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Not too proud of myself these days....

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Remember how I mentioned that we were going to get a dog (puppy) for David? David said that his apartment manager would make an exception for him and allow him to have a dog if David got a note from his doctor. I'm assuming that the note should say something like a dog would be a good companion and would ease David's loneliness and lift some of his depression--or whatever the doctor may think a dog could do for David. I don't think it's a big deal what the doctor says exactly.

So we have been asking and asking our dr.'s head nurse to write a letter. We are supposed to get the puppy on 12/8...David has been counting the days....and today our NO's office called us and the head nurse told me that they don't think David should have a dog....much less a puppy. I couldn't believe it. She said that someone on chemo, with a compromised immune system, should not be cleaning up after a dog. I told her that he wouldn't do it with his bare hands...he could use disposable gloves, and a doggie doody bag.....whatever. She still refused and I was like, are you serious? You guys are pumping chemo in him and you are worried about him dying from dog germs? I said that dog germs might be a better way to go. We went back and forth about it and finally....I just snapped. I totally lost it. It was bad. I screamed at her and said, "My son is going to die, and if he wants a #%$&*@% dog for the last year of his life, he is going to have that dog if it means I have to move in with him!!!" I told her that he was going to have that dog even if she didn't write that letter and David had to break his lease and move into a place that allows dogs. She said, "I know as well as you do that your son is going to die. I am not telling you anything that I wouldn't tell any chemo patient. And you need to get control of yourself." I told her I had control, and I also had control whether or not David got a dog, not her. I like her personally, but I HATE how callous and jaded they are with David and us...like when she told me I should not be emotional or upset about David not getting treatment because the insurance denied it, etc. Really? I should not be upset about that? I think that these professionals see so much of cancer and death that they have lost touch with the humanity side of being health professionals.

But....screaming and yelling and cursing is not who I am, and not who I want to be. So I had a thoroughly rotten, lousy day, hating myself and just feeling miserable. And I don't like how I just snapped liked that. I didn't even feel it coming. It was like a dam burst. I think that there's a lot more going on under my surface that I am not really aware of. I do know that the holidays are hard for me. But I should be grateful because David seems to be doing a lot better. Today he was going through the college catalogs because he feels like he can go back to college next term. And he was talking about how glad he will be when the six months from the date of his last seizure are up so he can drive again. He had been talking about selling his car because he didn't think he'd ever be able to drive again....it's like he has some hope again, and that is a VERY, VERY good thing. So it's STUPID of me to let my outburst with the nurse wreck my little patch of happiness. But I just can't shake it off. I can't wait to get in bed and pull the covers over my head and cry myself to sleep. A total pitiful pity party for me.

By the way, the nurse said that Dr. Neuwelt didn't know a thing about David getting a dog...but she would write the letter and see if he would sign it and it would be in the mail today or tomorrow. I told her (not nicely---more like a threat) that if there was some problem with him signing it---to CALL ME TOMORROW. Don't wait a week and then tell me. I can't believe how long we've been asking for that letter and then today she drops the bomb and tries to get out of giving me that letter.

I know this is all so petty...but this dog has been like the one bright spot in David's life. He's been reading dog books and talking about dog classes and names for the puppy, and he's been actually counting the days until he can pick up the puppy. It's a big, big deal to him. Like I told that nurse....David can't drive, he can't ride his bike, he can't work, can't go to college....I'm not going to tell him that he can't have a dog. I'm not letting cancer---or a nurse--take that away from him.

My husband totally supported me when I told him about my outburst. He told me not to feel bad about it and said that sometimes you have to get forceful and not let these doctors and nurses get a little carried away with their opinions and authority. He said that the nurse is probably not a dog person. Yeah, probably not. My husband thinks that Dr. N probably wouldn't even say that David couldn't have a dog.

Anyway, kind of hating myself tonight. I'll get over it......I'm sorry to whine about such a petty thing to you guys who are dealing with way, way worse issues than whether or not your loved one can get a dog. It's just that you guys are a safe place to vent......

