There is No Time to Be Fearful

Dad will have his surgery tomorrow first thing in the morning.  Think happy thoughts everyone!!!

Keith – no forward progress.  He is still non responsive and his blood pressure is still low.  His primary caregiver, Dr. Foy, paid a visit as well as his admitting doctor (who by the was my Dad’s admitting doctor).  Both doctors started to review the charts, discuss his status, and pretty soon, Dr. Foy was on the phone with Dr. Smith and relaying information to me.  Our conversation consisted of Dr. Smith debating transferring Keith to a tertiary hospital like UMMS or Johns Hopkins.  There are pros and cons to this which I am actively discussing with Keith’s medical team, as well as his social worker and a friend of his who is an Oncologist with 20 years of experience with blood cancers.

I have reached a point of total clarity.  It came as I snuggled up to him in bed after visiting hours, which isn’t easy with all those tubes.  It was just me and him and we talked – ok, I talked – and he didn’t interrupt me – not even once.  Asshole (Still the world’s most lovable asshole, mind you).  We (I) discussed what Dr. Foy told me.  We (I) reminisced about our first date.  We (I) went over all the medical advice and possibilities and whether it was worth the risk and then finally I told him I had to go home and get work done.  After untangling myself from the sheets and tubes and pillows, I found myself strolling down the hall, with my fingertips gliding along the rails on the walls thinking that as long as I stayed connected to them, I could send a signal down the wire to Keith.  At 10:00 at night, the hospital is a very still quiet dark place.  You have to leave through the emergency exit and the security officer greeted me as I walked up to the doors.  He called me back in and handed me a few tissues and asked if I was ok.  I hadn’t realized I was crying.

Here is the clarity in the form of an email I just sent to a couple of Oncologists for advice:

Good Evening Gentlemen:

I’m Keith Nielsen’s wife and I know both of you are aware of his lymphoma.  In true Keith fashion he has the doctors scratching their heads and the clock is ticking.  It is my understanding this is an unusual case.  I’ve attached the report I provided the hospital the night I checked him in and an MRI report I received two days ago.  Please keep in mind that his current condition is very different than what shows in the report from Dr. Smith’s office.  His doctors are Dr. William Gai and Dr. David H. Smith.   They are at Bay Hematology Oncology P. A.  By copy of this email to them, I am letting them know that I am reaching out to you for more eyes on the case.

This is the situation as I see it as Keith’s wife:
Keith wants to fight this cancer and has been fighting it full throttle from the start.
If Keith’s health declines, he does not want anything to do with quantity of life versus quality – no resuscitation or intubation.

Those are the instructions my husband has given me.   I also know that despite his stubbornness, he would allow me a little flexibility between the two.

What can we do?  Trust me, I’m realistic.  I’m also planning a funeral as well.




The Great Unknown

My Dad will probably have surgery Thursday after a few additional tests. My Mom is flying in from Florida tomorrow to be with the family and my brother will pick her up from the airport. We are confident that Dad is facing a blocked duct around the liver and expect all to go well. I think that Daddy’s little girl wished him into the hospital so she could sneak into his room and snuggle up to him like she did when she really was daddy’s little girl. For that I apologize to Mom because she doesn’t need any of this either.

Keith – the great unknown. He has a fever again. The hospital doctor has advised us to considering the tough question of continuing with treatment or making him comfortable. His oncologist, Dr. Smith, advises that this a result of infection because of a compromised immune system. “Hang in there a few days and lets see if we can get his fever to break and hold it off for a while” is what he is offering us. We could still find the window to do chemotherapy. The doctor who is our infection specialist spoke with Keith’s cousin Henry and I – she opined that because she is treating the symptoms of an infection without success, she can only conclude that the cancer has triggered his demise.

Keith’s cousin Henry is here. His daughter Christie drove down from NY this morning with her beautiful new dog, who is fast becoming a comfort to us here at the house, although Rudy is very jealous. His niece Melissa will be traveling into town tomorrow. Zach will see if he can come after work on Saturday. We are all going to either annoy Keith to health or hold each other up as we face Keith’s great unknown.

Keith’s MRI – Attached here is Keith’s MRI report from this morning. This one document has lead to our three doctors giving me three interpretations. All of their reading are valid from their respective knowledge base. Anyone reading this – if you know someone in the medical field that deals with compromised immune systems or lymphoma, please share this with them and I can forward more if they have any ideas but want a bigger picture. I’m looking for fresh eyes or maybe I’m grasping at straws or maybe this is my cry to the forces of life. It is all I have left.

Rabbi Paul came to visit Keith. He prayed with us and shortly afterwards Keith opened his eyes and focused on Henry, Ginny, and I. He’s in there and I know he’s still trying to fight and I know he hurts and I know I am selfishly begging him to stop this nonsense. I tried to taunt him like I always do – pick a fight – call him names – Christie warned me that when Keith gets better, I might get kicked to the curb for messing with him. Fine! If that’s what it takes then kick me to the curb.

