And we did mostly have a good time, other than the little snafu with the slot machine download thingie (but in the end I won lots of money - if you count 'more than 10' as lots)... and other than the rather serious conversation we had midway through.
The thing is, last time I was at Treasure Island was when I took Bren there in May. In May I was walking around the casino, and although standing in one spot got a bit uncomfortable after an extended period, I didn't have any problems to speak of.
In less than 5 months, I went from pretty much normal to having to use a scooter just to get into the casino, much less get myself around the building. Even a cane or walker would not have done it for me. I get winded if I walk half a block down the sidewalk. It's getting to be quite a project to get up and down the stairs in front of the house. I'm not just in pain, although I am in pain - I'm getting weaker.
The thing about cancer is that from the inside, you deal with it on a day by day basis. So it's easy to overlook just how quickly it is eating away at you. You are too busy finding ways to work around the parts The Monster has bitten off.
But the fact is, The Monster is voracious, and it eats faster and faster. So it's time to stop and really think about what that means. We need to prepare.
It feels overwhelming. On both practical and emotional terms. We can't deal with it all at once, and it's not really possible to do so. As my friend Roberta says, the very end is fairly predictable, but everyone's path to that bit of road is different. So we can't know exactly what we'll need in the future.
But the future is coming on us fast.
And we're talking about it.
That's a start.
Although it smacks of locking the barn door after the horses have fled, he and his hacking lungs and clouds of attendant germs are sequestered in his bedroom, from which he only emerges in order to receive from my loving hands dishes of leftover curried chicken and corn-on-the-cob and glasses of pineapple-coconut juice, with cold meds for dessert. He's evidently been sick (but sans cough and sniffles) for two days, and during that time he was kissing my maternal cheek and washing the dishes, so it's too late now for me to avoid The Plague.
But we go through the motions, anyway. So I'm currently sitting alone in the living room, typing away whilst listening to all sorts of odd tinny noises floating from his room - obviously he is watching Japanese Anime videos on his computer in order to while away the hours. Koff, snort, hack...
Much as I love his dear sqwoonchy face, I'm probably better off with the current view, which consists of a vase of autumnal-looking flowers from the dear husband, a big bunch of beautiful pink roses from the parents, and a huge balloon - one of those silver mylar ones, this one sporting not only the words "Happy Birthday", but also a cartoon rendering of a sizeable bouquet of non-mylar balloons. Something vaguely ironic about that, but I am too distracted by the sneezing fit I hear in the other room to think about it too much.
My son may be less a classmate than a Lab Project if he attends that Biology class tonight...
I love you, too, Mom.
I remember you standing in front of the ostrich cage,
Pretty in the little red and white blouse I’d embroidered for you,
Holding up your reddened finger, your eyes full of tears.
“He must have been hungry”, you said.
We hugged you and told you it would be all right
and the ostrich must have liked you.
I remember the sound of your small feet pattering up the apartment stair,
running to find me, calling down the long hall.
You came weeping and holding your poor bloodied elbow.
“I fell down Momma – it hurts!”, you said.
I patted your blond head, put a bandage on the wound and said
“There, there, it will be all right.”
Now you walk toward me, my dearest daughter, my best friend.
I see the pain in every step, the effort it costs you to move.
The terrible disease inside you is hungry. It hurts.
I want so much to use the magic cure (it’s always worked before).
Now why can’t I say “Here my love - it will be all right –
I’ll just kiss it and make it all better”?
From Dec. 15, 2003 PubMed: Institute of Ultrasonic Engineering in Medicine, and Clinical Center for Tumor Therapy of 2nd Hospital, Chongqing University of Medical Sciences, Box 153, 1 Medical College Road, Chongqing 400016, China. email@example.com
High-intensity focused ultrasound (HIFU) is a noninvasive treatment that induces complete coagulative necrosis of a tumour at depth through the intact skin. This study was to explore the possibility of using HIFU for the treatment of patients with localised breast cancer in a controlled clinical trial. A total of 48 women with biopsy-proven breast cancer (T(1-2), N(0-2), M0) were randomised to the control group in which modified radical mastectomy was performed, and the HIFU group in which an extracorporeal HIFU ablation of breast cancer was followed by modified radical mastectomy. Short-term follow-up, pathologic and immunohistochemical stains were performed to assess the therapeutic effects on tumour and complications of HIFU. The results showed that no severe side effect was observed in the HIFU-treated patients. Pathologic findings revealed that HIFU-treated tumour cells underwent complete coagulative necrosis, and tumour vascular vessels were severely damaged. Immunohistochemical staining showed that no expression of PCNA, MMP-9, and CD44v6 was detected within the treated tumour cells in the HIFU group, indicating that the treated tumour cells lost the abilities of proliferation, invasion, and metastasis. It is concluded that, as a noninvasive therapy, HIFU could be effective, safe, and feasible in the extracorporeal treatment of localised breast cancer.