Love and blessings,
Cindy in Salem, OR

sadinholland
Posts: 226
Joined: Apr 2011

You have every right to speak up for your son. I totally agree with you. Why take any joy from David after all he's going through. If he wants a dog, let him have a dog!!! Aren't they always telling the patients to live life, enjoy life? And as far as you losing it, it's ok too! You are have a lot on you and I'm sure they are use to it. They can no way feel what we feel. They are patients to them and loved ones to us. And hey, it is no way a petty thing. If the NO read some of the post of how a dog has been so good for many people on here, maybe they would understand. I am cheering you on and looking forward to you posting a picture of David's new dog!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Cindy:

You are such a good Mama. Don't worry about that nurse. She will understand some day. This is your time with David. Sarah got a puppy and he has brought so much joy for her. She is having her chemo, but just think how much their immune system is rallied due to the joy and relaxation brought by watching that dog. Tomorrow will be a better day. I hope you got some rest. Every once in a while all of our dams burst. How could they not? Sending you blessings from Alaska. God Bless you and David!

Edna

connsteele
Posts: 232
Joined: May 2011

You go girl! And vent away here. All of us here know what you're going through and back you 100 percent. I agree with the other person here who said that sometimes those docs and nurses get immersed in their own little world and that sometimes need a good reality check, and what better way than from a screaming mom!

Is there anyway that a note could come from another source that the landlord would honor? Like a social worker or psychologist? Could you talk to a patient rep at the hospital who could pull strings to get the note, ASAP?

I can't believe how callous that nurse was. Hasn's she ever heard of pet therapy? I believe that pets..cats and dogs especially.. have a special emotional connection with their owners, and one for David would add greatly to his life.

You and David are an inspiration all of us going through the same things. I've learned a lot from your posts about therapies and navigating hospital/medical bureauracy. Thanks for keeping in touch.

Jenny2008
Posts: 7
Joined: Sep 2011

GET THE PUPPY and get it when you planned and if there is no stupid letter and the apt manager will not allow the puppy on the premises, you keep the pup and get David moved to a place that will allow it! Experiencing JOY is the best medicine; I would move heaven and earth to get that pup into his arms.
warmly,
Jenny
m/o Michael,AO, 2008

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Sorry that happen to you. I have that RN behind my name too. Sometimes I just dont know why they dont think before they open their mouth. I lost it a couple of times when my sister was in the hospital, and that was nurse to nurse.
I will write you a note if they wont, I dont live in your state but they wont know that.
Take care Cindy my prayers are with you.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you, all of you, for all the emotional support and for understanding how I feel about the dog thing. I can't believe how emotional I still feel at the possibility that we can't work out getting the puppy for David. Well, he will get it one way or another. It's just hard because even one day is a big deal to David. He can't get the puppy on the 8th like he was supposed to because the breeder has a vet appt on the 9th. She doesn't understand why one day is a big deal to David. I think it's because David believes that his days are numbered and he doesn't want to waste even a minute, much less a day. And he'll lose a lot more than one day if the NO doesn't write that letter.....

Thank you, especially, fortheloveofmysis. I think it's really unselfish of you to get on csn and take the time and effort to post notes. I really appreciate your offer to write a note to help us get David's dog. I think of you often, and I have a lump in my heart, thinking of how hard the holidays must be for you. I'm still praying for you every night.

So my little patch of happiness was really short-lived. I had a lousy night with very little sleep, and then when I woke up, I had a message from David saying he was in extreme pain...this time in his knee joint. And he has a fresh, ugly, bloody red bruise about the size of a saucer on his left groin where they made the incision on the 17th to run that catheter up to his carotid artery for the BBBD. And he had some pain in his groin, but on the other side, not on the side with the fresh bruise. So I had the joy of calling the non-dog nurse again today. She was sweet and pleasant like we had never talked yesterday. She asked me if David had a lump in his groin...they are worried about a deep vein thrombosis or a clot forming where they went in for the BBBD treatment. David thought that maybe he felt a lump....but he was not sure. So I drove up to Portland to check on him. He was in so much pain from the joint issue that when I got to his place, I didn't want to make him get up. So when I got there, I knocked softly on his door and then let myself in (I have a swipe card and a key to his apartment building). I went in his bedroom and he had the windows open. It was super cold and he had the blankets up over his head. I pulled them off of his face and for a minute, I thought he was dead. He was chalk white, and his face looked funny....kind of slack, and he didn't move and I couldn't see him breathing. My heart just stopped. I touched his shoulder and said, "David....David...are you all right?" I was terrified. He opened his eyes and my heart started beating again. He was really sound asleep because he had taken some Dilaudid for the knee pain.

