Managing and Improving

These last few days, I am starting to have glimpses of seeing through the chemo and the cancer. I can't put it into words. Like a veil is slowly being lifted. I have been able to stand and make dinner, and not hurting by the end. I have had clarity of thought for longer stretches (if I have taken good care and napped), and am thinking out beyond myself and my families basic needs. It still is taking energy and planning, but something...shifted.

With help, naps, and good tlc, the times I do have feel more normalized. I am so grateful for that.

For the first time, in awhile, I had enough energy to go out after 7:00!!! Whooohooo! I know, I know, you think ... Party animal!!! I went to a movie with a friend. Oh my, how normal. I napped before I went, that helped. But before, even that seemed like too much. But a movie....at NIGHT....wow. I am moving on up. hehehehe. (As a chica with cancer, you learn to be like a cat, and curl up in the thin thread of light coming in through the window...no matter how small it may seem).

I also am learning limits. Went to Fred Meyer to get schools supplies for Bug and some much overdue household items. By the end, I felt very weak and it was hard to think straight. I snapped at the cashier!! I also apologized. It gets scarey at those mundane moments that are too much. But I just rest, and remember where I started with all of this. It is getting "better".

I just keep telling myself, "those scans in September are going to look soooooooo gooood." (No, I don't know exactly when yet...)

Keeping sending lots of healing energy!!!! Is that the light at the end of the tunnel? I have a ways to go, and need to pace myself, but....maybe?

Jenna

Chemo "hit" day, and hallelujah

So, today is turning out to be a mixed day.

Issue Number One: Chemo hit day. Just ride the wave. I know it will pass. Jim is home today. Poor guy. Chemo brain is real. He made breakfast, sat it RIGHT next to me, and 20 minutes later I asked him if breakfast was ready. He was like "Uh, hon, it is right there 4 inches to your right.". Sigh. I am glad he is home today.

Issue Number Two: The HALLELUJAH. Turns out chemo brain effects hearing. After a conversation today with a friend who was willing to ask direct questions (THANK YOU!), I had a HUGE clarification about our insurance situation. Turns out, I misunderstood some aspect of it and we are covered far better than what I had thought. So that is a big relief. We still have a mountain of bills to pay, and we still need help, but it isn't the mind blowing, tear inducing, "ohmygod!" how COULD ANY HUMAN PAY THIS, situation. I figure it up, I need to work a full time salary (in the world I work in), to cover my medical bills every year. I will forever be taking care of this cancer. Just the scans every year will need me to be working. Then the questions build, and the anxiety...will I be able to work? If I do, all the vacations, all the savings for home improvements/care go away. No collge funding. And the mind builds to a frenzied peak of FEAR and ANXIETY and drama

THEN

And I let it go quickly. They seem so SMALL.

I just plan to be alive to have the luxury of dealing with those issues.

So, some of the numbers I gave before still stand. We need about $1500+ to cover in home help/childcare. That has always been #1 on my list. It is the key to healing, not having martial stress from the extra workload, and a child that isn't being stressed to the max from all angles. Then, there is the issue of bills coming in beyond out income level as it stands, and how could I work? I am STILL all ears about any good ideas. I am looking into helping artist/crafters who do production work, and could use some help from my home. I know those jobs are rare, but exist. I am also thinking of getting caught up on the newest coding, and seeing what I might be able to do from home there. Options. I believe there are always options. It will work out. But the reality is, as it stands, I will be working to pay medical bills and childcare/schooling and that is it...if I work as I have in the past. Might be time to evolve in ways I can't see yet.

I think the hardest part of all of this, is the overwhelm of the mind. People tell me all the time "Just focus on healing.". But all of this other stuff is real. And if I don't look at it, it becomes like a monster under the bed. The fear of it is far worse than dealing with it. There is a relief that comes from dealing. I know my limits right now. And I can't run out and work. (I'd be fired the first day!) But I do believe by knowing what we are dealing with, I can relax, and stay alert to answers.

I am so embarrassed about my brain lately. I do know chemo brain is "real". Even if you aren't dealing with a chemically induced mind fog, just the sheer amount of things to process and deal with would make anyone hit their breaking point. What a rollercoaster. I was always a daredevil.

Ahhh. and as I write this, the sun is shining.

Jenna

Robert Glenn says it all....

Robert Genn is an artist, who gives us other artists weekly installments of gleanings form his artist journey. Some bits are technical, some esoteric. This weeks topic about unconscious confidence, stuck a chord with me in journey through this cancer world. I keep saying the struggle with the big "c" word is 90% mental.

