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Seizures/MRI/Postponed Treatment/No Avastin/ROLLERCOASTER!!!

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

Okay, I guess you all know that we had plans for David to do intra arterial chemo on Wed (today) He was supped to be admitted on Tuesday for an MRI and a battery of tests, treated Wed., home Thursday, back on Friday for out-patient Avastin. We also had an appointment with the care management team/pallative care place on Monday, so we decided to go to that appt. and then stay the night at David's apartment and go to OHSU on Tuesday from his place, since he's about 3 miles away from OHSU.

Well, the best laid plan of mice and men, right?

(BTW, the palliative care appt. was a total waste of time. They were nice but they can't do anything for us. But like I said to David, if we hadn't gone, we would have wondered if just maybe they could have helped us....)

So we went to David's apartment after the palliative care appt--we haven't been to his apartment since before Christmas, since before the disastrous BBBD treatment. I took down the withered-up Christmas tree and all the decorations and vacuumed and straightened up some things, and his place looked so nice! Here is what I posted on Facebook on Monday night after I cleaned and after we had dinner:

FB>>>David called a dinner order in to Soi 9 (yummy!) and then he walked to the restaurant and picked our order up. I was going to walk with him, but he wanted to go alone as a test to see how he would do. Well, he did just fine. I couldn't believe how quickly he walked there and back. He seems so much better just being back here at home in Portland. David is so happy to be back in his apartment. I'm in his bedroom, surfing the internet, and he's out in the living room, visiting with Josh A., his good friend and former college roommate. I can hear them talking and laughing. It makes me so happy that I have a little pain in my heart...if that makes sense lol! I wish I had taken a picture of David earlier, lying on the couch, watching TV and using his iPad. He had such a contented, satisfied look on his face. He was talking to a friend on the phone and I heard him say, "It feels so good to be home." He said it with such deep emotion and gratitude that it brought tears to my eyes. The bad moments are so painful...but the good moments are so, so incredibly sweet and special....I savor them. Love and blessings, Cindy<<< END FB

Okay, so about 10 minutes after I wrote that post on Facebook, I heard thumping noises and Josh yelling my name. I sprang off the bed...I just knew...... David was in the throes of the most awful, horrible, terrible seizure. I thought his other ones were bad....this was beyond terrible. He was thrashing so violently that he knocked over the coffee table and their pizza and beer were on the floor. His friend Josh was trying to keep him on the couch. David was bleeding from his mouth from biting his tongue and cheek. He was really red and foam was coming out of his mouth and he couldn't breathe. I helped to keep him on his side and keep him from choking on his blood and spit. As the seizure abated, I called the hospital and they told me that they would call our NO and see if we needed to bring David in to the ER. David was staring at me but he couldn't talk and he was really out of it. Then he started seizing again and it was worse. He couldn't breathe....I could see the terror in his eyes. His head was pulled to the side farther than I thought it could go and all the muscles in his neck looked like cords sticking out and his arms and legs were pumping and kicking crazily. I immediately called 911. The EMTs were there in about 5 minutes. The 2nd seizure was almost over when they got there. There were 8 of them. One of them was hitting David on the chest with the back of his hand, yelling, "David, David, can you hear me?" Then I heard that EMT say, "He's conscious, but barely." They said that he was breathing "stertorously." I've heard that term before but I've never heard anyone breathe that way. It was horrible. I found out later that when you have a seizure that bad, all of your muscles tighten up, including your diaphragm, and it's hard to breathe. David told me later that he thought he was suffocating.

They took him out in a blanket, like a sling/hammock/chair, with David sitting upright but slumped over. His head was hanging to the side and he looked like he was dead. I was so heartsick. I was devastated that he didn't even get one night in his apartment...he was so happy....he was innocently having a gourmet pizza from his favorite restaurant and a beer with his best friend, watching a movie, laughing, having a normal person's night...and then this. I knew that this meant that he can never ever live alone in his apartment again. I was grief-stricken.

The thing about that blanket...I don't know why I get this way....the blanket is a fleece one that his cousin Heather made for him for Christmas. She special-ordered the fabric online. It has a Lakers pattern...my husband and I are originally from LA and Larry passed on his Lakers fan mentality to our boys. So Heather made this fleece blanket where you tie two pieces together and it has a little happy fringe all around it. David loves that blanket.....and for some reason, it upset me so much to see him carried out in such bad shape in that happy blanket. I called my sister and I was crying so hard about the blanket and the whole situation that she couldn't even understand one word that I said. The image of David being carried out in that blanket is imprinted in my mind.

