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.

Chemo Round Two, Session One

Yesterday was round two, session one with Chemo. Same regime, and we are permanently adding a few dabs of morphine here and there to control the pain in my hands and arms from the IV. I can’t have a port installed due to the position of some of the cancer up in my clavicular area, so the IV goes in my left hand. I have good veins so it’s really not a problem, but I do have some pain due to the cancer coming from the metastatis in the spine, so this controls all of it. The chemo went smoothly and I had no reactions. In fact, truth be known, I was glad to get back. I feel so much better today.

Yesterday I talked with an ovarian cancer patient (in her 70s) who had been coming for seven years and is still surviving. It was encouraging to hear her story.  Her cancer was advanced but caught early enough to be “kept under control”. She reminded me of my own diagnosis, which is basically the same.

My oncologist said “we just have to keep chipping away”, and that is the sum total of my treatment. I have a positive feeling about this series of chemo, and I feel like it will do great damage to my cancer. My bloodwork looks very good, almost all back to normal after this break. Chemo basically drops it down, like levels of a roller coaster, until the end of the sixth session, then we take readings, and a break. This is working.

I’ll be more than happy to get the cancer to a maintenance level like my friend who has ovarian. She looks good and is living a full life. Some of us have taken to wearing our good jewelry to the chemo, like a statement of power. When I was working in the 1980s, we used to wear power necklaces and a lot of heavy metal to enhance our image. It may be out of style but I broke out a few good pieces yesterday and today, and it feels good to have it on my person again.

My weight is holding at 149. I’m allowing a ten pound loss for this series, just because my appetite is so unruly at the moment. Otherwise all is well, and I feel a whole lot better than I did 8 short weeks ago.

A Two Cancer Household

By now most of our friends know that my husband, Mark P. Line, has been diagnosed with lymphoma. He has a personal blog up at whatwasthemiddlepart.wordpress.com for anyone who wants to read his story, which is both fantastic and to the point.

No one ever sat us down and told us we’d be having cancer at the same time, and it presents its own form of challenges in taking care of each other and working toward anticipating problems before they start. Lucky for us we’re living at a time when chemo drugs are available that can at least, for Mark, wipe his lymphoma off the map quickly. And, in spite of my advanced cancer, the drip factory has succeeded in pushing back the tumors — and ultimately I’m hoping we’ll get it under control.  I’m feeling better than I did anyway, which is good.

In some 12 days Mark will lose his hair, which will be an experience. Actually I think he’ll look rather handsome. You’ll be able to read his reactions directly — I think it’s important for a man to post his reactions to cancer.. more and more of this is happening lately and guys need feedback too.

The Rebuild Period

The first six sessions of chemo are complete. I am now in a “rebuild” period. I start my next six sessions on June 16th. I anticipate this next chemo round will do most of the damage to the tumors and look for the markers to really drop by the time they are finished. Then, reevaluation — there may be a third set of six, depending. The only goal in this game is to get as many cancer cells dead and gone as possible, then go on hormones, or some combination of chemo and hormones to keep it that way. My goal is nothing less than “disease free”, although “cure” may not be in the AMA vocabulary for this condition, I can always hope for the best here.

During this rebuild period, my white blood cell count, red blood cell count, and platelet count, all of which took a beating during the six weeks of chemo, will have a chance to recover.

At this point, I’m pleased to say my appetite seems to be returning as well, and the taste sensations, although still “off” are more normal than during chemo. My energy levels are coming back, but I still have to watch it, because I have a tendency to overdo it — rest is still critical to this process.

One thing that I am keeping “off” is my hair. It of course fell out during chemo, but there is no point at the moment, with more chemo on the horizon, on letting it grow back in, so I have now got a great collection of scarves, bandanas, pirate earrings, and a couple new wigs on order (on sale, of course) to supplement my lone wig. Thanks to my sister-in-law for coming through with a care package and advice, and to my cousin for the beautiful scarves.

If you want to comment on any of these observations, you’re all welcome to join me on Facebook. Just look up Leane Roffey Line, and send a message with your friend request that you are following the cancer portion of the Fourth Wave. I access Facebook every other day or so, so if you have concerns or questions, that’s where you can get hold of me.

Chemo Six and the MRI

This week really began last Friday, May 22, with the taking of two MRI tests, one on the cervical spine and one on the thoracic. I may have mentioned my oncologist is a stickler for detail, and when my left arm pain did not subside, he wanted to see what was going on.

The MRI gave us perhaps more than we bargained for, but I’d still rather know what was happening than not.

On the weekly bloodwork , he ordered the tumor markers be run, to see if there was change. There was, to the good.

