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Old 04-14-2008, 11:24 AM   #1
Believe51
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Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
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Arrow ~MichelleH~Update From 4/14/08

I tried to post this update Friday but to no avail, I kept losing my posts. Michelle is touched by our prayers, positive thoughts, support and of course our garden endeavors. I told you her heart would smile outloud. I printed all the posts and made a nice care package for her and the little ones, after all, they are going through a hard time too!!

She was very fatigued when I spoke last to her and could not remember the names of the two new drugs she has incooperated into her regime. I quickly changed the subject so she would not feel pressured to remember. They are COLON CANCER drugs and her doctor and the Mayo Clinic have seen some great results using this combo. The next time I speak with her husband I will get the names for you all.

Her voice sounds stronger than it has in the recent conversations we have shared. Her liver must be feeling a bit better or else they would not start this regime, but that is just my opinion. The laspe in chemo was the LIVER being so ill.

This family is grande and the amount of support we receive here from you all is in itself, a true blessing. Michelle sends her thanks and sprinkles it with smiles. Keep her in heart and mind as she fights this monster.

I also told her to 'just do her best' and to let the doctors and us do the rest. Hope this update finds you all well and happy>>Love>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 04-14-2008, 03:24 PM   #2
Mary Anne in TX
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Thanks so very much Marie! I know that prayers will ease the ordeal for Michelle. I can just see her someday visiting some of "her flower gardens" and giggling with joy at the size and wonder of them. Maybe she'll come again to see them when she's old and gray and needs a cane to make the trip. Old, tired, and happy!!!!
thanks again Marie and cheers and blessings to Michelle! ma
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 04-14-2008, 05:01 PM   #3
Bill
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Thanks for the update, Marie. You are a true friend. Please let Michelle and her family know they are in my thoughts and prayers.
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Old 04-14-2008, 05:09 PM   #4
Joan M
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Marie,

Thanks for the update on Michelle. I't gladdens my heart to hear that she has some recourse in the colon cancer drugs.

There is always hope. I'm often reminded and encouraged by the story of the "running rabbi" which I read about in a booklet I picked up at church shortly after my diagnosis. The booklet was about facing a serious illness.

Hanging on to Hope Through Serious Illness

Hirshel Jaffe
2005

In 1978, I bounded across the finish line of the New York City Marathon wearing a T-shirt proclaiming me “The Running Rabbi.” I was just as tireless in my calling as a rabbi in Newburgh, New York. I had marched for civil rights in the 60’s, rallied to free Soviet Jews, and in 1980 visited the hostages held in Iran. I’d never been sick in my life. I felt indestructible. That was then.

Just six years later my illusion was shattered as I lay dying of hairy-cell leukemia. Despite three surgeries and chemotherapy, my blood counts were plummeting, the leukemia had almost destroyed my immune system, and my body was ravaged from weeks of high fevers. My last hope was the experimental drug interferon.

The interferon saved my life. Today my bone marrow shows virtually no traces of cancer. I’m back with my flock, fulfilling the new task God has given me — counseling those who face adversity.

Helping Through Crisis

For over 20 years as a rabbi, before my illness, I had helped others through crisis. I was supposed to have all the answers. Yet when I got sick, I discovered I didn’t have them. I felt confused, frightened, and desperate. Who would comfort me?

My experience with serious illness has made me want to share with you what I’ve learned.

• Cheer yourself on. Ultimately you must learn to comfort yourself. No matter how many people are around during the day, reality can be very hard to face in the loneliness of the night.

Keep up your self-esteem. Be kind to yourself. Hug yourself if you can’t find anybody to hug you. Don’t feel cursed if you have a disease with a foul name. Don’t think of yourself as worthless or worth less because you’ve been stricken. Don’t be passive about your medical treatment or afraid to tell your doctors your needs.

Don’t feel guilty if you’re too sick to do things. You have value simply because you are, even if you cannot be “productive” in the way to which you were accustomed. Learn to cherish your very existence.

I really believe my fighting spirit meant the difference between life and death for me. My nurses told me that once when I was delirious, I pounded on the bed rails yelling, “Come on, Hirshel!” I was cheering myself on like my wife and daughters cheered for me when I ran the marathon.

Conversely, however, don’t make things impossible by believing your attitude is everything. You can’t control everything. Just some things.

• Set goals for yourself. No matter how small, any goal helps you feel a sense of achievement. Watch your daughters ice-skate, go out with friends, put pictures in an album.

