New caregiver seeking support

[Earmansgirl]

Hello all. My name is Jenny and my husband was diagnosed on October 21, 2009 with stage III with mets to the lymph nodes and lungs. Tumor is 5cm, HCG was at 67K, LDH 1374, AFP 529. Still learning what all that means. Definitely not an easy process.

Because his lungs looked like Chicago lake effect snow in January, they've started chemotherapy (BEP 4X) and will be performing a R/O on the left testicle on December 23, 2009 - halfway through chemo. They don't believe he would survive the surgery if they did the R/O today. After seeing the CT scan, I have to agree with them. It's not pretty in there. "Too numerous to count" was how they put it. What a nice description for clusterfuk, isn't it?

So I want to eventually get to the point where I can offer support, and to obviously ask for support, but right now I'm just really angry. I want to scream. I want to punch something. I want to strangle cancers frickin' neck. Cancer has stolen so much from us already that if I let it take one more thing from us, it won't be pretty. Got news today that my husbands contract for work will not be extended past February so the likelihood he'll be able to find a job that lets him be off for one week a month is pretty slim. The job he's working for now is willing to work with him, but only until his contract is up. Apparenlty as much as he's "highly regarded" there - he's not highly regarded enough. Bunch of BS if you ask me. I just don't know what we're going to do. His life is more important than anything to me - but I feel as if I'm letting him down because I can't make everything work out the way I think it should. Very frustrating feeling to be strong and weak all at the same time.

So we're probably gonna be around here for a long time and wanted to intoduce ourselves. I don't think Eric is ready to post just yet but I hope he will eventually reach out and ask for support too. I know posting here will help me get through this. When life as you know it will never be the same, it's a great asset to have people in your life who know what you're going through.

Thanks in advance,

Jenny

[Scott]

Wow, Jenny, the cancer's enough to deal with, without the employment situation on top of it. We'll all be here for support.

If you haven't already, I'd suggest contacting LIVESTRONG SurvivorCare to see what resources they can connect you with to help.

[Cricketer]

Hi Jenny

Just wanted to welcome you (and Eric) to the site. There are a lot of good people here from all over the world. Feel free to vent, shout, scream etc whenever you need to. I'm sorry about the work situation. I hope something does come up soon.

Best Wishes

Mike

[Aegean]

Hey Jenny and Eric,

Thank you for reaching out and posting. Don't worry about the venting, that is partially why we exist. Has your husbands team been in contact with Dr. Einhorn? It sounds like you may benefit from his guidance.

Keep us updated.

[TheTippingPoint]

Hi Jenny,

Most importantly, get your husband through chemo. Bottom line: Chemo destroys testicular cancer. Keep that in mind no matter what comes.

After that, caregiving is absolutely one of the hardest things I have ever done, and I can't imagine it with a little one, so don't worry if you can't do it all perfectly. Point blank: at the rough parts, it stinks. You want to help, but there's not a lot you can do except wait for chemo to work (I used to make trips to Walgreens just to buy *something* to try to make Greg feel better...).

Still, please please know you aren't alone. Many of us here have been through this, and we're here for you. Ask anything, and people can help. There's a lot of love on this board and just as much knowledge.

We're here for you. You can do this.

-Mary

[ryder]

Oh Jenny, I am so sorry, my husbands lungs looked like a clusterfuk too. I could not believe the xray when I saw it the first time. Hang in there, its hard, it sucks, it makes you so mad, sad, depressed but you will find strength to get through this for you and your husband, it just happens, you just find it. Please ask me any questions, I may not know a whole lot about cancer, but I do know a whole lot about being a caregiver. Take care.

Dawn Ann

[Elliott]

Jenny,

You have come to a great place to get support and to gather information. As everyone else has said we are or have been where you are at. I understand the anger, my husbands cancer returned when we thought we were done. I also understand the "contract being up" my husbands was up in May. To look at it half full it has been a godsend because he would not have been able to devote all the time to getting better if he had been worrying about getting back to work. If you need to talk we are all here. My husband is also stageIII so we are only alittle ahead of where you are. Im in Houston where are you getting treatment?

[Gerri]

Hi Jenny

Thank you for posting. Its tough to be a caregiver but you don't have to do it alone. This forum is a great place to help each other out.

Prior to becoming a caregiver, I used to work for a medical school, researching the cost of informal caregiving. I know the "theory" behind caregiving and how tough it can be, emotionally, psychologically and financially. I guess its ironic that I am now a full-time caregiver, "applying" what I have learnt. I have since realised that this journey needs to be shared. Caregivers need support because you can't give what you don't have.