He took the Dilaudid right before I headed to Portland so the joint pain was a little better, but his groin still hurt. I didn't feel a lump but I didn't like the way that bruise on the other side looked at all. I called the dr and they said that unfortunately, sometimes patients get bruises after the BBBD treatment, and that David probably bumped himself and didn't remember. I don't think so, but whatever. No point in arguing with them about that. And they think that the joint pain is from the neulasta shot that promotes bone marrow growth. I think it's from the steroids. He had that same pain once before, when he took steroids for a long time, during radiation and chemo. But I didn't argue about that either.

David has been getting those huge bloody noses again because his platelets are low from the chemo. He didn't have to go to ER for any of these things though, which was good because he absolutely HATES and DESPISES the ER. I got lunch for him and he was able to get to the couch so we ate together and just hung out for a while, watched some TV together, and talked a little bit about nothing. I went home a few hours later, and I called him to see how he was doing, and he said his knee is much better, but his groin was a lot worse. I am going to drive back up to Portland tomorrow and take him to the dr if he is not better.

Today David told me that he decided not to go back to school next term. Between the massive bloody noses, the bruising and the groin pain, and then the knee pain, he doesn't think he can handle school. I said that I thought it would be better to wait until the weather was better etc. and I acted all positive about that decision, but my heart breaks for him. There goes that little bit of hope that he had. I noticed (and so did some of my friends ) that David's FB posts have been different lately. Not positive like he's been all along. Lately he has been saying things like, "Now a bloody nose? WTH!" and "Extreme joint pain now? When is enough, enough?" I don't blame him at all for feeling like this...but it greatly concerns me. He told his cousin on Thanksgiving that he did not remember what it felt like to not feel sick. He can't remember when he actually felt good. It makes me so sad. I'm back to crying all the time.

I'm sorry for being so negative. I know that things could be a lot, lot worse. I need to try harder to get back on top of my emotions.

Love and blessings,
Cindy in Salem, OR

AshleyWF's picture
AshleyWF
Posts: 43
Joined: Aug 2011

Cindy,

I read every one of your posts, I will hit the reply button and stare at the screen, only to just close the window in lack of knowing what to say. Wishing I could make it better, but knowing that I cant.
I pray for you and your son every day. Since I found you on here, there hasn’t been a single morning you do not cross my mind.

I was happy to hear you had a good yell … a scream, a complete freak out. We need those! As horrible as you felt, you let off some steam, some built up, been there for a while, STEAM!
That nurse, as you said, they see these things everyday… they I’m sure have had quite a few phone calls like yours. Do not feel guilty. *hugs sent your way*

With once more not knowing exactly what to say, I still wanted you to know that millions of miles in every direction you have prayers for you and your son.
A special one is being said right now in Vancouver, BC

Ash

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you, Ashley, for your kind comments, your support, and most of all, for your prayers. It's been a rough road for David and for our family, but I get a lot of strength knowing that others care and are thinking and praying for us.

How are you and Jordan doing? I hope you both are having a good holiday season, filled with sweet times and special blessings....

Love and blessings,
Cindy in Salem, OR

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Its kind of like a family on here, your right a place to vent and a place to get strength...I dont post offen any more.But still look to see how you and others are doing. I am extremely lost with out my sister. Someone beat my Dad up on Monday and my first reaction was to call my sister, I had the phone in my hand...I cried all the way to the ER.
I cant really figure out what to do with out her.
I am praying for you and David.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I hate to hear that your dad was beaten and in the ER. On top of that, you had to deal with it without your sister. It's like one grief on top of another major grief. I hope that your dad is okay now. I am praying for you too....that you will have the strength to do what you must, and for grace from God, that your grief for your sister does not overwhelm you....
I'm so sorry....
Love and blessings,
Cindy

Girl2010
Posts: 26
Joined: Jan 2011

Our dog was a huge part of the last few months of my brothers life... She comforted him in ways none of us could....Also, fortheloveofmysis- I often pick up the phone to call my brother:( seems to be getting harder by the day..

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

I cannot blame you one bit for reacting the way you did. We had an 11-month old puppy when my husband was diagnosed. That dog meant so much through his treatment and in the last days of his life. Since he had gone blind I would put her in his lap, and even when his mind failed him near the very end and he was so tired and frail, he could stroke that dog and feel that bond they had developed. That dog will mean everything to David.

Forgive yourself. You are right. You are a mother. You know what your son needs.