The good news after this first six weeks of chemo:

Leane’s most recent blood work (Friday) shows her tumor markers
decreasing. One of them is down from 736 to 690.9 (CA 15-3), and another is down from 1006 to 865.5 (CA 27.29). For a great article on the value of CA 15-3 in the cases of metastatic lobular breast cancer past Stage II please read this.  This marker will track disease regression in cases like mine, so I was pleased it’s value went down.  My lab reports the norms for this value should be0.0 to 31.3 U.ML so there is a way to go!! The CA27.29 Marker, especially when used in conjuntion with CA15.3 and others,

The CA 27.29 test is used to monitor your:

• Response to treatment
• Status of your cancer
• Possibility of early recurrence.

This marker dropped131 points. I was delighted. The oncologist says he’s seen it higher in others, and isn’t scared of the value. That gives me a great deal of confidence, especially in light of the newly found involvement with bone. I have faith in the zometra bone med and calcium to help control this. In fact, I would be satisfied in a few months with “stable disease”. It is very hard with this cancer to assume you know where in the body it all is — so it’s best to assume it is everywhere. By careful monitoring, we hope to get the very best out of the chemo treatments, and I’d like to avoid local treatments and stick to systemic as long as possible in my case.

The bad news — well, not really because we have better knowledge now — came from the MRI where it appears more spine is involved than first thought.

Here’s the report that came back from Leane’s MRI last week, which they
did because she was complaining about pain and loss of muscle mass in her
*left* arm (opposite the cancer side) (thanks to my husband Mark for this part of the report):

Report
15 mL Magnevist

FINDINGS:
There is abnormal signal and enhancement at C5, C6 and C7. While this may
be due to degenerative disease, metastatic disease is not excluded. There
is no pathologic compression fracture. There is C5-6 and C6-7 central
canal stenosis due to disk bulging and posterior osteophytes.
There is no abnormal cord signal, mass or enhancement.
There is a known large right neck base and right apical soft tissue tumor
mass.

IMPRESSION:
C5, C6 and C7 metastases without pathologic compression fracture.
Mild C5-6 and C6-7 central canal stenosis due to degenerative disk disease.

We also ran the thoracic spine — the PET scan had indicated bone cancer in the upper thoracic area. The MRI verified this and specified exactly where.

MR Spine Thoracic w + wo contrast

15mL Magnevist

FINDINGS:

There is abnormal marrow signal/edema and abnormal enhancement at T1, T2, and T3 consisten with metastatic disease. T3 is most severely involved.
No pathologic vertebral compression fracture is seen.
While there is no frank cord compression there is sufficient spinal stenosis at T2 and T3 and to lesser extent T1 and T4 due to right dorsal dural/epidural soft tissue thickening. This measures up to 6.6 mm and may represent dural metastatic disease or extra osseous soft tissue tumor.

(NB: Dural metastatic disease is very rare.  Read about it here. Again, this is a systemic phenomenon. )
There are numerous dorsal subcutaneous nodules and masses consistent with metastases. The largest is at the T12 level measuring the 3.3 x 2.2 x 2.0 cm.
There is a large right pleural effusion.

IMPRESSION:

T1, T2 and T3 metastases. No pathologic compression fracture.

And, although the “large plural effusion” is back, it is not what it was. We are holding on another thorentecitis session for a few more weeks. The right lung is working better and I am not subject to shortness of breath like I was. I suspect natural draining is occuring.

Regular bloodwork shows the wbc to be on the low side but increasing, as are rbc and platlets.  I am adding additonal calcium to compensate for the bone medicine, and will be adding more vitamins.

Chemo Six, which was today, ran very smoothly — just like last week save for the bone meds which are run monthly. I do not have to go back until June 15th, so this will be a good rest, and give my wbc, rbc, and platelets a chance to recoup. They are all slightly down on the low side — the wbc count jumped to 2.5 from 1.06 (normal 3.7 to 11.0) so all the rest and good food has paid off this week.

Chemo Five: Smooth Sailing

Tuesday, May 19th was the fifth chemo treatment. Tagged onto this one was the bone medicine. I’m pleased to report that the chemo session (as described in Chemo Four with the addition of the bone med went very smoothly). Because this past week brought some pain in the left shoulderblade, shoulder, arm, wrist, and hand, I had to have a very  small amount of morphine with the chemo push, since it was done in that hand. This made the whole procedure nearly totally painless, and considering the session administered for nearly four hours, this was a good thing.

