Thursday, February 9, 2023

Inquiring Minds Want to Know - February 9

My daughter flew down and we flew back to Ricmond January 11th. She drove me directly to VCU hospital (best in Richmond) and I was admitted. I stayed at VCU for 3.5 weeks.During that time I had many pokings, prodding’s, pictures and tests to determine the type of cancer. 

It was finally determined that I had stage 4 B cell non-Hodgkins lymphoma. A portal was inserted and I started my first cycle of chemotherapy. 

I was moved to a convalescent /rehabilitation center, near my daughter, in Ashland Virginia on February 3rd. I will likely remain here for a least a few more weeks until I am able to care for myself. 

Cycle 2 of chemotherapy is scheduled for next week. I will in total have 6 cycles of chemotherapy.

I really appreciate the messages I have received from all of you and my friends who have been taken care of me.

Hoping to beating this disease and be back cruising soon! Continued positive thoughts and prayers are welcomed and appreciated.

Smooth sailing until next time! 

Monday, January 9, 2023

 Evicted - January 9

Early in the morning, I was visited by Dr. Occy’s partner. He said I had two choices - either to go to a rehab center or go home. The idea of going to the rehab center was to have intensive physical therapy which might relieve the pain. I questioned whether intensive physical therapy could possibly increase the pain in the short term. I did not want to chance that. So I am going home.

I started checking JetBlue flights because they are the only carrier that has direct flights between Richmond and Fort Lauderdale. There was space on the Wednesday ones and so I then called my daughter. She’s going to fly down on the morning direct flight, spend the day here helping me, and then we will fly back on the evening direct flight which arrives in Richmond just after 11 PM.

The plan for Monday and Tuesday was to work on increasing my ability to sit in a chair for long periods of time and work out a short term pain plan so I will be able to do that as well as to get on and off the plane.

A great physical therapist named Ruth came and helped me this morning. She showed me some exercises to do, some helps in walking around, got the back brace on correctly, and generally gave me the confidence that I can do this. We did a test run with me sitting in the chair for a while - two hours actually - and then taking pain pills and doing a lap around the floor which wasn’t too bad. When I came back, however, I was exhausted. I got into the bed and slept for a couple hours. I sat in the chair for dinner and to watch a little bit of news after dinner (all wearing the back brace).

Dr.  Maimi came by to check on me and told me the best thing to do (since I don’t have an oncologist or even a confirmed diagnosis) was to go to the emergency room of a good hospital when I get home and complain of back pain and I can get the process going.  She also said that I needed to have more biopsies done to pinpoint what kind of cancer it is.  The amount Dr. Klinger was able to do was not enough of an area to get a good reading. I am feeling much more confident now having a plan of action.

I expect Tuesday to be very similar to today.

Once again I want to give my heartfelt thanks to all of you who continue to read my reports and send me love and prayers.  It really helps me to get through this trying ordeal.  Love to you all.❤💘💗💖

Sunday, January 8, 2023

 A Very Quiet Weekend - January7-8

No doctor visits or news over the weekend (or at least at 4pm as I type this).  Yesterday they did not want to let me get out of the bed without the dreaded back brace but it didn’t fit right.  This morning some guy in a lab coat came by and “fixed” it so I used it on a visit to the bathroom.  I almost decapitated my self on the front bar. The nurse took it off and it has not been mentioned again.  In truth, it feels fairly good when I am standing or walking but not for sitting.

I slept too much yesterday and had trouble getting to sleep until I had meds at about 2am.  I had a nightmare where I was on a ship with the windows in different sizes and colors passing me like I was on an elevator.  The same continued as I woke, not knowing where I was.  I asked the lady I saw (actually my roommate) if I was on a ship or in a hospital.  I got up as she was answering, “hospital”, and headed with Holly (my rollator) to the restroom.  My roommate by then had found a nurse who helped me back to bed and I was finally out of the dream.

I had visit number three from the “Rehabilitation Vultures “ as I am calling them, today.  They want me to come to their facility for a few days to a week or so and do enhanced PT.  Sounds good if I lived here (I would get all the services as at the hospital) but I want to start cancer treatment or go home to get it asap.

