CArleen update

[RandyW]

I know so many people have been worrried about Carleen, and thought you may want to see her update

Posted: Tue Oct 03, 2006 10:06 pm Post subject:

Hello all,

I'm here, I've been reading almost every day but just haven't had the strength or courage to write anything. I didn't want to post anything negative and bring people down or worry anyone, and I guess I haven't really felt anything too positive lately. I have been struggling, and it seems to get so much harder as time goes on. I just miss my Keith so much!! Life is just spinning out of control and I am so simply miserable. It's been a really hard couple of weeks here. I know I posted on Keith's birthday, but in addition last week was our wedding anniversary. It would have been 7 years. 9/25/1999.

God this just hurts so bad, it won't ever end. I had the greatest love I could ever have imagined and now without him I have less than nothing. And I think my love for him still grows every day, and it makes it all the more painful.

I just can't do this. People keep telling me I'm strong. I'm not strong, I'm breaking. I'm tired of people telling me I'm strong because it is more like a justification for them to treat me like nothing has happened and like I'm ok I can handle it. I'm not ok, I can't handle this. I want someone to hold me in their lap, hug me and make it go away even if for just a few minutes. I want someone to take care of me for just one moment so I don't have to be strong for that moment for once. I don't want to be strong anymore; I just too tired and too hurt.

Sorry to cry and burden anyone. I guess this is why I haven't posted lately.

I love you all, and I have been reading and praying for each and everyone here. Please know how much I truly care.

_________________

Husband Age 31 Dx 3/19/03 Small Cell LC Second Opinion Mayo Clinic Dx 4/9/03 - Atypical Carcinoma (A.K.A. poorly differentiated neuroendocrine carcinoma with small cell features) w/ Mets to Lymph Nodes and Liver

4/19/03 Cisplatin & Irinetecan

6/19 Scan results show no change

6/23 one round of Cisplatin and VP 16 then changed to Carboplatin and VP-16.

7/16 started 10 rounds Radiation

8/19 Test Results showed slight shrinkage to all areas YEAH!!! Continuing on with Carboplatin and VP-16

10/14 Scan results show no change. Oncologist wants to stop treatment. Where do we go from here?

11/14 Liver Biopsy confirmed Atypical Carcinoid, Liver now looks clean. Hired new Doctor and are looking into Alternative Treatments.

12/23 CT scan shows cancer to be relatively stable. One lymph node grew, but rest stayed the same. Still waiting to determine next step.

1/7 Started Sandostatin injections 3X daily

1/26 Visited LSU Dr. Anthony in New Orleans about clinical Trial of Octreotide Accepted, but wants us to try low dose chemo first.

2/7 Changed to Sandostatin once a month time released injection

4/6 CT scan shows that primary tumor between lungs grew from 2.2 CM to 3.3 CM. Starting Radiation to primary tumor 4/15 to 6/15. Expecting two rounds of low dose chemo to follow.

7/23 two week hospital stay for pancreatitis showed new lesions in pancreas and liver.

8/31 Started new Trial in New Orleans - Indium III.

9/14 MRI of the brain shows 13 lesions in the brain and meninges. Starting 15 rounds WBR 9/27/04

11/5/04 Started 2 rounds of Cytoxin Doxirubicin and Vichristin

3/18/05 CT scan shows no change; Keith to get a break from Chemo

5/6/05 CT Scan shows that cancer progressing; greater than 25% growth in all areas

5/25/05 Visited a Dr. O'Dirisio at University of Iowa about Ytrium Trial. Keith did not qualify but Starting Sandostatin again to try and boost receptors to qualify in future.

starting Taxotere 6/10/05

9/13/05 Scans show stable disease, no growth or shrinkage. Starting 6 more weeks of Taxotere.

10/27/05 CT & MRI taken; MRI Results show Brain Stable CT Scan shows slight increase to Liver lesions, but overall stable.

