Living With MBD

Metastatic Breast Disease (MBD). It’s a sobering thought, even admidst dissolving of brain tumors by radiation. Advanced cancers perhaps aren’t the death sentences they used to be, still, when taken in all their invasiveness, are things to be respected.

I may always be on some form of chemo. I may be on Tamoxifen, as long as possible. With luck, my tumor marker numbers will continue to go down, until they are part and parcel of my whisper factor, the cancer that makes up my particular MBD.

Radiation oncology has its place to play amidst all the chemicals as well.

In any equation, you have things like overriding pain that has to be controlled — the cancer causes its own little bits of grief after all, and if you’re like me, your cancer is here and there in your body; I’m Stage III, I don’t know how I’d handle it being Stage IV for example. Some people out there are totally brave.

Right now its just one step in front of the other, and slip-sliding into states of head consciousness where I can deal with the enormity of the disease, not only my own process, but my husband having cancer too — we’re certainly not the only two cancer family in the world right now, but the fact that we both have a cancer at this time is pretty rough.

I’m not complaining though, at least we can both move still and are not incapacitated except for the general fatigue that comes from being on chemo meds and roids.

Thanks to a bit of help from some friends we’re managing over here.

I’m debating, after the radiation is over, about breaking into a brand new blog about living with MBD, how people cope, what they can do, etc. I’m giving it serious thought.

Doctor, Stare It Cold

I have a brain tumor, probably a metastisis of my cancer.

My only job for the next several weeks is to stay alive and
allow the radiation to do its work. Since your either alive or dead at any point in time I hope I stay alive. Alive and able to move.

My tenth general low-level treatment is on Monday, Aug. 3rd.
These first ten were to clean the brain of any possible potential
cancers. The CT’s been done for the “boost” radiation series,
these next ten are designed to go after the tumor.

I hope it works. I’d feel a lot better about having advanced
cancer if my brain were clear. At the end we’ll do an MRI
and have a look. I’d follow Ming (my radiation oncologist) into
hell anyway, and I believe him when he tells me (1) this is
serious and (2) he can help. Sometimes you have to let
somebody else drive.

The biggest effects of radiation are hair loss and fatigue. I’m
already in the hair loss category due to the chemotherapy, so
that’s a no-brainer. The fatigue is doable. I have nothing to do
now but rest anyway. I pour myself to my appointment, and
pour myself home. My husband accompanies me. It’s nice.

I’m grateful for radiation oncology.
It’s the dead of summer anyway. Interestingly, we’re having nice
cool weather at the moment. I have the window open in the bedroom
here, and am just enjoying the air.

I’m working on a poem. It’s called RadHead.

RadHead

Leane Roffey Line, PhD. c. 2009

For you, my brain, I tow the line
Been living in a mind so fine
The treatment plan proceeds with care
External beam precision there.

RadHead RadHead deep inside
The rhythmeen calls the core provide
Precision radiation fee
A bass player’s oncology

I sing to ZZ Top and play
The bass lines deep inside that way
Right cerebellopotine angle mass
Intracanalicular component past

You’re small you are
19.4 mm AP X 15.3 mm transverse
X 16.3 mm cephalocaudad, but if you swell
Where you are sends me to hell

RadHead RadHead Carcinoma
Breast Disease and thelioma
For I am a Cancer Queen
Living on my Rhythmeen.

Art and the Artist

I’ve been out of hospital now for a week. I’m happy to report that I’m feeling quite a bit stronger. I’m also back on my bodybuilding proteins, and am healing up from the venous assaults, my arms are no longer looking like pin-cushions.

The radiation treatments are continuing, and I had session five today. I find the radiation very pleasant, and the people are very nice, especially the other clientele I meet in the waiting area. Many have cases far worse than what I consider my own, and their strength of spirit and fellowship is an absolute inspiration as they face their own struggle with this pernicious disease.

To that end I find myself drawn once again into my life-long hobby of Art, and began a double canvas in acrylic. When I work in acrylic paint, I work in very thin layers, and it takes a considerable amount of time to build up the surfaces and lay in the drawing. This set will be a very nasty prehistoric fighting fossil of a fish, the top half on one canvas and the bottom half on the other…because that is what my particular cancer represents to me.

