1

(13 replies, posted in Grief Management)

Jilly,
I understand how you feel. I lost my wife, Nancy, almost 2 years ago. We were both 49 and had been married for 27 years. I am constantly torn between wanting to move on and start dating, but feeling as though I am still married and being disloyal to Nancy. I have checked out dating websites, but I can not bring myself to contact anyone. I was lucky enough to have a great wife for 27 years, maybe that should be enough. My days are busy with work, family and friends, but when I'm alone at night or driving by myself or on Mother's Day or just about any other minute, I really miss her. I guess I'm just waiting for my heart to tell me it's ok to move on and that hasn't happened yet. Like you, I don't want to grow old alone. But right now, I'm probably not ready to be a couple with someone new. You're probably not either if you have doubts. Give yourself some more time and enjoy all the moments you can, because as everyone on this site knows, Life can throw you a curveball. Maybe we just need someone or something to tell us it's okay to move on with our life.

Steve

I apperciate all your kind words. Thank you, I needed them. I just kinda got shook up after I had to go to the hospital for 4 days due to an infection and it brought back all the agonizing memories of all the time I spent with Nancy in  there. While my kids were there by side, I realized that Nancy was not there and that I will not have the support she provided. That's a scary, lonely realization. I know all of us who have lost some one, especially a spouse, are trying to deal with the same thing. Someday I will find my path, but right now it sure is a lonely journey.

Thanks,
Steve

It's been awhile since I've posted. I lost my wife, Nancy (49), on 9-28-10 after being diagnosed with stage 4 on 4-1-10.

I’m just sitting here listening to some country music. It should be illegal to listen to when you’re already depressed. I am just getting over having an infection and realized how much I miss my private nurse (Nancy was an RN). You really find out who your friends are when you need a dressing change in the area of my infection. I had to get a bunch of strangers (home health nurses) to accomplish one of life’s more humiliating and painful experiences.

I read that writing helps you get through the grieving process.  I thought I was getting over losing Nancy but as I sit her trying to write through a river of tears, I stand corrected. Nancy and I had our life all planned, but even after a year and half, I have no idea where I’m headed or how to get there. I’ve always been a leader, but right now, I’m clueless. I wish I had someone to talk to about this, but I don't so I turned to people who have gone through what I am going through. I sometimes talk to people as though Nancy is still here and I have a hard time with my status. I'm not single and I'm not married, but I really hate being a widower. I know I'm kinda all over the place with this post, but I just needed to vent.
Thanks,
Steve St.Germain

4

(47 replies, posted in General Discussion)

Lainy,
Nancy had CC with mets to to the lungs. She said she had pain that felt like a band tightening around her abdomen and back. It came on at varying degrees but it made lying on her back or stomach impossible. Nancy was only on hospice for 3 weeks but they continually upped her dose of morophine to address her increased pain. It is difficult to accept as she became less coherent with each dosage increase, but I take solace that we tried to make her as comfortable as possible. I wish you and Teddy the best.

Steve St.Germain

Husband of Nancy St.Germain
Diagnosed on April 1, 2010, passed away on September 28, 2010.

Nancy Jo St.Germain born December 19,1960 passed away on September 28, 2010. She was first diagnosed on April 1st 2010. She never fully accepted her prognosis. She did her best to fight this disease but it was very difficult as she could not eat or drink due to the nausea and vommiting caused by the cancer and chemo. The last three weeks Nancy was with San Diego Hospice and they did an outstanding job. This website was a godsend for Nancy & I. We drew on the information and compassion provided by all the members of this website and for this our family is truly apprecative. Nancy left us all with a broken heart that hopefully time will heal.
I Miss My Friend, I Miss My Wife

Thank you all for making a difficult journey a litlle easier.

Steve & Nancy St.Germain
(49)       (49)

6

(25 replies, posted in General Discussion)

Lainy,
My mom passed away about 6 years ago under home hospice care and her nuse deemed her imminent 5 different times. Each time hospice sent caretakers out around the clock until she was out of danger, then they would go back to weekly visits. Nancy, has a diifferent hospice, San Diego Hospice which she just started. They have an offsite hospice that Nancy was sent to for a week where they adjusted her pain meds and anti nausea medicine which run continuous 24 hours for up to 4 days. The goal is to keep her at home, but they said if things become too difficult, they could take her back to their hospice facility which is very nice and comfortable. If you haven't checked out their hospice facility, you should. Not all Hospices are equal. We got recommedations from our home health nurse and our case manager.