12/15/05 CT Scans show return of large tumor in lymph node under his collarbone at the curve of his neck plus advancement of disease in the liver from 4 small lesions to more than can be counted mid sized tumors. Starting Alimta on 12/30/05 HAPPY NEW YEAR 12/23/5 MRI shows size growth on several brain lesions, new tumor to Thyriod gland, new tumor to 6th Vertibrae. Tomotherapy on the neck started 2/13/06.

Scan 2/14/06 shows rapid progression of lesions in liver. Alimta stopped and starting back on Irinetecan (AKA CPT-11) on 2/17/06

4/6/06 scans show growth on all tumor sites. Nothing suggested for tx, as onc wants to check around and get other opinions.

4/19/06 Spent the day in ER because of severe side pain. CT shows Significant growth from scan taken just 3 weeks earlier plus new pleural effusion. Pain most likely from many Liver mets growing and pushing on liver casing. Starting trial of Temodar and Thalidomide 5/24/06

5/29/06 Spent 2 days in hospital with pain in left side, swelling in right arm. CT shows significant tumor growth. Lymph nodes in Mediastanim wrapped around Superior Vena Cava vein compressing vein, lymph node in neck compressing same vein. Swelling cause of SVCS. Pleural Effusion greatly increased in right lung. Pain in side possibly from increase in pancreas tumor, increase in liver tumors and size, compression to vein feeding spleen and enlarge spleen plus constipation. Temodar Thalidomide stopped. No more treatment.

6/2/06 Thoreocentisis drained 1+ liters of fluid from right lung. Stints not put into SVC because of location and thrombosis surrounding the catheter from port blocking vein would require removal of port.

6/7/06 Experienced swelling in the groin and phallus; cause could not be determined.

6/26/06 Hospitalized for severe pain in shoulder. Stayed for 2 nights to get pain meds to control pain.

Released home 6/28/06 passed away surrounded by family and friends on 6/29/06.

The light of my life has been extinguished and I live forever in darkness. But my love lives eternally now in the glorious radiance of God.

I will Love you FOREVER & ALWAYS!!!!

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[ztweb]

Thank you. I too heard from Carleen. I am more relieved to know that she is OK, hurting, but OK. May we each send her our prayers of support and love.

Jen

[teresag]

Dearest Carleen,

I hope you read this thread because I know there are many, many people who want to express their support.

You are so right. Be weak, cry, mourn for the most wonderful husband you could have ever wanted. You have the right. You do not have to be strong for anyone here; we will listen.

The time since Keith's passing is much, much too short for you to "get over it," as if you ever will. I am so sorry that those important anniversaries reminded you of the deep and painful grief of losing Keith. But not surprised; many things will remind you of Keith and make you sad. Then, slowly, the reminders will make you happy as you remember your sweet husband. But that takes time.

You do not have to rush grief here. Many, many people understand.

With best wishes, Teresa

[tnmynatt]

Carleen,

I have really benefited from the Young Widows Bulletin Board (ywbb.org) in addition to being here. They ALL get it. There is a lot of support like here. But, it is specific to us widows/widowers. Take care. Prayers continuing for you, Carleen.

[sharyn]

Carleen, just know that I think of you often, and pray for you to somehow see past the clouds... Love, Sharon

[carolhg]

You must take the time that you need to grieve for the loss of loving husband. Be kind to yourself. Be good to yourself.

Prayers

[annjael]

((((((((((((Carleen))))))))))))) I know you probably wont believe this, but it does get better. You are still way too fresh in this, to see that there could possibly be any light, at the end of this dark tunnel. But it will be there. The profound grief you are feeling is soooo normal, and from my experience, you have to go through it, to get to the better days. It is a tough process, but you will make it. Carleen, your Keith will always be in your heart, no matter how many years pass by. As you begin to grow away from the profound grief, you will begin to recall lighter moments of your marriage, and yes, even things that were annoying,,,but you will be able to laugh at those memories. You will also recall the wonderful warm fuzzy moments, and they will make you smile with the certainty that you and Keith, for however long you had it, truly had something very special. So please know that people really do care, and understand where you are in this process. Take however long "Carleen" needs to grieve. Know that we really are here to listen and be here for you.

Blessings in your journey,

Annjael