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Brain Mets...and have a fantastic day!!!! (some sarcasm)

KateNTx
Posts: 39
Joined: May 2011

So, we had a PET scan 16 days ago showing no further spread, Cancer of Unknown Primary still in Lt. Axilla only...but Monday night, my husband became confused again, responded to a trip to the ER and IV saline, was GREAt Tuesday morning....tuesday night...confused again, back to the ER, CT scan performed...lesions found...transferred to the VA hospital, MRI perfomed Wednseday shows 5 brain mets.
So the Hospitalist comes in, and tells us, whole brain radiation is our only option, and even with that 4-6 months is my husband's maximum life expectancy, asks if we have any questions for her, answers them (some, she really PISSES ME OFF with her evasions)...example, when I ask how many brain mets and where her answer is "several" and she can't tell me where...ummm...dumb *****, it's in his chart, you could try READING it. then she says and this is VERBATIM although I can't type with a thick hindi accent (note, 2 of his oncolgists are also of Hindi/Farsi descent and not stupid, it's just this IMBICILE) "Thank you, and have a fantastic day"...Are you F-ing kidding me!??!?!?! hi, your husband is dying, I can't/won't give you information to make an informed decision...have a FANTASTIC day?!?!?!?! WTF!?!?!?! she's lucky I don't go postal on her...like seriously, lotto winning lucky. I get that she's young, probably only a few years out of med school, but seriously...don't they have a class in med school on how not to have the patient's family beat the crap out of you for being a totally emotionally oblivious asshat? Hell, I've had more appropriate responses to my husband's new dx from BILL COLLECTORS, who are not KNOWN for sensitivity training. when I told the hospital social worker about it, I was told I'm not the first to complain about her attitude/bedside manner/communication skills. In addition, these morons can't follow simple directions, like due to my husband's short term memory deficits, call ME (as I hold his POA) when new tests/consults are scheduled and explain it using the phone number I have provided 7 times...you know, the one in BRIGHT RED on his dry erase board in his hospital room.
So this Dr. sends him for a consult w/radiation oncology that I only find out about by CALLING my husband to let him know what time I'll be at the hospital, not getting an answer and then calling the nurses station, to be told that they are prepping him for transport per Dr. Idiot's orders. When I explain I NEED to be NOTIFIED about any additional tests/consults, Dr. IDIOT calls and asks me why I am REFUSING to allow the consult...I explain (AGAIN) that I have no problem at all with the consult, but that I need to be notified PRIOR as we live 2.5 HOURS from the hospital, and I have responsibilities to our ranch as well as to my husband, and need to make the commute to be with him.
So, I call the radiation oncologist and talk with her (not an idiot) and she explains that he has 5 mets to the brain, and wants to start Whole Brain Radiation, as he has "too many" mets for cyberknife (I am getting a second opinion from a Dr who has treated more than 20 brain mets at a time with cyberknife, and MAY take my husband there for additional treatment post-WBR if he feels there is merit to it in terms of expanding his life-expectancy). Still waiting on SGN-35 to be approved in 17 days, as my husband's tumor is strongly CD30 positive, and it's really our last hope for controlling/causing remission.
So, although we are planning to move to be near his (adult) children for what time he has left, we are not giving up hope of treatment to prolong/improve his life, although if cyberknife isn't viable/fails to control the brain mets, we will then be moving to hospice care.
I haven't eaten since monday, unless you count 2 breadsticks, 4 bites of pizza, and 4 chicken wings, and sleep terrifies me, although with him in the hospital I did get 7 hours last night...I also went and got a tattoo on wednesday...my husband's name, inside the batsignal...batman is our running gag, since he was wearing a batman shirt when I met him. Yes, it was love, or at least lust at first sight.
I tried to hit the drive thru at McDonalds tonight, but after paying for my meal, drove off and FORGOT to actually get my food at the next window...by the time I remembered, I was in my hotel room, and you couldn't PAY me to go back out for food I didn't REALLY want in the first place.
I wonder...are brain met symptoms catching? I know alzheimers caregivers develop symptomns of dementia....LOL
Anyway...trying to sleep alone for the first time in 7 years is damn near impossible, but I'm off to try...apologies for rambling, and cussing, but...yeah...it's been that kind of week

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

I know just how you feel as I was there LOTS of times. I'm not going to give any of the pat answers that most people would because I don't feel like irritating you further :) The best thing I can tell you is the Caregiver Creedo - one thing, one step, one moment at a time. Breathe deep and focus on what is in front of you.

It's going to suck but force yourself to eat, even if it's junk. Smoothies, shakes, or anything liquid might help as they are more mobile and it doesn't feel like food. Okay, that might just be me but every once in a while I don't want anything in my mouth, but I'll have a smoothie or a shake. Go figure.