The arm pain, muscle wasting, and dimensional changes had been going on for months. This was the first place really that I noticed significant body changes due to the cancer, and according to Harrison’s Principles of Internal Medicine, is not uncommon with cancer (p. 642 , 15th Edition) and since we aren’t sure of the etiology, the oncologist has me scheduled for an MRI of the cervical and upper thoracic area on the 22nd.

Overall, the oncologist and I am pleased with the treatment so far. I am feeling better, eating more, and sleeping better. Nausea and vomiting seem to be under control with the medications he’s prescribed. I did lose a few more pounds, at the morning weigh in I was 149, down from  155 last week. I went over this with him and got more suggestions on how to increase calorie intake. Basically anything goes at this point, and that includes any fast foods I want.  For once I am grateful that when this process started I was holding at 183 (age 60).  And grateful too for the years of bodybuilding, because in spite of the wastage, there is still muscle.

My hair is completely out now and in fact stubble is already growing in. I picked up a few cute knit caps at the Center, courtesy of the Bartlesville Fibre and Knitting Group to keep the pate warm and cozy, and my sister-in-law has a care package on the way, as well as my cousin.

The oncologist points out again that we have a lot of cancer to kill, and I know the disease is widespread in my body, however, I’m not afraid of it. We have numbers for the two biggest tumors, 736 and 1006, and he’ll be checking those once this round of chemo ends. We can see the visible shrinkage at least at the tumor on my right neck axilla area, and many of the areas affected under the skin (like lymph nodes under my arms) have shrunk.  We’re using the PET scan as the major “map”.

At only five weeks in treatment, I am pleased that there have been palliative effects, in spite of the fact that chemo is very rough, and always difficult for each and every patient in some way or another.  It’s always a balancing act with cancer anyway — it translates out as try to do no further harm while trying to ameliorate the harm that’s already done by the disease process itself, especially tumor burden.

Tumor burden isn’t really talked about much, but that is the effect the tumor and it’s presence is having on the patient, the idea being that when it gets to be “too much” (defined in various number scales) the tumor kills the patient.  Most commonly talked about in lung cancers, tumor growth, invasion or obstruction of adjacent structures, growth in regional nodes through lymphatic spread, growth in distant metastatic sites after hematogenous dissemination, and remote effects of tumor products, are all areas the oncologist and patient need to address. In addition, peptide hormone secretion by the tumor, or immunologic cross-reaction between tumor and normal tissue can produce a variety of signs and symptoms. Cancer is a complex disease, and its byproducts and side-effects are numerous and dangerous. This, in part, is why combinations of therapies are used — chemo, radiation, surgery, etc.

In this chemo round, I have session six left next week, and then two weeks “off” in which we might do some repeat tests to check progress. This I am leaving up to the oncologist.

I’m working on increasing my energy levels by Chi Gung and meditation practices, and also more vitamins and food. Those are things I would normally do anyway when sick at this stage of the game.  Some good research papers were found by a friend on the benefits of remaining physically active during cancer. I believe this is a good thing to do, and also it is very important to maintain as stable an attitude as possible toward the disease, which is a long term problem and because of this is hard for most people to reckon with.

I have hopes that the records left in this blog will give some guidance to others who have to deal with advanced cancers, which have their own set of issues. Regardless of the time left to you, no one has imprinted a number on your feet… median prognosis of four to ten months for example, is a statistical measure, and when looking at the individual case, should not be taken as a death sentence. Various studies yeild various numbers but all of it, for the individual, will be dependent on individual factors, such as response to treatment and attitude.

My cousin Carol brought up the case of Farrah Fawcett this week on Facebook, I didn’t know she was suffering from cancer, but apparently has had quite a bit published in the media. I wish her well, she was always a favorite actress, and I hope her message will reach a lot of sufferers.

My message for the week is always remember to rest. Even if it’s just a forced rest, hanging out on a relaxing surface, no sleep involved — rest is important for the cells that have to rebuild. Chemo kills good cells as well as bad ones, so rest and proper nutrition are mainstays for the immune system and should be taken seriously. Keep up your sense of humor too, that helps a lot.

Chemo Four: Turn the Corner

Like someone once told me, it’s all in the mosh-up. Certainly that was true for Tuesday pasts’ Chemo session, Number Four. My white blood cell count had moved up from .666 to 1.08, so Four was a clear “go”.

The Witches Brew for Four included all drugs below save for the bone drug, which I’ll get again at Five.

