A few days ago I wrote about the impossible situation I would be in, having to take two weeks off without pay before I could borrow sick leave donations because I had run out of sick leave (actually I had a negative balance). I took the matter up with someone at the Big Campus. Then, someone who is a colleague of mine and also a very good friend took it upon herself to talk to the Associate Dean on my campus, hoping I wouldn’t be upset that she did so. I wasn’t.

The Associate Dean talked to one of the Big Kahunas up at the Big Campus, and things changed. It didn’t take much time at all, considering, and this afternoon I got the official word that I am indeed enrolled in the sick leave donations bank, starting now. I can take sick leave from this bank while I’m still working. In addition, my sick leave will still accrue while I’m working.

Chances are very good that I’ll run out of the amount of time that the policy stipulates that each person is permitted to obtain. I’ll probably run out around the end of July. However, I can then either use vacation time or apply for an extension of thirty days, or use a combination of both. If I apply for an extension, I’ll have to plead my case in writing, something that probably won’t be difficult to do.

I am incredibly relieved and very heartened that The Powers That Be really do take individual circumstances into account when making these decisions. Too often it seems like workplaces look at their workers as numbers or just people to get jobs done, not as individuals. This has given me some hope that we are, once again, individuals, at least in this case. With this illness looming over my head, I do matter. They are actually trying to make things easier for me so that I don’t have to worry about sick leave and can just concentrate on working when I can, but mostly on getting healthy.

I can’t thank the people here enough for your offer to gather funds for me via PayPal. I really can’t tell you how very touched I am. For now, though, the matter has been resolved and we won’t be without a paycheck during any of my time off. Thank God!

Once again, I realize how very blessed I am, even throughout this whole ordeal.

Blessed.

Good Chemo Report

The toxic stuff makes her tired, and sick,
but it is also doing what it is supposed to,
shrinking tumors, which, at the very least
buys us time, and we need time to keep
what is precious to us, my wife, around.
She is precious to herself, which I realize
now, and precious to me, which I can’t articulate
except with stammering confessions,
or what seem like confessions, expressions
of faith which touch a tender nerve,
and leave me thinking I haven’t said enough.
Her friends, and she is deep in friends, say
as much, or more, than I do, repeating
each other because the words all follow
the same path, sadness and determination,
or anger and hope or fierce protectiveness,
and indeed the words do protect my wife,
banish loneliness temporarily, or help
to put together a good day, and she
needs good days to follow bad days.
She told her therapist as much, saying
the silver lining in all of this was
the realization so many people love her,
which helps in the midst of danger.

We will take what the oncologist gives us,
enough to satisfy our mutual greed for life,
and pray for more time, more health,
a lengthening horizon before us.
We never do want to say goodbye.

copyright Frank K. 2008

At the same time that I’m rejoicing at my good news, my heart aches for others. My “sister” Julia is struggling and needs our constant prayers. She is such a good soul, such a beautiful person, inside and out, and has been fighting for so long and so hard. She needs us — our combined strength from afar, in thoughts, in prayers, in whatever you have for her.

And another, a co-worker/friend, who sadly lost her baby granddaughter this morning. This granddaughter just recently had the fourth open heart surgery, the last one she would have until she reached adulthood. Everything had gone so well up until this one when her heart wasn’t responding, her kidneys weren’t working, and her blood pressure wasn’t regulating. The poor little one died this morning. I can’t imagine this family’s grief. They’ve been through so much with this little girl and now she’s gone.

My friend Krissi is grieving due to the loss of a good friend of hers, a vibrant young woman who died suddenly. Senselessly. “Why?,” her loved ones must all be asking. The grief will be all-consuming for her loved ones for some time, I’m sure.

