It’s short, but it’s all mine.

I used to have dark hair (well, compliments of hair dye, but I had dark hair growing up) that was very thick and wavy/curly. Now I have fine hair that’s straight and I’m tending towards a lighter color when I do dye it because I liked the color of my wig that I only wore a few times and it was lighter than my hair. I don’t know if my hair will change texture; I guess we’ll have to wait and see. I’m actually getting used to this short hair and definitely liking the fact that it’s the easiest hair style that I’ve ever had. EVER.

Just ignore the huge bags under my eyes. Those seem to be a fixture for the time being; I hope they’re not permanent. Sometime when I get more rest, maybe they’ll go away. And the double chin too; I hope when I get more strength and can exercise some, they’ll go away as well. I really want to get on a healthier regime after the recovery from the surgery is over. Anything I can do to keep the nasties away.

So there I am. If my eyelashes ever grow back to a reasonable length, I can wear my contacts again, but it is taking forever for them to grow back. My eyebrows are pretty much back in. And I don’t see why leg or underarm hair needs to come back at all!

Hair, what a nice thing to have.

Yes, that’s me, Dorothy of the Wizard of Oz, confused as ever.

My sister, J., is back at our house, and of course we’re glad to have her here. The reason she’s here, and she got here so quickly, is that Mom is being discharged from the hospital either tomorrow or Friday.

*blink* Huh?! Wha?!

Yeah, so much for 30 days in the rehabilitation unit in the hospital. There was some meeting about her yesterday with the players in the rehab unit — the Rehabilitation Dr., the Speech Therapist, the Occupational Therapist, the Physial Therapist, and the Social Worker. I don’t know if anyone else was there. I guess her primary care Dr. wasn’t there. Because she’s no longer “meeting the requirements” for the rehab unit in the hospital — translated that means she hasn’t been making enough progress there — she’s being discharged from the unit and will be entered into a nursing home near where my sister, M., lives. They do have all of the rehabilitation that she needs in the nursing home; the rehab just won’t be as intense.

Apparently, Mom wants this. I’m shocked, to say the least. I had selfishly hoped that we could visit her a couple more times with Nate down here before she was moved a few hours north, but like I said, that’s me being selfish. I wanted that for Nate too, because he’s going through so much right now and he loves his Grandma so. But I know it’s not about me or about Nate; it’s about Mom. I hope this is the best thing for her.
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As for me, my MRI came out fine; no worries there.

I guess the upside to her moving now is that things won’t be so crunched when it’s time for my surgery.

I went to my cancer support group last night which was just wonderful. I love those people. When it came time for prayer, C. prayed and said some special prayers for me. How very sweet of him.
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Well, things can change quickly, as they are. I just have to put my trust in God that everything will work out.

And b*r*e*a*t*h*e.

We now have a surgery date of Aug. 6. We won’t know the exact time of surgery until the day before, but it will be sometime in the morning. I’ll stay in the hospital 1-2 nights; that will be up to me, but my surgeon said that I’ll be there at least one night.

I’ll have a modified radical mastectomy which basically means that they remove the breast and some lymph nodes (but not all) to test them to see if any cancer has spread to the lymph. If there is any cancer in the lymph nodes, then I’ll receive treatment (probably radiation) to that area. The oncologist had mentioned radiation after surgery anyways, but as with all of this, I’m taking it one step at a time. Recovery time is from 4-6 weeks, most likely about 4 weeks. The surgeon said I’d start feeling better in about 2 weeks with full recovery expected in about 4 weeks.

One of my co-workers has offered to get people around campus to sign up to provide meals during the time that I’m recovering which is very kind of her. Frank won’t be teaching classes at the beginning of that time, so that will be good.

Somehow I feel better just knowing when it will be. Time to get the next step of this cancer treatment over.

My pastor, D., is a wonderful man. Nate and I went to church today, and Pastor D. said before the service that he would like some time after the service to have some prayer with me. I met with him afterwards. We sat in the front pew of the church and he asked about how things were going with me and how things were going with my mom. He and his wife are leaving town on Thurs. and will be gone until the end of the month and he wanted me to know that in case my surgery will happen while they’re on vacation. He’s let the Associate Pastor know that I may have surgery while he’s gone.