As for sleep, you might want to start forcing yourself to do that too. You are heading to a breakdown that you can't afford right now. Try all the home remedies (milk, tea, warm bath, etc.) and if they don't work, try meds. If you don't want to go to the docs for yourself, OTC can be the way to go. And think outside of the box on that one.

Vent away, my dear. It's all good.
Hugs and Loves,
April

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Okay, first, take some deep breaths. Inhale, exhale, inhale, exhale. Now ya got it!

Next, never, ever, ever buy into time limits that doctor's give you. Especially interns, residents and visiting doctors. Why? Because the doctors aren't God and have no clue how long anyone, including themselves, has to live. It's not possible to know unless a person is already on death's door when they come in.

Always get more than 1 opinion especially when they give you time limits and when they tell you that you're only options are: (Fill in the blank).

As for the Hindi/Farsi doctors? I hate them and avoid them like the plague. Oh they very well may be qualified, in fact they have to be in order to get a medical license in this country. But maybe they ought to also check their bedside 101. Every Hindi/Farsi doctor I have ever had, I've always walked away from; usually due to bad medical advice, not listening to me (they think we patients don't have a clue about our own bodies) or telling me that they are the doctor and they know better than I do. I actually walked out in the middle of a consultation with a doctor because the idiot criticized the way my brain surgeon and his staff performed my brain surgery that saved my life. His words were "well that's not the way I would have done it" Wrong approach with me. I got up, told my husband the consultation was over and the doctor actually started crying and asked why we were leaving. My husband, ever so sweetly said, "because you insulted the doctor that saved her life. Wrong move! Gotta go, bye".

You are doing the right thing. Be proactive. Make the doctors, interns, residents, specialists and nurses accountable. When you feel they have overstepped their boundaries, contact the patient representative at the hospital and tell them your concerns. Also, make sure it is written on the chart that before any procedure (CT Scan, PET Scan, MRI, Spinal, etc.) is performed, that you are to be notified and your permission obtained BEFORE the procedure even begins.

Be strong and be firm about this. Find a doctor that knows what they are talking about and has more than 5 procedures under their belt. I found a brain surgeon that specializes in my tumors and does these surgeries 3-4 times per week, not per year.

Good luck sweetheart!

Teresa

sue5749
Posts: 170
Joined: Dec 2010

I was just reading your blog, I to know how you are feeling. My husband has supraglottis cancer he has had all rad treatments and now doing cemo. He just got out of the hospitol because of high blood sugar. Was in there for 2 days. I just couldn't help of laugh at the Mcdonalds story! Believe you me I really think that the dementia thing is for real! Every since my husband's dx I have made plenty of wrong turns on the road that I have traveled so many times! Hope things get better with you and your hubby!

KateNTx
Posts: 39
Joined: May 2011

I finally fell asleep at 4 am this morning, and woke up at 8 to go back over to the hospital. I hate to be apart from him like this. Today he ate 8 oz of Applesauce, and not much else. I had "the Hospice talk" today with him, and he wants to keep fighting the Cancer. I told him that I will support whatever he decides, and if he gets tired of treatment that all he needs to do is say so, and we can stop. He still believes he can get well. I look at my beloved husband, who, a year ago was out push mowing our 1 1/2 acre yard, and see a shell of the man I adore. He's dropped 30+lbs since February. his legs are bone and sinew, and the perfect butt he had when we met, is now just as bony as mine.
Today he was more lucid, only fumbled for words a few times, and we were able to drowse together in his bed for a couple of hours before I came back to this empty damn motel room.
The weekend hospitalist, Dr. Singh who is a non-Va doctor who is there on contract on the weekends, is a good and kind man. I find kindness more than anything now has the ability to break my heart further.
I called our friends from when we first met last night. As soon as I heard their voices, I started weeping again. I miss having people around who remember well what my darling was like before the Cancer. I know our friends here care, but I fear his illness has made the memories of him as a vital, funny, life filled man fade from their minds. Maybe this is a kindness, I don't know.
I alternate wildly between begging God to heal him, and being so angry at God I can't pray. I believe the Holy Spirit prays for me when all I can do is scream, but I am human, and don't understand how a God of love can do this to him.
One of our friends in Virginia has had a recurrence of his NSCLC, and though his most recent scans are clear knows that he may soon have to walk this road.
If my husband is taken by this Cancer, I will be going to visit Virginia and possibly help that friend. He was the only one who knew my husband and I were dating for the first few months, and of all our friends, has always supported our relationship. Maybe it's cowardice on my part, but I'm not sure I can face our home without my husband there, and I'm hoping that by going back to where we began, I can find peace with the ending when it comes.
i did get good news from the Radiation Oncologist I emailed about my husband trying cyberknife. He thinks it's worth trying, and is willing to review my husband's case for free. So at 7:30am Central, I'll be at the medical records office waiting for them to come in at 8, to get those records couriered today.
I managed to remember to bring home my food tonight, although what few bites i've been able to choke down have tasted like dirt in my mouth,
I am not a fan of Ice Cream. Sweets are my husband's vice, not mine. He used to bring me Reeces cups when he'd come home from work. Half the time I never would wind up eating them, and he'd filch them. I wish I's griped at him less for eating 'my" food.
I see all my shortcomings so clearly now, when it's too late to change them. All the sunsets I was "too busy" to watch with him, all the times he wanted to go to a movie, and I didn't want to go out, all the times my wants were more important to me than letting him just be himself. My making him cut off his beard and sell his Harley. I tried to protect him, and have wound up being this close to losing him anyway. I feel like such a self-important fool.
I've offered to call our friends and his family for him to talk to them, but he says he doesn't want to, because he is not going to die. he knows the odds. I sat down today, and over 3 hours spelled out very slowly what will happen if the Cancer continues to progress, and how slim the odds of either control or remission are at this point. Denial or courage, God alone knows.
I never wanted to have to tell my husband that, it's something I can accept and support if he wants to stop treatments and focus on comfort and quality time over quantity, but today I did. I'm sure it's not the last time I'll tell him this. Hopefully, it will get easier. I don't see how it could get harder.
He asked me if I want to quit. I told him, no, that I'd do anything to have more good times with him, but that, if he wants to fight this, it has to be because he wants to, not because I can't imagine losing him. I don't want him to put himself through more treatment hell for me. If it's what he wants, then, I can stand it forever, I'll fight for him, and take on the VAMC hand to hand if I have to, but I want it to be his choice, and not for him to deny himself a chance to make peace with dying because I want him to live.
I need to get some rest, I'll have to be up in 6 hours to be ready to have them courier his records up to Oklahoma.