I estimate the piece will take some 40 hours to complete and perhaps it was my imagination, but the colors seemed brighter and the actual depth of paint was more intense. I was just fascinated as I laid the background color down.

I am also happy to report that my body seems to be tolerating the Tamoxifen very well. I will be curious to see how it all works out over time. The oncological teams are working very hard to save my life, and I am grateful for each and every one of the people involved, regardless of the ultimate outcome.

My husband had his 3rd RCHOP chemo today; that is half-way for his therapy for the lymphoma. So far so good.

As the week progresses, it will be a lot of resting and preparing for the increased rads in the second series of 10 treatments as they narrow in on the tumor in my brain. It is important, in these cases, to follow the doctor’s plan exactly, and not deviate — so that is what I plan to do.

So much of cancer treatment is like a math equation, it is about numbers, and in some cases the luck of the draw — if you don’t respond to the treatment, and many don’t, depending on what condition they have, you can find yourself in your own prehistoric fight, just like the fossil fish.

Attitude and aptitude only count for so much. If you have anything to say to someone, do it now. You do not know what the next few seconds will ever bring. Or, in the words of Buckaroo Banzai, Wherever you go, there you are.

From the 8th dimension, I wish you all well this week, and may you have peace that passeth all understanding.

Bacteria make computers look like pocket calculators

Bacteria make computers look like pocket calculators

• Ashby’s Law trumps Moore’s Law. Not much more to say.

Moving Along to Plan B

While my body is recovering from its anemia, we’re moving along in treatment to Plan B, which is receiving radiation therapy for a small mass that’s popped up near critical motor centers in the cerebellum. It’s extremely tiny and we found it just by happenstance. Tomorrow I’ll start a series of short radiation treatments combined with taking the hormone tamoxifen for everything below the blood brain barrier. Since my tumor markers were so good, I have great hopes for this new series of treatments. Most chemo cannot penetrate to the brain itself, so when you find little things like this it is best to address them with radiation. Radiation has now got a 100 year history and has advanced significantly as a treatment for cancer.

This story would be too long to tell in all its detail, but what started out as a lunch trip to the mall on Thursday turned into a dizzying experience, winding up with a trip to the ER, admission to the hospital, a blood transfusion (which was badly needed IMHO), and meeting with my doctors — and some new doctors — resulting in a few more tests and a release home with a clear slate from the vertigo/nausea event of last week. I’ve never spent much time in hospitals and I’m here to tell you, hope I never have to again!

In spite of the hard work of the nurses, much of the labor of patient care is now involved with a series of steps that adds much to the costs of such visits. I am very clear now on what needs to be done to overhaul the system (which we really don’t have), and would not wish a hospital stay, no matter how nice the staff, on my worst enemy.

Lucky for me the Drip Factory has a Death Ray Room with my very own Dr. M*ng the M*erciless — a doc about my own age with 30 years experience that I like very much. He’s also very hip to the infighting games between hospitalists here in our small town, and to my request this morning  of “Get ME OUT OF Here”, he had all accomplished by 2 pm, while saving everyone’s ego. Here the story must end, because everyone is really a good person, and there is no point in continuing on with Plan C when Plan B is now in effect.

Update 1 – 7/21/09 First external beam radiation therapy done today. Painless, quick. Machine used was a Varian 2300 with bells and whistles. I like it. I shoulda told the tech to reload the photons for tomorrow (just kidding).  Plan B updates will be done over  the coming days as updates here. If something significant happens I’ll write a new post, but for now, it’s just lock and load.

