Not Today

I know this post doesn't have anything to offer regarding melanoma treatment but I feel it does offer a window in to a specific area that understandably is not often addressed and surely a place no one want's to be in. Over the past year I have looked for stories such as this as I have tried to prepare myself for what may and has come. Plus I I find this is the only place I have to share the love I  have for Adriana.

Things had been going fairly well the last few weeks for Adriana and I, we got her son graduated from high school on June 10 and began our trip to Los Angles area on the 13th with her son, along with her daughter and friend. The trip was full, visiting the beach the first evening. On Wednesday we visited the Hollywood Star Walk, La Brea Tar Pits,  and attended a scene being shot at CBS studio “The Bold and the Beautiful” where my daughter works in the wardrobe department. We met actors John McCook and Thorsten Kaye who were very gracious. Thursday we were at Universal Hollywood most of the day, we went on The Mummy roller coaster  but probably shouldn't have as well as many others. The Simpsons ride was more jolting than the Harry Potter Ride, go figure?  I have to say Universal was much more attentive and accommodating to those with disabilities than Disney, moving Adriana and I and other family when with us to the front of most every ride line and at the front of every photo opportunity (we actually declined much of the time as those folks had waited in line too) and offering us a personal staff assistant as we needed, really quite impressive and appreciated.  Friday was spent at a taping of MTV's Ridiculousness (special thanks to 1iota staff for getting us all in to the audience), Hollywood area and to the Santa Monica Pier. Saturday a bit of sight seeing and to my daughters home. Sunday and Monday were planned (and paid for) at Disney (alas California Adventure was not to be for us, but the kids made it.) Foremost I absolutely made sure Adriana was getting any and all  the rest she wanted and I thought she needed through out the week. We went on a few Disneyland rides and photo-ops from 12-5 when Adriana started not feeling well after a few bites of turkey wrap at a late lunch. I actually think that was a coincidence.  I took her  back to the hotel room and spent that night and the entire next day with nausea and vomiting, even after a few sips of water.  She could not keep any meds down either. She also started exhibiting signs of confusion and memory short term loss and headache. I attributed it to likely fatigue in addition to possible side effects from WBR starting and hoped rest at home would help.  She made it through Tuesday's flight home and in to bed to rest but still not keeping anything down. Her ability to communicate was rapidly declining. Consulting with palliative care over the next day assessing if it is indeed advancement of LMD (had the BRAFi finally stop working) and if she should come in to ER (long wait and to what end) or  call in hospice again. During all of which I had to prepare and find a replacement for a huge job I was supposed to do on Thursday. Both Wednesday and Thursday I had to leave her at home in the care of other family for a few hours. My time caught in traffic was excruciating but she was there each time I returned. Each day she said “Not Today.”

Adriana's communication was now very limited but mid morning on Thursday I asked her if she remembered what an MRI was like and if she wanted me to take her to the hospital, she said no. Lifting a bit of the decision burden off of my shoulders I was now fairly clear on what to do. Hospice was out Thursday afternoon. With some new meds on board Thursday we had her pain under control but things seemed grave. Just after the admit nurse left, Adriana started grabbing me and kissing me and moving about, agitated and putting her feet on me and the like. I called hospice and asked (after being on hold seemingly forever, 3 minutes?) to have someone come back right away, which our awesome nurse did. Adriana had a couple of hours of “terminal agitation” and with more meds, finally calmed down for the rest of the night. At that time she was determined to be in the weeks to days classification at the end of her life as a result of the advancement of this horrible disease. She  had made it past her bucket list milestones and had experienced some exhaustion doing it and her body now was likely ready to be done with this cancer nonsense. It was very difficult night for me. Thursday night Adriana said “Not Today.”

Having made it through the night, I had been up and around early for meds and coffee but had laid back down to rest. Her sister had been here but had just left for the airport to pick up her daughter and mother arriving at 11AM from Ohio. I tried to get up to give more meds but was dizzy and lightheaded (probably stress and exhaustion on my part) and had to phone her sister to come back to assist as I was laying on the floor with nausea at this point. After I got back in to bed, seemingly barely conscious herself, Adriana rolled over and embraced me and rubbed and patted me on the back to comfort me. I was touched and amazed by my incredible wife. I was shortly able to recover out of necessity and get back to caring for her. Friday afternoon still seemingly declining with an increased heart rate but more stable we started the next evening. At one point during her waking times between meds, she continued to badger be to help her to stand. Although this seems it should be a private moment I offer this incredibly touching moment of love between Adriana and I. Remember she is seemingly not mostly lucid and having a restless moment.  I had been in my PJ bottoms with no shirt and had been laying down. She badgered me to help her stand up which I finally obliged. She then removed her shirt so that her skin was touching mine and we laid back down and embraced for a period. She just wanted to feel me against her. Really two of my most treasured moments during my life with her.  Later that night she had a rather restless first half of the night but settled down after her 3:30AM meds. During the next couple hours I noted a racing pulse with shallow and intermittent reparation which the hospice nurse indicated could be an indication that she may be close to the end. In fact on two different occasions I thought she had passed on. Adriana said “Not Today.”

Saturday brought a fair amount of alertness along with some fluid intake and  small amount of soft food. In consult with her I gave some Mek (small pills, easy to swallow) to give her some kind of a chance as doing nothing = 0 and she has always indicated she wants to try reasonable opportunities. Saturdays nurse visit brought news that her heart rate was irregularly low and high  along with intermittent reparation (which can be expected in this state) and that she felt that Adriana was probably now in the days to hours category. Saturday night was peaceful and Adriana said “Not Today.”

Sunday she had quite a bit of energy and has been quite alert, aware and engaging which has been to the delight of visiting relatives which at times numbered 6 in our small bedroom with record 95 degree temps and no AC. I was challenged to manage the group and their energy level in an effort to conserve Adriana's available energy for healing and an effort to not risk sliding backward on her progress. Sadly, although there were offers to “help with anything”, when the time came to change the bed, change her pull-ups, bathe her, brush her teeth or  shift her in the bed all had disappeared or were not to be found. No one has offered to clean the bathroom or do the continuous loads of laundry. No one has offered to learn her medication requirement or what they might feed her. Not her mother or 21 year old daughter that have been staying here. In fact I have had to do a bit of tiding up after the latter. I have to say the visitors today were a bit frustrating for me as when they arrived Adriana was quite alert to the delight of all and I felt that they kind of felt like that the current state was the norm with out a great deal of effort on Adriana's part and mine as a caregiver.  In fact one comment was that “look the bed is made all nice and fresh” without any acknowledgment that it got that way because I had groggily gotten up this morning at 7:30 AM for meds without a lot of sleep and changed it (for the first time with Adriana in the bed) because Adriana's pull-ups had overflowed on to the bed and past the protective pad, even though I had changed them at 3:30 AM and again at 4AM.

This afternoon brought a new nurse that felt Adriana should have an enema  now as it has been a week since her last BM as well as a catheter because she thought her bladder felt firm (although she has been urinating quite regularly, with more volume now and more frequently with her increased intake.) After two unsuccessful attempts at the catheter and a mess on the bed (which again had to be changed #!*<-%$**!!! during a very hot part of the day) as the protective pads were not placed properly, I called it off.  Her ambient O2 was only 69% whereas it increased to 98% when assisted. I am concerned and am sure to not get any false hopes.

Sorry if it seems I am complaining, just frustrated sometimes.

I would do this for a hundred years to keep my wife from pain, and if she has to leave me I would gladly take on that pain to relieve her pain.

BTW again so far today Adriana has said “Not Today.”