I am not quite sure where to begin this post since it’s been the longest most challenging two months since Dan’s diagnosis. To make a very long story short, Dan spent the last month or so in hospitals. If you want to hear the details, keep reading...
The first week of April, Dan took his second round of chemotherapy. He did fine although he did seem more tired than usual and was getting weaker and weaker by the day. The weakness got so bad that he could barely walk with his cane into his PT appointments. He was even too weak to attend Carson's 5th birthday party which was hard for all of us. I was definitely worried but waited it out until his appointment on April 12th which was just a routine MRI and oncology appointment. He checked out fine in terms of his blood work and his MRI was pretty stable from the last one. We talked at length to his team about his weakness, tiredness and also starting him on a medication called Avastin. I actually left the appointment feeling optimistic and hopeful because I have read at length about this drug and how positive patients have been responding to it. Of course my mood came to a screeching halt not even 15 minutes later when we got a call from his doctor while waiting for our car. We were told that radiology had called and found two intracranial bleeds on the MRI and he had to be admitted immediately. Dan spent the next week at Hopkins being observed and going through test after test. He had to be taken off the blood thinners he had been taking for his pulmonary embolism, and to make sure he doesn’t get any more clots that can spread; they inserted a filter into his vena cava artery to prevent any clots from moving. He was also no longer a candidate for Avastin due to the bleeds and his doctor said we had to stop treatment for now and wait and see how things progress. Talk about bad news.
He spent a week in the oncology unit and became even weaker. At this point, it just wasn’t safe for Dan to continue on the chemotherapy plan and our next step was to get him into an inpatient rehab facility. The unit at Hopkins is so small that we had to look elsewhere. I toured a few in the area and have my friend Nicole to thank for tagging along and helping me make yet another big decision. I was depressed just looking at places and kept having guilt as if he would be mad at me for not picking the right one! I know it sounds silly but as his caregiver and wife, his needs are most important. So we decided that the unit at Sinai was the best fit for him and it was 2nd best to the care he would get at Hopkins.
The rehab program was pretty aggressive with over 3 hours a day of therapy (PT, OT, recreation therapy, speech, etc) so Dan was kept very busy. He was also busy with visits from family and close friends, in addition to socializing with other patients. We were all anxious for him to come home since the drive to Sinai was wearing on all of us and the kids were really missing him. The team at Sinai recommended he go to a sub-acute facility instead of coming home since he was still pretty weak and they were concerned he wouldn’t get the care he needed with me also having to take care of our boys. I knew he couldn’t tolerate not coming home so I made the decision to discharge him to home as long as he was approved for home care. To prep for his homecoming, his step brother (who might I add has been so helpful and kind during this time) came and installed shower safety rails and a new shower head to make Dan’s life a little easier and on Friday, May 4th he was finally home.
It didn’t last too long.
His first night home from rehab was extremely difficult. It took me roughly 3 hours to transfer him from the chair to his wheelchair to the bed. His legs just didn’t want to move and the more and more we tried the more and more tired he became. After many tears from us both being so upset and just tired, I got him into our guest bed at 12:30 am. His home care was set up to start the next day so after taking the boys to Carson’s tball game while Dan’s dad came to stay with him, we came home a few hours later to Dan on the floor with the nurse. The boys were kind of scared not knowing why their daddy is on the floor and couldn’t get up. He had slipped out of his wheelchair trying to transfer on to the couch. The nurse told us that she had to call 911 to help get him up since our home was just too unsafe for him at this point. I sort of disagreed but what I was to do when I needed someone to lift him up safely. The ambulance transported him to Hopkins and he was admitted a few hours later. He spent a few days lying around until they decided to admit him into inpatient rehab again but this time, he got into the Hopkins unit. On May 8th, he was moved into the rehab unit and once again began intense rehab therapy.
He spent a little over a week in rehab this time and the kids joined me on the weekend to hang out with him as long as possible. We were at least able to take him on walks and enjoy the weather. We also celebrated our 7th wedding anniversary in his hospital room. That was extremely difficult for both of us but I wouldn’t let his cancer keep us apart so I brought dinner to him.
Dan came home on Friday, May 18th and each day has become more and more challenging. He is in a lot of muscular pain now, has pressure in his head again, has had some vomiting episodes (sorry if TMI), and has no appetite. Needless to say, I am worried sick. It is so incredibly hard watching the love of your life go through this and even more hard seeing my kids with him. Dan is currently immobile and transfers to and from a chair and bed are very difficult. We now have a hospital bed in our room and boy do I hate not being able to sleep next to my husband at night.