Shortly after the diagnosis was made public, my colleagues and friends offered me tremendous amounts of support. A colleague who also had a young person's cancer before, offered me this piece of advice - Laughter is the best medicine and the cancer journey is surprisingly sprinkled with many moments of humour. If you look hard enough, you'll find it.

I hope you have a great weekend ahead!

[Earmansgirl]

Thank you all so very much. I'm up early again today. Last day of first round BEP in a couple hours. He did so well last week on day 9 that I hope for the same results today. Not looking forward to starting over for five days on the 16th, but I know it's a necessary evil. He's eating so well right now and I fear the nausea, etc that made him unable to eat last time. He's so slender as it is (145 pounds @ 6'3"). Lets just say he gets skeletal really quick. At least he's ABLE to eat. It's been months since he could hold anything down.

The job situation seriously sucks. Not necessarily from a money perspective but from a distraction perspective. Eric is so smart. He works in computers and just loves what he does. It just breaks my heart he won't have something to go and do everyday. Just sit around and wait for his cancer to die. Yuck. I'm going to try to find something at night so we can supplement some income (currently a stay at home mom). I don't mind burning light at both ends right now. I'll be tired, but I've done tired before. It's just the bad days where I wonder if cancer doesn't end up killing Eric (which it will not), it'll end up taking me in the process.

The only comfort I have found to be an absolute is you can come back from nothing - but you can't come back if you're not around. I don't know what the future holds right now, but I'll take destitution, a cardboard box for my family, and a trash can to eat out of if it means we save Eric's life. As long as we've got each other, that's all we need. Cause I'd rather live in a cardboard box with him, then anywhere else without him.

[Pattytricia]

Dear Jenny,

I am so sorry for what you are going through. I have had those same feelings.
My husband was laid off from his job of 24 years 1 1/2 years ago. He just got a job at Target stocking shelves.

It was a difficult time, because just after he was laid off, our 29 year old son was diagnosed with poor risk Test. Cancer. Had to quit his job to do surgeries and chemo and had no other resources since he was, at that time working through an employment agency. He is living with us, since he is not working yet. I have to look after my 80 year old mother and uncle, so I just have a part time weekend job of 10 hours.

I tell you all this just to assure you that - ---
We made it through and you will too!. The people here will help you through this. They are a true Blessing and help in time of need.

There are days you don't think you can do it, but just please reach out to those who understand.

You are not alone.

Take care

[shesnoangel]

Hey Jenny,

It sucks you have to go through this. Believe me, we all know and have been/are in the same shoes you are in. My boyfriend is now 5 months into his treatment, and I find myself STILL mad and pissed off. It feels so unfair. I try to curb the "Why us?" because it really is pointless.

But like Gerri said, there is humour in it. And although some days it will be hard to find, you have to seek it. It's amazing how a good laugh will lighten your spirits and relieve your stress.

Just remember that you aren't alone. We're all here for you and along with continuing to love and care for your husband, you'll get through this.

[dadmo]

Jenny:
I love the attitude. Just make sure you're able to stay focused while being po'ed. The work situation stinks but he'll find work. Is his insurance covering it now? When his job ends make sure you pick up COBRA, as long as he's covered he won't have to woory about having a pre-existing condition.

[Les' Mom]

Dear Sweet Jenny,

I have been thinking about what to say to you. I am so sorry you are going though this. I understand the fear pain you are fearing. Of course mine was different because it was my son. We are here to support and love you. You should start to save everything now... test results, copies of CAT scans and such. You may need it if you contact another doctor for their advice.

You need to take care of yourself too. As a caregiver, it is easy to forget about what you need. There are probably going to be times that your husband takes his fears out on you. I found that it was easier for Les to be mad at me that others or the cancer.

You have found a family here. We will listen to your fears, your joys, your questions.

Love,
Pam

[starjayroman]

Jenny,
You sound like a very strong, smart lady. I am sorry you and your loved ones have to go through this life change. You have found a great place to get support. I wish I had found this place at the begining of our journey with cancer. I know how hard it is too do everything yourself and have to take care of everything yourself. My husband was diagnosed in June of 08 with stage IIIB, and has gone through chemo 4*BEP, RPLND, and has side effects from the chemo to this day, he has been on survellance since FEB 09 and it has come back so we are starting the treatment journey again. We have an 11-year old son, who says he wishes the cancer hadn't come back. He wishes that the cancer never came into our lives. (well, I think we all do that, everyone in this forum). Be prepared, having copies of everything that is done is very important. I know more about this cancer then Jay does because he doesn't want to know about it. I am his secretary, he has problems sometimes with remembering everything.

