10 2 13 Another rainy morning! I like these (….IF I don’t have to go anywhere….) :)

It’s raining softly again this morning and I love that. It sounds so cool on the skylights in my living room. When the rain is coming down hard, it is so loud it drowns out the TV, but that’s cool too because it’s nice just to turn the TV off when that happens and just enjoy the rain. I’ve never been too crazy about TV.

I had wanted to have a TV-less house while Leah was growing up, but with the daycare and all, we did have one. It was used very sparingly, though, and I’m proud of that because the kids really had a good chunk of creative playtime, art time, and story time each day. We used to mix muffin batter together in the mornings, and they’d help me with some of the cooking for lunch. We’d set up makeshift “easels” in the back yard and the toddlers and older ones would paint freely without worrying about whether they were making a mess. We’d make playdough from salt and cornstarch, I believe it was, and color it with all the dyes I had from cake decorating. We had lots and lots of story time — I had a library of over 400 childrens’ books! Leah and I were so very blessed to have all her “daytime siblings” with us during her early years. We’re still in touch with several of the families, and it’s really, really nice. I still have so much of the kids’ artwork stored in various places. Always meant to frame and hang some of them…I’m always behind schedule on stuff like that. Most of the kids are in their 20’s now, and no artwork has been hung. Drat.

Well, as I drank my first cup of coffee this morning, I went online to look at statistics for survival for stage 4 epithelial ovarian cancer. What a way to entertain oneself, right?! 🙂 And it’s not good. I knew that, of course. Educating you now, if you need it. 5-year survival rates range from 18% down to 8%. That means only that number of women will live 5 years or more. Of course, there’s always the disclaimer that each cancer is unique, each patient is different, and no one can really predict how long anyone has.

I’m guessing at most, I have 2 years. At worst, maybe 6 months. So, I’m proud that I have been much more proactive with organizing and planning than I was with the kids’ artwork. I’ve already seen a lawyer and I have a will in place, a financial Power of Attorney (my sister Adrienne) and a medical Power of Attorney (my daughter Leah). They will make decisions on those things in the event I cannot. I have also gone to all my banks and various savings accounts and set up PODs. These are Payment on Death, and in effect name someone as a beneficiary. Leah will be the beneficiary for all of that stuff. Knowing that Leah will have a decent little pile of money when I’m gone is invaluable to me. We can’t count on her father for anything, that’s for sure, (bitter, anyone?), so it really puts my mind at ease that she will have a cushion if her financial situation were ever to get wonky. Not likely, since Leah is SO good with money and is much better situated at 24 than I ever was. But very, very reassuring nonetheless.

The only thing that matters to me is making sure Leah will be ok. And I know she will be. I’ve seen a strength and stability/groundedness in her this whole year that has both amazed and comforted me. She is an amazingly strong young woman who has already been through so much in her young life, and handled it all with maturity and grace. I’m so proud of her I could bust, and I owe so much to her aunts, who have truly shaped who she is more than I have.

Well, it’s stopped raining. Except on my face. 🙂 I guess it’s good for the eyeballs to regularly flush them out.

It’s good for the heart, too.

I love you all!
g

9 20 13 Stuff I’m not happy to relay to you

It’s raining right now. Gentle thunderstorms. And it occurred to me that that’s one of the things I will miss. Made me wonder, actually, if there will be gentle thunderstorms where I’m going. I hope so.

I haven’t posted in quite a while because I have not had a computer on which to write. Thanks to my incredibly generous and loving father, I now have one. Well, crap, now my eyes are too full of tears to see what I’m typing, because I’m thinking of how I’ll miss my father.

I’m not going to go down that path here right now. I’d ruin the new laptop if it filled up with tears.

Instead, I will fill in those who have not heard the latest. A week ago, I went into the hospital because of lower back and pelvic pain. It felt like the pain of a mild menstrual period for about a week before it escalated into really rough pain throughout the course of the day and evening last Thursday (Sep 12). My doctor told me to go straight to admitting, not the ER, and that was cool because I got into a room very quickly. They drew a bunch of blood and took a urine sample, hooked me up to an IV and gave me painkillers. The doctor especially wanted to rule out a bowel perforation because that’s one thing, although rare, that the trial med I’ve been on can cause. They were also looking to see if there was perhaps a kidney infection or stone, among other things. The blood and urine did not indicate any of those and they did a CT with contrast the next morning. It told us that the cancer had returned, and had metastasized. There was “omental nodularity” in the pelvic area and there were enlarged lymph nodes in the chest and on the outer membrane (pleura) of both lungs.

The doctor herself was shocked that the cancer came back already, and so strong too. It had only been 9 weeks since my final chemo and the last CT (on July 9), which looked fine and showed no evidence of disease. Two months of rejoicing that I was okay, after 5 months of chemo. A really lousy ROI, I keep saying. My boss says he doesn’t agree with that, though, because I may not have been here at all if not for that chemo.