D. and I talked. He asked if my mom’s spirits were still up, and I said that they really weren’t, that she seems to really understand now what’s in store for her. He asked if one of my sisters would be able to come down to help me out when I got out of the hospital, but I said that we weren’t sure; it depends on when I have the surgery because it may coincide with Mom leaving the hospital or Mom being moved to a facility near my sister. It’s all so very complicated. When he asked me what specific things I would like him to pray for, I drew a blank. Then I pretty much threw everything in — Mom, Nate, my surgery to go well, my family of origin, blahblahblah, and I ended up saying something about how everything has gotten so complicated with two of us being sick now. Complicated. Definitely. I explained that Frank won’t have any classes at that time, though, and we’ll mostly need help with Nate at night and we do have support with people in the church and friends of mine that I can call on.

Pastor D. then started praying and I don’t remember exactly what he said, but he always just says the right things in prayer. The tears started coming quietly down my cheeks as he prayed, with him holding tightly onto one of my hands.

In Jesus’ name we pray. Amen.

“Amen,” I repeated, and I thanked him for the prayer. He gave me a card of his with his information on it, including his cell phone number. He told me that I could call him while he’s on vacation on his cell number and he’ll get back to me. Wow. He must be one of the most compassionate people I know.

He reassures me that the Lord is always with me, every step of the way. I know this is true. My faith has grown so much during this journey, and it sustains me during my darkest days. The dark days actually are fewer because my faith has grown so much. The Holy Spirit holds me up.

On the back of Pastor D.’s card is a scripture with the heading Our Prayer:

Love must be sincere. Hate what is evil; cling to what is good. Be devoted to one another in brotherly love. Honor one another above yourselves. Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer. Share with God’s people who are in need. Practice hospitality.
Romans 12: 9-13

And the people said:

Amen

Let it be so.

Two-fifths of my family of origin is sick — me and my mom. That makes things difficult for . . . well, for all of us, frankly. The other three are trying to do what they can to help both of us. Right now, I’m in a kind of holding pattern so I’m able to help Mom to a small degree, which mainly means Frank, Nate and I visiting her at the hospital when we can.

Just a short time ago, Mom was a source of strength and support for me, coming down here almost every weekend when I was having chemo. Weekends were so very rough for me because Frank works his parking garage job on weekends and I was always so wiped out and it was hard to take care of Nate. For awhile, my sister M. and mom were taking turns coming down, but then M. took on an extra job during the summer — they need the money. So Mom was coming down almost every weekend.

There were only a few weekends of the full dose chemo left when she had her stroke and I’m not complaining about that at all. My goodness, I would never do that. My mother was the one who felt bad that she wasn’t able to come down and help me and I told her that of course she didn’t exactly plan to have a stroke so she wasn’t to worry about it at all. It’s just the difference in her is striking. From coming here and cleaning my kitchen, playing Junior Monopoly with Nate to these days — I don’t get to the hospital when she’s doing her rehab so I only see her in the bed, lying down, talking very well, but knowing what has happened and what’s in store for her. Her life has changed irrevocably which she keeps talking about. It’s a bitter pill to swallow. Of course, when she talks about how life can change so suddenly, I can say, “I know, I know,” and I do. I can remember the exact moment that my life changed suddenly.

The Dr. told her on Thursday that the feeding tube may be in for up to three months, that relearning to swallow sometimes takes a long time. Mom had a very difficult time after Dad died, but she built a life for herself and became very independent during the past 20 years, traveling by herself, traveling with elderhostels. She traveled more than once to Norway to visit relatives (her father immigrated from Norway), she traveled to England with me, to England with my sister J., to Italy with my sister M., she went on an Elderhostel to Australia. She went to Chautauqua several times with my brother’s family, she visited each of her children, she visited friends and family in Minneapolis, MN where she was born. It’s all changed, in the space of probably minutes. Everything. I feel so badly for her. My sister J., who talked to the hospital social worker, said:

The concerns remain balance, her inability to do high complex abstract thinking, and her obvious frustration when she is not able to do what she wants her body to do.

And the swallowing issue, of course. Mom has said to me that she can’t wait until she can taste real food. The danger right now is of food going down the wrong tube and of Mom choking and asphyxiating.

I just feel like we’re a sad family right now, although we’re dealing with it in our somewhat dysfunctional way. *sigh*

Of course I don’t know yet when my surgery is, but there’s a chance that I’ll be having surgery about the time that Mom is being moved out of rehab or moved to a facility in near where my sister M. lives. Suddenly, a larger family seems like it would be nice so we could get more help.