Good Luck
Steve & Nancy St.Germain
  (49)       (49)

7

(9 replies, posted in General Discussion)

Lainy,
Nancy just started hospice last week and her Hospice doctor prescribed Demerol for her Rigors which Nancy gets frequently. We haven't used it yet. Nancy seems to get Rigors at about 10 to 12 am followed by a high fever 102 to 103 that lasts unitil about 10 pm.

Steve & Nancy St.Germain
   (49)     (49)

8

(10 replies, posted in Introductions!)

Gary,
My wife Nancy was diagnosed with CC stage IV with mets to the lungs on April 1st 2010 at Scripps Encinitas. Nancy is 49 and we have 2 kids, a 21 year old daughter and a 24 year old son. We live in San Marcos, CA. I searched the internet just like you and talked to my sister in law (a doctor) and we found Dr. Lenz at USC (a county hospital) for a second opinion. Dr. Lenz refered us to Dr. Genyk at USC to see if surgery was an option, unfortunately it is not. However, Dr. Lenz has seen many patients with CC and has an excellent reputation and he highly recommends Dr. Genyk.

Steve & Nancy St.Germain
  (49)     (49)

9

(28 replies, posted in Introductions!)

The last month has been very hectic. We found out that the Gemsar & Oxiplatin did not work. Nancy's scan showed the cancer has spread to her stomach lining. At the same time, Dr. Genyk was chercking into the possibility of surgery, but after additional CT scans, he he told us last week that was not an option.
Nancy started her first round of Chemo using Cisplatin, Xeloda and one other drug ( I Forgot the name, starts with an E) last week. She takes Cisplatin & (E) infusion on day 1 and Xeloda 14 days orally. Nancy has not been able to keep food down and now liquids. Since Nancy got out of the hospital in June she has had to go to Dr. McClays office a couple of times per week for IV liquids to keep hydrated. In mid July Dr. McClay ordered IV liquids to be given at home daily. On Thursday 8-5-10 they changed the liquids to TPN due to Nancy not being able to eat or drink and she could not get out of bed. My daughter Stephanie and I were given 2 lessons on administering TPN. In a few weeks we may apply to be LVN's.
Nancy vomits 8 to 10 times a day. We have tried Emend, Compazine, Zofran, Sancuso Patch, Marinol and a few others but nothing works. We are discussing if Nancy should continue with Chemo or not. I don't know if Nancy can survive the next 8 weeks of Chemo.

Steve & Nancy St.Germain
(49)       (49)

10

(13 replies, posted in Adverse Reactions & Side Effects)

Nancy tried the Marinol for a week with no noticable benefits, so her doctor doubled the dose which helped with pain but she still had nausea and no appetite so she stopped using Marinol.

Steve & Nancy St.Germain
(49)       (49)

11

(13 replies, posted in Adverse Reactions & Side Effects)

Sunderwo,

My wife Nancy, has been having a difficult time with nausea and appetite, so her doctor prescribed Marinol, unfortunately this is not readily available so our pharmacy had to order it. She should get it by Friday 7-16-10. I'll post results after a few days. My sister in law is also battling cancer and she used Marinol with very good results.

Steve & Nancy St.Germain
(49)       (49)

Marion,
We have been taking Nancy to get rehydrated 2 to 3 times per week at Dr. McClay's office. We have an advanced directive (Five Wishes) so I can talk to Dr. McClay. I did contact him and he is prescribing Marinol to see if that will work. Nancy has numerous anti nausea medications but they don't work. When I asked if Nancy was at the end stage of this disease, Dr. McClay  said that if this next round of Chemo is not successfull, it may be time to stop. I don't know how long a person can go without eating. Nancy can only sit up for a short time and needs a wheel chair if she has to walk more than 100 feet. She sleeps most of the time. We have never or will ever withhold food or liquids from Nancy. But from what I have read, when the patient gets close to the end, they do not want food or water as their bodies shut down and most families have a difficult time with this. I guess I'm just trying to figure out what stage Nancy's in. What the doctors won't tell you, the members of this site help fill in some the blanks.
Regarding Dr. Lenz, he refered us to Dr. Genyk at USC for surgery. Both Dr. Lenz and Dr. Genyk are not convinced that the tumors in Nancy's lungs are malignant. They said that metastasis to the lungs is unusual for CC. Dr. Genyk said he needs more CT Scans to make a determination if it resectable but cautioned us that even if there was no metastasis to the lungs, it would be a very difficult surgery.

