Gratitude and Edema

After so much panic about finances, I am finally feeling okay.  Ron and I have received enough support that we have extended the amount of savings we have to live on significantly.  Whereas before I thought we had 3-4 months to live on, I now feel we are at 5-6 months.  It is still a finite amount and, as I sometimes have to remind Ron, we still need to be careful how we spend it and need to cut back on any extras that are not essential.  But, it is a much larger safety net than we had before.  Now that I know we are covered (barring any unforeseen home repair or other crises), I am feeling much calmer about all things.  It takes a huge amount of stress off my mind and I am better able to manage the other daily stressors that come with being a caregiver and facing Ron’s illness. 

The support from others also helps me to feel, without any doubt, that I am doing what I am supposed to be doing.  The universe, my community, God, the natural order of things, our friends and family – however you look at it, all of these things have lined up to make it financially possible for me to take care of Ron for many months to come.  I take this to mean I am doing what I am meant to be doing.  It reaffirms my decision - I am right where I need to be.  No need to second guess or feel pressured to scramble to any hasty decisions just in order to keep us financially afloat.    

There is someone who deserves an extra special thank you.  But, I do not know who this person (people?) is.  I received a check from Giving Anonymously, which is a nonprofit organization that allows an individual to give money to another individual without the recipient knowing who gave them the money.  This takes the feelings of awkwardness and obligation that often come with monetary transactions out of people’s personal relationships.  The gift I received was a large amount – as much as I was bringing home in a month on my reduced hours when I was working and caring for Ron.  If I knew who gave it to me, I know I would feel I owed them hugely.  Not knowing feels strange, but is less uncomfortable than feeling I owe someone a debt I can never repay.  I kept trying to guess who it could be, but in the end, I realize that was not the point of this gift.  The point was to have it be anonymous so I don’t feel that weird guilt and sense of owing someone.  And, for anyone who knows me (I have guilt about everything, even when logically I know I did nothing wrong), this makes the most sense to protect my feelings and minimize potential stress over receiving such a large gift.  So, to whomever the saintly person is that is looking out for me and taking care of me and Ron, THANK YOU.  Again, there are not really enough words big enough to express my gratitude, which is colossal. 

This large gift, paired with the large amount received from Ron’s Ohio friend (and her family) last week, combined with all of the money, gift cards, etc. we have been receiving since I initially put out my cry for help on the blog means we are doing alright now.  I can relax a little.  I know we can live off what we have for several more months, provided we play our cards right.  I can breathe deeply and know that, for the moment, we are doing okay.  I asked for help and we received it.  What an experience! 

To all who have contributed to this gift of financial stability, again, many heartfelt thanks from me and Ron.  To those who have wanted to, but been unable to contribute financially, don’t worry, this is not your time.  To those who provide support in other ways – through prayer or a meal or a phone call or a walk or a letter or a cup of coffee or the offer to help with any task needed or staying with Ron for a couple hours or walking in Ron’s name for Relay for Life or honoring his struggle in other ways or offering up your family members to help us with chores or just keeping us in your thoughts – we hold just as much gratitude for you.  It is all the different kinds of support that keep us going.  You all have set strong examples for me of how I can help others in need and are inspiring me to make goals for myself to give back and pay it forward when I am in a different position in my life.

Ron and I have spent much of the week recovering from his birthday party.  Yesterday, he went to the hospital for paracentesis and today he is just feeling really tired.  He has not been up to doing anything outside the confines of his hospital bed, short of going out a couple times for a smoke.  I, on the other hand, have been pretty anxious to be outdoors, because it was such a beautiful day.  So, I took the dogs on a morning and evening walk and hung laundry out on the line to dry and found other little excuses to slip away for a few moments at a time while Ron was sleeping or watching tv. 

Our newest challenge these days is edema.  Ron occasionally gets swollen in his feet and legs, particularly when he is in his wheel chair without his feet elevated for too long.  They were super swollen when he was up for four hours for his party last weekend and his knees were quite painful as a result.  But, perhaps worse than having his legs swollen, he has been getting significant edema around his abdomen.  It mushrooms out over his pants.  It stretches his skin until it is shiny, red, and itchy.  New stretch marks bulge out with fluid.  If something rests against his belly, it leaves an indentation long after it is removed.  It dimples and pits at its fullest points.  It makes him very uncomfortable and can sometimes be painful, “like a sunburn,” Ron says.

Ron’s belly was already swollen with an enlarged, cancerous liver that spread from one side to the other to even infarct part of his spleen.  It is also swollen with ascites, which is the fluid that builds up inside his abdominal cavity.  The ascites is what he has suctioned off once or twice per week (paracentesis) at the hospital, guided by ultra sound in order to locate the loculated pockets and avoid perforating bowl or tumor.  When he was first diagnosed over a year ago, he was placed on diuretics to decrease the ascites.  Now, he also is swollen with edema, which is excess fluid building up in tissues, not necessarily in the cavity.  (Our nurse keeps referring to this as “third spacing” – but I don’t know exactly what this means – any medical people or nursing students wanna give me a definition, because when I look it up online, it just says edema?)  It cannot be removed with paracentesis, though it sometimes weeps out the needle holes after the procedure.  It cannot be suctioned out or poulticed out.  The main treatment for edema is to reduce salt intake and take diuretics.  But, this was the same treatment Ron was given to manage the ascites in the first place, so he already has been keeping an eye on sodium and taking diuretics for the past 17 months.  Clearly, his edema is beyond the scope of these simple solutions.

A few weeks ago, Ron’s diuretics were doubled to try to address the increased edema, but with no success and with negative side effects (dizziness, nausea, loss of balance, increased pain in kidneys/bladder).  So, he is back down to the original dose.  However, the doctor we saw last week thinks the diuretics may not be working at all because Ron’s protein intake is so low.  Over the past week, Ron has increased his daily protein intake, but it will take many more weeks to see if he can undo the damage already done by not getting proper nutrition (largely due to lack of appetite).  For now, there is nothing Ron can do about the edema except be uncomfortable.  Both of us dislike this answer, but there doesn’t seem to be any thing more that can be done.  It is a bit frightening, because he has been drinking more with the heat this week, but his fluid output has decreased . . . and we know that fluid has to go somewhere . . . and we can see where it is going.  We just have no way to redirect it. 

In trying to write about Ron’s edema and make it understandable, I did a few different searches.  All I can say is that his case seems pretty severe.  I avoided reading about the variety of complications that can arise from ascites and edema.  Several months ago, I was reading about people with severe malignant ascites and what I read was so grim.  I don’t feel any need to read about what can happen to him because of the edema, other than knowing we need to closely monitor his breathing to make sure it does not creep up into his lungs. 

Ron continues to outlive all medical expectations for someone in his condition.  That is the one constant I see when I read about his symptoms and diagnoses and compare it to how long he has survived and how stable he continues to be, all things considered.  We are financially stable for the next 5-6 months.  Ron tells me he doesn’t think he will live 6 more months.  I remind him that only a few months ago, he didn’t think he would live to see his 30^th birthday and he just did that.  My hope is that he lives on, exceeding even his own expectations, and that in 6 months, when the money runs out, I can happily put out the plea for more assistance, knowing the support will come from the strong community of individuals who care about us.