Update on Jeff & Becky's journey

Hey everyone. I haven't posted in quite a while - but I have been checking in periodically to see how everyone's doing. We were busy enjoying our new Marine getting to be home for a whole month. He's now at Marine combat training, and it was harder saying goodbye this time than the last.

Jeff has his first PSA test this Friday, and we will see the Dr. with the results on the 16th. This has been hanging over our heads since they found cancer in one area of the margin. Jeff's recovery has gone pretty well, although he still has random times of soreness inside, but it's gone pretty quickly. He's pad free now, which he's thrilled about. No luck so far on the erections. The first time he took a full dose of viagra there was a bit of reaction but with the worst headache he'd had in his life. With the cialis the headache isn't so bad, but he has it 2 days in a row.

It is a bit discouraging - I know it usually takes a while, and statistically we're in a good place - 45, no problems before surgery, both nerve bundles spared. I guess it's the knowledge that you could always be in the percentage where things don't go back to normal. There's definitely some response with stimulation, especially if he's standing up, but very little laying down. Jeff jokes about the Dr. wiring him up wrong inside. He's usually pretty up beat, but every so often it really hits him and it breaks my heart. At one point he started to kind of withdraw and we ended up having a big fight. It was good for us to clear the air and talk through some fears. Jeff didn't want to burden me with his struggles because I'm dealing with the issues with my dad's cancer, but that made me feel more alone in dealing with Jeff's cancer. But we're good now.

I leave this Friday for 10 days to be with my dad in CA. He is not doing well, and my sister and I are going to fly out and give my brother a break, and hopefully get some clear answers from the Dr. When I see what my dad is going through I know we have so much to be thankful for. We have all the time in the world to heal, and he doesn't and can't. I would appreciate your prayers and wishes as we go. I get back the night before we get Jeff's test results, so the next couple of weeks are going to be kind of intense. I find I don't get anxious, I get tired. And weepy! I feel like such a baby sometimes! But the Lord keeps encouraging us along the way. The Sunday before Christmas during church we were singing about God’s power and Him holding the universe in place, and I started crying because it occurred to me that if I really believe He can do that, I should be able to trust Him with some tiny nerves inside of my husband. Then the sermon was about God being a “Wonderful Counselor, Mighty God, Everlasting Father, and Prince of Peace.” When our Pastor asked if we needed to see some might from God this Christmas, and be filled with His peace, I started crying more. Basically I was a mess the whole service! It didn’t help that it was the morning after our big fight.

Last night in the middle of writing this my son called from Camp Geiger – one of the Marines in his platoon snuck a cell phone into his equipment, so here they were out in the boonies calling home. I needed to hear his voice – another TOTALLY unexpected blessing, just when I needed it.

I hope this new year is full of unexpected blessings for everyone on this site –

Becky

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husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA in 1/2007

Hi Becky & Jeff,

It is good to hear from you again, and that Jeff is recovering well. My prayers will be with you, and your dad this week as you fly out to California. Good luck to Jeff and you on the 16th, and our thoughts and prayers will also be with your brave son.