Friday, January 6, 2023

 Another Day, Another Diagnosis - January 6

Dr. Landau (oncology/radiation) came by in the afternoon and said as more test results come in, he believes it is myeloma not lymphoma but there is still no definitive course of treatment.  So, for the time being, I will be calling the hospital home.

Thanks to all of you who sent me greetings.  I appreciate all of them, and can never get too many thoughts and prayers.

Thursday, January 5, 2023

The End of the Road - December 29 - January 5

The last few days have been like nothing I have ever experienced (and hope to never again).

Thursday morning I was in great pain and knew I had to get off the ship and go to a hospital.  I was taken off in a Broward County rescue ambulance by the nicest (and not hard on the eyes) young men.  Once in the hospital, I was given a hospital gown and an emergency room gurney (not real comfortable) and stayed there.  I was in spot Yellow A which is in the hallway next to the nurses station.

During the day I was given the usual blood test, urine test, chest X-ray, etc.  At about 6:30 I was taken for an MRI.  A few hours later, the ER doctor came to give me results I never would have thought of.  I had a broken (compressed?)L1 vertebrae and spots of cancer.  Way too much to absorb.  

In the middle of the night, they had found a room in the ER in which they took me so I would be out of the hall.  They had a room for me on 4North in the morning and I was then in my new home away from home.    I had another MRI during the early evening which took longer than the one before.  Dr.  Klinger (who is a neurosurgeon ) came in to check in since he was off that weekend.  

Two other doctors dropped in over the weekend (I was in pain and getting pain meds every four hours so the two days are very fuzzy - I slept a lot).  Dr. Klinger came in Sunday night and reviewed Monday’s surgery.  He was not happy I still had not had a chest and back CT scan so he made sure I had one.  (Getting on and off those little planks for the MRI and CT scans really hurt with back pain ).

Just after 7:30 am I was wheeled to the OR.  They asked lots of question, many multiple times (they had said they would) and got me ready for the Kyphoplasty and get tissue for a biopsy.  The kyphoplasty is where they take a cement like substance that rebuilds the space between vertebrae’s.  Any doctors reading this, that may not be a quite accurate description- I am not doing well comprehending everything right now - feel free to correct me.

They also took tissue to try to figure out the source of the cancer.  I woke up after 11:00 and thought I was in Cape Town.  ????  I finally figured out where I was.  Everything had gone well.

Monday afternoon, Pete and Judy came by to see me.  They are two of the people I was supposed to eat dinner with and go on the safari.  It was great to see them.

Over Tuesday and Wednesday, I had visits from Dr. Maini, Dr. Occy, Dr. Landau.  Dr. Miani is a hematologist/oncologist and Dr. Landau works with radiation.  Since there is still no exact information about the cancer, they agree that radiation should be the next step.  Ideally, I would have been able to do that in Virginia but there is still no way to travel for hours in the pain I am in.

Dr. Occy (pronounced o-see) came in and appeared not to have gotten the radiation memo - he was still talking about PT and a rehab facility. Since he does not work in the oncology field, maybe that is why he didn’t know.

So, that is how my “vacation “ is going.  Today is the first day I had felt good enough and was not taking as much pain medication, to work on the blog.  I tried Monday but didn’t get beyond the title.

I will continue to post every few days or if there is something really important to let you know.  Many of you have been in touch and I really appreciate your kind words.

Wednesday, December 28, 2022

Another Day - Maybe the Last - December 28

My mind went over and over the possibilities for having to get off the ship for about an hour but then I slept really well for over seven hours on my back. That never happens.  I only woke up sometime around three when there was an emergency call broadcast into the cabin (very unusual).  Went back to sleep quickly afterwards.  I was able to get up okay but as soon as I put my weight on my right leg, the pain was back.  It feels very much like the pain from my piriformis only in a different location (feels like a stake being driven into your muscle every time you step).

I managed to get ready and go up to the Lido for food so I could take my pills.  Lunch had not started but one of the bar servers went in the back and got me some bread.  I sat for some time by the Lido pool and enjoyed the nice weather.

