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My DIL is home - again

Nov 20, 2009 - 6 comments
Tags:

OVCA

,

Mayo



On May 14 my DIL was dianosed w/OVCA. We were all so very shocked, stunned, and every other word you can think of that means 'we can't believe it.'  The first two weeks were terrible as we walked around in a haze and w/she and my son trying to figure out what to do. First, they were referred to Dr. T. in Austin. They liked him very much, but felt the pressure to go to MDA.

Meanwhile, DIL was getting acupuncture and utilizing the services of a PhD in nutrition and a hypnotherapist. Seeking cures everywhere, they even visited a faith healer who they immediately determined was a fraud. They went to a man who claimed he could cure cancer by massage. But after the the couple visited him, my son said his home looked like something out of "Silence of the Lambs." So, no go there.

After visiting MDA several times, and after what son & DIL considered a brush-off (she'd had 4 chemos; doc said there would be two more, period, and deemed her inoperable), Dr. T., who felt that DIL was operable, recommended they go to the Mayo Clinic.

The Mayo got them in right away and believed she was operable, but first, because it looked as if her liver was diseased, the docs went in and did a liver resection, where they moved some big vein or artery - my medical vocabulary is challenged - from the right side of her liver to the left. The liver increased in size by 20-30% which was the goal.

After more chemos, she went in for the debulking. Doctors removed ovaries, fallopian tubes, cervix, uterus, and a grapefruit sized mass from her diaphragm. Seeing what the doctors sensed as trouble, they told her they would schedule a 'look-see' for her lungs at a later date. She has a scar from her sternum to her pelvic bone. And of course, she began more chemos.

She lost all of her hair, bought two wigs, and quickly decided they were hot. She prefers to wear a scarf and hoop earrings and looks quite exotic.

After effects from the chemo put her down & out for about 4-5 days, and each chemo seems to be worse than the last. Dr. T. tells her the chemo is cumulative, and that each session will probably be worse then the last.

Son and DIL went back to The Mayo 11/11, and the doctors admitted her on 11/12. The thoracic surgeon went in and did was is called a pleurectomy as well as removing several malignant lymph nodes. The surgeon had told her that the pain from this surgery would be worse than the debulking, and she was in a state of disbelief - until after the surgery. She asked if the surgeon was really going to break her ribs. He said no, he'd 'cut' them.....  She has suffered a great deal of pain and hates to take painkillers since they make her nauseous and constipated. But she hurts badly, so she takes them. She has an incision from her right lower shoulder blade down to and wrapping around her rib cage.

DIL came home 11/18. What a fighter she is. But now, she feels sad, depressed, tired, and probably a bit overcome. When I spoke w/her she sounded very much on the edge of tears.  On 11/14, it has been 6 months. The docs say four more chemos. And she's calling Dr. T. to see if she can start on Monday the 23rd.

Their children are young. The daughter turned 8 last week, and the son will be 6 in January.

I admit to feeling sad and depressed myself. After reading what each of you ladies are going through or have gone through, I just don'e see a really bright future, and that makes me so, so sad.

Meanwhile, her CaringBridge site has almost 40,000 hits. The community organized and put on a fund-raiser. The Mayo doesn't contract w/their insurance company, so they'll be responsible for 25% of the cost.... The fund-raiser was quite a success and raised almost six figures.

People ask us all, "How are you doing?" I don't know what to say. Inside, we're doing terrible. Outside, we just keep doing what we ought to do, putting one foot in front of the other. Going to work, watching the kids play soccer - wait - now it's basketball.

Son & DIL are blessed because they have sooooo many loving friends and family. Folks even set up a calendar on the CaringBridge site, and people sign up to bring them dinner and fruits and vegetables almost daily. We are a faithful family, pray unceasingly, and hope God blesses us with his divine Mercy.

Meanwhile, we keep on keeping on.

DIL has very successful surgery!

