I really gotta concentrate on living right now and getting back home where I belong.

Boy this stem cell is tough. It’s really really tough. I have had to go through some really tough things before but I think this one is at the top of the list. I mean, I was prepared before I got here for this that is was going to be a rough road but sheesh it is exceeding even my pre expectations. I always like to consider myself a really prepared individual but I think it is impossible to completely prepare for something like this. You don’t really know, despite all the words, how it is actually going to be until you start doing it.

Let starts off with the first part. I am affectionately going to refer to it as the cannonball chemo part of the process. This is the part where they give you day after day of marrow ablating chemo to prep you for the process. I guess most people get two drugs. I got three. I guess most people take about 5 days to complete this process. Well I got so much chemo that it ended up being 8 straight days before any “rest time” was upon us. I asked why I got all the extra over the usual crowd. The answer was that they just knew I could handle it because I was so tough. Ummm. Thanks? But eek no thanks at the same time.

Of course. I did it anyway because it was what was recommended. I am one of those patients who tried to tread the line between following all directions and still advocating for myself. It’s a tough line sometimes. Ive noticed over the years that medical professionals are definitely not used to patients that are knowledgeable and engaged. Sometimes I feel like they see that as a threat and that they are just being inappropriately judged and questioned. Well that is definitely not the case in my case but it hurts my heart a little to think that maybe some medical professionals are not confident enough in the treatment they are giving to be threatened by questions. Personally I totally dig it when a patient is an active and knowledgeable and engaged team member. This totally makes my day. I wish everyone felt the same way. I think it would help us to better care for patients. It just makes the whole thing go better when you don’t just have a terrified submissive patient that doesn’t totally understands but just goes with what you say. I say this is never a good scenario and it is our job to reinforce to the patient that they, in fact, are the captain of their medical team and in charge of their bodies and their care, It has to be a balance of trust and communication. It is so important.

I get it that there are times when doctors just need to act and tell you what to do, especially in an emergency situation. Me back in December, head full of tumor and mush, suddenly collapsing after not being able to even remember her name or birthday and underwent emergency brain surgery. Scary crap and I get that there wasn’t really a lot of opportunity for my input at that time because I wasn’t even conscious at the time. Thank goodness the doctors took over and convinced my husband to stay put so they could forward with my surgery, get a sample and abruptly begin to halt the seizures and swelling that were going on in my beautiful but tortured brain. Thank God they did or I wouldn’t be here right now. Very grateful for that.

Sorry, back to present times again. I am nearing the point of the end of the inpatient stem cell journey. My counts have already done their plummet. My hemoglobin is down to 7. My platelets are barely measurable and I am super exhaustedI I had a scary time trying to go septic just days ago. Like, we could have been done septic. Yikes.

Well, I am very happy and grateful to report that today is starting in to the final path to the end of my hospital stay. Counts are trying to go back up. I am starting some cell stimulating injections and they say I could go home in as soon as a week. I can’t walk around in the hall anymore because of some opportunistic infections and that is frustrating because i want to be a part of my own recovery. But, it has given me time to sit in my room isolated and have time to write. See? The silver lining is always there if you look hard enough. I always try to maintain my not foolish but productive positive attitude. I really think it helps.

So, here’s to the next few days until i can get home to see my family, my pets, and my friends, and maybe even sleep in my own bed. I know that there will be no parties or large gatherings for months. But I’m doing this now so there can be later. Wish me luck!

Dr. Katz