What hurts and what helps

In the past few days there are a stream of posts on ALL parents list about what comments from families and friends that they could live without.  I thought it was worthwhile to share and could let out some of the bitterness of my own.  It doesn't apply to any of you who are reading this post -- as I know you are dear to my heart by keeping reading my blog so far into the journey.  The fact is that it's a very long journey and most people lose the initial steam very quickly.  It's a very lonely journey too when your world is strictly about your cancer kid and isolated from your old life -- and sometimes there doesn't seem to be a light at the end of the tunnel.   Most people don't talk to me about anything other than my cancer kid any more.  And very soon I don't want to talk to any of them since I don't want to be constantly reminded about my cancer kid.  I do my vent here and don't want to repeat any of the comments once again if I don't have to.  My identity has changed into having just one facet: mother to a cancer kid.  As one other Chinese cancer kid parent mentioned "we suddenly became the minority of minorities".  As David Servan-Schreiber said in "Anticancer": "I began to feel frighted that I was in a category apart, a category of people defined primarily by their disease.  I was afraid of becoming invisible.  Afraid of no longer existing, even before dying.... Most people seemed to think it was wrong to have a good laugh when you had a serious illness."  Yep, that's pretty much how I feel.  And what else to do except to suck it up and get used to it.

Here are some of the things that bother us the most:

Don't #1: don't tell me that I'm strong and my cancer kid is strong.  The fact is that we are not any stronger than you and we don't even want to be strong.  The undertone of that repeated comment is "I'm glad you are dealing with it, not me!"

Don't #2: don't keep asking me what my practice has been while being pregnant and raising up kids.  I know you don't want it to happen to your kid.  But do your research elsewhere and don't keep picking on my anecdotes.  The undertone is that I did something wrong to cause my kid to have cancer.

Don't #3: don't ask me when a bone marrow transplant will be done.  It's okay that you don't care about my cancer kid and want to stay away from me.  But if you do care, by now you should have known that most leukemia kids are treated by chemotherapy alone and can be cured.  Bone marrow transplant is reserved for kids who are in worse condition than my kid is in.  I don't want to hear about it.  Thank you very much!

Don't #4: don't tell me that we are lucky to have this rather curable cancer and the cure rate is 4 out of 5.  I know my statistics and don't need to be lectured.  Let me ask you: how do you feel if you know your kid can't make it 20% of the time?  Do you feel lucky?  How do you feel when you spend 23 out of 29 days in hospital with your kid, constant worrying about the worst might happen?  Do you feel lucky?

Okay, so by now you feel like you want to stay away from me even more.  Right, what could you say or do to make me feel better?

Do #1: Just let me know that you are listening via comments, emails and messages.  The sheer existence of you is all I need most of the time.  It is very lonely sometimes.  When I'm frightened and worried, just let me know that you feel the same thing.

Do #2: Just try to keep up the same conversation that we used to have, maybe through email rather than phone calls and in-person conversations.  It actually won't make me feel bad by sharing the excitement in your life.  Quite to the contrary, it makes me smile to know what's going on in your lives.  Whether it's about parenting, cooking, fashion, dancing, crafts, reading, movies, fitness or whatever topic that you know I'm interested in, keep me in the loop!

Do #3: I really appreciate a friend, who were not even a very close friend, that came up with a list of actual things that they could help.  Whether it's to give some normalcy to Alex or my parents, highly appreciated!  Also highly appreciated is meals sent and recipes shared, geared towards Lucas's better food intake.  And watching my neighbors clearing snow off our driveway definitely puts tears in my eyes.

Do #4: I know this one is going to be hard.  But if there's anyway that you can get me out relax a bit, away from Lucas, that would be very nice.  I'm looking forward to going back to work on Monday, though I'm not looking forward to answering questions about the hospital stays and Lucas's conditions. I will try to mix in some jokes when answering those questions to lighten it up -- and please laugh with me if all possible.

Notes on Lucas: we came home yesterday and he has been doing well.  I poke his fingers for glucose at least twice a day.  I still need to practice as I have been needing to poke him twice for a single reading.   Note to myself: my glucose before dinner yesterday was 71 while Lucas's was 79.  Not eating carb for lunch makes a huge difference.  Carb + other things distributed evenly throughout the day should help.

Today is the last day of his 4 week IV antibiotics.  He started to have another rash from the extra adhesive.  Theoretically the needle to access the port only needs to be changed once a week.  But for the past 4 weeks, his needle was changed 3 times prematurely -- once because the nurse reached out to something while holding the end of tube and pulled the stickers off, twice the stickers came off prematurely on its own.  But the extra layer of adhesive really bothers him, so I'm really glad they can be off soon and the area around his port can finally breathe a bit after 4+ weeks!