So now she wants to start me on a new and different chemo regimen. I don’t know yet which drugs they’ll use or if there may also be radiation involved this time. I am NOT looking forward to it, but both Leah and I feel the right thing to do is to at least start it, and when (…if?….no, WHEN….) I start feeling too sick and too weak, I will just stop it all. I don’t want to be feeling like that with my last months or weeks or whatever. It’s incurable. And when I asked her about it coming back another time (“If we get to the point where we feel like we kicked it — again — will it come back AGAIN?”), she said “Yes, this disease will take your life.”

Hard to know what to write here. I guess that’s enough for now.

Love you all so much —
g

7 28 13 My wonderfully goofy and TRULY WONDERFUL chemo nurses!

This is a pic of only 3 of the many WONDERFUL nurses at the Women’s Infusion Center at the Center for Advanced Medicine at Barnes. From left, Debbie, Sue, and Gina. They are always so positive, so supportive, so sensitive and nurturing and also wonderfully funny and silly. They always seem to know if a person “needs” silliness or doesn’t, and simply could not be a better bunch of women to help the women like me going through a tough experience.

God bless these angels in scrubs! 🙂

Hi, everyone! 6 21 13

Yesterday was the longest day ever at the hospital. I had gone to the lab near home on Tue to have the blood drawn for Thu’s chemo. Somehow, they failed to do the CA-125 part of it, so my nurse called to tell me we needed blood drawn again, and also that the CBC on Tue had shown that my white blood cell count was too low. So, I was told to go in to the hospital an hour earlier Thu to go to their lab and have it all drawn again, STAT, and if the white cell count was still too low, we might have to postpone that day’s chemo.

So, I arrived at the hospital around 645 am and did the blood draw, telling TWO people there that we needed both a CA-125 and the CBC. I made sure the tech drew TWO tubes of blood for that.

I went upstairs, had my appt and exam with the oncologist, and was sent to speak to my (truly wonderful!) nurse Vanessa. Vanessa was calling downstairs about the blood tests.

The lab said they did not have the CBC! So we knew nothing about the white cell count! She made many calls and kept telling people about the order and that it was STAT, and that the patient (me) had seen them draw TWO tubes, but it was not found. How frustrating!!

So, they decided to go ahead and send me down for a CT with contrast while they hashed that out, because I’m still dealing with this shortness of breath. My doc told me that clear cell cancers, like mine, are associated with a higher risk of clots and she wanted to make sure there were none in the lungs. SOoooo, back downstairs to fill out forms and wait some more, then had the CT and waited for the radiologist to read them so they could tell me whether I could leave. Finally did, so BACK upstairs to 13th to the doc’s and Vanessa eventually came and said that they found the CBC and the white count was still low. Fooey.

BUT, they decided to have me do chemo anyway and reduce the dose of the Carboplatin. Vanessa also told me that I would be starting daily injections of Neupogen to deal with the white count situation. After a while, I was called to the chemo clinic. Since it was Day 1 of a new cycle (the 6th and last!!!), I got the whole shebang and it took about 4 hours. I don’t know when the shots will start.

OH — but this is major — the CT did NOT show any clots in the lungs, so that is WONDERFUL!!! I guess we really don’t have an explanation for the shortness of breath except that I am just running on empty and exhausted, and it is a possible side effect of many of the 3 million meds I’m on. 🙂

I don’t know yet what this week’s CA-125 is. I have faith it will still be very good. The last 2 were a score of 4, which is EXCELLENT!!!

I missed a lot of work this week. I went in on Wed, but had to go back home after 3 hours. Too nauseous and fatigued. Also had a headache. And I missed today, which is a Friday, and I would normally plan to work on a Friday. But I’m just too wiped out. I guess my bone marrow is simply too pooped to pop. 🙂

That’s about all I know for now. I love all of you and I hope all is well in your worlds!!!!

PS — the pic is of the hospital bracelets from yesterday. I always get the blue one (name and date of birth etc) and the red one (No Known Allergies), but this time Radiology gave me the yellow Fall Risk, as I am using my cane. Sure did make me feel like an old broad for a second, but the truth of the matter is that I AM pretty wobbly…..the neuropathy in the feet has about 2/3 of them numb, so walking has to be a very conscious and careful effort.

An update 6 2 13

It’s been a while again since I’ve posted, so I am taking the quick way out and copying a response I put on Facebook when dear friend Brenda asked how I was doing.