"You look great!!"
I know that this is intended as a supportive statement, but please don't say this to a person with a life threatening or serious chronic illness, unless you know that how they look is something they - as an individual - particularly care about.
Now, if they just got a new outfit, or a new wig, then fine, compliment them on the new fashion attire.
But generally speaking, a person who is currently in great pain, or struggling with nausea, or looking at their last few months of life... that person is unlikely to get too excited about how he or she looks. Unless they are concerned about their looks for specific reasons, or unless you know them to be a person who is consistently very concerned with appearance, the seriously ill person is likely to interpret your statement as a denial of their illness. It can seem to them that you either don't want to believe that they are truly ill, or that you want to keep them from talking about or showing any signs of illness while you are with them.
Neither interpretation reflects well on you, and it puts the ill person on the spot, forcing them to come up with a tactful reply and to try to conform to your needs without really knowing what those needs are. People who are seriously ill have enough on their minds without having to deal with that sort of thing. Do them (and yourself) a favor, and instead either compliment them on a specific thing - the color of the new outfit, the attractiveness of the new haircut, the cut of the new outfit, the color of the new hair - or present a different subject of conversation. You'll be doing everyone a favor.
That said, the second bit of information is about looking good.
Most forms of chemo treatment affect your hair. There are also non-chemo drug treatments that thin your hair or cause it to fall out in patches (as well as causing very unpleasant scalp/skin conditions, but that's a different story). It's all, as they say, No Fun.
There are stores and websites at which you can buy various types of hats and wigs and other types of head coverings. The American Cancer Society, for instance, has an online store and catalog that has very reasonably priced options. But today I want to bring to your attention two particular online sites.
One is heavenlyhats.com, a charitable organization started by a thoughtful young man inspired by the plight of pediatric cancer patients in a local hospital. This organization will send out free hats to cancer patients and folks with other medical conditions that affect hair growth - Male Pattern Baldness does not qualify, sorry. If you need hats, go apply. If you don't need hats, but you'd like to donate to a good cause, go there and give.
The other is France Luxe, a website store that sells a wide variety of hair adornments - barrettes, headbands, scarves, turbans, jeweled hair sticks, etc. The lovely CEO of France Luxe, along with her employees, will send cancer patients one free silk or cotton headwrap of their choice. All you have to do is go to the website, click on the little 'Good Wishes' icon at the top of the home page, and you will find the application. This is a very generous thing for them to do - so if you have a wedding or prom coming up, or if you are hankering for something pretty for your hair, please check them out and see if you can support them by buying something nice for yourself. If you go here and buy products from this page, 20% of your purchase will go to the Triple Negative Breast Cancer Foundation. Other than chemo, there are currently few treatment options for those with triple negative cancer. Anything developed that would cure or control triple negative cancer will also cure or control the other sorts, too, so it's a good cause for all.
These suckers are not cheap - they are at least $80 per pad, and I had to have both the Left and the Right. They are in excellent like-new condition, as I only needed them for about six weeks.
I have breast prosthetics, they are very nice; I've used them twice in half a year, and am unlikely to use them more than that again in the next six months - and that probably won't add up to very many wearings before I won't need them at all. They will be pretty much like new at that point.
I have a scooter. Eventually, for one reason or another, I'm not going to have use for it.
I'm getting a wheelchair lift. Eventually, for one reason or another, I'm not going to have use for it.
My husband and I have side-by-side hospital-style adjustable beds that held together make a king bed, and eventually he won't need that any more and may want a regular bed again.
Let's face it. Most of us who have cancer, and most especially those of us who have Stage IV cancer, end up buying things we need because of our illness - and then eventually we stop using these things, often long before they have become too worn to be useful. Many of these things cost hundreds, sometimes thousands of dollars.
And yes, I could sell some of them for a bit, and the person who got a deal will be happy - but the small reimbursement won't be anything near what I put into these things, and won't make a dent in the debt we incurred in getting them.
I would find it MUCH more satisfying to be able to lend them out to other women who are going through the same struggle - women who can't afford a scooter, or a wheelchair lift, or a nice wig, or a good walker, or prosthetics. Perhaps (since this is currently only a dream) a wheelchair van or two. The only rule would be that you have to check in with the item once a month, take reasonably good care of it, bring it back when you are done with it so that someone else can benefit... and hopefully donate whatever you do buy when you are done with that, too.