Writing a book about my illness with my friends, the Rudins, gave me something to live for. I would wearily clutch the manuscript and show it to my nurses. It took a lot out of me to write even a few words, but I know that completing Why Me? Why Anyone? helped keep me alive.

• Life Projects. Keep up interest in your life projects. If you are able to return to work in some capacity, do it. Even if you have just five good minutes a day, use that time and build on it. If physical limitations prevent you from doing tasks in your usual way, try to devise new ways to do them. Reorganize, delegate, ration your energy sensibly.

Doing, learning, re-learning will help you to feel alive and regain self-esteem. When my physicians noticed how depressed I was in the hospital, they said, “Be a rabbi — go and counsel other patients.” That made me feel important again. My friends fighting cancer and other diseases tell me the same thing: Helping others cope is the one good thing they can do, the one good thing they feel qualified to do, and the one good thing they find real fulfillment in doing.

• Keep your sense of humor. Learn to laugh at yourself and enjoy life. One morning when the doctors made their rounds, I said to them, “I think these antibiotics are doing something to me! Something strange is happening to my body!” They burst into laughter. I was wearing the Frankenstein mask my wife, Judi, bought me on Halloween.

• Be thankful for each day and greet it joyously. Since my brush with death, every moment is special to me. Live life to the fullest, even if it might be for just a short period of time. How long you live is not as important as what you do with your time, or what you are in that time.

Today I feel I know what’s really important in my life. I’m learning to say “no” to people — I don’t want to fritter away my life letting other people tell me how to live. For me, being with the ones I love is the most important thing. And I make a point of telling these people often how I feel about them “while I still have the chance.”

• Accept the comfort offered by friends and family. The strong support of all who loved me and prayed for me kept me going through my darkest hours. Don’t be afraid to let others know how vulnerable you are. It’s not a sign of weakness to allow them to do what they can to make things easier for you.

The Song of Songs says, “Set me as a seal upon thy heart, for love is stronger than death.” This we believe now more than ever.

•Turn to your faith and religious tradition. Since my illness, I’ve become more open to possibilities about God. Of course, I feel sheepish that I had to get sick before I took this more seriously. I guess we don’t think we need God until we run into trouble.

My concept of God is now much different. I’ve learned how vulnerable we are, how our lives are in God’s hands. When I was so ill, I discovered a personal God, and I began to ask God to help me and hold me and see me through.

Your friends, if you are lucky, will stand by you and companion you. But God, even if you are “unlucky,” as writer Walter Wangerin has put it, will surround you.

• Search for meaning from your adversity. We can find meaning and hope even in our darkest days. I didn’t ask for this painful experience. But I can choose my response to it. I can choose to grow from it and shape it into a positive force in my life.

By facing death I learned how to live. My illness taught me the real meaning of being a rabbi. It’s not who can be the best scholar; it’s who can touch people, who can comfort them. I used to be too “hyper,” the running rabbi, breezing by people. Now I take time to talk and listen more deeply. I know what it’s like to hurt. I understand people’s fears, and can now begin to reassure them out of my own struggle and confusion and fear. “God wants heart” is a saying in the Talmud that I now truly understand.

The True Race

Will I run another marathon? Sure, I want to, but it doesn’t matter to me how long or how fast I go. Now I’m running the true race — trying to be a good husband and father, and a companion for those who walk the path of serious illness.

I hope that as you walk this path, you prove a good friend to yourself and allow yourself to lean on the willing arms of family and friends and caregivers. I hope you let God carry you over the rough spots, and stay with you, too.

And I hope your journey to the edge of life helps you learn secrets of precious love, secrets of precious peace.
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 04-14-2008, 08:42 PM   #5
chrisy
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Marie, you are a true gift to all of us. Thanks for the update on Michelle. She is in my thoughts daily.

Joan, that was a remarkable story, thanks for posting that as well.
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 04-14-2008, 11:27 PM   #6
harrie
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Thank you Marie. I have been thinking of Michelle. Please give her a gentle hug for me and tell her I said "God bless you Princess"......
Maryanne
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 04-16-2008, 03:26 PM   #7
Mary Anne in TX
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Michel'le, today your flowers are dancing in the sunlight on a fantastic day here on the south texas coast! As I look at them, so pretty and sweet, I think of you and how we miss your input each week! We're lovin' and believin' in you! ma
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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