Two months later.

And I am back. I have many posts written in draft form but never able to post them. The main reason is that they were painful to write and I was so afraid that Dan would read them. I am sure many are asking why would I be afraid of Dan reading my blog? Well because he doesn’t realize he is dying. And the things we have had to witness him go through in the past two months have just been awful and nothing I would ever want him to read about when his brain can’t process reality anymore.

The absolute hardest part of this whole experience is that he doesn’t know he is dying. While that truly is a blessing for him, it’s excruciatingly painful for me. I can’t say goodbye, I can’t tie up loose ends with his help, I can’t talk about anything that refers to dying.

My sweet sweet husband is lying in his hospital bed in my bedroom sleeping now up to 18 hours a day, not eating (other than a few spoonfuls of ice cream every now and again), and now barely communicating with me.

I love him with all my heart and I tell him 100 times a day how much I love him.

Please do the same thing with your loved ones. Life is way too short.

Still Fighting.

Sorry I never updated since Dan’s last appointment.  Life has been super busy with Dan and the kids the past month. Carson graduated from pre-K and had a bunch of festivities, both kids have had birthday parties to attend, Carson also had t-ball which finally ended last week (thank goodness for a break), and Dan was admitted again that day of his last appointment due to his symptoms and complaints. The CT scan showed the brain tumor was stable but with his back pain being unbearable, they wanted to get an MRI of the spine and the brain and the only way to do that urgently was to admit him.
So he spent another 5 days at Hopkins trying to figure out the cause of his pain while I juggled work, the kids, and life in general!  His MRI scan again showed the brain tumor area was stable which means there is no tumor growth at this time although still some swelling hence why he still has to take the steroids. The spine MRI showed 3 compression fractures in his back and we have no idea how that could have happened. And since it was a holiday weekend we had to wait for someone to come and fit him for a brace. He has to wear this lovely TLSO brace that looks like a body cast. He is not happy and hates this thing.
The best part (if you can even say there is anything good about being at the hospital) was the visit he got from our dear friend Jody. I have not seen Dan smile like he did that day in months when he saw her walking into the room. Jody and Lee moved to Seattle for her job a few years ago and we only get to see them a few times a year so while she was here on business, she came by for some hugs. I wish I would have gotten a picture of his face. I know she saw it too and it’s one of those sweet moments that will stay with me.
Once the TLSO arrived and he had a day to wear it and get comfortable, he was discharged. That was on May 29 and on Saturday June 2ndhe started home care (for the third time!). Our house has been like a revolving door between nursing, speech, OT, PT, and an aide coming in and out all week long but the care has been outstanding. We are using Bayada and I can’t say enough about the service and compassion they have provided to our family. I have seen such great improvements in his strength the last 2 weeks with PT coming 3x per week and I am sad that insurance can’t cover it much longer. The OT is very concerned about his wrist though since it’s in constant pain. And another new symptom this week is a pain in his lower belly/groin area. I am diagnosing it as a hernia.
So all in all things at home have been stable. He is supposed to have a follow up appointment either later this week or next so I should know more about his hernia and wrist soon. I told him last night that I dread going to doc appointments now. Getting him out of the house and into the car is not so easy anymore and whenever he has a new issue he ends up getting admitted. I am praying this time that it’s something that can be dealt with in the office.
I also wanted to add that Dan is so blessed with such great friends. They visit often to sit with him, talk about things other than cancer, play with the boys, and even play poker! Dan’s childhood friend Damon was also so kind enough to install a ramp on our house for easier access. Prior to the ramp I had to put in calls for help when it was time to get him in the car for appointments. Thank you Damon (and Brian and Chris) too!
I will end this post with one I recently put on Facebook. Dan getting cuddles from baby T. He loves it and it makes him cry and than it makes Tyler constantly ask “why you crying daddy?”

Longest month(s) ever.

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.

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…..

Where we are now.

This is going to be very long since I realize I haven’t touched my blog since Christmas day. I am so sorry to those of you who have reached out for updates. I have tried so many times to sit down and write but either get too emotional to finish or interrupted. I have no time for myself anymore and it takes more than the 5 minutes I have to put my thoughts down. My parents left in early January and while they were here, they took care of Dan while I took care of everything else (house, 2 kids, working, etc). Now I have no help so time alone is few and far between these days. Did I mention our house is also on the market so I have to constantly keep it clean enough to be shown? We have had a ton of showings but no bites yet. Oh and this decision to move was made before his diagnosis so we felt like why stop now. Yes we are crazy.

And to make things even more exciting, I potty trained Tyler my 2 year old right after the new year, I broke out in a full body rash that ended up being stress related (hmm ya think I am stressed!), Carson had pink eye last week, and has had some tooth issues going on the past few months where he is waking up at night crying in pain. A few dental appointments later, a mini root canal was done today to save the tooth since it’s a back molar that won’t fall out until he’s probably 10 and is needed for spacing so it had to be saved. Adding to my chaos, I should also mention that I recently discovered I have an incisional hernia. When I saw something bulging, I called my sister immediately (she’s a nurse) and asked her what is growing out of my belly. She assured me it had to be a hernia and recommended a surgeon. I saw him the following week and he confirmed that my appendectomy incision from last summer didn’t heal properly and it can only be corrected through surgery – yeah not an option for me right now so I have to live with it and see how long I can go without it getting worse.

So moving on….Dan did lose all his hair right after my last post and he finished up his radiation/chemo treatments on January 24th. We were both so happy to put an end to the daily drives to Hopkins – at least for now. We had lots of help with driving him for a few weeks while I was juggling work and home and we want to thank everyone who pitched in. (Jodi, Cara, Dawn, Jeff) I know Dan enjoyed the company and lunches too. Thank you everyone. I hope to be able to pay it forward some day too.