Yes, this is my dream. And my husband's, too - he thinks it's a wonderful idea.
The only problem is that we live in a tiny house that doesn't have room for the stuff we already have, much less have room for an Cancer Equipment Lending Library.
But if there were someone else in the Twin Cities who happened to have a garage or other accessible storage space who would be willing to house such a thing, please let me know. We'd be happy to help organize and work at such a thing - think of what a blessing it would be to so many people!
The hip tumors may, as he points out, have a very slightly lower SUV. SUV is a measure of how bright a tumor looks on the PET scan; the brighter the tumor is, the more active the cancer cells are in replicating.
I don't necessarily see it, but that is what he says. On the other hand, they are very noticeably larger than they were in early July. Which is not good.
Even worse, there are two new tumors. One in my spine, a vertebra right between my shoulder blades. It looks pretty big already. The other is in my collar bone, near my shoulder. Also not tiny.
Dr. B, desperately chipper, "But at least it hasn't moved into your liver or your lungs. That's good, isn't it?"
I suspect he doesn't want me to be mad that he pushed me into the radiation, when mostly what it did was make my hips more brittle and made me go off my meds and supplements, which may have been slowing the spread of metastases. These showed up awfully fast, and are growing very aggressively.
So. Not good news.
And of course, the next steps are to push me into more drastic meds, with worse side effects, and no more likelihood of working any better than the other meds or the radiation.
But I don't have a lot of options available to me. I can't afford to go to Europe or Mexico, and although they have some options that are not available here - options slightly more effective in some cases and considerably less toxic - in the end, there is no getting away from the fact that this is a very aggressive cancer, and I am not very responsive to drug therapy. Or radiation therapy, evidently. I have to either go with what I'm allowed and hope for a miracle**, or just sit back and wait as the monster eats me.
So. We're going back to the basic endocrine drug, Tamoxifen, which I preferred not to take before the aromatase inhibitors, because the AI's have a slightly better effectiveness on average, and the potential side effects of the Tamoxifen are nastier (depression/mood swings, blood clots and stroke, for instance). But different people react differently to the different drugs - Tamoxifen works on a different basis than the AI's, and strengthens bone, so it's possible that I'll respond better to it. I asked him about doing this before the radiation, and at that time he was unwilling to try it, but evidently he's recently gone to a conference where some researchers claimed that Tamoxifen seems to work better for women with higher body mass indexes (that would be me). So we'll try that.
Plus we're going to try - at least for a little while - the bisphosphonates. Also not something I'm looking forward to, but I did talk to him about one that is well established in the EU but not used much here yet as an IV treatment: ibandronate (Boniva, which orally is now being used for osteoporosis in the US - at a much lower dose, of course). The studies are showing that it has similar effectiveness to Zometa, the 'standard of care' here (if you can afford it), but with a lower side effect profile. Dr. B hadn't heard of an IV version for breast cancer, but he checked it out, and look! I was right! Plus it turns out an outlying clinic of theirs has a doctor who is using it on certain patients. So Dr. B is checking things out, and if it all works reasonably, that's what I'll be taking.
I also asked about prescribing me Iscador (mistletoe) as a supportive measure, but he nixed that. He is purely a standards-of-care guy. But he said he wouldn't tell my other doctor not to prescribe it. So we'll see if I can push Dr. P into it... although it took a year to get the Low Dose Naltrexone, and at this point Dr. P is completely against DCA (he doesn't like the side effects, although they are similar to, but both milder and less permanent, than the side effects of chemo).
I wonder if I have another year to convince Dr. P about the Iscador?
Or, conversely, the news could be so devastating that he feels obligated to tell me in person.
Or maybe he forgot.
Followup appointment in 8.5 hours.
Labs drawn at 10:30. The nurse at the scan on Monday told me my veins are starting to scar up, getting hard to get into - this is bad, since they have always been tiny, rolling, collapsing veins. They've always had to use the 'baby needles' to get in, and they usually leave bruises from all the fishing around they do with the needle. I've never been able to donate blood, they need to use needles too large to get into my veins. I really don't want to have to get a port just so they can take the stupid vial of blood... I'm so likely to become allergic to the stupid thing, among other issues.
They will, as always, weigh me. I may regret all that State Fair food.
Dr. Bouncy at 11:00.
I know you will join me in loving thoughts and prayers for my friend and her young son in this difficult time. Thank you for being there, dear readers...