Steve & Nancy
(49)       (49)

Nancy had her Pet/CT Scan last Tuesday 6-6-10 to see how she was reacting to the Chemo (Gemsar/Oloxitan). We had an apointment with Dr. McClay her Oncologist on Thursday 6-8 to discuss the results, however when she went to Dr. McClay's office on Wednesday 6-7 to recieve her next round of Chemo she was told that the results of the Pet/CT Scan showed the tumor in her bile duct had extended into the stomach lining and the tumors in her lungs had increased in size from 2.8 cm to 3.5 cm. Her Chemo was canceled and Dr. McClay wants to try Avastin next. He has to get approval from Cigna first.  I don't know if Nancy can handle another round of Chemo. Since this started in April, Nancy has virtually no appetite and struggles keep hydrated. If she does eat or drink it usually comes back up. We take her to her Oncologist's office to get rehydrated 2 to 3 times per week. I thought it was due to the Chemo, however she hasn't had Chemo for two and half weeks and she still doesn't get out of bed, eat or hardly drink. Is Nancy at the end stage of this disease? I know she can not continue to not eat and survive. I have read a few books that say you should not force patients to eat or drink at the end stage as it results in prolonged suffering.

Steve & Nancy St.Germain
(49)        (49)

14

(6 replies, posted in Insurance)

Mark & Chris,
Thanks for the information on the new Heathcare Reform Laws. That's one less thing to have to worry about.

Steve

15

(28 replies, posted in Introductions!)

We are still waiting to see the Surgeon, Dr. Genyk at USC. I have a question about the surgery. From the posts I've read on this site, it sounds like surgery for a Klatskin's Tumor is more difficult than a Whipple Procedure. Is this true and if so why? Nancy has a Klatskin's Tumor.

Steve & Nancy

16

(28 replies, posted in Introductions!)

When Nancy was diagnosed with cancer, the word cancer never came up when we talked with her doctors. We heard words like malignant, metastisize, stage 4, leasions, tumors, cholangiocarcinoma, words Nancy was familiar with, but not me. The doctors never even said it was life threatening. I had to go online to find out those words meanings and the poor outcomes of patients with CC stage 4. I searched Mayo, Sloan & Kettering, DJ Anderson, Stanford, UCLA, USC, UCSD, UCSF, American Cancer Society and my Oncoligist's own web site which tell you to get your prognosis from your doctor. I know some people do not want to know their prognosis, but I do and I thought Nancy did to. We discussed it prior to going to see Dr. Lenz, but when it came time to ask, she did't. How can you make treatment decisions if you are not fully informed? But if Nancy doesn't want to know, we will not ask. The ultimate decisions for her treatment will be her's. The ironic part is prior to this, it was Nancy who grilled me about what the doctor said, what medicines were prescribed, etc. Now I'm in her shoes and their tough to fill.

I'd also like to thank you all for your input, I've learned alot on this website.

Steve & Nancy

17

(28 replies, posted in Introductions!)

We met with Dr. Lenz at USC on Thursday 6-10-10. Dr. Lenz is not convinced that Nancy's tumor is non recectable. He is not convinced the masses in her lungs are cancerous so he encourgaed us to consult with a surgeon, Dr. Yuri Genyk at USC. He said if Dr. Genyk says it is non rescectable then it is non recectable. We are currently trying to get an appointment with Dr. Genyk. As Dr. Lenz said, "surgery is the difference between life and death". Nancy is getting her 4th round of Chemo (Gemsar & Oxiplatin) on Wednesday 6-23 & 6-24. After that they will do a Pet Scan to see if the Chemo is working.
Dr. Lenz agreed with Dr. Mc Clay's treatment of Gemsar & Oxiplatin. Dr. Lenz said that Avastin does not work with this type of Cancer, Dr. Mc Clay had mentioned Avastin as an alternate if this treatment didn't work. As our consultation was coming to an end, I asked Dr. Lenz what was the prognosis for Nancy and he said he would not answer that question unless Nancy asked. I was a little ticked off by that statement but I knew that is what we had been waiting to hear from a Doctor that specialises in CC, but the silence was deafening. Nancy did not ask the question. My sister-in-law and mother-in-law had driven Nancy to USC from our house in San Marcos and I met them there, so I drove home alone. The drive was three hours and the whole drive all I could think was why didn't she ask the question. It slowly dawned on me that some people don't want to know. I thought that we were on the same page but I was wrong. Nancy is a RN so she is familiar with Cancer but this is rare and I could not get her to look at the information I had found on this site, Mayo Clinic, MD Anderson, Stanford, etc. I could not get her to fill out an Advanced Directive and they ask you each time you go to the hospital (4 times). I am confused and don't know what to do. Should I stay away from the consultations with the Doctors so I don't ask questions Nancy does not want hear?