I mentioned my surgery to Mom tonight and she said that she had planned to help us the entire time that I was recovering from it and she feels badly that she can’t. Typical mother, huh? I told her that she didn’t exactly plan to have a stroke so it was really OK that she couldn’t help and that we would be OK. Frank’s classes will be over then, Nate will be in his summer program during the day, and we’ll have to ask for help with Nate during the evenings. We just will. I can’t be shy about it anymore.

I always feel kind of melancholy after I see Mom. It must be that feeling of being part of the 2/5. The needy ones, the sick ones. Wow, I hate this, for both of us.
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I tell you: you can’t take anything for granted. Cherish what you do have. Love the life you have, tell family and friends how cherished and loved they really are. Thank God for every day that you have on this earth. Appreciate getting older and being healthy. Not everyone gets that chance. Forgive. Don’t hang on to resentments or hatred; the only person/people it hurts is you. Life is just too damn short and too damn hard.

Love yourself and love each other. That’s what we were put on this earth for. We make things so much more complicated than they need to be. Just slow down, listen, and love.

Love.

You never know how much time you will have to love.

Don’t miss it.

I am proud to consider this woman my friend, albeit through the internet (now, we all know that internet friendships are real). I am especially proud of the work she’s done to raise the awareness of Inflammatory Breast Cancer. The CNN article is great. Read it.

I’m also very proud to be a part of Mothers With Cancer with Susan.

She’s a gem.

I had the MRI today. Lots of loud, strange noises, definitely, but they do provide you with earplugs so that’s good. They split it up into two parts. The first part was 15 minutes long, and you have to stay very still. I closed my eyes and tried to recited The Lord’s Prayer to calm myself. It was the weirdest thing — I kept having trouble remembering the prayer, so I just kept starting over and over again until I could remember it. It worked at calming me down though. The second part, they injected me with the contrast dye. They said they could use my veins or my port so I just had them use my port. That part was six minutes long. You would think I could stay still for six minutes if I did it for 15 minutes, but the technician said that it looked like during part of it I moved a bit (I think I licked my lips for a split second) so they had to keep me in there four extra minutes and I made sure I laid completely still. Kept my eyes closed again and did the same thing, repeated The Lord’s Prayer. Kind of like meditating, I guess.

The appointment with the surgeon is on Monday morning, finally! We’ll find out what kind of mastectomy he recommends and the surgery will be scheduled. At this point, I just want to get on with it, and get another part of treatment over. Once I’m recovered from the surgery, I’ll have radiation and then continue with maintenance chemotherapy and also take Tamoxifen.

I hope that’s it for awhile — just the maintenance chemo and the Tamoxifen. And back to life as a new normal.

Because it will never be the old normal life.

That’s OK. We’re dealing with things as they are. Our family is strong and loving and our faith is strong and growing.

Whatever happens, we’ll deal with it.

I just hope we get to coast for a bit.

I could use some coasting.

I just want everyone to be . . . . well, if not happy, then OK with where they are in life, not too terribly unhappy.

There are a lot of strong words flying around adoption bloggerville lately, and it always makes me ponder things about my own little adoption family and then the wider adoption world. I have learned so darn much about adoption since I started reading blogs by all members of the adoption world, and I learn more every day. Of course, I wonder how all of this relates to my family, especially Nate. I can’t predict that, of course, for Nate’s journey is Nate’s journey. His story is his story. Truth be told, I don’t even know all of his story, even now. There are four months of the beginning of his life that are lost to Frank and I, and the time that he had with his mother in utero are lost to us too. Her story is lost to us, and the stories of his extended family, his ancestors, and on and on. There’s a country and a culture in Vietnam that’s lost to him. That’s all part of his story, or would have been part of his story. I’m not even sure how that works. Maybe other transcultural adoptees can fill me in. It’s a loss, I know, and I can only fill in the blanks to some extent.

Nate now continues his story, his life story, his adoption story. I’m a part of it, but it truly belongs to him. What parts he shares with me are up to him. Frank and I encourage open communication, we see Dr. Smart Cookie for family therapy to deal with various things going on in our lives, adoption being one of them. We share things there. He’s very open there, but we can’t know all of what goes on in his mind and his heart. We can stand beside him and help him through his loss issues as they may come up in future years, but we can’t fix them for him. The most that we can do is offer help if he should want it and be witness to his story if he should allow us that honor. His future, his story will continue to be his, not ours, although we play a part in it.

No parent wants their child to feel pain, yet pain is a part of life. The most that we can do is try to ease the pain, help him see the lessons in the painful parts of life, come to us for comfort. Tell him that he can always talk to us if he wants to. Provide him with other safe people to talk to, like Dr. Smart Cookie. Model for him ways of processing our own pain. Stay strong as a family throughout painful periods, as we are now.