Sep 04, 2009 - 12 comments
Tags:

OVCA

,

surgery



My DIL left Tuesday with her mother and father heading to The Mayo Clinic in Rochester, MN. The family was met by DIL's sister from NJ. My son stayed until Wednesday noon in order to get in half a day's work. My granddaughter, 7, had a 'meltdown' Tuesday evening according to my son. He said she cried and cried and sobbed out loud, asking questions like, "Why does my Mommy have cancer?" "Why does Mommy have to be gone so long?" "Is Mommy going to get well?" And saying, "I miss Mommy so much. When will she come home?" At  7, she is aware that something very bad is happening. They have told the children that our bodies are made up of cells, good and bad, and that Mommy has some bad cells that they're trying to kill and get out of her body. My 5-year-old grandson remains happy go lucky. He knows Mommy's sick, but he doesn't seem to realize that something is really, really wrong.

My son met up with the family on Wednesday night. My DIL had had tests & scans Wednesday, and surgery for Thursday was a go. At last.

I am writing verbatim what my son texted to me yesterday every two hours.

"They just took her back. They expect to be doing the surgery around 9 AM. Pray hard at 9 AM. She's in good spirits. Mayo is top notch. We love y'll, more later."

"OK...the nurse communicator just let us know that the liver surgeon has just finished. No apparent complications, praise God. Dr. Cliby will now starts his part...expected 4-6 hours. We expect a detailed report from the liver surgeon in the next hour or so. So far, so good. Keep it up people, pray like crazy!"

"OK! All is still going well with no unexpected complications...praise God! The thoracic surgeon that was on standby will not be needed. They think around 3 PM all will be finished. We expect to talk with the docs and get details at this time. She will not wake up from anesthesia until 6 PM. Keep up the prayer as we are nearing the end of surgery. Love y'all."

"OK, here it goes. We just met with the sugeon, mostly good news. They were shocked to find that the liver was not filled with cancer at all. All tumors were benign...praise God! They felt like they got all disease, no complications, no colostomie, no lung issues. It was heavily concentrated in the diaphragm and this was all removed. Microscopic stuff will remain. The only weird stuff was the pleura behind her lung. The area looks roughed up...post chemo looking stuff. They sugest 2 round of chemo staarting in 3 weeks and then inserting a scope to look around. If it's bad, surgery. If not, 2 more chemos and then possibly an end. Love y'all and thanks for continued prayers."

"She woke up for a minute or so, long enough to learn that she kicked some cancer butt. She's absolutely beautiful. She hurts badly and will for days.No ICU, no liver cancer, successful surgery. This is as good as this scenario can be, praise God! She wanted a smooch and me to rub her head. Now she's snoring. Snoring has never sounded so great. Hopefully she will do this all night. Love y'all."

And today, "She just walked from the bed to the door... she's hot and tough! What a combination!"

Meanwhile, I have talked w/him via phone several times. He is just SOOO impressed w/Mayo. He says people couldn't be nicer, there's always a "real person" answering the phone, and that the Mayo folks respond to questions and requests immediately. The doctors work as a team and really seem to care. He says they are absolutely confident that they made the right decision going to Mayo, I guess even if it means paying additional cash since United doesn't contract w/Mayo.

Son stayed in DIL's room all night. Said she woke up about 4 and asked what was going, how was the surgery. Though she'd been told twice, she didn't remember. Son told her all the good news, and especially the good news about no liver in the cancer even though the docs did several biopsies and expressed their own shock at not finding cancer. DIL teared up and said, "Thank you, God." And went back to sleep.

Just got another text. "Same stuff, nothing too new. She is snoozing right next to me. She's walked a little this morning and will walk a little more in a few hours. It wasn't as bad as we thought it might be. We are still `encouraged by the surgery and the great care we continue to receive."

So, we are very thrilled with the outcome so far. We believe the Lord has richly blessed us, and we continue to pray for a good recovery with as little pain as possible.

If it's not one thing, it's another............