Like I have said before, our former life is unrecognizable.
After speaking to his oncology nurse today, they want to see Dan tomorrow morning due to the onset of new symptoms. He will get a scan and she said if they see anything abnormal there is a 60% chance they will admit him again.
Please please please continue to keep Dan in your thoughts. And again, THANK YOU all for reading and keeping up with our journey.
Wednesday, May 23, 2012
Thursday, May 3, 2012
May - the official month of brain cancer awareness.
A great read.
I have been doing a lot of reading lately since I have so much spare time (said in my best sarcastic voice) and I just had to share my thoughts on a book I finished last night. And I am not talking about the Fifty Shades of Grey trilogy which I've been reading too and has taken my mind off cancer! What I do is read a fun book like Fifty Shades and than a serious book like The Anti-Cancer.
The book is called Walking on Eggshells and was given to me two weeks ago from one of the oncology social workers (Amy Sales) at Hopkins. She told me she wrote it for caregivers and handed it to me as a gift and said, "if you like it, pass it on" and well, I really liked it so I wanted to share. While Dan was at Hopkins that week, she came to see us a few times and gave me some great advice like needing to give myself a minimum of 60 minutes of day for "me time" which I have yet to do. I really needed this book. I sat down last night and started at 9 and finished at 10:15. It's a quick and easy read and I highly recommend it to anyone in my shoes.
Thank you Amy for your gift. I will definitely need to refer
back to it as we head further along on this journey.
Excuse me while I get back to Fifty Shades....I promise when I am done reading it I will update on our last 3 weeks of Dan being hospitalized. It's been a long road so far and he comes home tomorrow. Woohoo!!
The book is called Walking on Eggshells and was given to me two weeks ago from one of the oncology social workers (Amy Sales) at Hopkins. She told me she wrote it for caregivers and handed it to me as a gift and said, "if you like it, pass it on" and well, I really liked it so I wanted to share. While Dan was at Hopkins that week, she came to see us a few times and gave me some great advice like needing to give myself a minimum of 60 minutes of day for "me time" which I have yet to do. I really needed this book. I sat down last night and started at 9 and finished at 10:15. It's a quick and easy read and I highly recommend it to anyone in my shoes.
I really felt connected to the book and as if Amy was talking right at me and giving me hugs along the way. The book confirmed that all of
our feelings thus far are totally normal. It gave me so much great advice on
all aspects of dealing with a life threatening illness like cancer and the key
takeaways for me were how to handle my feelings and emotions with not just Dan,
but also with my friends and family providing support. I also am taking her
advice on how best to talk to my children about Dan’s diagnosis. The good news
is that it validates that what I have done with them so far is the right way to
do it!
Excuse me while I get back to Fifty Shades....I promise when I am done reading it I will update on our last 3 weeks of Dan being hospitalized. It's been a long road so far and he comes home tomorrow. Woohoo!!
Monday, March 26, 2012
Another setback for Dan.
Dan had another set back two weeks ago. Just when he was gaining more independence, cancer had to kick him back down and remind him it was still within him. My feelings and emotions are all over the place. It's like constantly living on a roller coaster and it sucks.
So here's what happened. A week after my last post, Dan did his first month of chemo (remember it's a double dosage of what he was taking before and he takes it 5 days out of the month for 6 months) and totally rocked it. No nausea or anything which surprised us both. But he was extremely fatigued. More than he ever was even during radiation. Than on the night of Monday the 12th, he fell asleep so early which is so not like him after napping all day.
The next morning I tried to get him up to shower since I had to leave earlier than normal to make it to a meeting. So it took me a good 30 minutes to get him up that morning and right before getting into the shower he told me he felt like he was going to fall and the next minute he fell into my arms while shaking. I could not see his face since I was bear hugging him to keep him from falling but when the tremors stopped I asked him what that was and he said "I was just a little off balance." He was acting like nothing happened and ready to get into the shower and he realized his left leg didn't work. He wasn't upset or anything which led me to believe something more was going on. I got him seated on the side of the tub and it happened again and this time I knew. I knew he was having seizures. I held him so tight so he wouldn't fall backwards into the tub. It was such a scary moment that felt like 5 minutes even though it was probably 90 seconds since his legs were literally giving out and I could barely hold him up. My son Carson (almost 5) walked in during this scene and said so innocently "mommy why are you hugging daddy like that?" and I told him to go get my phone because I couldn't let him go. Once it stopped, I called the on call number we have at Hopkins who instructed me to call 911 for help asap. Dan was now seated on the bathroom floor and couldn't move. I couldn't lift him. His left leg didn't work. And he was falling asleep. I called our dear neighbors who have rescued us more than once in the past 6 months to come and get the kids out of the house since an ambulance was on its way. (Thank you Robin and Kevin!) Tyler (2) was still asleep thanks to daylight savings and didn't know anything was even going on.