Update 2 – 7/22/09 Second treatment today, I’m feeling a bit less disheveled from the hospital experience and a bit more like myself — the hubster and I are still resting and trying to get some food down, but we’re tired, and not young anymore! My sister-in-law, whose on her third year of tamoxifen treatment herself, advises that no one else truly counts in this process save for the medical oncologist and the radiation oncologist at this point. She’s right. I had the distinct pleasure this afternoon of speaking to both these favorite people in my medical world — and giving them their new nicknames: my medical oncologist is Flash Gordon and my radiation oncologist is M*ng the M*rciless. Flash Gordon in the 21st century, he quipped, and yep that’s it — this is the 21st century — save for the equipment in that man’s office — the rest of the world doesn’t exist for me right now. I’m in love with that Varian. If I were younger I’d have pursued a career as a medical physicist in this exciting field. Being an old geezer now, it’s who the hell do I donate my very expensive library of books on biological medicine and quantum medicine I used in my own career up to two years ago, and I think I know exactly who that person is going to be.  Here’s the schtick: In any situation in life, on any given day, you either live or die, survive or not. I may not survive this experience or I may live to see more time, I can’t predict the future. Guys like Flash and M*ng don’t come by anymore, the world is dumbed down beyond belief in this excuse for a banana republic we’re living in — so when you meet people like this, who build organizations like this, and do healing like this, you want to leave the good books to them. They have a “physics department” and a medical physicist who comes down to check on the stuff, awesome staff, and are complete jewels in terms of who they help and what they are doing. Here in the heart of green country, there is a world that really does represent Flash Gordon in the 21st Century.And that’s the joke — it really is the 21st century, and we’re no longer sending rockets to the moon. Things have changed since my time in the brilliance of the space race, in running my own clinic, in persuing the careers, writing the books, doing the research, it will never be the same again. Now, my future time on this planet may be in days or years, but it will most likely be spent in a floating home on a river in Portland, Oregon, taking care of my wonderful husband. Relaxing. Painting, and cooking. Disability takes it toll on us all eventually. Cancer trumps everything.

NP Deb came back today as well, her presence has been sorely missed, but she survived her vacation and is prepping for boards 8/7. We wish her all the best of luck. Deb is one of those exceptional people who has both intelligence and character to reach and communicate with patients. She’s a rare one, our Deb is, and if she reads this, she’ll know how much we truly appreciate her!

Chemo Held Again but Good News

Because there was no significant change in my blood counts, we held chemo again today (7/14/2009). The great news was that my tumor marker numbers once again are heading in the right direction: the CA 15-3 marker dropped from 690.4 to 430.4 and the CA 27.29 dropped from 865.5 to 496.6. Considering that when we started chemo these numbers were at 736 and 1006 (or thereabouts) this is excellent progress.

Because these numbers were so good, we opted to give my body a chance to rest one more week before continuing. I believe my body is fighting to get rid of this cancer and all its energy is going in that direction. I have smallish red blood cells anyway, so producing them is a bit of a challenge… This week I took another Aranasep shot (to produce red blood cells) and I’m hoping to show some progress in this direction by next week.

My appetite has been excellent and I’ve actually gone from 141 to 146 on the scales, which is great news. Right now putting on a few extra pounds is going to help later down the road.

All in all, I’m pleased with this progress, and although tired, do feel better overall. More sleeping and eating is on the docket for the week to come. Regardless of blood numbers, I will continue next week with treatment (pending the oncologist’s approval).

Chemo held for today

Last week caught me with induced anemia. This week, there was little change in my red blood count over last week,  and the white count was relatively low and platelets were also low. That’s a triple play in the Drip Factory playbook, so the oncologist held the chemo treatment for a week. As he intimated, we’ve been pushing really hard, and sometimes you just need to let the body catch up with itself.  He’s requested tumor count with next week’s blood work, so we’ll have a progress report based on those numbers. In short, my body has been working very hard and needs a rest. Whatever pluses the red blood cell shot gave me last week were probably used up fighting that bout of diarrhea over last weekend. That’s all gone, save for some residual gases, but any kind of intestinal whack like that takes it out of you.