I was a mess. I called my husband and my daughters and they came to the hospital. They did a CAT scan and sedated David because he had a killer headache. We had to wait a long time to talk to a neurologist and they told us that the CAT only told them that there was nothing urgent like bleeding or a midline shift, but it wouldn't tell us about the tumor. They didn't see anything urgent so they finally let us go after about 7 hours. We got home at 6 am. Christy and I stayed at David's apartment. I was sick with worry about David. I kept crying every time I thought about going to the hospital later that day (Tues) and getting admitted for treatment and having an MRI done. I knew that the tumor had grown like wildfire while we were sitting around waiting for the aftereffects of the BBBD to subside.

So....we went to the hospital later on Tuesday and were admitted. They did the MRI late that night, and the whole night, I kept waking up with my heart pounding, terrified about the MRI and what would happen with David in the next few weeks/months. Then this morning our NO and his team came to David's room early to prep him for the IA chemo--or so I thought. I was sound asleep but I heard them say, "Where is Cindy? She needs to hear this." I sat up really fast and almost passed out. There were about 12 doctors, residents, students etc. in the room, all in white lab coats with clipboards. Dr. Neuwelt said, "Well, we have some good news, and some not so good news." Then he said this:

"THE MRI SHOWS DRAMATIC IMPROVEMENT. WE ARE ECSTATIC!!!!!!"

I could not believe it. I thought I wasn't hearing them correctly. I don't think I even acted happy. I think I was in shock. It felt unreal. The not so good news was that David's platelets were too low to do a treatment, so they had to send us home. We will try again on Tuesday. That was not very bad news as far as we were concerned. And---Dr. Neuwelt said, "NO AVASTIN." He said that he doesn't see a need for it now. A-M-A-Z-I-N-G!!!!!!

Even typing this, I still almost can't believe it. Later in the morning, the head nurse (the non-dog one) came in and I told her that I was so shocked that I almost couldn't believe it, and that was why I didn't act happy when they first told us. I told her I did not expect that report, especially after the seizures. She said that they did not expect it at all either, and that they were also very, very surprised...but very, very happy with the MRI. She also said that seizures are funny things...they don't seem to have a correlation with tumor growth. She said that David has a full blown seizure disorder, like an epileptic. I don't know what we will do about that.....we are seeing a seizure specialist next month but I don't know if he can help David.

Dr. Neuwelt said....that they want to revisit the BBBD treatment decision....he is thinking that he wants David to do it again since we had such a favorable response. Favorable response!!! I remember David's response....he was drooling, in diapers....but then---look at the MRI. I was thrown back big-time. I said, "Are you considering it because you think David won't have so much swelling if you do it again?" Dr. Neuwelt was a little annoyed and said, "I wouldn't do it again if I thought he was going to have the same issue with swelling." So I don't know.....I don't even know if David will agree to it. I think that......I think that.....I want David to do it again, even if he has such a hard recovery....if he can recover again, and if it helps as much as it did this time. I'm so conflicted. I'm going to try to post a pic of David's MRI in my expressions area so you can see the difference and see why it might be a good idea to do it again....

So we went home to David's apartment. David refused to come home to Salem with me, and he didn't want me to stay with him either. I didn't really try too hard to make him come with me. I knew i was going to lose this battle. I will go back up on Friday and Monday to take him for bloodwork, and then hopefully we will be admitted on Tuesday, if his platelets are okay. And if they have room in their schedule to treat him. i am vacillating between joy about the MRI and terror that David will have another seizure when he is all alone. Tomorrow I am taking my dog, my horse, a thermos of hot tea and a sandwich, and I'm going to ride my horse up in the mountains as far as I dare at this time of year. I'm going to ride even if it's pouring rain. I'm going to lose myself in the woods....and then I will come home and face all of this again.

So there you have it....I just want to add this: David does NOT have the gene deletions that may make his tumor more sensitive to chemo. Yet he had a remarkable, "dramatic" response to this treatment and the chemo. I think this shows that not having the deletions is NOT a guarantee that you won't have a favorable response to chemo. Right? Right!

Love and blessings from an amazed, grateful-to-God Cindy,
Back in Salem, OR

connsteele
Posts: 232
Joined: May 2011

Oh Cindy, what you and David are going through!But I am so happy that the MRI shows dramatic improvement. Woo-hoo! You and David are such fighters. I also understand your worry about David staying in his apartment. But I know that for David, it has to be good medicine.

I will continue to keep you two in my prayers about your and DAvid's decision to have the BBBD. What a tough decision. Being a parent of an adult child, it's hard not to put undue pressure on what you think your child should do.

I envy your ability to get away in the mountains with your horse. I really need to find a way to escape for a few hours. We really can't leave our son alone for any length of time, and we don't have family who live close by. I go to the Y a couple of times a week, but like you, I love nature. And winter here in Ohio is not the best time to get out in the woods (too muddy).
In fact, this is one thing I am fighting: depression. The gray skies really get to me. And I find myself wishing we could be with our daughter in Jackson, Wyoming, where we have spent the last three winters since we retired. We love the winters out there: the blue skies, mountains, and snow.