The first mothers who are grieving their lost children all the time, but maybe a little bit more around Mother’s Day, an in-your-face reminder that their placed children aren’t being mothered by them. It’s grief, plain and simple. It’s a loss and it’s unfair and it’s ongoing and once again, it’s something that I can’t imagine and I can’t take away. Particularly Suz who is not only wondering about her daughter who is graduating and who might disappear into the ether of non-addresses, but whose mother is now having a health crisis. Send good thoughts Suz’ way. Nicole who is struggling with hearing from her daughter, Moonbeam, on Mother’s Day. Jenna, who wrote several poignant posts about missing Munchkin around Mother’s Day; I simply chose one. I’ll mention Circus Peanuts again; she actually had her daughter on Mother’s Day nine years ago. Lauren who I suspect hides her sadness through her “I don’t care” attitude. I hope you don’t mind that I included you, girlie; you know it’s out of love. I could go on and on, you know. I don’t mean to dis’ anyone by not mentioning you, but really, anyone listed in the First Parents’ section of my blog is probably suffering.

And adoptees as well. One in particular I need to mention at this time is our Theresa who is suffering because of being recently rejected by her first mother. Other adoptees know this rejection as well, such as Mia and Possum. It has to still hurt.

It’s not guilt that I’m doing well — well, in the world of cancer, that is — and others aren’t. Guilt implies that I’ve done something wrong and I haven’t. It’s just a sense of the unfairness of it all, a sadness underneath the joy for me. A knowledge that things don’t always add up. A sense that while I wish I could take on the burdens of all and make them better . . . . I know I can’t. I simply can’t. I do the little that I can. I say comforting words. I pray. I pray some more.

It never seems like enough, but it’s all that we mere mortals have.

I pray and I hope. And I rejoice when others get good news and can be joyful about something as well.

I always hope that lives and hearts can heal some.

I pray for that every day.

Not just for myself, but for all of you.

We met with the oncologist today and we got more specifics about the results of the CT scan.

I had received some misinformation from the phone nurse about some specifics but now everything is straightened out. It’s all very good news. My oncologist, who is not prone to superlatives, kept saying that it’s “very good,” and even said that she did her “happy dance” when she got my results.

The tumor in the breast used to be about/at least 2 inches and it’s now 1 inch. Both tumors in the liver used to be one inch and now one of them is less than 1/2 inch. The other is 3 millimeters — her description was “as thick as the side of a nickel.”

She anticipates two more months of chemotherapy if all goes as she expects. This is subject to change, depending on future CT results, of course.

After that, I’ll have surgery (mastectomy) and possibly (not sure yet) radiation. It’s yet a long road, but I’m ready for it.

Thank you all so very much for all of your prayers and thank you for continued prayers. By the grace of God and with great medicine and a fantastic oncologist, I am seeing incredible healing.

God is very good, indeed.

I suppose I shouldn’t complain because my workplace does give us the benefit of being able to request sick leave from a sick leave bank — that is, other people have donated unused sick leave and when I’ve used up all of my sick leave and vacation leave, I can request to use that leave from the sick leave donations.

There’s a catch, though. I can’t use any of that leave while I’m actively working which I still am. I typically work three days/week and don’t work the days that I have chemo (every Tuesday) or the days that chemo wipes me out (every Thursday). I’ve had other days when I’ve felt too sick to go into work also. So, I’m not able to take advantage of the sick leave donations while I’m still actively working. As the policy stands, I have to be off of work for two weeks, unpaid, before I’m able to take advantage of the sick leave donation program.

We really can’t afford to give up two weeks of pay from my job. On the other hand, we don’t have any other choice once I run out of vacation time (I’ve already run out of sick leave time) and use up some of my future vacation time (which I’ll probably be allowed to do).

The lady who works with this policy at The Big University where I work (I work at a regional campus) is trying to get the policy amended so that people like me (and there are more, she told me) can take advantage of the sick leave donation program while we’re working part-time. I’ll keep working and using up my vacation time and see if she can get things worked out.