So, he sent me home with instructions to sleep as much as I want and just take it easy and we’ll see how we do next week. I’m scheduled then for another shot of the red blood cell builder. Thanks to the company’s special program for people who cannot afford the meds, I will get these shots at a fraction of their cost. What might that run, you ask? Try $428 vs. $11,000 per shot. I really want to thank Amgen Corp. for allowing me to be in their program for the Aranesp, and also Novartis for the Zometa bone builder. I feel most of the time like the oncologist, who IMHO is close to genius, is holding me together with bailing wire and string. It humbles me, truly, and I’m very grateful for the care and consideration. I hope I can survive if just to give back somehow for all the other people who might have an advanced cancer diagnosis sprung on them — There just is no good way to tell someone they are living with cancer that cannot be cured. It can be controlled, perhaps, remediated — someday I want to see it eliminated completely as a human disease, and anything I can do to foster that belief is going to happen as long as I can pull a breath. Cancer is “meltdown” plain and simple, and no matter how you deal with it, changes how you look at everything from time and space to matter and energy!

Good things — my weight held at 141, and lo and behold, he picked up more air flow in my right lung through his stethoscope. This is a good thing, because it may mean the lung is really healing and the pleural effusion is shrinking. It feels different — my back basically feels more normal this week, and I know my breathing is stronger. At this point I’ll take whatever I can get. I know my body is working hard and I really trust this doctor to know when to hold ‘em, etc. Breathing better is always a good sign.

The neck tumor itself is stinging slightly, seems to be getting smaller, and the breasts really look symmetric, with no sign of inflammation, or lymphatic swelling. The little lumps, mostly all near the surface, are going down in size, so maybe this thing is giving up part of it’s dynamic and the system is healing. I prefer to think it is rather than it isn’t, because although tired, I do feel better overall. What little pain I have is kept under tight control with generic Lortab (hydrocodone), taken in half-tab doses when needed. Even my  blood pressure is better.  The other script I take on an as needed basis is Lorazepam, which works for a lot of things for me, everything from mild anxiety (which I have and that is understandable) to nausea. It’s an amazing medicine and I’m very careful not to misuse it. I take as little as possible, but with any pain or anxiety condition it is important to keep it under close control so it never spirals out of control.

I’m doing my part here, and Lord knows I’ve been able to sleep through hurricanes, so that is not going to be a problem. Another plus this week, I’ve got a taste for certain candies, favored in my childhood, just thought up from some distant memory store in my brain — caramel cremes and Torrone — these taste really really good to me right now, and I can always use the calories.  We bought some at this morning’s run to Walgreens.  I love Walgreens. Their generic benadryl and other stuff is just a bargain, and works.

Kudos go to the hospital as well, for they’ve approved us in their charity program, and that is going to mean a very positive savings on our bills. It’s rare when two people in the same family have cancer at the same time, and it’s even rarer to be in a medical community where such an extenuating circumstance is dealt with so positively. Cancer is a very expensive disease, even with insurance, and for those of us who have none and are not even able to afford the simplest of policies, any help is a blessing. So I’m bringing down super positive mojo on the hospital, and may their programs flourish and their reputation expand accordingly. I can see why my late mother-in-law volunteered in their gift shop for so many years; she must have sensed the goodwill and dedication or she wouldn’t have given of her time. She retired from that duty at age 80, and passed away just recently at age 94, having outlived ALL her acquaintances there save one or two who mentored under her.

Though it may seem new-agey, I believe if you put out positive energy, it reverberates ten times over — anything it hits gets kissed with plusses — as we used to say in the 1960s, negative vibes help no one.

So I’m viewing my vacation from chemo this week as a positive time for my body to rest up — and plan on enjoying each and every second of my week!

Hitting the Wall, Again

I’m not sure just what there is about the third week of chemo, but yesterday was a record for feeling crappy. The week started out alright, but by Friday night I was queasy beyond normal and Saturday, the 4th of July, resulted in some intestinal fireworks — diarrhea, which I haven’t had since the first time I had it during the first chemo session. Mark had it too, which leads me to believe we had a bug.

I wound up taking an Immodium finally, and within an hour all the symptoms had stopped. Let’s hope whatever needed to get out of my system is now out.  Mark’s losing the last of his head hair and beard — I think it makes him look younger… we trimmed it all up, and lo and behold it turned pretty white within a day or two.

Next week should be a hard one, he goes back for session two and I’ll be on session four for this round.