Today I have an appointment with a bereavement counselor who is associated with Hospice. At first, I was hesitant to call, as our David is not ready for Hospice services, not by a long shot. I had tried to get in with another counselor recommended by our county American Cancer Society rep, as I only want to see someone who has experience with families dealing with cancer. But this counselor wasn't taking on any new clients. So as a last resort,I called Hospice to ask if they could recommend someone.

Turns out, they have a service called Generations of Life Bereavement center. You don't have to qualify for Hospice services to get help. When the counselor called me to make an appointment, I was so surprised that I could go there, at no charge! Even though our David is doing OK...stable...I still grieve so much for what this illness has cost him in terms of his personal life and independence. And for what it has cost us, in terms of peace of mind. On one hand, I want to go, but on the other I am already getting nervous. I feel once I step in that door, it will be like the damn will finally break and all this pent up pain will gush out. I guess that's what I need to do.

Thank you for your updates. And hugs and prayers to you, and to all of those dealing with this terrible monster.

sadinholland
Posts: 231
Joined: Apr 2011

Wow Cindy! What a lot to take in!I know you will do this anyway but pray and ask God to guide you in helping you and David make the right decision about the BBBD treatment and trust and believe that you and David are doing just that. Not starting David on Avastin right now sounds like a good thing, right? Did they say anything about increasing his seizure meds? Thanks for keeping us updated. I am praying praying praying! And so thankful that they are seeing DRAMATIC improvement!!!!

sadinholland
Posts: 231
Joined: Apr 2011

d

Raani01
Posts: 68
Joined: Mar 2011

Cindy,
I am very happy to hear the wonderful news (I saw the MRI scan in the expression area and the improvement is huge!).
Also, we all learn that seizures are not always an indication of tumor growth which I always thought was the case. I,along with lots of people are sending prayers and positive energy on your way to help you make the next right treatment for David.Let's we all conciously try to find the goodness in each day of our life and enjoy it because the bad/sad are there , we don't need to try any hard to find it. right?!
Be strong,
Raani

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

Hi, Connsteele.

I wanted to reply to your post but I couldn't remember which topic you posted this. I finally found it.

I wish that you had an escape like riding or anything that would give you a break, even if it's only for a few hours. I felt so sad to read that you had to give up your winters in Wyoming with your daughter. I can see the wide open spaces, the snow and the mountains, and I can feel how your heart must long to be there. I have a love affair with mountains.....

How did your appointment go with the bereavement center? I hope it was helpful. I go to a group called Celebrate Recovery. It's for people who have hurts, hang-ups and habits....who doesn't? :) I guess there are some lucky people who don't....

I originally went because back when David was on Temodar and doing so good, my pastor thought it would be helpful for me to think about others and their issues and try to help and encourage others who are having issues. So I went...and loved it. The small group that I'm in has been so incredibly supportive. I feel so loved. I talk a lot about my feelings in that small group and even though they don't have answers, just the fact that they listen and let me talk it out is a huge help.

I'm like you...anything with the words "hospice" "palliative" "advanced directive" makes me shy away. I just don't feel like we are near there and I don't want to be involved with anything that would make David feel like the end is near. We are having a rough time right now, but there is a lot of fight in us. And in some areas, David is really doing well.....

You said that the dam might break, and your pent up pain will gush out...and you thought that maybe you needed that. I think that maybe it would help you. I've had big meltdowns in my small group where I cried so hard that it was hard for them to understand what I was saying. They all cried too. We sat in a circle and passed a box of kleenex around and every lady there was crying her head off too. I looked around and said something...I don't remember what....something like, "I'm a hard act to follow..." because the next lady was supposed to share about her issues...and we all laughed and cried at the same time. There was something so amazingly therapeutic about it....I hope that you have the same experience when you go to that center.

I'm praying for you and your David....may God grant you the strength and peace that you need to keep up this fight. And always praying for healing for all of those who are fighting cancer.

Love and blessings,
Cindy

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

Wow Cindy thats wonderful news

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

Cindy,

I have not been on here in a few days, and when I started reading this I started crying at my desk at work. However, by the time I got through to the end, I wanted to jump up and down with happiness! I will continue to keep you and David in my prayers! I am so grateful that his MRI looks so great!!!! Seizures can be maintained with medicine. My daughter had them until she was 2, and thankfully grew out of them! I had them one time during my treatment when they weaned me of the Decadron too fast! I will pray that David's is controlled with the meds! I am so happy for you, and enjoy the time in the mountains with your horse!!

Love and prayers heading your way always!!!!

Michelle
Mobile, Al

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