Frank and I are trying to figure out how we’ll make it without 1/2 month’s pay — and we will, somehow — but it all seems incredibly unfair to me. Like I said, maybe I shouldn’t complain because we do have this program in the first place. Maybe I should just be grateful that I can use other peoples’ sick leave and get paid the rest of the time that I’ll be off of work. It just seems unfortunate to me that people who are willing to work won’t be able to because of how the program has been set up. Also, these same people will be forced to stay at home for two weeks without pay before they can take advantage of the sick leave donation program, something that I imagine will be a financial hardship for many people.

It’s just that it’s hard enough to have cancer, go through everything that I have to go through, only to be hit with this. It would be nice for a workplace to be a bit more compassionate when someone is forced to deal with an unexpected health crisis, but I guess, as always, the dollar is the bottom line.

To me, though, we all lose out. I stop working before I need to so my department loses any work that I could do for them. My family and I lose out because we’re forced to find other ways to fund our living expenses for 2 weeks. The university loses in worker morale.

They sure don’t make any of this easy.

Rock - Me - Hard Place

not for me, but for someone else. I was just looking through the adoption-related posts in WordPress and came across this blog named Circus Peanuts written by a woman who is obviously a first mother. This is a relatively new blog. The post that really tugged at my heart, though, is the one titled What I Can Remember which talks about giving birth to the daughter that she relinquished nine years ago on May 11. Yes, May 11.

This is just one of the voices that will be hurting this weekend and tomorrow, Mother’s Day. I think she could use some encouraging words.

Please help her out.

I was all set to write about how we don’t do much on Mother’s day, how my first Mother’s Day I felt that Frank didn’t do “enough” to celebrate it for me and I had a hissy fit but one of the next two Mother’s Days, I got over myself. I was going to say how I don’t like the fuss people make over it because it’s hurtful to some people, adult and child alike — first mothers, mothers of loss in many ways, children (adult and non-adult) of loss in many ways. That holidays like this — including Valentine’s Day — just seem to magnify the loss of people who aren’t included in the celebrations.

I was all ready to write all of that, but then my sweet boy, covered in dirt practically from head to toe, came in the door with a white gift bag, his name on it, and a poem dedicated to mothers on it. Obviously they had worked on this at school today. Inside of it was a picture of Nate with a frame that he made, obviously with the teacher’s help. On the back of it is a magnet. I’m going to take it to work with me. Also inside was a little plant that he planted in a little blue container. He told me that it’s a marigold plant and proceeded to overwater it. I just melted.

Typically at our house, we don’t do much for Mother’s Day or Father’s Day. When Nate asked me a few days ago what I wanted for Mother’s Day, I told him that something that he made would be great. What he gave me was just perfect, and I truly don’t want or expect anything from Frank. For one thing, I’m not his mother. Besides, I just don’t need a lot of presents.
_____________________________

I thought that would be the end of this post, but it seems that Mother’s Day just isn’t as simple as even what I wrote above. No, now I hear from Erin of Seriously? that NBC has deemed us adoptive mothers non-moms although now they’ve changed the category to “The Adopting Mom,” probably due to a plethora of complaints. My issue is that they had the category “The Non-Mom” to begin with and included adoptive mothers in that category at all.

Not cool, NBC, not cool at all.
_____________________________

Honestly? Even though I did absolutely melt with my son’s early Mother’s Day presents? — I still have this unease with these celebratory holidays that leave too many people out or that have the potential to cause too much hurt to too many people.

I remember many years after my father died how I felt on Father’s Day. Everyone was celebrating their fathers and I had no father to celebrate; it just seemed to magnify my loss. Even when Frank and I were married, neither of us had fathers to celebrate, so we just kind of said to each other, “Oh yeah, it’s Father’s Day. Hmmm . . . . . so, when did your father die?” Kind of morbid, no? It wasn’t until we adopted Nate six years ago that we were able to celebrate Father’s Day again.

I think the same thing about Valentine’s Day, about all of those people who don’t have someone and for whom their loneliness is magnified on a day like that.