Hi, Brenda — thank you, you doll! I actually have been having a pretty rough time lately. The effects of chemo are all just piling up and I’ve been pretty sick more often. Saw the doc on Thu and she was encouraging me to spend more time at home if I can, and I can. I spoke to my boss yesterday and I will take a lot of time off in June and only work on Weds and Fridays all month. I had a CT scan a couple weeks ago that showed an enlarged lymph node (but only 1 cm) near my aorta, but the CA-125 blood cancer marker is still at an excellent 4, so the doc does not think there’s any reason to think the node is cancerous. All the nodes she sampled during surgery did not contain cancerous cells. So, that’s good news; it’s probably just inflammation. I will have another CT in a few weeks and we’ll compare. The BIG, good news is that I only have 5 more chemo treatments!!!! My last one will be on July 5th. After that, I will still go to the clinic every 3 weeks for the infusion of the clinical trial med (until March), but that is not chemo per se and will not make me sick. It’s been rougher, but now that I have an end date in sight, it is encouraging. It’s ok to pass all this along to all; please do. Thanks so much for touching base and for the continued prayers!! Much love and hugs to each of you! — g

Can I just be done already?

Getting pretty tired of chemo. Almost at the halfway point, so that’s good, but I have to say that I really am not so thrilled with it all. I hate that I’ve gained about 12 lbs since it began — part of that is the junk I sometimes eat when everything grosses me out so much, and part of that are the steroids I’m given. I can really see the difference in my face when I look at photos. I look like Humpty Dumpty now — big old round, white, bald head.
Here are some other fun effects of chemo — many I had not known about before all this:

Neuropathy in feet, and starting in my hands. This has been REALLY bad at times in my feet. It’s numbness and pain at the same time, which is a very weird thing. It also gives me “restless feet” sometimes when trying to sleep. Can drive you nuts. When the numbness started in my hands too, it scared me. So, I am now taking 2 meds for this (Neurontin and Cymbalta) and hope that they will work and decrease the likelihood of permanent nerve damage. I had to buy new, roomier shoes. The pain in my feet was worse than the worst RA pain days. But, it’s not always like that.

Nausea — this one anyone would expect, and at times it’s a real booger. I have 4 meds that are options, though, and on the days it’s most likely to be bad (Sun and Mon, and sometimes Sat), I take Zofran and Ativan first thing to head it off. Yesterday was BADDDDDDD. I was really sick most of the day. The couch and I are best friends lately.

Nosebleeds — was awakened by one this morning. Fun. Chemo really fries your nose inside and it can really HURT at times. I won’t go into detail about this one…it’s not gorgeous.

Mouth sores — I was having a lot of trouble with this for a while and have not had problems for a couple of weeks now, but it was bad for a bit. It’s like you’ve chewed broken glass and then you burned the heck out of your mouth with too-hot pizza or something. For a few days, my lunches were rice and vanilla pudding. Everything hurt too much. There’s some stuff called Magic Mouthwash waiting for me at Walgreens though if I decide I need it. It’s $50, so I will wait until I get to the 50-buck level of pain and then check it out. Haven’t been there yet.

Changes in sense of taste — this one stinks. Plain water or ice taste salty to me outside of the house. At first, at work, I thought there was something wrong with the ice machine! At home, I have been using a Brita filtered pitcher from the beginning, and that water tastes fine to me. I make my ice cubes from it too. And coffee. Friday at work, I ate some Peanut M & M’s and they did not even taste chocolatey. Booger! And when I had put a ton of lemon juice on my broccoli at lunch, I could not taste it. It’s pretty weird.

Ringing in the ears — mild, but pretty much constant, and annoying.

Losing my eyelashes — knew this might happen. I still have several, and they are long, but there are fewer each week, I think.

Losing my eyebrows — this adds to the Humpty Dumpty effect.

FATIGUE — OMG, this has been amazing at times. Last weekend, I pretty much spent 72 hours straight on the couch. Had to miss work on Monday — it was like I was walking through mud. TOTALLY drained and unable to do anything at all really. It’s because of the new meds for the neuropathy and it should even out as my body adjusts to the meds. But, ohmygoodness, it is remarkable, and has kept me from writing anything anywhere.

So, this is a Debbie Downer sort of post, and I apologize. I’m not trying to have everyone feel sorry for me — I’m just venting and I know it’s been a very long time since I’ve posted here or communicated with several friends. Just wanted you all to know what I’ve been dealing with, and I do apologize for being out of touch lately.

Anyhoo, I’m almost halfway. It will be really nice to ring that bell at the chemo clinic at the end of this. That’s what the women do on their last treatment — they ring the bell at the nurse’s station as they say goodbye. I will take pictures when I get to do that!

Seasons 4 10 13

When we first began this journey, it was January. We’ve battled a couple of really big snowfalls, and now it’s definitely spring and I’m sleeping with the windows open. When I finish chemo, it will be fall, and the tree off my deck will again be the brilliant crimson that makes it match my furniture, as it was in this picture from last September. Right now, it’s filled with the beautiful white blossoms and it wasn’t that long ago at all that it was weighed down with way too much snow. It actually seems to be going pretty quickly. Odd.