I left the ER around 3:00 this morning and I can feel how bone tired I really am, and yet I can’t shut off. I have a sneaky idea that Henry doesn’t shut off easily either. I can hear him playing guitar in the room next to me. It’s nice and reminds me of when Zach would pluck out tunes in his room while I would ease drop on him. My brother Lance was visiting Dad when I stopped in for a lunch time visit. Here’s something that only Lance, Mom, and Dad really know about me – I have always hated this time of year – and that feeling of spite for this crazy time of year we call the “holidays” raised its ugly head as I sat in the room between the two of them. There I am, turning to Lance saying “Did I mention I hate Christmas”. My poor baby brother just looked at me with that deadpan face, wearing a Grinch tie, and said “What! you don’t like cookies?” He always knows how to throw out that one-liner to get me to smile and the bonus is, as much as I love him, I didn’t land him in the hospital. Christie is my witness that he walked out unaided and healthy.



News from the ER waiting room

Where do I start tonight? And does this blog really belong here amongst Keith’s medical updates? I don’t really know that it matters anymore. The universe is full of twists and turns and we have to decide if we can buckle in for a bumpy ride or just let it get the best of us. I’m going to go with a safety harness and a helmet, maybe even a G-Force suite.

I have just installed the wordpress app on my IPad and I am bringing you this latest update from the ER at Easton Memorial Hospital. My father is actually the patient this time with something wrong with his liver, possibly a blockage. He’s a delightful shade of yellow and his feet are itchy. He reminds me of a cricket as he’s rubbing them together to scratch them. This is the same man who traveled across the country with Keith back in August while both were very sick. Keith had to use every restroom along the way and Dad had to pull over several times because his gall bladder kept making him throw up. On the very same day in earlier September that Dad’s gall bladder was removed, we got Keith’s CAT scan results showing the first hint that he had cancer. Now both of them are here in the hospital. I seem to be developing a knack for landing the men I love in Easton Memorial. It may not be safe for my son Zach to come home for Christmas.

Keith is in trouble. There is an infection raging. Around 1:00 today I received a call from the hospital and was told that he still had a fever, was barely responsive with only one word answers to the nurses’ questions. They canceled the delivery of chemo via his spine and expressed enough concern that I felt it was time to alert his daughter, Christie. She will make her way down to see him tomorrow. His cousin Henry called and I am so grateful for the support he gave me at a moment of despair. I called the nurses again around 5 and Keith was awake and mildly alert so I could talk with him. I don’t know if he’ll remember it. It was so good to hear his voice. The nurse let me know that his fever was gone and they had him on a vigorous round of antibiotics.

As my dad’s vitals were taken, I called the nurses again around 9:00. Keith was at the same point that he was at 5:00 – no fever and resting – although they have changed up his antibiotic cocktail. Tomorrow morning, they will do a MRI on his brain. Meanwhile, back here in the ER, they have decided to admit Dad. Tomorrow he will have an exploratory procedure where they will send an endoscope through his duct work to see if there are any obstructions.

Let the games begin!!!


More Chemotherapy Tomorrow

For those of you who are following the posts, I mentioned my puzzlement over Keith mentioning protein in the bone being high.  I spoke with Dr. Smith tonight and I have an answer – the protein levels are almost twice normal levels in his spinal fluid and this is indicative of lymphoma hiding in there.  Tomorrow, they will aggressively go after those pesky hiding cancerous cells with a straight shot of chemo cocktails into the spinal column.

This slippery hiding cancer could be what is complicating Keith’s forward progress.  Dr. Smith is very happy about the bone marrow showing negative for cancer but also pointed out that we have to keep going at this.  He  recognizes the enormous toll this is taking on Keith but also says that this cancer can be beat, never to be seen from again, if and only if we keep the chemo pressure on it and push it all out.  The best thing for me to do is keep Keith’s spirits as high as possible to help him struggle through all the illness he is experiencing with treatments.

It is another rough night with no appetite and more fever.  Another night of me eating Keith’s dinner because he can’t and years of mother training has taught me to finish my plate, his plate, their plate . . .  that and I’ve always been a sucker for pie and when I got to the room tonight there was a big fat slice of lemon meringue sitting there.  I kept waking Keith up as I moved around the room, so I decided it was best to kiss him goodnight and head home so he could rest.  I miss him.  He told me he missed me.  We have no choice then – he has to beat this so we can’t miss each other anymore.

I will update all of you tomorrow after we see how the chemotherapy procedure goes.


A Romantic Dinner Date with Keith

Keith made his first call to me since going into the hospital! He was coherent and lively but still a little confused.  He asked me if it was morning and I had to laugh.  The only thing that I could think of was the famous Jerry Maguire line “you had me at hello”.  We discussed his need for regular chocolate instant breakfast and he placed his order for a regular crueler (not chocolate) and a chocolate cake glazed donut (not yellow cake).

After breakfast, I had a chance to catch up with his nurse.  He did have a long rough night and there was concern from the medical staff because his blood pressure dropped very low.  Today, however, the fever was gone and the blood pressure was up.  This afternoon, he was on a roll with his EBay business – commanding the helm from his TouchPad while sending Jay and I directions over the phone.