Sep 01, 2009 - 3 comments
Tags:

OVCA

,

Health Insurance Companies



So, this week my son and DIL discovered that their health plan, United, does not subcontract w/The Mayo. This means that their co-pays will now be 25%. Can you imagine such a thing? I don't know how much everything costs, but I know it's beaucoups. Probably hundreds of thousands of dollars. As my son said yesterday, "I make a lot of money, and yet I can't afford to pay for medical care for my wife? This is insane." And I agree w/him. He asked the Mayo docs if they would let DIL have various tests run in Rochester at hospitals/clinics who do accept United, and of course, Mayo said they'd feel better about performing them at The Mayo..... They did say they would write an appeal to United making the plea that the Mayo is the only hospital in the US who can perform certain kinds of surgery my DIL needs, re diaphram surgery.

I know insurance companies well enough to know that they will do anything not to pay, so I expect this bout will go back and forth, back and forth, before any resolution is reached, and then I doubt the resolution will be satisfactory.

How can it be that the US Health system is in such a mess? I support the 'government plan' in the healch care debate not occurring. I guarantee that if health insurance companies had to honestly compete, they would find a way to compete and costs would go down. It is truly an outrage that insurance companies - not government bureaucrats - have the authority to say who does and who does not deserve treatment.

I've read on this site of at least 2 women who don't have health insurance, go to the ER, and are told they need to go to a gyn/onc. That they don't do pelvic exams in ER. I supose it means if you don't have insurance and/or you can't afford to pay, you just grin & bear it and die. I'm gelling you, it's an outrage that our country treats ill people in such a way.

Anxiety, stress as we wait

Aug 28, 2009 - 2 comments
Tags:

Anxiety

,

Ovarian Cancer



DIL had her 4th chemo Monday 8/10. She suffered nausea and dizziness 3-4 days later, but the joint pain didn't come until 4-5 days later. She has not bounced back as quickly as she usually does, and in general, has felt lousy. Fatigue, tiredness, frustration. She told me on Monday that her white blood cells were low. My son said a couple of days ago, "We just got word that DIL's blood work was not bad but not good either. she has bounced back quickly from the other chemos but this one has left her weaker/nauseous for longer. She has had a good few days but is just now feeling better. Her CA-125 is also slightly up to 52. We are so accustomed to the number being cut in half that it shocker her a litle. One week from now we head to May for testing/surgery. Pray that all goes well."

Son told me yesterday that if her blood counts don't improve, they won't do surgery next week. DIL will have another round of blood work on Monday before (we hope) heading to MN. We are hoping that the blood work #s meet whatever criteria is is supposed to meet.

Meanwhile, their 5-year old son asked, "Mommy, are you ever going to get well?"

School has begun, so the 5-year old started kindergarden and the 7-year old started 2nd grade.

I'm so sorry the family has to suffer this, and I don't understand why. In my "Big Book of Things I Don't Understand," I have already written that we'll never know the answer to the 'whys' in our lifetime. But it hurts me so, and it hurts the many who love them.

I am praying that they can and will do the surgery and that they don't find anything they're not expecting to find. That may be a foolish prayer, since it seems to me that the unexpected is what realistically we should expect.

Meanwhile, my Dr. has increased dosages for my anti-depressants, my stomach is crazy with diahrrea that seems almost uncontrollable, and mostly all I want to do is sleep. I went to sleep last night about 6 waking to see that it was 7:30 & I thought it was the next day but wasn't ready to get up! Sure enough, it was still yesterday. So I got up & put on my PJs and went to bed and slept all night. I've now done that twice this week. I have another call in to the doc to see if there's anything I should be doing/worrying about. And to think and know - My son & DIL are the ones with the real problems and it's not about me.

I'll be keeping the children next week. I'm praying I'll have the right answer to their questions and that I can comfort them when they miss their Mom & Dad who they adore.

I'm just venting here. Sometimes writing makes me feel better. I'm just so damn frustrated and angrey about this ******* OVCA.