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.

May - the official month of brain cancer awareness.

It's a disgusting disease that does not discriminate. Spread the word please. Too many people have brain tumors for there to be no cure or advances. Now that I know May is the official month, next year I am fundraising and doing what I can to make it known.

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.

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! 

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!!