Jay applied for Social Security disability and he was approved immediately, I was surprised when they didn't deny him at first because you hear how difficult it is to get SSD and SSI. It is certainly an option for your family and will help out. Jay couldn't work when he went through chemo and the surgery. We made it somehow the first year on just my income but I did have to file bankruptcy. Just take it day by day. The people in this forum are valuable beyond anything they even understand. I often think that as bad as anything gets there are always those who have gone through worse.
Hope this wasn't too long,
Crystal

[cjjones]

I am so sorry you have to travel on this journey. Please vent, ask questions and share your story with us.
Remember, Lance Armstrong had some of the worst chances and he is now a survivor! If you get a chance, you should really read his book - It's Not About the Bike. It is a good book to read while my hubby was doing his treatment.
My prayers are with you and your husband. Stay strong and keep believing.

[Earmansgirl]

Thank you all. It's been a quiet couple days. Gotta love a moment of down time when you can grab it. I even made a decent dinner tonight, and some banana bread for tomorrow, which felt like normal. What a blessing to feel normal for 5 minutes.

Emotionally I'm very strong but I have days where I don't even believe I'm here and/or wonder how the heck I got here in the first place. I break the news to people that Eric has cancer and inside my head I'm treating it like a common cold that will clear up in 24 months. I don't know if it's a coping mechanism I've created (or denial) - but because I truly believe TC is curable, even stage III like Eric's, I don't let TC cancer get me down. It's stolen enough from me already. So screw cancer - I won't let it win and make me depressed. Well, that's not entirely accurate. I have my moments. But I think it's either the newness of cancer, or the fact that I refuse to let it win, that keeps me strong. I really don't know. I'd rather be this way than sitting in my closet crying my eyes out though. I'm definitely more of a scrapper and feel stronger this way.

Only thing bothering me, or solidifying the cancer I guess, is Eric is losing his hair. Not clumps, but multiple strands on his collar, run your fingers through it and some comes out, etc. He's not ready for me to trim it down quite yet. I hope he lets me get to that point before our daughter goes to play with him and clumps come out during play (does that even happen or is it Hollywood's version of chemo?).

Tomorrow we're hopefully moving treatment over to a private oncology clinic within UT Southwestern. Dr. Yull Arriaga treated us in the hospital and I'm hoping we can move treatment from the hospital to his private clinic so Eric can get away from the hospital and sick people (secondary infections scare the living crap out of me!). He works very closely with Dr. Ganesh Raj (urologist) so I trust Eric will receive very good treatment with them. One question I have though is, should I wait until they perform the orchiectomy before seeking Dr. Einhorn's help? We don't have a full pathology report yet so would he even be able to help? Also, what information would he need to get his opinion? I've read what a Godsend Dr. Einhorn is to TC so I'd love to get his feedback. Everything I've read indicates they're treating Eric's TC like they should but I'm terrified of a screw-up somewhere. No one gets the opportunity to drop balls in my court if you get my drift. I don't think anyone will but I want to watch his treatment like a hawk and need to know what to look for. I think I have a good idea but any feedback you can offer would be greatly appreciated!

Thanks in advance!

[cjjones]

I am glad to hear you are staying so strong, this will help you get through this roller coaster of a journey. Having moments are good too, it helps relieve some of that worry that bluids up inside of you. I did the same, telling people like it was no big deal, I guess cause we know that Cancer will not destroy our family. We push through it, what else can your really do beside do what you need to do. I find myself now trying to deal with it all after he is now all clear. Delay reaction I guess.
Dr. Einhorn is awesome! I sent him emails just to make sure that my hubby's doctor was doing the right thing, Either he will respond or one of his assistants will. I was surprise how quick I received an email back. It might make you feel better just sending him what is going on with your hubby, he may have some advice. They are the experts.
Stay strong!