Steve & Nancy

18

(6 replies, posted in Insurance)

Marion,
I just reviewed our 2009 policy and there was no maximum limit, however the 2010 policy put a maximum of one million dollars. This is probably something new that the insurance companies came up with to cut costs, however it will greatly impact most people on this site if it is the new standard.

Steve & Nancy St.Germain

19

(6 replies, posted in Insurance)

My wife Nancy, was recently diagnosed with unresctable Cholangiocarcinoma Stage 4 on April 1, 2010 and she has been in the hospital 4 times for infections. The average stay is about 10 days. I'm just getting the bills for these hospital stays and they average about
$ 70,000.00 per stay. That does not include Chemo Therapy.  Our insurance carrier is Cigna and the policy has a one million dollar limit. At this rate we will run out insurance in a few months. With this disease, won't she be uninsurable? Has anyone else maxed out their benifits? Are there any other options?

Steve & Nancy St.Germain

20

(28 replies, posted in Introductions!)

Nancy and I thank you all for your support. By the way, my name is Steve. We do have some questions. I have read other posts that refer to CA-19 Tumor Markers. What is normal and what is extreme? Do these markers tell you how the cancer is progressing? We have not been informed what Nancy's CA-19 is.

How does this disease progress? What are the signs that we need to be aware of that Nancy is in danger of losing this battle. When we asked Dr. Mc Clay what the prognosis is, he would only say that he trys to achieve a cure with every patient. We appreciate his optimism, but we also would like to know how severe her cancer is and what we can expect. Nancy has had difficulty eating and keeping foods and liquids down since this started.

We have a second opinion scheduled with Dr. Lentz at USC next month. Is there any other doctors in the San Diego area that are experinced in Chalangiocarcinoma?

Thanks,
Steve & Nancy St.Germain

21

(28 replies, posted in Introductions!)

My wife, Nancy and I took a trip to Las Vegas to celebrate our 27th aniversary on 3-26-10. We were having a great time, however on Sunday I noticed her eyes were yellow and her skin was jaundiced. She said she felt okay, but by Monday she was really yellow. We drove from Las Vegas straight to the emergency room at Scripps Encinitas (San Diego area). The emergency room doctors were hoping it was stones. On Tuesday they did a CT scan and Ultra Sound. The results were not promising, they suspected Cancer. On Wednesday they tried unsuccessfully to place a stent to relive the bile. They also took a biopsy of the tumor. On Thursday, 4-1-10 we were informed that Nancy had unresectable Cholanigiocarcinoma Stage 4 metastisized to her lungs and lymph nodes. On Friday they went back in and successfuly placed a metal stent which allowed her bile to drain properly. Her bellirubin had reached 26 by this point. During our trip to Las Vegas we had discussed where we wanted to retire, when our kids would get married, etc. I still can't believe how fast our lives have changed in less than a week. Nancy and I are both 49. She was in the hospital for 10 days. She was out for 4 days before having to go back to the hospital with a blood infection. That stay lasted 9 days. She has had 1 round of Chemo (Gemsar & Oxiplatin) followed by another stay in the hospital for an infection. Her white cell blood count reached 45,000. That stay lasted 8 days. Until April 1st, I had never heard of Cholangiocarcinoma, I wish I never had. Nancy's Oncologist is Dr. Mc Clay with Pacific Oncology. Has anyone used him for this type of cancer?