Changes

Today was a good day.

I was pacing around as I talked on the phone, and I came across my wedding ring hanging on an ornate candelabra. I had put it there a couple of months ago when I was at my weakest health and lightest weight, after it actually fell off my finger. Before, it had always been a chore to get it off. That was a low point for me; realizing that I had wasted away that much was hard to take. I put it on the candelabra so I would know where to find it.

Today I put it on my finger and it stayed put, and would require real effort if I wanted to take it off again.

It's been hard to accurately gauge my weight. I weigh myself every day when I get up, but it often fluctuates daily by several pounds so I try and look at weekly trends.

I have now passed the ring test and am clearly gaining weight. So my goal is to continue to work on strengthening my body, staying healthy...and gain some more weight.

Good News!

Good News!

After meeting with our oncologist on the 30th he told us that we couldn't possibly have had better outcomes to the procedures, that everything is working properly, and things are as good as they can be. After 5 months of difficult procedures and dire predictions we found ourselves stunned and flummoxed by his positive words! He also said he didn't think that David would still be alive after these past months. He said that he could not be more pleased with our progress, and that medically we are back on track. The stent and the blood thinners are working, and the ascites is gone. We won't need any more blood tests, and now we'll just have follow-up appointments every month, and intermittent CT scans to watch for the cancer returning.

We drove away from the appointment in a kind of daze. Only that week had David had to have his blood checked multiple times to check for a disorder caused by blood thinners. That came up negative. Now this! It took us until the next day to start to believe that David is now back on track, and that his body has taken a turn towards health.

We do know that things could still go wrong, but as of now we are hopeful and much relieved! David is spending his days building strength, muscle mass and gaining weight in preparation for getting back to teaching this September.

Rebuilding...

After 15 days os self administering IV antibiotics, I am now slowly getting my strength back. The antibiotics left me weary, tired and weak, plus I still have a bunch of medical issues related to fluid build up, pain, acities and weight loss. A lot on my table to deal with...

As I work out the variety of medical issues with my medical team, I am also on a rigorous alernative plan involving diet, exercise and naturopathic medicine. I am just now starting to feel some positive results...

My goals for the summer are clear.

* Resolve medical issues.
* Rebuild strength and energy
* Gain weight and muscle mass
* Be prepared to teach again in September

Everyday brings me a bit closer; and barring some surprise medical drama turning up, I should be good to go.

Home Again...

Just as I felt I was gaining strength and health back from my long MGH stay, I woke up early on the Friday of my 50th b-day, feeling like I was going to die of chills and delirium......Monika's previous post describes the day nicely...

Birthdays have never meant very much to me, and this year all I wanted was to have a small meal with the handful of friends who saw me everyday at MGH and got me through the ordeal with their love and daily presence, so I could thank them for getting me to #50. So I'm glad I was still able to do it...

The rest of the 4 days were spent trying to determine specifically what type of infection I had and to see if there are any issues with the stents or surgical sites from the MGH work. Happily (so far) everything seems fine in the scans with all my previous issues so we are hoping that this is just a separate infection that will not have ramifications in an ongoing way.

I will be receiving 10 days of IV antibiotics at home with the help of a visiting home nurse service. They will train me how to administer the antibiotic and be on call to help with any issues that arise...

Even in the comfort of a single room, and with me having only a few medical things done to me each day; I realized how much I needed to be out of hospitals right now. I was starting to become anxious that I'd have to spend another couple of days until all test results were in, or worse, that they would send me back to MGH for observation. I need a chance to build my identity away from hospitals and sickness, and my being back in the hospital set me off. My stress was considerable, but luckily my local GP doctor came everyday to see me and he understood that I would heal better at home, so he made it happen. I still may end back at MGH with bigger issues, as we chose to go down a perilous road with lots of risks, but for now at least, it's back to quiet methodical healing and rebuilding in the sanctuary of my garden and home, hoping that this infection is unrelated to all my other issues and that I am on track to become healed...

Time will tell.

50th Birthday....and complications

Yesterday was David's 50th Birthday! The preceding week he had been steadily improving, getting healthier and stronger each day, as he puttered around the garden, buying herbs at the nursery, planting tomatoes, walking with me and the dog. Then, early morning of his birthday, he woke up feeling sick, had cold shivers, ran a hot bath, but could not get warm no matter how hot the water was. He puked.... I took his heart rate and temperature, and both were running very high. I called his MGH team, and they told me to take him to our local hospital, so that they could properly monitor him. We spent most of yesterday in the emergency room, and around 5 pm he finally got admitted. Meanwhile we had invited a few close friends for dinner. In the end, I held the dinner party without David there, and then we all went to the hospital with cake, sang for him, and hung out. While this was certainly not how we had planned to spend his birthday, it was actually a very beautiful thing, and luckily David had a single room, so we didn't disturb anyone.
After multiple tests and scans, it is clear that David has an infection. Where it is, we may find out tomorrow after his CT scans have been read. Until then David is resting nicely in the hospital and getting the medicines he needs, which is good, because it was a little scary to see him so sick and feverish yesterday. He does feel and look much healthier today.

Peace and love,
Monika

Home...

Well, I made it home yesterday after what can only be called a very difficult 17 days at MGH. I come home with a fair amount of healing left to do, and a lot of things to balance as I transition back into my life.

My care at MGH was extra ordinary, from the team of doctors that managed my VERY complicated case to the nursing staff which was truly amazing. I dodged a lot of bullets during this stay and am really lucky and grateful to still be around. The level of knowledge, support and caring I received was like nothing I have ever encountered at a hospital (and I am used to getting very good care). The nurses and aids helped me through some pretty dark times...and I am most grateful.

After I was stable and able to be free of machines and IV's, it became clear to me that I needed to get home to really heal. Time is suspended in the hospital...day and night blur as you get checked 24/7, tested and attended to as buzzers go off, people moan, and staff rush around... you never really sleep and are always out of balance. At times, I needed LOTS of care and then lots of vigilance to make sure that I had stopped bleeding and it was safe for me to go back on blood thinners and prepare to go home.... So now that I am home, I can bask in the peace of my garden and the presence of my beautiful family. I already feel stronger.

The coming weeks will bring some challenges that I have to work through, but at least for now, I am in a great place, and hope to get my body back on track...

Thank you to all my friends and family by my side that saw me through this and for all of you who have kept me your thoughts...

Turning a corner...

Today David looked and felt well. His blood crits were holding steady, and the doctors think his inner bleeding has stopped. For some periods during the day he can now get unhooked from his IV lines, and has taken a few walks outside in the beautiful spring weather. He says it revives him, and that he can feel the healing influence of the sun on his body. This evening he looked very stylish in his hospital gown, as he and I went for a stroll at the edge of Beacon Hill. We paused in front of the Liberty hotel, admiring the soft light of late afternoon, (ignoring the looks from the posh crowd in the open air hotel bar).

While David now seems to be doing much better, it is important to note that his health issues are complex and many. There is no magic fix to his present situation, and whether or not he will flourish will depend on many factors. While we are relieved that things are looking good right now, we are in no way in the clear. But we welcome every success along this arduous walk towards healing.

Peace and love,

Monika