ms.sunshine
Posts: 710
Joined: Mar 2010

What you and your husband are going thru is so heartbreaking.

We will never understand why God allows such things to happen. I guess that is where that trust factor comes into play. It's ok to let God know you are mad at Him, He knows anyways. I have had my share of angry words, and tantrums. Gods big enough to handle it. Afterwards I feel comforted, and I have a renewed strength. Go ahead and cry on Gods shoulder.

What is your husbands name I would like to pray for him, and join my faith with his. I know God knows who he is, but I like to call the person by name that I'm praying for.

Take care, a big hug for you
Jennifer

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I agree with Jennifer, and I would also add this: it's okay to get angry at God, just don't forget to talk to Him. If it helps, think about the "Footsteps" poem where it talks about the time you only say one set of footprints it was then that God carried you. It has been my strength many times when I thought I couldn't go on.

I can't imagine how very difficult this is for you. Please know that you and your husband are in my prayers.

Hugs,
Teresa

KateNTx
Posts: 39
Joined: May 2011

And today was a decent day...better in the evening...especially since the VA discharged him w/o steroids or anticonvulsants (wtf?!?) and I was able to see his onco and get that fixed today. He's been really lucid tonight (the radiation oncologist says the response to steroids is fairly indicitive of what change we're likely to see with the WBR.
They've also agreed to do another MRI in 4-6 weeks, and consider him for cyberknife then! WOOT!
I also got ahold of the Sarah Cannon Cancer Center in Nashville, Tn today (where I found the only "expert" thus far on Cancer of Unknown Primary) and he is talking to Ric's Oncology team in the morning. Pray that he has a treatment plan/clinical trial that can benefit us. I also did some independent research on Chemo that can cross the blood/brain barrier, and it's a class of Chemo agent we haven't yet tried, so it's on the table for discussion with his Oncologist for his Radiation follow-up appointment a week from Thursday.
Keep us in your prayers. We need them all so much. May God Bless you for caring!

arndog64's picture
arndog64
Posts: 538
Joined: Mar 2011

I will be praying that you all find a treatment plan to beat this beast.

