NON-HODGKINS LYMPHOMA BLUES, PART TWO

Tuesday, May 11, from St. Joseph's Hospital to Cerenity Care Center - Grrrrr. Internet access has been totally unacceptable for me, first at St. Joseph's Hospital and now at Cerenity Care Center in White Bear Lake. When will everyone realize the importance of instant internet access? No wonder we are falling behind other countries in technology!

It's late at night, about 3:00 a.m. on Tuesday May 11. So far I've awoken several times in this strange room in this place I've never been before. The oxycodone makes me sleep soundly, then I wake up. The pain med is for my sciatica pain. My brain tumor doesn't hurt at all, oddly enough. I suppose it's because of the location. It's mostly on the occiputal lobe of the brain and partly on the parietal lobe. No headaches,  no seizures, and I still have excellent communication skills, although felt confused and disoriented for several days because of the brain swelling. The doctors put me on steroids to bring that down.

The bad part is that the doctors are telling me that it's an aggressive tumor. On the other hand, I live in a time of great medical advancement. Still, as we all know, ya gotta die from something. Everyone does.

Now back to my hospital internet experiences or lack thereof. Of course I know that the medical care is far more important than whether patients get internet access. Still, for a hospital to be entirely up to date, it's absolutely necessary. Allina seems to be more advanced in this area than HealthEast, as Allina already has EHR (electronic health records) implemented into it's hospital and clinic system. HealthEast is working on it.

As far as my own medical issue with what I'm told is this aggressive stage 3 or stage 4 brain tumor, I'm at an excellent hospital for that. It's one of the best in the country. It houses one of the few Cyberknife Centers in the United States. It's got one of the best neurosurgeons in the United States. His name is Dr. Schwerkoske. His office is in Woodbury, MN.

I left St. Joseph's hospital yesterday afternoon about 4:30 p.m. My coworker Julie Kamrath picked my up in my room at St. Joe's and off we drove to White Bear Lake. That's where I live, but we drove right on by to Cerenity Care Center on Florence Street. I currently live near I694 and McKnight Road in White Bear Lake. 

Julie drove, of course, as it was her vehicle and as I am not allowed to drive yet. I was supposed to know where I was going, as I'm very good at directions. Unfortunately, the brain tumor has made me deviate from that ability somewhat. We got lost. Julie says she always gets lost. So there we were, lost and disoriented in my own home town of White Bear Lake. Too funny. (At least I still have my sense of humor!)

We finally found the place and went on in. I'm really glad Julie was with me so I didn't feel all alone in a strange place. She's such a good friend. She really cares.

Unfortunately, Julie had to leave to go home to her family. Charles and Becky were both at work. I am now alone in an unfamiliar place where I don't know anyone and where I am dealing with a major medical issue. 

My RN tonight is probably around 40 years old or so. She has only been a nurse for 15 days. She just graduated from nursing school. She's medically in charge of me on this dreary gloomy evening. Very scary for me, as she didn't seem to know what she was doing. She had to keep referring to her charts and books. She seemed to be a rather gloomy person, too, at least on that first evening when everything was coming down on me at once. To be fair, I'm sure she wanted to do a good job. On that first night I felt that she lacked the kind of personality that is so important to nursing. The next time I met her, three days later, I moderately revised my opinion.

I had to have a skin check that evening. Apparently it's a requirement in this kind of facility.  I was also required to have a Mantoux test whether I'd already had one in the last ten years or not. That was the extent of my incoming medical evaluation into that facility as they had already been forwarded all of my pertinent medical records.

The most bizarre thing about the RN on last night's nursing shift was that for the first few hours she rminded me of the nurse in Stephen King's Misery. I was so frightened. Imagine the scenarios going through my overly active imagination that evening!

The best part of my stay at St. Joe's Hospital had been all the wonderful nurses. The best part of leaving was getting away from the horrible institutional food. The best part of the care at Cerenity was most of the nursing staff and the physical and occupational staff. The night LPN and nursing assistants were great. It was just Ms. Misery who gave me such a scare.

I wonder what Wednesday will bring besides hours of physical and occupational therapy. I had that at St. Joe's, as well. It wasn't my favorite thing to participate in, as it reminds me that I'm getting old and my generation is on the way out. I did learn that the swelling in my brain from the tumor has caused a short term memory loss. It's getting better everyday, though. Did I have that problem before? I can't remember...

It's now 4:00 a.m. The oxycodone has worn off. My sacroiliac joint doesn't feel too bad right now. This bed that I'm currently in is a lot firmer than the one at St. Joe's and it's not an electronic hospital bed. I think it's better for my back. That's good, because how can we be effectively politically progressive if we have to concentrate on eliminating pain all the time? That takes up far too much time and energy.

Oh, how I wish I had my own email and Facebook right from the beginning of my odeal. How much better that would have made hospital life for me. I missed it so much. At least I have my son Charles, who diligently tells me who has sent me email messages. I was so sad and devastated that some got lost in the St. Joe's system never to be seen again.

I was only supposed to be at Cerenity for two or three days. At least that's what they first told me. They ended up keeping me until this morning, May 15. I finally talked my way out of there because the physical and occupational therapists told me I could easily live on my own. Well duh!

Another good thing about my experiences involved my excellent health insurance at the State of Minnesota. I hope we never, ever lose it.

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