Glen

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Diagnosed at age 60

Thanks Tanya. My dad has a very rare cancer called adenoid cystic carcinoma. It does not travel through the lymph system, but along nerve routes, invading the coverings around the nerves as it goes. It usually begins in the major or minor salivary glands of the head and neck, and basically invades the nerves and tissue of that area. When it metastisisees it usually does so in the lungs and liver. My dad's has spread to those areas, along with his spine and hip. Those areas aren't causing him any problem at all, fortunately. People can live quite a while with it in the lungs and liver. It is very unpredictable - sometimes a person can be cancer free for 15 years and then it is found again in the lungs. It can go dormant, or come back with a vengance, and that's the case with my dad. He had a spot on the roof of his mouth 3 years ago, and had surgery and radiation. Unfortunately, he didn't see a specialist for this type of cancer, and they didn't treat it aggressively enough. He should have had a body scan 3 years ago and didn't. This summer his face started to go numb and his lymph node swelled up. A biopsy on the roof of his mouth showed cancer, and a scan of his head showed it had taken over the right side of his face - jaw, hard palate, sinus, septum. Initially they were going to perform surgery and radiation and remove it all, requiring a year long recovery. But when they did a body scan they found the rest. They determined they would shrink the cancer in his face and hip since those were the only areas bothering him. Of course they had to go through all the approvals and mappings and more tests, and by the time they got to his face it was Nov., and it had grown rapidly, causing him to lose his vision in his right eye, invading the nerves and causing extreme swelling and pain. The cyberknife radiation they used did shrink it considerably, for about 3 weeks. Now it looks worse than before, although the tumor itself isn't as painful as it was. Now he's receiving external beam radiation twice a day for 30 days, and the pain is from the burning and blistering it is doing to the inside of his mouth and throat. He cannot swallow pain pills and is on liquid vicadin. They finally gave him IV therapy when my brother called the Dr. because he's dropped to 115 lbs. Supposedly they are going to give him a feeding tube. These are things we asked for in Nov. My dad isn't very proactive, and of course now in his condition I don't think he could be if he wanted to. My brother is doing all he can, but his schedule limits him. My dad's girlfriend is very helpful but not very forceful.

So my younger sister and I are headed out to see if we can be the squeeky wheel that will be heard. It's very hard being all of the way across the country (I'm in NC, he's in CA and my sis is in PA). We would've gone right away, but we found out about my husband's cancer 3 days after we found out about my dad's, and initially we really thought they were going to be able to get my dad's condition under control.

One thing I've learned from this situation is that you have to get as much info as possible, ask every imaginable question, and be an advocate for your own health. We've alreay told the Dr. that if Jeff's PSA is still high we want every possible scan/imaging test we can have before we start radiation. We won't be taken by surprise again, if we can help it. This site has really helped me to know what kinds of things I should be asking the Dr. The first few visits I didn't say much. Once I found this site I went in with a page of questions I'd written down!.

I see by your signature that you are still deciding what course of action you will take. You should be able to get a lot of insight from the folks on this site. They are wonderful.

THanks for your prayers, hopefully I will have good news to report on both my dad and Jeff -

becky

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husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA in 1/2007

wow, becky! I am so sorry.

Makes me very *grateful* that we *only* have prostate cancer. I am counting our blessings.

We have our final consultation with our robotic guy tomorrow and will make final decision.

Again, have a safe trip and i hope you can make some difference in your dad's outcome.

Take care of yourself and update us when you get back or have time.

Tanya

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Signficant Other diagnosed: 10/30/06 (age 63)
PSA: 3.7 (up from 3.4 prior year)
Gleason: 3+3
Biopsy: 1/10 positive, 5% cancerous, right apex.

Thanks Tanya & Jim. I don't know how my dad is doing it - I can't get out of bed when I hava a headache with a sinus infection. He has surprised even the Dr.s with his strength.

I will get to spend a few days at my sister's in PA with my 2 little nephews before I leave, and a day on the return trip. They're 3 & 4 and more like grandkids than nephews. I'm really looking forward to that. I will also get to see my mom and grandma and brother and his family in CA, and it's been about 2 years since I've seen them, so that will be nice too.

In Feb. the ladies on our church staff are going to NY city for 3 days to see a Broadway show - so I can pamper myself a little bit then! And the day after Jeff's results we get to see my son Caleb, very briefly, before he heads off to Pensacola for more training. So there are many things to look forward to.

Tanya, I hope your meeting goes well. Just bring a list of all your questions and you'll be set!

Thanks again for your prayers & encouragement -

becky

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husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA in 1/2007

Hey Becky, hang in there, Jeff is on the right track. With the Lord all things work together for good. All of Jeff's numbers look great. We will be praying for you, I served in the Marine's during vietnam, we will be praying for Jeff.