  If I'd met them at a luncheon, I'd never have known. They looked great; it was a real inspiration and hopeful time for me.  We were provided with a kit of cosmetics, skin products, etc. that we step-by-step applied.  It was fun, light and informative.  I love some of the new products that were given to me at no charge.  If you know of a woman  with cancer, find out where a session will be held near her and help to get her there.  1-800-395-LOOK  or http://www.lookgoodfeelbetter.org

Quite 'accidentally' (or maybe it was synchronistic) I ended up in the Wilson Cancer Resource Center in the Beaumont Medical Center across from Troy Beaumont Hospital. It's a goldmine of education, guidance and support for those with cancer--to help them through the maze: Integrative Medicine (body, mind and spirit), Naturopathic Medicine, programs and wonderful people.  No matter what hospital you're working with, find yourself an Oncology Nurse Navigator who can provide help as you choose your path. The phone number to Wilson Cancer Resource Center is: 248-964-3430. Anyone with cancer can make use of this wonderful source of help.  http://cancer.beaumonthospitals.com/troy-resource-center

Another source that was very helpful for me, is Swan for Life Cancer Foundation. It's a non-profit cancer support organization for those newly diagnosed with cancer, patients with recurrences, friends, family and survivors. Leah, their oncology social worker, was my first helper. She's outstanding. She quickly identified how she could help me cope with this turn of events and she did!

Rochester: 248-650-1090 and Clarkston: 248-620-9600   http://www.swanforlife.org

I've had help from my niece (Teri), my doctor, my family and friends. I thank you again and again.  If I haven't called on the many others who have volunteered -- you're not out of the woods, yet! 

As you can see/hear, I've been extremely busy getting myself (inside and out) ready for this adventure.  In some ways it's similar to what I did getting ready for my month in China, Morocco and other places I've visited.  I'm feeling like my preparations are all lined up.  I'm ready to go...

I'm scheduled for six treatments (every three weeks). I'll be taking a regime called TC (Taxotere/Cytoxan). Chemotherapy works by killing fast-growing cancer cells.  Unfortunately, chemo can't tell the difference between cancer cells and fast-growing healthy cells (blood-forming cells in bone marrow, hair follicles and cells in the mouth, digestive tract and reproductive system).  This puts me at risk of lowering my white blood cells which are the cells that fight infection.  I'll be getting a shot of Neulasta the day after each treatment to help my body produce more white cells. I've had prescriptions filled for many anti-nausea drugs--seems like the medical community has a good handle on preventing that awful feeling (according to those who have gone before me).  

Help me to visualize the chemicals flowing through my body, finding any/all cancer cells and washing them away forever.  

Keep me in your thoughts and prayers that these treatments will be uneventful, beneficial and fruitful. Also, I'd prefer that side effects be at a minimum!    love and hugs,  Josetta

It's coming together

I'm beginning to feel like my information search is coming to an end and that I'll be able to make a decision and be comfortable about it in a couple of days.  I met with my first oncologist on Thursday and with Don's oncologist at Karmanos/Detroit on Friday.  They each have different perspectives about my treatment and timing.  My Friday doctor made a very strong case for the need to 'do whatever possible' to eliminate the chance of the cancer recurring. He works with studies.  Everything about cancer is a statistic--not much is about me as an individual--my health, my lifestye, my diet, etc.

I've read that selecting the treatment is the most agonizing part of this entire process.  My survival hinges on making the right choices--and none of the doctors even know for sure what that would be. Once I make my decision, I plan to live more peacefully with ambiguity and uncertainty--as everyone healthy or sick must do. I'm putting myself in the 'healthy' category; I feel fine, have lots of energy and believe that the cancer was removed from my body.

I met with a social worker at my oncologist's office who was a huge help emotionally as well as providing complimentary medical resources to help reduce chemotherapy side effects--like acupuncture, massage, yoga. nutrition and visualization (which I'm particularly interested).  I happened upon the Oncology Nurse Navigator at Troy Beaumont, another wonderfully, supportive woman.

What's amazing is how so many of the people who have been very helpful to me have come into my life just when I needed them.  When I was feeling lost, drowning and frightened;  someone appeared to take my hand and lead me to shore.

I'm in the process of getting 'things' ready...similar to the feeling I had before each of my babies were born.  I'm almost there, ready to begin my chemotherapy.  It's the Contingency Planner in me...figure out what can go wrong, eliminate the chances of it happening and be prepared if it does.  It's what I was trained to do and really a part of me since I was a young child.

Now, the last step for me is to get my head ready.  I'm almost always the person who sees the glass half full. I also believe that what I put my attention on is what I'm drawn to; I'll put all the side effects aside and see the chemotherapy searching through my body for any stray cancer cells and eliminating them efficiently and completely. (I'm working on a couple visualizations involving water.)  I'll picture myself during this time as healthy and content.

Nothing has to happen immediately, this minute or right now.  It's okay to pause for a moment, take a deep breath, then go quietly inside and ask LIFE to lead me to my best outcome. The only thing I have to do is to get out of my own way.

OncotypeDX test results and chemotherapy

It's been a hectic, emotional week for me.

I got word from my oncologist on Tuesday, Dec. 28, that the results from my Oncotype DX test showed that I was at a high risk for a returning cancer (metastasis).  That means that I'll be starting chemotherapy treatments shortly.  I had surgery yesterday to implant a Medi-port. The purple port was placed near my collarbone and looks like a bump under my skin.  It runs into a large vein near my heart so that infused agents will spread quickly through my body.

I'm meeting with another oncologist on Thursday and Don's oncologist (Karmanos-Detroit) to determine the type of chemotherapy that I'll be receiving.  It looks like it will be a 3 to 6-month therapy.  I'm wanting to avoid Adriamycin because of it's horrific long-term side effects.

This has been a major surprise to me.  My original pathology report showed that I was low risk.  This newer test looked at 21 genetic markers (16 cancer genes, 5 control genes)  in the tumor tissue that was removed (not to be confused with genetic heredity factors) that show prognosis and prediction of recurring cancer.  The test is only done on hormone positive and node negative women.

So, I have many decisions and preparation before treatment begins probably next week. I need to cancel my classes I teach and functions that I lead with a few groups that I belong to.  Even if I feel well, I've been advised to stay away from groups of people because of my compromised immune system.  I was hoping I could drop in if it was a 'good day'. We'll see how my white counts turn out...I've been told that there is a repeatable pattern to the therapies.  I've been told I'll be having my chemo treatments every three weeks.

Remember, this is being done for prevention of recurring cancer.  I don't want to forget that they removed all of my cancer and found none in my lymph system--very hopeful report. It's still difficult for me to say that I'm grateful for this test...maybe ignorance would be bliss!  With this information, I knew I had to act even though it's a BIG step!  I've done lots of research and am feeling better about my decision.  After meeting with two oncologists this week, I know that I'll be able to embrace the therapy I choose.

Keep me in your prayers for uneventful therapy that is effective--with minimal side effects. I started this blog because it seemed like the best option to remain in communication with friends and family.  I'm having a very difficult time now responding to phone calls and emails.  Finding time is a real struggle.

This wasn't the adventure that I planned for the first half of 2011 -- but it's the one that I'm on.  I'll do my best to stay aware of all the good that comes from this journey.  When I'm having tough times, I'll know that it's only temporary.  I'm sure this Spring will hold more meaning for me than ever before.

Caution is not the same as fear, and observation is not the same as judgment.  An ounce of prevention is still worth of pound of cure.