Mild symptoms I have, in part due to the intense heat and humidity here now — ringing in the ears, lightheadedness, fatigue, generally feeling fairly weak but not incapacitated. I can’t ignore the symptoms, but I can deal with them by staying cool and in a dark room. I feel vaguely like a mushroom. Lucky, we don’t have to get out much, nor do I have any “work” that needs doing right this second.

On another topic, I’ve had mixed reaction to this latest spate of celebrity deaths. Mollie Sugden (of Are You Being Served fame) passed this week at age 86 — she was a favorite of mine, along with the rest of the cast of that Britcom. And Farrah Fawcett, of course, died a week or so ago. Michael Jackson, Billy Mays, it’s all pretty strange — they seem to be dropping like flies, and not a few from cancer.

Several of our friends have had mates die of the stuff as well. Fact is, some cancers don’t respond well to chemo. I’m fortunate, as is my husband, to have the kind that does. Weird as my cancer is, the chemo is doing its job — and my body, though changing, is better for it.

Someday I’m hopeful that cancer will be controlled on a genetic level, exactly, with meds that go directly after the specific cells involved leaving the good cells alone. Right now you have to take them all out, and let the body recover. Lord only knows how long I’ve had this cancer — the pneumonias started back in 2003, along with the “illnesses” no one could identify. I feel so much better now in comparison to these past periods in my life since then it’s hard to believe I’m “this sick”  with a disease most medicos would consider ultimately terminal. And, indeed, it might be so — save for the fact that this kind of death you only have to die ONCE, and I’ve no intention of falling prey to it in the immediate future. After all, I am 60, which is fairly young — but not so young that I’d have regrets about my life, which I don’t. I’ve done some good things, in fact, great things, and am proud both of my track record and the people I’ve been able to help along with my talents. There isn’t a day goes by that I haven’t been grateful for that opportunity. Sure, some things could have been done better, but the fact that they weren’t doesn’t bother me all that much. You do what you can do.

Things I relish now, my marraige to my wonderful hubby, my friends and family, my pets, all the stuff that makes my life my life. It’s all good and been worth every breath.

Chemo Round Two, Session Three

Today’s twist — induced anemia — my red blood cell count was too low.  To build that back up, at the end of chemo treatment I was given a shot of Aranesp (Darbepoetin alfa, also called erythropoeitin). This one has a side effect of bone pain so I’ll be on the lookout in the next couple days for that. Hopefully it won’t be much worse than a hard workout with weights at the gym. I’ve busted down and regrown more bone muscle and tendon than one person has a right to.

Otherwise, the chemo was near perfect a treatment.The new chairs are better ergomically designed than the Lazy Boys IMHO. Their footprint allows for better traffic flow as well, so it’s not so crowded-feeling.

My weeks are running with blood tests on Monday, Tuesday Chemo, Wed.  and Thurs holding my own, and Friday and Saturday a slow trip into nausea land. By Sunday and Monday I don’t even want to eat. However, I force myself, and take the nausea meds I have. Weight held pretty well from last week at 141, down from 145. I’m good with it, I’m now counting calories on pencil and paper.

I had a baking epiphany this week as well.

I found my Muffin Book. It’s a great book full of both sweet and savory muffin mixes, as well as some quick breads and flat cakes. I made apricot prune muffins, and for my liquid instead of milk I used Instant Breakfast, very high in calories. A half-cup of that goes a long way. At 350 for 15 to 20 minutes the muffins baked well. The overall recipe came out not so sweet (a good thing), and very rich thanks to the Instant Breakfast. These muffins are high in fiber as well (substituted granola for streusel) and the muffins went very well with morning tea (Orange Spice). I consider this great progress because a few weeks ago I couldn’t stand the taste of a sweet donut or bread. This has shifted now and I can eat the more creamy muffin or donut.