I know now that the very act of Nate’s relinquishment and subsequent adoption will be a part of his pain, his loss. If I had it to do over, would I adopt Nate? You know, I can’t answer that question because it disrespects the wonderful family that Frank and I have built and it disrespects Nate’s very place in our family. All I can say is that so very much more needs to be done to try to keep mothers and children together all over the world, so much more that it seems an incredibly daunting task.

I respect all members of the adoption world, but I mostly think that things need to be flipped with adoptees getting the lions’ share of the voice, followed by first families, then adoptive parents.

It reminds me of what happens when we have family therapy with Dr. Smart Cookie. She acknowledges all of us, but when we sit around her table, her attention is solely focused on Nate at first. She asks him:

Nate, how was your last week?

and they have a dialogue about how his last week went.

Then she turns her attention to Mom and Dad and helps Mom and Dad change their reactions to some of Nate’s less desirable behavior. It’s all about Mom and Dad changing in order for Nate to change. Of course, here we’re talking about a 6 year old.

I’m wondering how it might work if the “child” was an adult adoptee. I imagine part of the scenario being the same, that the attention would be focused on the “child.” Still, there would be boundaries about behavior, about what is acceptable behavior — and that means acceptable for the parents towards the “child,” and acceptable for the “child” towards the parents. It’s all about mutual respect.

See? I am naive! I can just sit here and whine:

I just want everyone to get aaaaloooonggggg.

Sickening, aren’t I?

*sigh*

I had a good day today, YAY!!! It actually probably started last night with a wonderfully comforting email from a friend of mine, another friend who’s also kind of a spiritual mentor. She just always knows exactly the right thing to say and usually has a scripture for me that helps. She’s calming. So I’m much more calm about tomorrow’s MRI, at least I am now. I need to remember J’s words tomorrow to keep myself calm about it, to leave it all in God’s hands and not stress about it. I was so touched by her saying this:

In all of this Judy God is very pleased with your trust in Him. We will just keep trusting in Him for the miraculous. He is not bound by our limitations.

And today? Weeeeellll, how could today NOT be a banner day when Frank, Nate and I went to visit with Firemom and her family? That was great, and reminds me that we simply have to do that more often since we don’t live that far away from each other. They are just the best, really they are. This was the first time I met the adorable Little Brother too, and Big Brother is a hoot with quite the repertoire of funny sounds. I love that family.

Then we came back here, and Nate and I went to visit my mother who looks better and sounds better. She’s still having problems with her left arm. She has to use her right arm to move it; she says it’s like having a dead weight. She told me that the rehabilitation is going slowly, but she is making improvement. Her primary care Dr. came in while I was there. I was glad to meet him. He said that she would probably be discharged from the rehab unit at the hospital after 30 days from entering the rehab unit. That’s standard for the hospital rehabilitation, even if the patient isn’t fully rehabilitated which she probably won’t be. So she’ll have to go to another rehabilitation place afterwards, probably one near my sister, M. She asked the Dr. about the feeding tube and he said it might be in for up to three months, that these things can take a long time to recover from. That’s because she can’t swallow properly. Poor Mom, she said she can’t wait until she can eat real food. They try with her every day, but she gets most of her nutrition from the feeding tube.

She was very happy to see Nate and I. Frank was teaching a class tonight so he wasn’t able to come with us. Maybe we’ll all go up sometime this weekend because I plan on being healthy, DARNIT!!!

After that, Nate and I stopped for dinner at TGIFridays, then came home. It was a full, but fun day. It’s fun for the three of us to do things together. Due to Frank’s and my schedules often being at odds, it doesn’t happen much so we really enjoy our family times together.
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An uplifting post needs to end with an uplifting quote, no?

Give thanks to the LORD, for he is good; his love endures forever.
1 Chronicles 16:34

Frank’s poem:

HOPEFUL WORDS

On the bad days
death elbows in,
becomes a visitor
who will not scare.

My wife is quiet today,
thinking about the incurable
nature of her illness,
which robs her of words.
I always wish I could
get her mind on something else,
say something funny or interesting
to banish what is unsaid,
but I am silent too.
Where her thoughts take over
my closeness ends,
and I can do little.

When the darkness loosens
we reassert stubborn, hopeful words,
and faith returns.

copyright Frank K., July 2008

crossposted at Mothers with Cancer