KateNTx
Posts: 39
Joined: May 2011

We have one more day of WBR, so far, so good...or at least, he's not discernably worse, which I'll call a win. His Radiation oncologist said he looked better to her today...and I've actually been able to get him to eat and drink a lot more at the hotel than he was willing to do in hospital, so, perhaps we can get his weight up. He's down under 130...which is terrifying since his healthy weight is around 155...and he was just a hair over 170 when this all started. I told him (since he HATES his wheelchair) if he can get back over 140 I'd stop making him use it when he didn't want to. I bought baby food for him today...he gags easily now, so I'm hoping since he can eat applesauce well (and milk and eggs) that the texture of the stage 2 baby food will be more palatable to him than solids, and require less effort for him to eat. He refuses Boost/ensure because he hates the taste of them, but he will drink Muscle Milk (a weight lifter's drink) with some prodding...ok, a LOT of prodding, but it's high in Potassium, and hopefully it will help ease his muscle cramps some.
Right now he's talking to me about Cars...and it actually relates to the TV show I have on for him...so I'll call it good. I ate yesterday and today...not "enough" probably, but it's food. I still am not sleeping much...he's up and down to the bathroom all the time, so I have to get up with him. When we get back to our area 2 1/2 hours away, I'm having home health take a few hours a day with him so I can try to get 3-4 hours of uninterrupted sleep. And now, I have to go call a guy about a house in Indiana to rent-to-own, so we can be near his family...and hopefully be able to fly from there to Nashville regularly..still waiting to hear back from Sarah Cannon. Keep praying.

Bill W
Posts: 5
Joined: Dec 2008

Hi, this is actually the wife of Bill. Just wanted to let you know that my husband has had Gamma Knife to brain mets, which is very similar to cyberknife. It was a great procedure. Very easy for him to tolorate- a one day thing. He had nine small tumors that they did all in one session. I was very nervous for him, but he was medicated to relax him, and he slept through the whole thing. They are able to stop during the session if he needed to or had to go to the bathroom. The recovery was absolutely nothing. He was fine that day. It is really like a miracle procedure. I, personally, think it is good that your husband had whole brain first, as mine had it the opposite. The tumors that were treated with gamma knife did not come back (7 mos) but he had new ones grow and then went to whole brain. Just wanted you to know that Gamma Knife is wonderful.

Bill W
Posts: 5
Joined: Dec 2008

Hi, this is actually the wife of Bill. Just wanted to let you know that my husband has had Gamma Knife to brain mets, which is very similar to cyberknife. It was a great procedure. Very easy for him to tolorate- a one day thing. He had nine small tumors that they did all in one session. I was very nervous for him, but he was medicated to relax him, and he slept through the whole thing. They are able to stop during the session if he needed to or had to go to the bathroom. The recovery was absolutely nothing. He was fine that day. It is really like a miracle procedure. I, personally, think it is good that your husband had whole brain first, as mine had it the opposite. The tumors that were treated with gamma knife did not come back (7 mos) but he had new ones grow and then went to whole brain. Just wanted you to know that Gamma Knife is wonderful.

KateNTx
Posts: 39
Joined: May 2011

Hi, wife of Bill. I hope you also have a name :) I'm also glad we did WBR first, as it overall seems to have a lower recurrence rate while keeping our options open if we get less than a total response. Our biggest problem is that 1 of the tumors is almost an inch in size. And he had a clean (NED)head MRI in May following a neurotoxic response to the combination of chemo and Levodopa, so they are FAST growing little buggers. Hopefully with the rate of growth there will be a correllary rate of response to WBR and we won't get to a point where we'd have to consdider CK/GK, but it's nice to know that as of now, that option is available.
I also found out that this facility uses a linear accelerator and not a CK/GK machine to treat, and that's something I'm less comfortable with overall as far as precision goes, so I'm thankful that we only got WBR here, in the hope that if we need it, we can go to another facility to have either CK/GK done.
At least with the brain tumors I feel like I'm on familiar ground, as my Dad had a pituitary adenoma that caused 2 craniotomys, 28 transphenoidal surgeries, and 2 rounds of WBR (too large and poor location for GK when it was first an option in 93), pneumococcial meningitis (repeatedly), a 2 week coma, and finally a hemipalegic stroke due to 2 rounds of WBR, so I feel comfortable (as much as possible in this situation) discussing treatment options with neurologists to a degree I don't think many people are. I also am feeling a LOT of guilt right now, for overlooking symptoms that in retrospect are obviously caused by the brain mets. I have PTSD pertaining to my Dad's tumor/illnesses/stroke (at least in part) and tend to worry non-stop about brain tumors, even to the point of sitting on my bed 2 weeks ago telling myself that my PTSD was out of control due to the stressors in my life and "Dammit Kate, not everything is a brain tumor"...except, it was.
Once my life calms down, it's back to therapy for me for another decade to process THAT guilt. *sigh*
I've repeatedly asked my husband's oncology team if a faster response to the neurologic symptoms would have changed anything, and they say no, but...the guilt, especially when I've dealt with brain tumors before is overwhelming me.
I'm just taking it one day at a time right now, by the grace of God.
On the good news front, my husband gave his heart to the Lord the other day, after many years of prayer by his extended family and myself. I take great comfort in that right now, even as I know that some of you who read this may be offended. I hope those of you who are offended by it have something in your own Faith/Spirituality/Belief system that you can draw comfort from though, and it's not mean as "preaching" to you, merely as sharing something that I and our family are joyful over. (Ok, disclaimer over now)

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