For dinner, I ordered up an old dish we used to always share over lunch when we were dating all those years ago.  And just like old times, he ate the rice and I ate the boneless pork.  Keith even ordered me a cup of sugar free pudding from the kitchen for dessert.  The nurses allowed me to stay past visiting hours.  Amazing how a crisis can make something as simple as a little chinese carryout shared over a hospital table so completely romantic.

I missed catching up with the doctor after his visit with Keith.  I hope to find out more on Monday when I can call the office.  What I do know is that we are still waiting on test results from the lumbar puncture, Keith is back on nutritional supplements which are being administered through his port, and he said the doctor mentioned that he had elevated bone protein.  We have no idea what this is or what it means.  As soon as I understand it better, I’ll share the information with all of you.

Things are looking up for Keith but the duration of his stay in the hospital is unknown.  He is still weak and is still facing some sort of infection.  As always, I am convinced that all your prayers, positive energy and healing thoughts are with him.  I thank you all for that and for the support you give me.  Jay complemented me on keeping it all going no matter what is happening and it was nice to hear.  The irony is that having him say it actually does keep me going.  Marian had me in stitches on my walk today as we texted back and forth, trying to determine if I needed more sleep or liquid cheer.  Eventually, we determined that if I had enough liquid cheer I could get more sleep.  So Cheers! to friends and family.  Keith and I toast to you all (and tonight it’s before midnight).


Keith's Lumbar Puncture

Today Keith had a lumbar puncture, otherwise known as a spinal tap.  The procedure was done in the hopes of getting to the bottom of his infection.  Today, his magnesium was low.  He remains very weak and is eating very little – the best I could do is 1/2 a hash brown, one bite of a biscuit, one bite of rice, one won-ton noodle, a 1/3 of a yogurt – all of which needed to be fed to him.  A respiratory therapist paid him a visit this morning and he is on the threshold of breathing difficulties.  She took the precaution of connecting his oxygen if he decided he needed it.

At this stage, I believe that he is in poor enough health that any one choosing to visit him should check with the nurses first.  It was hard for me to want to follow their direction and not visit this evening, but I know that he needs rest most of all.  I did get one small smile out of him when I read him his cousin Patti’s card over lunch.  The gist of the card was a list of things to do while recovering from chemo.  Number 9 read: Make a macaroni sculpture.  Number 10 read: Try to sell the macaroni sculpture on EBay.  Yep! any one who knows my husband knows that at number 10, we got a smile.  I left the card in his room so I could re-read it to him when he’s feeling mentally sharp again.

Its been a long hard evening for me.  Keith is the Yang to my Yin.  He aggravates me, humors me, inspires me, infuriates me, and I miss his morning visits with coffee in hand.  If it had not been for two surprise visits on Facebook, I believe that I would have spun off center.  Thank you Karen and Tomm.  Small talk saved the day and it never ceases to amaze me that at the very moment I need a lift, I am handed wings.    I also drained a little frustration away with a good drywall sanding.  I don’t recommend it as a daily form of therapy – its a messy way to inner peace.


Keith is still in the hospital

Here I am with another late night post.  I am convinced that without Keith here at home, I seem to lose track of time.  I guess there are worse things to lose track of.  Lately, we both are guilty of misplacing the car keys.  Lets also just face the fact that this night owl doesn’t have Keith here to wake her up in the mornings with his usual Tigger bounce.

I wish I could share good news but there isn’t much at the moment.  Keith has been moved to a private room because admissions were going up and he was originally in a two patient room.  The doctor doesn’t want him to be exposed to anyone sick so they moved him out.  He is fighting an infection now.  When I left him around 7:30 tonight, the nurse said that the fever has subsided and they have him on antibiotics, but she also said it was a rough day for him.  He is starting to turn down food again and despite my best efforts, I can’t seem to show up with a hot meal when he is awake and alert.  Then again, with the onset of the infection, he really is just plain out of it.  I think I liked the delirious mad man we had at the house just a few days ago.  Time to pull out that old cliche – Be careful what you wish for.

Yesterday, they attempted an MRI but Keith couldn’t keep his legs still enough without them going numb so today they did an ultrasound.  Keith couldn’t eat until after they completed it which wasn’t until late morning.  He let the nurses know in no uncertain terms that he was starving and this was no way to treat a patient.  I have to agree with him – when your patient is skin and bones, you think any procedure that required you to fast would be done first thing in the morning.  When Keith is healthy enough to read this blog, I can point to that last line and tell him “see Honey, we do agree about some things.”

I spoke with his Oncologist, Dr. Gai, this evening.  He advised me that Keith’s medical team is having a tough time with this because he is young enough that he should be able to tolerate the chemotherapy better than he is.  I did mention to him that Keith has always been hypersensitive to medications and he rarely takes anything.  Even when he does, it’s usually in 1/2 doses.  I’m starting to wonder if that is the case with his chemo treatments.  Dr. Gai was optimistic about Keith leaving on Saturday, but after the news of another infection, I really don’t have a sense of when he will get out.  He is still very weak and can not move around without assistance.

I’ll keep you posted as always.  Thank you all for the support and prayers.