My nurse in chemo today told me, "I know you guys go through a lot of physical pain, but what you have to endure and overcome mentally is staggering and pushes you farther than anything else could."

So, an artist and a nurse, on the same day, getting to a similar point. After watching the Olympics, he put it this way:

Focus: Focus is the conscious removal of distractions--from a sore toe to the roar of the crowd. The world is a noisy stadium that contrives for us to go off the track. Cutting out ambient hysteria is a learned skill [I placed emphasis, this really struck home]. It means a total concentration on the job at hand. Focus can be understood as a kind of self anointed me-ism--and it's okay to feel that way when the action is needed. In the artist's world, personal mannerisms, processes, techniques and stylistic tendencies are sacrosanct, a mind-state similar to common belief. While artists may be wildly exploratory, the winners need to run like they've already won.

The way I am finding my way through this, as intact or better yet, more evolved as a person/spirit, is to have empathy for the journey of those watching, but in the end, to shut it out and focus on the task at hand. It means I can hear and empathize and really take to heart what a friend or doctor is experiencing or believing about my cancer journey...but in the end, I then have to wash that out of my mind, get my game face on, and proceed with the journey as best I know how. While I notice the "din of the crowd", I can't become mesmerized by the "hysteria".[ I would like to note here, that I define that word, in this context, as an energy not good, or bad, that has built up around an event. It can take form as the hope, or the fear, of the crowd.]

This doesn't mean I don't want to hear my friends, doctors, and well-wishers view of this journey. But it does mean having an acute awareness of what is other's people's fears and not taking them on. Of returning then, back to myself, getting my "Zen" on, and hearing what the next steps need to be.

I am beginning to think, this may make very little sense to others. Or that you might worry I am saying "Don't talk to me about your fears and doubts about this." Not at all. It heals me and makes me feel whole to be in "normal" friend mode!!! In friend mode, I love to hear your journey. Notice I still consider it YOUR journey. When it comes time to make decisions on this journey, I listen, hear what truth resonates, and leave the rest. I then MUST return back to listening to my body and trusting in it's ability to heal and knowing it will tell me which way to go next. Otherwise, I become disoriented and dis empowered....like a compass gone haywire, looking for true north..and that is NOT the place to be when your making these tough choices.

To read the who article from Robert Glenn, go here.

Blessing to all,
Jenna

This is Tricky

First of all, a friend pointed out an "ouch" point. And I want to apologize. She was hurt by me saying "It seems as if some of you still aren't 'getting' it". If she felt hurt, some of the rest of you might feel hurt as well.

I was getting some reoccuring themes in conversations with people. And I realized that it either isn't sinking in what I is going on, or I am not being clear. So, I wrote that post, to be as clear as possible about what is going on.

This is a gigantic beast. And I am overwelmed at the complexity of trying to keep everyone informed. And in the end, it is impossible for me to know what questions you have, or what information you missed. I am relying on you asking me direct and clear questions if you have them. I cannot stress this enough. I know you might be worried about sounding insensitive or harsh or inappropriate. This blog was not intended to be a detailed report on my cancer. But more like a day by day, what is going on for me. And I am ALL over the board. Somedays I am dealing with logistics of getting by. Somedays I am absorbed in pain, yet want to post to keep in touch, and barely make any sense. Somedays I don't want to think about it at all, but just want to focus on some other issues.

It isn't intended to fill in all the blanks, and some of them are left blank intentionally. I am relying on my friends, or people with questions, to ask me directly. Please do not be afraid to do so. I cannot keep track of what I have said or not said right now and to whom. I can even remember what I did yesterday most days. While I do try to think "what is the newest information" or "what do they need to know", most days I am just trying to put something out there to stay in touch. Sometimes, while I am writing, my brain feels like a cat falling down a well and trying to claw into the sides of the well and climb back out. I think "I shouldn't write in this state of mind" but I also don't want to go days without writing, because they worries some of you too.

What is that saying "You can't please all the people all the time."

I can see the focus of the blog is shifting. And it is becoming more public, and stretching out beyond it's original purpose. So, the tones and entry content may change as well.

Off to go back to sleep,
sweet dreams,
jenna

Goodbyes, transistions, and good quotes

Just now, we said good bye to Becky. Becky, this is a shout out to you for making our summer healing, stable, and balanced!!! And thank you to the families that made this possible. I can't say enough how much has helped. I think Bug would be a mess, and the house would've been stressed out without the help. Thank you Becky!

I am adding a quote to the sidebar. A friend from the midwest has been sending me these amazing cards with pictures of her garden on the outside, and quotes on the inside. SO many have been spot on timing with what I am going through. So inspiring. The first one starts today.