Skipping subjects (chemo brain allows me to do that without being given either a reality check card or a IQ test), the meeting with the doc and our Nurse Prac (hereby abbreviated as NP) went well. I had what I felt was positive observations to report: the tumor seems to be not only shrinking but changing shape..you can actually now feel the clavicle on that side, and see where the veins are shrinking (these were feeder veins created by the body to deal with the tumor). The tumor was really so big it was hard to tell its shape from the rest of the chest wall and muscle but it’s getting so you can see the differences now. It’s all very soft in comparison to what it was, and the inflammed breast has totally calmed down, in fact, it pretty much looks like the other breast now save for a difference in nipple colour. The shapes are really symmetric too, that’s a lifetime first. Doc tested the right lung, it’s still pretty weak in terms of drawing air so the pleural effusion must still be there, and I’ve decided I’m going to do some more breathing exercises and try to walk more. He says after the cancer is killed it will be 6 to 8 weeks before the effusion will drain off. The Advair is working incredibly well to maximize what’s there, and NP Deb says to take the full two doses every day, the effect apparently is a cumulative one. Being able to breathe is very important. I’m uncomfortable when I can’t breath — in fact it’s one of the few things that will send me into an all out panic (too many memories of nearly croaking as a kid as parents struggled with home remedies for my asthma and bronchitis). With the drugs available nowadays, there is no reason for this kind of stress.

You can tell I’m a true engineer: it’s whatever works, within reason. I’m not adverse to trying alternative items, like Cordyceps caps, but I’d rather work with something I’ve already successfully used first. I’m also getting a slew of asparagus emails, containing up to FOUR (count em) case studies of people mystically saved from cancer by consuming asparagus drinks every day. While I can appreciate information like this, it’s hard to describe the difference in mental terms between the science of oncology and the food fantasy.  A throwdown this ain’t.

I really have to put in a few words here about Deb, our hardworking NP. She is seriously good at what she does and has a great mind for detail. So why do I get the feeling she’s almost in continuous chronic pain? Too many years of me working in my clinic I guess. With her I pull it off as pain in the mid to low back, the goosey kind that flares with exertion. I admire her for working through it all. If my own clinic were open she’d be a good candidate for some gentle lomi type therapeutics. Before I got sick I was moving in the area of lymphatic massage and the more gentle work for sicker people. After years of working neuromuscular and sports therapy, I myself felt the need to do more pallative treatments on clients instead of the harsh but eminently effective trigger point therapy and structural reintegration.

I’m too sick, of course, to work now, but should I get well eventually, at least well enough to do any work, I’d consider reopening for lymphatic massage. This I believe would do the best good for the greatest number.

My background as an osteopath is huge though I hold no med licenses now, and I am a good acupuncturist. I have a lot of training, and could see myself getting more — there are some great classes out there now on lymphatic massage, and the more I think about it, the more I realize it might complement chemotherapy very well. It would not compete with what the chemo is trying to do, if anything, it should aid it by improving signal pathways in the nervous system through better behaving lymphatics.  Also, this technique would amp up parasympathics, and promote relaxation for the client. Again, drugs work better when the body isn’t freaking (not to mention the person).

I’ll have to give the matter some serious thought. It’ll be a while before I can do a half-hour or an hour session on someone, but it’ something to plan for.

Meanwhile, I’m just trying to reach my own zero-sum game with this interesting cancer I have. I’m going on wits-sharpening protocol starting tomorrow and will go back to working out some problems in diffy q and calculus for starters. It does one no good being this smart if all I can do is watch it degenerate. Cancer requires a different style of fighting, one that uses mental and emotional weapons to prevent meltdowns. It’s melting down the body, and the psychology of the disease melts down the mind and emotions.  Strength here involves honest looks in the daily mirror and strong commitment to the best plan, with ability to roll with punches should the plans have to change. It’s not an exact science by a longshot.

I have to render accolades to both the oncologist and NP Deb — they leave no stone unturned looking for answers, and although they may not find all the questions, do not hide behind the Ultimate Answer of “42″ where their patients are concerned. That kind of dedication is worth this Hitchhiker’s ride on their UFO.

Chemo Round Two, Session Two

If there could have been a near perfect chemo session for me, yesterday’s was it. The addition of the small amount of morphine makes the drip nearly painless and I got nurse Barbara to use one of her special needles (they are butterfly in shape for the needle support to support a 24 gauge job that otherwise just kills me). This goes in my left hand, which is constantly in pain along with the left arm — we think that’s due to the cancer that has migrated to the spine, it’s my oldest symptom next to the slightly irritating neck tumor — this is all about minimizing symptomatic pain and keeping it under control, to a large extent. Chemo is a two-headed Janus god of a treatment and you have to stay alert to the side-effects, good and bad, for it to be anything close to a comfortable experience.