After discharge on the 24th, Dan had 4 weeks to rest before his follow up MRI and appointment with his medical oncology doctor. Although he didn’t get fatigued or feel any side effects during radiation, we were told he still may feel it and it could last up to a few months. They were right. About a week later he was exhausted. He did have to continue weekly bloodwork appointments which could be done locally and PT/OT as well but for the past 4 weeks in between appointments, he napped, watched TV…a lot of TV, spent time online (many of you see him all over Facebook I am sure, lol), and just hung around the house. His blood counts have been looking great each week which is good news and even during radiation they were shocked at how great the numbers were each week. He does have a pretty bad case of thrush and has been on a Nystatin rinse for a while now but finally got an oral prescription to hopefully take care of it or at least get it to calm down. Apparently thrush is pretty common when on steroids and going through cancer treatments. He has had some issues with chewing food which may be due to the thrush or radiation effects too. I am hoping that corrects itself too. He has been living on hearty soups lately that are easier on him since he can’t really eat thick meats or anything.

In terms of his motor skills, his PT thinks he has reached a plateau in terms of his leg strength. He is able to walk without his cane but still uses it for safety reasons since his legs have lost so much muscle that he does get tired easily. His arm/hand is another story. He is now working more with his OT to try to get that area stronger. He does have movement but it is very limited, meaning he cannot dress or undress himself, cut food, tie his shoes, and just do all the daily things we probably all take for granted. It honestly breaks my heart into pieces seeing him struggle and ask for help. He needs me to help him and I do everything I can to make it easier on him. I know he wishes he could live normally again and I just hope and pray his strength continues and he can learn to do some of these things on his own to feel more normal. I try to get him to at least try some things but he gets frustrated which makes him mad which turns to anger that this is happening to him.

On Thursday the 23rd, Dan had his MRI and follow up appointment. We were both very anxious to hear about his progress and next steps. We were warned that the MRI was just a new baseline and wouldn’t tell us much this soon. The area that was treated is very aggravated right now so looking at the MRI, they explained that it looks worse and as if the cancer has progressed. A few years ago, they would have done surgery again only to find a bunch of dead cells. Good news is that the mid-line of Dan’s brain is now centered again as opposed to slanting to the other side while being pushed by the tumors. We also saw some swelling in there which is why Dan is still on steroids. I was getting concerned since they wanted me to wean him off of them but every time I try, he complains of pressure. Also, Dan is supposed to get an MRI every 2 months going forward but Dr. Holdhoff is bringing him back in 1 month to see if we can see any more progress and if the swelling has decreased. I have to say it’s hard to hear and see an MRI that looks so awful even though we were pre-warned.

During that same appointment, we found out that Dan is going to start 6 months of chemotherapy this week. He will take double the dosage of what he had last time (Temodar) which will be taken at night before bed (orally thankfully) in addition to some anti-nausea meds since it’s strong enough to make him sick. He has to take it for 5 days in a row, than 3 weeks off. So it’s basically 1 week per month on chemo. We are now waiting to receive it in the mail and as soon as we get it, he will begin. Apparently they only do it via mail order. Who knew?!

So that is the short version (can you believe that one?) of where we are now. There is always so much more to share and explain. Thanks for keeping up with us and all the outreach. It means so much, more than we can ever put into words.

One last thing. There are no pictures in this post because I am too lazy to download all of them. I take pics non stop, ask my family. They are sick of me.

Week 3 done and Christmas.

Since I never did a post all about the boys as promised, this one will have to do!

Update on week 3 of Dan’s treatment
Dan completed his 3rd week of treatment and once again, did great. We won’t find out his lab numbers until Tuesday since they are closed tomorrow for the Christmas holiday. One thing that did happen this week is his hair loss has begun. I noticed it immediately on Thursday when I came home from work and he was eating dinner at our breakfast bar which has lights overhead. His hair just seemed much thinner in the area being treated. We knew it was bound to happen but just no idea when. He texted me later that night when I was having dinner with friends that he is noticing it too since it’s often in his mouth and on his phone. Not even 4 days later and he now has bald patches all over. He is just so positive about it all and is really taking it in stride. He is not shy about it and even let me take some pics to further document his journey. Here is your warning.

If you are skiddish about seeing stuff like this, don’t look because I am posting a pic of what it looks like so far.

Oh and a big milestone this week also happened on a positive note, Dan was able to shower today STANDING UP! For the first time in a month he didn’t have to use the shower seat. So proud of him.

Moving on to Christmas
The kids had a ton of activities going on at school for the holidays. Both of them participated in the annual holiday show which is just too cute for words. Tyler’s was a matinee show followed by some entertainment for the kiddos and Carson’s was an evening show.

Tyler was supposed to shake his bells and sing jingle bells but had stage fright so instead he put on his own show at home for just us!

Carson wanted to be the center of attention and instead of singing with this friends, he put on his own show of bouncing around, laughing, frowning, and pretty much every other personality you can have but all in a 15 minute timeframe… you can see his friends cooperating while he lies flat on his back on the stage. Atta boy!

Christmas came so fast and the day was just magical for the boys. It was also so nice to have Gammy and Poppy here to help out with opening all the boxes and assembling everything – which is something Dan used to do. (((insert sad face here))) They got so much great stuff and it was so great to have them side tracked on just a day to play play play!

Here is our living room right after Santa left, so calm and peaceful…..

And here it is when the tornado came through!

So all in all, it was a really nice day (although I am exhausted). I had a few moments of sadness especially when I was helping him get dressed this morning. I gave him a big hug and told him we just need to be thankful he is alive right now to celebrate and we will look back on this time as just a bump in the road.