Mouth sores, a fried nose, and yelling at demons 4 4 13

The effects of chemo are pretty well known….it can really make you nauseous and have you continually running to the bathroom. Not fun. It changes your appetite and it changes how foods taste. It can also really wear you out; fatigue’s a big problem at times. Then there’s “chemobrain”….the fogginess that can affect thinking and decision-making. I’ve been dealing with these lovelies and with mouth sores and a fried nose. It’s as if a tiny blowtorch was pulled through each nostril, singeing the passages deeply along the way and leaving it extremely sensitive, bloody and raw. Not a lovely image, I know. There are home remedies I can use to deal with these, though, and the doctor can also prescribe numerous things as well if I want them.

There’s one piece I’m not sure the doc would have a prescription for, though, and those are the thoughts in the middle of the night that have the potential to drive one mad. I do try to put a “happy face” and positive spin on all of this for the most part, not just for myself, but for everyone who loves me. Truly, I AM positive and confident that this is going to have a good outcome — but there are times when the fear is palpable, the gut is twisted with emotion and the tears come way too easily and threaten not to stop. A dear and extremely wise friend at work had told me how to deal with it, though. She battled cancer herself several years ago and also had some other extremely difficult personal challenges in her life piled on at the same time. She’s amazing to me — there’s a strength of spirit that is rock solid and she always sees the blessings in whatever is going on. She makes me laugh and she makes me think.

She told me at the very beginning that there would be times when “the devil” would mess with my head. She told me about the nights years ago when she would lie in bed trying to sleep and the terrifying thoughts just kept coming…. “Am I actually going to die soon?? How much time have I got??? Am I going to go through months of difficult treatment for basically nothing? What if I lose my job? What if I lose everything and have to declare bankruptcy or something? Will I ever have a normal life again? No one’s going to be attracted to me with the damage that’s been done to my body…will I be alone??? What if it goes but comes back and I have to do all this all over again?” Etc, etc.

I don’t know if she was pulling my leg or not (I really think not), but she said there was one night when she just was straight-up FED UP with it, got out of bed, opened her front door and said, “Devil,…..GET…… YO’….. ASS….. OUTTA HERE!!!!!!!!!!!!!!!”
“I know my neighbors thought I had lost it”, she laughed, “coz they knew there wasn’t nobody in there with me!”, but it was clear that this woman was taking charge and just doing what she had to do.

So, I’m equipped with that ability too. When I have to, I yell at the demons. I haven’t actually done it at my front door yet, but if I have to, I WILL.

🙂

My buzzed head 3 29 13

It’s been a while since I posted anything on here, and since the last one was a goodbye to my hair, I figured I should post a pic of the new ‘do. 🙂 I like it, and so does Leah, so I’m very relieved about that. It sure is easy to get ready to leave the house! It’s still odd, though, after a couple of weeks, to shower and reflexively “flip and move” my nonexistent hair as I shampoo my head. And when I lie down in bed, I move my head in such a way as to have all my hair behind me on my pillow, as I always have, but there’s no hair to move! It’s kind of funny, actually. I’ve learned that when you have nothing covering your neck, you have to always be sure the tags aren’t sticking up out of your shirts in back. 🙂

Goodbye to my hair 3 15 13

It’s really coming out now. Last night was rough. Leah and I both cried – a lot – as she brushed my hair and it filled the brush so quickly. Then I had her bundle up a couple of sections in the back so that they could be cut off to keep. I do like my hair; it’s so soft, and while it may sound weird to some, it is important to me to have some to keep so that I will just be able to touch it from time to time.

My Leah does not cry easily or often, very unlike her mother. But last night was huge for us. Important tears to shed. We lay in the bed together a long time and for a while now and then, she’d stroke my hair, smoothing it away from my face at the temples and forehead, like I love. My mother always used to do that when I was a girl, when I was sad, sick, sleepy, or just cuddling. In fact, I had my friend Cathy do the same thing for me when she was one of my two labor coaches when Leah was being born. Debbie was the other who’d gone through all the birthing classes with me, but Leah came so quickly that poor Deb didn’t get her turn in the delivery room! Anyway, it’s a calming, loving thing for me, and Leah is well aware of that and touched my hair a lot as we lay there. I told her I wished there was some way to bottle up that sensation, as stroking a bare head is not going to be the same. But, it will come back some day.

Meantime, I have my couple of beautiful locks preserved here that will go into a keepsake box. The blobs of hair that came out of the brush will go out onto the deck, as Chris reminded me that birds apparently like to have it for their nests. Circle of life and all that, y’know. 🙂