Also, I am playing around with design and layout. So expect multiple changes as I find the right fit. I would like to expand this blog out to help others in the area, or going through metastasized breast cancer. Anything we can do to keep each others heads up and hearts open!!!

Jenna

what is a day like for me

So, I am a pretty, "let's make lemonade out of lemons" kind of person. I am still hearing and sensing from some of you aren't "getting" it.

When I say "I am having a good day"...it means I am not in pain or chemo stupor where the world is managable. It means I MIGHT be able to walk around the park for 1/2 mile before my hips give out to pain. It means I am not overcome by the unbearable dread of dying and leaving my daughter behind.

I have always been the kind of person who believes in the light/dark of any given situation. I might be smiling, beaming, even when I see you, and while we talk, be delighted....but when you walk away, I need to recoup. I may sleep for an hour or four. It doesn't mean that I am being fake when I see you. It means I am delighted to see you. It also means I need to rest, because I am trying to get as much of the cancer into remission as possible before chemo is too much and we move into managing what is left......TONS, SOME, NONE.... I don't know. I don't know how long any of this will take. I keep being asked that. NO ONE knows.

They found cancer in both breasts, my liver, my bones (hips, shoulder, vertebra). This is Stage IV. Stage IV by the books means "incurable". Now, with my kidn, it might be managed chronically for decades, or for year. NO ONE KNOWS. Nor do I.

Does this mean I am suppose to walk around crying all the time? I can't. I don't have time to waste crying. When I see you, I LIGHT UP, because it makes life sweet. It also means, (if I knew in advance I would be seeing you) I gathered up my energy to see you.

It means not being able to lift my daughter, because the tumors in my spine prevent me from lifting anything beyond my purse. For awhile, my purse was too painful. Now, it is not.

Somedays, I can clean my own house. Somedays, I sleep.

Somedays, Becky (the person helping me this summer) let's me rest, while I listen to Bug's sweet voice playing in the room next to me.

Somedays, Becky focuses on cleaning for an hour, because I have energy, and I revel in cuddling with my daughter and reading or building something. I get run down, Becky steps back in.

Yesterday, Becky helped me unpack three boxes, and I fell asleep.

So far, I have felt Taxol take my breath away, and I have seen tumors shrink. I have so many tumors they stopped counting. But ONE of the ones I can feel, is going away. I worry the ones in my liver aren't.

For months, sleeping was hard, because of the pain. I could only sleep on my back. NOW I can sleep on either side. THAT is wonderful! It is what I hold onto while my life goes swaying back and forth.

I have had people tell me I am "too positive". I have people telling me how I don't act "sick enough" to make people understand. I don't know what else to say.

There isn't a day that hasn't gone by since they told me, since my body told me, that I don't revel in the good but also struggle with the sad.

I am having a mixed day. Again. Good (my acupuncturist relieved me of some pain) and horrid (I found out my uncle passed away form his cancer).

Yet I look outside, and adore the golden light cast upon the Evergreens, and yet have this ache inside of me of pain (literal) and worry for my family, and hope that I can be a LONG term chronic case.

My days are DAY BY DAY. One day I have great energy, the next, I am laid up on the couch.
It is a bit over everything. Again, back to the NOW is all I have.

And NOW I am so grateful for dear friends, and golden sunlight, and a kind husband. And NOW I am in pain, my stomach, from chemo. BOTH. My days are spent in flux, in limbo, trying to maintain the good and sweetness in life and not let worry and pain take those things away.

Those are my days right now. Some of you said I needed to be more clear. I can't be more clear than that. I hope it helps.

Jenna

Bring me to my Knees

Wow.

So, last night. My dd5 says:

"Mom, I can't wait until you are better enough to pick me up again!"
"Oh, me too Bug, me too!"
"You know Mom, your gonna to make it through this, WE are gonna get you through this."
(Mom, loses it as she wraps her little arms around me and pats my back...tears just flow at her generous and kind spirit)
"Oh, Mom, don't cry! You aren't alone, we are all here to help you through, and we will."
(Mom just cries harder, she just take my breath away)
"Ah, Mom, we are going to take such good care of you, so you can be all better again."
"I'm not crying because I am afraid, I am crying because I am so happy to be your mom."
"I love ya' too Mom."

GEEEEEEEEEEEEEEEEEEEEEEEEZZZZZZZZZZZZZZZZZZ.
If my heart had knees, it would be on them.

Tumors are stills shrinking. I think my heart is getting bigger though.

Jenna