I am 3 1/2 months into widowhood and survived my first Thanksgiving without the love of my life. I am traveling and doing pretty well, considering the difficulty of missing his wonderful presence. His spirit is here with me...always.

God bless you!

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

My dear Cindy, Dear David,

I agree with the previous posts: get the dog when you intended; get someone else to sign that letter if you have to (like David's PCP). This nurse does not know what she is talking about. Although there is the theoretical risk of dog diseases affecting your son (I got my sister 2 kittens after her diagnosis and I scoop the litter) there is the undeniable benefit of joy and companionship that this dog will bring to David. Pet therapy is incredible. Or even who knows? The dog "germs" might be beneficial too. After all the literature abounds with weird cases like this: a woman cervical cancer disappears after she got her rabies shot series (her dog had bitten her) or a woman's breast cancer goes into remission after being exposed to the measles in the early 1900. There is a virus called New Castle Disease that is only harmful to animals not humans. It has been shown to destroy glioma cells. So point being that nurse is a tart. And I am glad you yelled at her.

I lost it couple of times in the hospital and at the airport. I have yelled and cursed. I remember whipping out my iphone where a picture of my sister's MRI brain with the large tumor was visible to anyone to see. I screamed " Do you understand what Brain Cancer is?" The agent was giving us some problems at the check in counter. And then I just started to sob uncontrollably. The whole airport must have heard me.

Keep us posted about David and his progress. I want the next MRI of his brain to show a drastic reduction in the tumor load.

Julia

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you for your note, Julia. I too am hoping and praying that David's next MRI will show that his tumor has gotten smaller. I will even feel some relief if it has remained stable, though I would really prefer some shrinkage. I'd be relieved if it's stable because there for a while, it seemed like it was growing so very aggressively...it was terrifying. Seeing how much growth took place in the 3 weeks following his second brain surgery really shocked us and made us realize that the tumor had returned with a vengeance.... I am hopeful, though, that his next MRI will show some reduction because David hasn't had those horrible headaches since he started this chemo. I'm hoping that's because the tumor is smaller. He will be getting another MRI and another round of treatments soon, sometime before Christmas. The NO's office hasn't given us the exact dates yet.

It's been hard for us lately. This chemo is a whole different experience compared to Temodar. Much, much harder on David. He's still not feeling well....massive bloody noses, severe bone pain (probably from the Neulasta shot that promotes WBC production in his bone marrow), joint pain, moderate headaches, stomach aches, pain and bruising in his groin at the incision sites.There's also been a change in his.....I don't know....maybe in his attitude? His outlook? Christy (his sister) and I were worried that the surgery may have messed him up...or that the tumor had grown into a part of his brain that affects his personality...but now I am wondering if David is struggling with depression? I mean, being a lot more depressed lately....some depression is to be expected if someone has brain cancer. But he's been really withdrawn and quiet, and just not himself....he takes an antidepressant but maybe he needs a higher dose. Another thing to ask the head nurse...

I follow Kat's blog and her Facebook page and I can tell that you guys have been having some tough times too. It looks like Kat is fighting hard and rebounding. She's pretty tough! I'm still amazed at how she did with the radiation. David didn't do nearly that well, and I think he's pretty tough. I hope and am praying that things will continue to go well for Kat.

Love and blessings,
Cindy in Salem, OR

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Kim.

Thank you for writing to me. I am glad that you are getting through the holidays. I can't imagine how hard the holidays must be for you. But I am glad that you are able to travel and maybe see some new places. My mom visited me and my sister a lot after my dad died and it helped her a lot, just to have a change in scenery, and to be with loved ones.

I'm probably going to just write a card to that nurse and apologize for cussing at her. Still can't believe that I did that. I won't make excuses for my behavior...just will tell her that I am sorry and that I don't want to be that kind of a person.

Love and blessings to you,
Cindy in Salem, OR

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

Oh dear sweet Cindy, I am so sorry for what you are having to go through right now. Whether or not David gets a dog and trying to get the documentation is not something that should be a battle right now.

I commend you for taking a firm stance with the nurse. Good for you! Sometimes the doctors, nurses, specialists, techies, etc. all need a rude wake up call and sometimes the caregivers or the patients are the ones to do it.

Please don't give up on getting David his puppy; even if you have to type the letter yourself and march into the doctor's office and wait all day for him to sign it.

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