For us, most of those days are pretty low-key just because that’s how we are and because that’s how we were raised. Since I’ve met mothers of loss — loss of various kinds — and children of loss of various kinds, the point has been driven home to me that Mother’s Day isn’t a happy day for a lot of women, for many children.
_____________________________

Did you know that the first proposal of any kind of Mother’s Day in the United States was by Julia Ward Howe?

It was a call to unite women against war. In 1870, she wrote the Mother’s Day Proclamation as a call for peace and disarmament. Howe failed in her attempt to get formal recognition of a Mother’s Day for Peace.
(Mother’s Day article)

Now, that kind of Mother’s Day I could get behind!

she said as she turned when we said our goodbyes, me leaving the office.

“WHAT?!,” I wanted to say, “I’M amazing?! What about you? You’re this national/world renowned psychiatrist, so smart, so wise. Me? I’m just learning from you!”

Instead, I was so taken aback, I just muttered a “thank you,” then made arrangements with the office staff for our next visit.

This post has been in my head for a long time but I wasn’t sure how to write it, if I could write it, if I could do it justice, but Margie’s beautiful J-Day post, Spirit has inspired me to try.

I’m talking about my last visit with my psychiatrist, Dr. Cool Indian Lady. She talked to me about how I was doing, about quality of life throughout this whole ordeal and how she could help from her side, from the psychiatric side. Then she asked me, “is there anything good that’s come from this?”

I said that there actually was, but talking about it always made me cry, and I started telling her:

I now know how many people love me. It’s just amazing, the love I feel these days.

and I talked about that a little more, tears streaming down my face, tears of pure emotion, of joy, of feeling overwhelmed with love.

Dr. CIL, who is Hindu, talked to me about her beliefs, that we are reincarnated and with each life we try to get closer to God. She told me that I must have done a good job in my last life for so many people to love me. I think I’m getting this right, but this is where I’m not sure I’m doing it justice. I loved listening to her talk, tell me of her beliefs. My best friend growing up was Hindu and I used to be fascinated to hear about the Hindu religion.

Then we talked a bit about how having an illness like cancer puts things into perspective and I told her about my conversation with Frank about not wanting to go to Europe just for the sake of going to Europe because I want to focus on the people and places that are important to us, not things like buildings and cathedrals. She smiled at me when I was saying this, and it was shortly afterwards when she said the “you’re amazing” comment which really threw me.

You see, I look up to Dr. CIL. I’ve said to my therapist that every time I see Dr. CIL I just think that she’s really smart and wise and I can learn so much from her. And she is very spiritual. This past session, she asked me about how I was dealing with things and the first things she mentioned were faith and family. She was glad that I was leaning on my faith and my family and friends. During one of the previous appointments, she told me that she was praying for me and her mother in India was also praying for me. I was so incredibly touched.

And Margie’s right. I ask for prayers, and I ask for good thoughts, or whatever makes people comfortable, from whatever religious or non-religious background you may have. I’m a Christian, but I see beauty in many religions. Not everyone in my church would agree with me, but then, I’m not everyone in my church. I’m my own person. I have a faith that is getting stronger by the day because of what I’m going through and God is being good and faithful to me. It’s not always easy, believe me, but I’m getting there.

Thank you, Margie, for that beautiful and inspirational post and for the reminder for all of us to be open in our dealings with those of different religious backgrounds.

In closing, I’ll share what’s become one of my favorite scripture verses which I think people of various religions can appreciate. It’s a reminder that I so often need, to focus on the good things and not focus on negative things. So true, and such a difference it can make.

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.
Philippians 4:7-9

I called my oncologist’s office today to see if they had received the results from the CT scan yet. The phone nurse just called back and said that Dr. Funky Glasses said:

All of the disease is responding well to the chemo.