Saline Drip

The Drugs

Aloxi 250 mcg
Decadron 10 mg
Benadryl 50 mg
Pepcid 20 mg
Ativan (syringe)
Paclitaxel (Taxol)
Carboplatin
Once a month: Zoledronic Acid (Zometa)

Since we found evidence of cancer in breast, lymph, lung and bone, its a safe bet that this protocol covers the mosh-up. These drugs do what they do and they do a good job.  Side affects notwithstanding, for nausea at home here I’ve been prescribed promethazine (mixed in a creme by our pharmacy at the hospital which happens to be a very cool old-timey compounding pharmacy), and Ativan — one of those ultimate does a lot of different thing type pills which happens to work wonders on nausea, at least for me. My appetite is increasing, which is great because sine 3/30 I’ve dropped 25 lbs. and don’t particularly want to drop any more. My sister-in-law dropped 47 during her chemo and she didn’t have it to lose.  The only other side effect this week has been the beginning of hair loss — more is coming out as I brush or if I run my hands through my hair…I have a lot of hair so this could take a week or so.

Amazingly, Chemo 4 was as smooth a treatment as I’ve had yet. Everything dripped in properly, no nausea due to the proximity of the Ativan to the chemo drugs and everything else protected the tissue it was supposed to protect. I’m at the point now where I can actually taste the drugs, and the saline. I’m trying too, to be conscious of what they do when they’re taken into my tissues and short of hallucinating I think I can report proprioceptive sensations, especially with the Benadryl — that is some fine old technology and it does a hell of a job at what its supposed to do.

I guess my favorite of the lot is the Zometa, the bone drug. Its used to prevent complications of cancer that has spread to the bone, and is a bone hardener. It pulls serum calcium out, so I have to take extra — OsCal is doing a good job twice a day. After the first session, in about seven days, I felt stronger — almost like five or ten years ago stronger. I come up for my second session with that drug next week and my poor scapula (both of which have cancerous lesions) and T4 (also affected) are looking forward to it.

In cases like mine, the word “cure” has no meaning, because when a lobulized cancer metastizises like this you don’t know where its at and it can show up years later in places you never dreamed. You perhaps can go “disease-free” as a linguistic symbol, assuming you kill all the cancer cells, but that’s about it. The tumors themselves are sources of new problems, pieces break off and cause embolisms, they put pressure on places they are not supposed to, and there is always the risk of throwing a clot, etc. Chemo, at this point, in spite of the bad rap it gets (it is a rough treatment) actually can make you feel better. And for systemic problems, it’s the only way to go. Surgery really can’t address much here at this point.

It rained like the blazes during the infusion session, but I was comfy in the corner LazyBoy, with my heating pad. There weren’t too many people there yesterday, actually, in comparision to some past weeks. One man came in with what was clearly pretty bad lung cancer although they sent him for a CAT scan, so I’m not sure they were sure. I was sure, after reading and watching for a while, and listening to that signature cough, it’s hard to miss. His GP had given him some Ambien and apparently he wasn’t doing well with it, so it was suggested that he just take an extra half-Xanax before sleep. I was dozing in and out, listening to all of it, just watching him roll his oxygen canister back and forth and argue with his sports bedecked OU wife, who was crying in frustration. The best friend was there too, offering driving and moral support. They sent him off finally to be scanned, and things quieted down, with three of us snoozing in the back corner of the room.  It must be really hard for some families. This is all a very big problem, and unless a cancer is caught early, and I mean really early, there isn’t much our current medical science is prepared to do at this point to take care of it.

Today, I’m a bit tired, as I was yesterday, but feel amazingly well in comparision to the way I felt four weeks ago. While I can do it, I’m going to study the problems and observe what’s done at the Drip Factory here, and see if there’s a way to present some of this information, tying some pieces together. This disease, such as it is, moves into mega-nightmare status the minute “in  situ” ceases to have meaning. We just aren’t prepared to treat a whole invaded body — and the actual cause of death is often a blow-by of something caused by the tumor and not the tumor itself, or in the case of non-tumorous lesions, other problems. At least now we have PETs and MRIs to give us information about where the cancer has gotten to…the CAT didn’t pick up the bone metastises, for example, but both the oncologist and I knew they had to be there because in this type of breast cancer (esp. with the inflamed breast) 41 percent of women have them…and yep he didn’t blink an eyelash when the results came back.

On the good part of all this, the inflamed breast has quieted down, shrunk almost back to normal, has lost a lot of the edema and orangeskin look, and otherwise is better. The neck tumor has shrunk as well to the naked eye, which, after just three weeks, is an accomplishment.

I’m breathing better, although will probably want another thorocentesis session before too much longer, and just hope I can get through sessions five and six without too much drama. We will be taking two weeks off, then doing session seven through twelve.