[DMBwife]

Hi Jenny,
You have a great attitude to handle this crap! I just wanted to share our journey... Because of a brother in law who has been fighting pancreatic cancer for years, we knew to get an expert involved immediately. Our oncologist suggested we get Dr. Einhorn involved for a second opinion if we wanted one. My husband was diagnosed Stage IIIC with mets in the abdomen, lungs and liver. His lungs also looked like a snow storm, it was extremely scary. However, they did not delay getting the testicle removed.. Something you may want to consider asking about as well. As chemo does not get into the testicle they were worried that it would continue to spit out cancer cells even after chemo. Anyway, my husband met with Dr. Einhorn after his first round of chemo and from then on our oncologist consulted with him through the whole process. We were in direct contact with Dr. Einhorn as well, as he is extremely easy to get in touch with through email. This made the entire thing so much easier for us to handle as we had direct access to the number one testicular oncologist in the world. Don't feel bad about getting a second opinion like this. Testicular cancer is so rare, not many oncologists are very familiar with it. Our local oncologist even assured us that he had seen it many times before as he worked on an army base, but he still did a few things that Dr. Einhorn corrected.. Also, since my husband seemed to be more resistant to chemo than most men, we were able to get directly to Indiana for high dose chemo without much work since they already had all my husbands records.
Anyway, keep kicking ass, this isn't easy, but you will get through it!
Erin

[Smartie]

Hi Jenny. Sorry I'm coming late to your thread.

To answer your question about hair loss - it does come out in clumps. One day it's as solid as ever, the next you can pull a huge handful out without any effort. I'd really advise shaving it off as soon as possible - even though it might be a big psychological step to do so, it's better to take control and lose it on your own terms.

Keep on keeping on, and hang on to those precious moments of normality,

[Another Mom]

I am so sorry to hear about your husband. Like Pam, my experience with this disease is with my son. It's heartbreaking to see someone you love go through cancer but he will get through it. You have a good attitude and that will help him. I would also suggest contacting Dr. Einhorn. He's wonderful about getting back with people and his expertise is unbeatable. Keep us posted and remember we're all here for you.

Cheryl

[Earmansgirl]

You guys are so wonderful!

Met with Dr. Arriaga this week and I was SO HAPPY when he said first that he planned on contacting Dr. Einhorn to discuss this case with him (so now I know I don't have a doctor that has self esteem issues that will get in the way of Eric's recovery - YAY). I was testing to see if he'd say something first. I also have plans of contacting Dr. Einhorn as well today via e-mail.

Finally convinced Eric to shave his head and he looks as handsome as can be! Our daughter had a hard time accepting it but she said yesterday she likes it now and has even started hanging pretty bows from his ears instead. LOL!

Looks like he has 13 days worth of treatment out of the next 20 working days so I'm going to file for social security disability. We'll see if he gets it but I can't see why not. Jeez. If he isn't disabled (from medical treatments alone) I don't know what is! Plus a more stable income would be very beneficial over the long haul IMO. I'm also looking for overnight work and just stumbled on a couple really decent looking full time jobs overnight at a resort near DFW airport. Please say a prayer that I get it! All in all, though - life is great!

Hope everyone is having a fabulous week! Stay strong!

[Kat]

Hey Jenny---
Just stumbled across your posts today. We're in Texas, too. Patrick had an LRPLND at Methodist in San Antonio with Dr. Harmon from Urology San Antonio. We hunted around ALOT to find someone to do the surgery laparoscopically, and we were really glad we did. He was only in the hospital from Tuesday to Thursday. I was NOT terribly pleased with Methodist hospital in San Antonio, but his doctors were great. He did his chemo through Texas Oncology in Austin, and we've been pretty happy with them, too, and they have a statewide clinic. Also, don't ever forget MD Anderson! I was told by another cancer survivor that I work with that, being a Texas resident, if you can't pay your bills, you just tell them you can't pay it, and they write them off. MD Anderson can't refuse treatment to a patient who is a Texas resident. Something to think about if you get into an insurance situation. If there's anything I can do to help you find a Texas resource, let me know!
--Kat

[Kat]

Jenny---- I forgot to mention DITTO to all of your comments about screaming and ranting and going nuts. I echo all sentiments. :-) Write me if you'd like to scream together sometime.
Also, ditto on the laughing when you can. Someone on here wrote me one of the funniest things.....about how when Lance Armstrong is in town, she asks her husband if his scars are burning, Harry Potter style. She said that everyone in their family seemed to believe that since he had TC, he now had some kind of cosmic connection to Lance, which has also been the case in our family. My aunt insists on calling Patrick, "Lance," now. Some days I laugh at her, and some days I want to reach through the phone and punch her in the face. Such is TC, I guess.
Best wishes for the week!
--Kat