There’s no miraculous remission, but that’s really OK. To be quite honest, I wasn’t really and truly expecting it. I asked for measurements, but I think I need Dr. FG’s help in translating them a bit better. I was excited to hear that one tumor in the liver they “‘can barely see” now.

Of course this means more chemo, but in the beginning, she thought I would need “at least six months” of chemo. So right now I’m probably at the 1/2-way point of chemotherapy. As we had initially thought, I expect that I’ll need surgery and radiation after that, but I’m taking this one step at a time.

But it’s good news overall. Good news.

And good news, I’ll take.

Thank God.

Somehow, I don’t think I’ve been humbled as much as I’m going to be in this cancer journey. I think the humility that I’ve had to experience is just the tip of the iceberg, really. It’s not always easy either, humbling yourself, accepting other peoples’ offers of help, gifts, whatever it is that they have to give. What I’ve received so far has been relatively “easy” to accept — gifts, prayers, good thoughts, dinners from church people, assistance in other ways.

At the hospital or the doctor’s office, I’m humbled in so many ways, but then again, I expect it there. People are taking care of me. I’m sometimes in a gown, exposed but not quite. There was the time that there was a simple misunderstanding with a nurse in the Chemo Room and it was during a “bad” week, I was feeling very emotional, and I started crying. All that just because I was confused about my schedule. It’s vulnerable stuff. Very humbling.

But this stuff at work just about has me undone. For some reason, asking for donations of peoples’ sick or vacation leave here at work is putting me over the edge; I don’t know why. Every time I look at this stuff, read the email from the lady in charge of it, print out the forms, I start crying. It’s the most humbling I’ve gotten so far, I guess. Maybe it’s because it’s my workplace, where I’m supposed to be the strongest, the most in charge — ?? I don’t know. But I’m having such a hard time with this. I suppose that’s why I’ve put this stuff off for so long, procrastinated until I could no longer procrastinate with it.

Here’s where my name will be put out there, “Judy —– needs people to donate hours for her sick leave,” and then I’ll see how many people step forward. Maybe that’s what has me anxious, undone. How many will step forward? What if very few do? I don’t know. Is this finally the measure of my worth here? I’ve had some, a few people here tell me that they’d be willing to donate some time for me which is very nice of them, but I’m going to need so very much time. It’s a difficult thing to ask for. Everyone has the right to their own sick leave, vacation leave, after all. What if they need it themselves?

I just never thought I’d be in this position. I look in the mirror and I have dark, dark circles under my eyes; they seem to never go away. I’m tired, and some of my blood counts were again below average yesterday. There’s some shot they might give me if they get just a little bit lower. “Maybe next week,” the nurse said. The counts aren’t quite low enough yet. I just want to get the shot and not miss a treatment; that’s my big concern.
_____________________________________

There’s so much I wish I could do for my boy too. Last night he was talking about going on vacation and it was breaking my heart, telling him again that we can’t go on vacation this year.

But my friend, L., she just went on vacation, so we can go on vacation. I really want to go on vacation, Mom.

I have no vacation time, you see. I had to use up all of my vacation time for all of this time off that I’m taking. So I explain, once again, that we just can’t take a vacation this year. I feel badly, Nate so loves going to the beach and spending time there. We all love it, as a family. We get away, just the three of us and spend time playing on the beach, relaxing, playing in the ocean. It’s perfect family time away. We’ve done it together the past 3 years, I think. He expects it now, but it’s not to be. I tell him we can’t.

Oh, that’s right,

he says, sounding disappointed.

We can’t go because you have breast cancer.

That’s the truth of the matter. We can’t go because I have breast cancer. I wanted to cry but I held it in.

_____________________________________

Well, isn’t this a depressing post. Maybe my posts should carry warnings on them. I hope to have a happy post soon. I hope my “results” post will be a happy one, although every time I think of the results I get all emotional too.

It’s just all too much to think about at once.

I’m overwhelmed with everything.

And unfortunately, there are no breaks with this stuff.

It just keeps coming.