The oncologist was still on vacation (though one of the nurses told me he’d been in every day to check his patients and do hospital rounds) — but sure enough no sooner than we finished this conversation than he showed in the clinic — and was educating several of the nurses on the computer. A long time ago I had suggested he get this clinic into the 21 st century — You Tube has great vids put up by cancer patients, there are pdfs all over the place on research, the net is just full of super educational tools. I’d love nothing more than to see an education center at the Drip Factory, so people can come in and learn more about their cancers and how they are being treated.

I went through Deb, our nurse practitioner, to get the onco to prescribe some Advair for me in lieu of the Albuterol — this is for my breathing. My shortness of breath (a symptom in  my body caused in part by the pleural effusion from the cancer) is complicated by a lifelong struggle with asthma. The old tech, while cheaper, just doesn’t compare in my case with Advair. I got the 250/50, its a steroid yes, and has its own side effects, but I only have to use it once per day for it to be effective for me. Its an inhaled corticosteroid, fluticasone propionate, and a long-acting beta2-agonist (salmeterol). It totally works for me, and I take a puff  around 5 pm, when all my symptoms seem to be worse. For me, with this cancer, everything gets worse in the late afternoon. Deb says the additional steroid will do double duty in the pain control — this way we don’t have to prescribe an additional med for pain.

The nurses told me the drug reps were taking them out to dinner at a steakhouse in Tulsa. I don’t have a problem with that, in fact, it’s a nice idea. These gals work really hard and the onco is a stickler for them looking very pro always in matching uniforms etc. As one put it “don’t get me started!!!” I’m laughing because actually they do look very professional all the time and I personally like the matching uniforms, they get casual Fridays after all and wear what they want then. The more I’m there the more I like both the Drip Factory and my oncologist.  I am feeling so much better today than I did at the start of treatment he must be doing something right.

Foods that taste like themselves this week: Tropicana Ruby Red Grapefruit Juice, Ocean Stray Ruby Red Grape Fruit Juice, Ocean Spray Blueberry and Pomegranate Juice, shallots, red onions, spinach and salad greens, blue cheese dressing, corn tortillas, jalapenos (which taste particularly excellent), nachos (I made a hellacious batch and actually managed to eat 10), Heinz Dill Pickles.  I’ll be experimenting with some new recipes, including a cheese-stuffed hamburger patty on a foccaccia roll. Bread I can eat — sourdough  bread, and spiced foccaccia with garlic and basil. Those pretty much taste like themselves.

Yesterday, I talked briefly to a woman who has liver cancer. We were laughing because in the hot weather we both brought socks — and took off our shoes in the chemo chairs and put them on. I always wear my Wicked Witch of the West socks (black with orange stripes). Her cancer drip took some of the same meds as mine — and she’s getting better too, so we had a pretty positive corner going on. Her mother had died from breast cancer, and as my mother died of chronic granualar leukemia in 1967, we were talking about improvement of treatments over time.  The upshot of the discussion was that we both felt lucky to be at the Drip Factory, and also to be living now as opposed to then, when certain cancers were total death sentences. It gives a lot to reflect on, when you have conversations like that with total strangers. Right then my benadryl drip kicked in, so did hers, so we both nodded off.

Mark accompanied me over to the clinic, and did the runs to the medical pharma at the hospital — we totally love the pharmacy there by the way, as well as the cafeteria, which is actually a catering service. The food is awesome and very inexpensive. Nurse Barbara took out his stitches, so he was a lot more comfortable after that. He had a bout of bone pain last night and reports on that in his blog at whatwasthemiddlepart.wordpress.com.

Weightwise, I am down 3.5 lbs for the week to 145, not too bad for chemo restart. I look pretty good and oddly, my body seems to be carrying weight at this level with more ease now. I’m certainly enjoying wearing smaller clothes and feeling “light”. I’m going to try, over the next four treatments to keep the total loss to 10 lbs.