The ambulance took him straight down to Hopkins and after a day in the ER, testing, and visits from everyone on the team (neurology, neurosurgery, medical oncology), they decided to admit him for further testing. He had a strange rash appear all over his body, another seizure during that day, and major pressure in his head again.
The next day (Wed), his headaches finally went away by the afternoon since they had increased the dosage of all of his meds. He had been having a lot of difficulty with foods and chewing so the speech therapist did a speech and swallow study. We learned that his issues are due to muscle weakness on that left side so she gave him some tips to help him through and wants him to focus on soft foods as much as possible. Dan loves to eat so seeing him struggle, even with his favorite foods like crabcakes, ribs, and Chipotle burritos is enough to bring tears to my eyes.
He also had a CT scan of his chest and abdomen that day which than led to having to have another test called a VQ scan of his lungs the next day. He continued to have this strange rash so they ordered a spinal tap to rule out any sort of infection. Oh boy that was fun. I had to stay in the room and comfort Dan who was shaking uncontrollably due to nerves. I never want to go through that again and I know he doesn't either since his back was in pain for a week!
On Thursday, we found out the preliminary results of the spinal were fine. And the VQ scan confirmed that Dan had pneumonia and a blood clot in his lungs. We were so confused. There was not one sign of either one of these issues. I have diligently read all the paperwork we have been given about things to look out for like shortness of breath, difficulty breathing, strange cough, etc and he had not one of these symptoms. If he didn't have a seizure that day, the blood clot would have never been found and if not treated, it's life threatening. That's some scary stuff to be told. I now have the pleasure of giving Dan twice daily injections of blood thinners. He really thinks I get joy out of it but I promise I hate it as much as he does.
Finally on Friday by dinner time after seeing dermatology again for the rash, OT and PT, he was released to go home.
Now what?
Well, we are pretty much back to square one as if Dan just had brain surgery. He is very weak and fatigued. He cannot be alone so someone has to be here with him at all times. His left leg is moving but he has to concentrate hard when walking. He used to only use his cane when out in public and now he can't go without it. He has foot drop so he has to wear the brace at night and be very careful to not trip over his left foot when walking; and we've had a few close calls which is why I have to stay close when he is up and moving around.
He also has barely any motion in his left arm. He was making so much progress in OT and now it's like starting over again. He also has wrist drop so he has a brace for the arm/wrist/hand too for night sleep. It is supposed to help with stretching the muscles especially the fingers that don't want to stay open.
OT/PT begin again this week and his next MRI is scheduled for the 12th. Hopefully by then we have some more info on the tumor that is being treated.
So to sum it up, it just f%$cking sucks. Plain and simple. No sugar coating. No other way to explain it. I can't help but question what we ever did to deserve this to happen to Dan. He is such a great person and I am not just saying that. It took me so long to find my soul mate and cancer has to do this to him. WHYYYYY???? And my two little boys. I just have nothing but tears when I think of them and how much they love their daddy.
I will end this post with a picture of my boys - all 3 of them. You can click on it to see it larger. This is how it used to be. So much fun and full of life. We were always laughing! This was our family vacation on our long road trip to Florida in July. As soon as we got back, the headaches began.....
So here's what happened. A week after my last post, Dan did his first month of chemo (remember it's a double dosage of what he was taking before and he takes it 5 days out of the month for 6 months) and totally rocked it. No nausea or anything which surprised us both. But he was extremely fatigued. More than he ever was even during radiation. Than on the night of Monday the 12th, he fell asleep so early which is so not like him after napping all day.