Kathy and Mike came by and sat with me and we had drinks as they ate their lunch.  They then came back to my cabin and we sorted through the two suitcases which mainly contained Linus Blankets.  They took the bag of blankets to give to Marty (who is in charge of the program on the world and is boarding tomorrow) and also took away my Coke Zero collection in case I don't return.  I really appreciate their efforts to help me.

I went to 4:30 trivia and then had a 5pm reservation for the Pinnacle Grill.  Rich (richwmn for those on Cruise Critic) joined me and we had a nice conversation during dinner.  The place was packed with last night diners.

We then went to watch the end of the Jukebox Rogues third show and then went to Music Trivia which was on Motown.  Our team won.

My appointment with the doctor is at 8am tomorrow.  I know I need to leave the ship to get an MRI but I am keeping up a slim hope that something can be found and done before the World Cruise starts on January3.  Not sure if HAL will even let me do that but tomorrow will be a very interesting day.

Trivia - We had 11 out of 17 and the winning team had 14.

1.  What is Japanese horseradish better known as?

2.  What does VSOP mean on a bottle of brandy?

3.  How many different colors were in the first box of Crayola crayons?

4.  What is the name for a group of monkeys?

5.  What was the first toy advertised on TV?

1.  wasabi

2.  Very Superior Old Pale

3.  8

4.  troop

5.  Mr. Potato Head

Smooth sailing until next time!

Tuesday, December 27, 2022

Almost a Medical Disembark - December 27 

And so the saga of woe continues.  I slept for about three hours and when I got up and stepped up into the bathroom. I twisted my left side and I could feel muscles pulling.  Great - now my left and right sides were out of commission.  I was afraid if I got back in bed, I would never get out, so I sat on the sofa.  

I fell asleep sitting up for a few minutes at a time until my head flopped to the side.  I played games on the computer for some while, killing time until the medical center opened at 8.  My plan was to get up and get dressed about 7:30 to go down there.  My plan was foiled by the fact I could not stand up.  I ended up calling 911 again, who sent my room stewards and someone with a wheelchair.  

With much pain (and a few screams on my part - I am a pain wuss), they got me up and into the chair and I was off to my new home-away-from-home.  When I got there, Dr. Vos was not happy that I was not improving more and that this new pain would not help.  She said if the next IV didn't help, she was going to medically disembark me - in Cozumel, Mexico!  My Mexican is limited to si, no, taco, burrito, and a few more.  I did start crying at that point and pleaded with her not to do it.

Luckily, the IV helped the new left side strain and I was able to get out of bed twice on my own and walk to the bathroom and later to the wheelchair for the ride back to my cabin.  I am due to see her again on the 29th (when we return to Fort Lauderdale) at 8am for another evaluation.

From the way I feel right now, I am not very optimistic.  The difficulty I am having walking because of the right-side pain is making my life miserable.  As little as I want to give up the world cruise, there is no way I could enjoy it if it takes everything I have just to get to the Lido.

I am hoping and praying that the meds will kick in (I am on day four of the prednisolone and day three of the others) so there is still a chance.

After hobbling back from the Lido, I took a three hour nap in the bed (both the doctor and the nurse repeatedly told me not to sleep on the sofa) and from which I was able to get up from with only minor pain. I killed some more time on the computer.

At about 6:40, I started getting ready for a 7pm dinner at the Pinnacle with Kathy and Mike.  We had a very enjoyable dinner and they offered to take a couple of things off of my hands if I do get disembarked on Thursday.

We talked until 9:45 and then back to my cabin.  The front right leg pain has ceased for the time being (yea!), but my right backside pain still feels like a stake is being driven into me and is very much like the pain when I had the piriformis problem earlier in the year, only in a different location.

I have had such nice comments from so many of you and I appreciate all of them.  Please continue keeping me in your thoughts.

Smooth sailing until next time!

Inquiring Minds Want to Know - February 9 My daughter flew down and we flew back to Ricmond January 11th.  She drove me directly to VCU hosp...