The next morning I tried to get him up to shower since I had to leave earlier than normal to make it to a meeting. So it took me a good 30 minutes to get him up that morning and right before getting into the shower he told me he felt like he was going to fall and the next minute he fell into my arms while shaking. I could not see his face since I was bear hugging him to keep him from falling but when the tremors stopped I asked him what that was and he said "I was just a little off balance." He was acting like nothing happened and ready to get into the shower and he realized his left leg didn't work. He wasn't upset or anything which led me to believe something more was going on. I got him seated on the side of the tub and it happened again and this time I knew. I knew he was having seizures. I held him so tight so he wouldn't fall backwards into the tub. It was such a scary moment that felt like 5 minutes even though it was probably 90 seconds since his legs were literally giving out and I could barely hold him up. My son Carson (almost 5) walked in during this scene and said so innocently "mommy why are you hugging daddy like that?" and I told him to go get my phone because I couldn't let him go. Once it stopped, I called the on call number we have at Hopkins who instructed me to call 911 for help asap. Dan was now seated on the bathroom floor and couldn't move. I couldn't lift him. His left leg didn't work. And he was falling asleep. I called our dear neighbors who have rescued us more than once in the past 6 months to come and get the kids out of the house since an ambulance was on its way. (Thank you Robin and Kevin!) Tyler (2) was still asleep thanks to daylight savings and didn't know anything was even going on.
The ambulance took him straight down to Hopkins and after a day in the ER, testing, and visits from everyone on the team (neurology, neurosurgery, medical oncology), they decided to admit him for further testing. He had a strange rash appear all over his body, another seizure during that day, and major pressure in his head again.
The next day (Wed), his headaches finally went away by the afternoon since they had increased the dosage of all of his meds. He had been having a lot of difficulty with foods and chewing so the speech therapist did a speech and swallow study. We learned that his issues are due to muscle weakness on that left side so she gave him some tips to help him through and wants him to focus on soft foods as much as possible. Dan loves to eat so seeing him struggle, even with his favorite foods like crabcakes, ribs, and Chipotle burritos is enough to bring tears to my eyes.
He also had a CT scan of his chest and abdomen that day which than led to having to have another test called a VQ scan of his lungs the next day. He continued to have this strange rash so they ordered a spinal tap to rule out any sort of infection. Oh boy that was fun. I had to stay in the room and comfort Dan who was shaking uncontrollably due to nerves. I never want to go through that again and I know he doesn't either since his back was in pain for a week!
On Thursday, we found out the preliminary results of the spinal were fine. And the VQ scan confirmed that Dan had pneumonia and a blood clot in his lungs. We were so confused. There was not one sign of either one of these issues. I have diligently read all the paperwork we have been given about things to look out for like shortness of breath, difficulty breathing, strange cough, etc and he had not one of these symptoms. If he didn't have a seizure that day, the blood clot would have never been found and if not treated, it's life threatening. That's some scary stuff to be told. I now have the pleasure of giving Dan twice daily injections of blood thinners. He really thinks I get joy out of it but I promise I hate it as much as he does.
Finally on Friday by dinner time after seeing dermatology again for the rash, OT and PT, he was released to go home.
Now what?
Well, we are pretty much back to square one as if Dan just had brain surgery. He is very weak and fatigued. He cannot be alone so someone has to be here with him at all times. His left leg is moving but he has to concentrate hard when walking. He used to only use his cane when out in public and now he can't go without it. He has foot drop so he has to wear the brace at night and be very careful to not trip over his left foot when walking; and we've had a few close calls which is why I have to stay close when he is up and moving around.
He also has barely any motion in his left arm. He was making so much progress in OT and now it's like starting over again. He also has wrist drop so he has a brace for the arm/wrist/hand too for night sleep. It is supposed to help with stretching the muscles especially the fingers that don't want to stay open.
OT/PT begin again this week and his next MRI is scheduled for the 12th. Hopefully by then we have some more info on the tumor that is being treated.
So to sum it up, it just f%$cking sucks. Plain and simple. No sugar coating. No other way to explain it. I can't help but question what we ever did to deserve this to happen to Dan. He is such a great person and I am not just saying that. It took me so long to find my soul mate and cancer has to do this to him. WHYYYYY???? And my two little boys. I just have nothing but tears when I think of them and how much they love their daddy.
I will end this post with a picture of my boys - all 3 of them. You can click on it to see it larger. This is how it used to be. So much fun and full of life. We were always laughing! This was our family vacation on our long road trip to Florida in July. As soon as we got back, the headaches began.....
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