Posts Tagged ‘sarcoidosis

13
Nov
08

November 13, 2008

Well, the Games Party was loads of fun – we had 33 attendees – the one who traveled furthest came from Georgia! We polished off 5-1/2 half-gallons of ice cream, two cans of whipping cream, a giant bag of Doritos, one of Ruffles, one of Fritos, two types of dip, a meat/cheese platter, most of a veggie platter, two bottles of champagne, two punch-bowls-full of Nuclear Punch, a case of beer, a bottle of wine, half a case of sparkling water, and 2 cases of soda.

And we played some games.

A new one that had never hit the party before was “Man Bites Dog”. Neither Brian nor I had the chance to play it that night, but we played it the next day, and it was a blast. Cards with words or short phrases are dealt to each player, and each person tries to make a headline using up to 5 cards. So we came up with some hilarious ones like “Blind Teen Angel Shoots Cop”, and “Angry Tourist Hits Naked Model”.

Another new one was “Pass the Popcorn”, which is a movie trivia game. It was fun, although I’m not really up on movies, so I was surprised at how well I did. Lots of other games were played – Quiddler, Taboo, Munchkin Fu, Boggle, and many others; and of course, we played Midnight Party (quite a while after midnight, however). We slept in on Sunday, went out to brunch with a friend, and lazed around the house for the rest of the afternoon – except for when the neighbor boy came by to ask if Robin could play – they went out and ran around the back yard. I think we have the only Shetland Sheepdog whose idea of a game is to *be* chased, rather than do the chasing. If we ever get him out to the farm again, he’s going to be sadly disappointed that the sheep don’t want to chase him. . .

I am down to only 10 more radiation treatments to go – yay!!! Even now, the worst thing I’ve got going is the radiation burns. Not only do I have them on my front and under my left arm, but because the beam that is treating the sub-clavicular lymph nodes is directly overhead, I have radiation burns on the back of my left shoulder from the radiation exiting my body. How scary is that?

Yesterday I met with the radiation oncologist, and when she saw my burns, she decided it was time to switch to the electron boost on the lumpectomy scar and give the rest of the tissue a little break. This morning was my first boost, and it is pretty much the same as the radiation treatment, just at a different angle. Because they can regulate how deep the electron beam goes, they can position the beam directly above the breast without fear that it will go deep enough to enter your chest cavity and damage your lungs or heart. I’ll have 5 boost treatments, and then finish up with another 6 regular radiation treatments. My last treatment will be the day after Thanksgiving.

Also yesterday, I had a chest x-ray and a follow-up appointment with the pulmonary specialist to find out the status of my sarcoidosis. Guess what? It was all gone, just as if it had never been there. I’m still convinced that the Ambien CR was the cause, but the doctors don’t believe it. They rightly point out that Ambien has exactly the same set of adverse reactions listed, and I’ve never had a problem with plain Ambien. My opinion is that the reason the CR is a problem is because I’m also on Nexium to control my GERD, which reduces my stomach acid to nearly nothing. With Ambien CR, I suspect that the lack of stomach acid means that I didn’t metabolize the Ambien at the “proper” rate that someone with a normal complement of stomach acid would, and that it was essentially causing an overdose. Three days after I stopped taking the Ambien CR, my symptoms were much better; and a week after that, I had basically no symptoms. However, since I’m not going to try taking Ambien CR to recreate the problem just to prove my theory, we’ll probably never know.

When the doctor told me the sarcoidosis was gone, I let out a breath I didn’t know I’d been holding. In spite of having two biopsies that were negative for cancer, I was apparently still worried about it.

And next week, I meet with the oncologist to determine the chemo treatment plan – when, and how many. I basically know the what, unless he’s come up with an alternative: Taxol. I’ll be glad to have the plan – having a goal date to look forward to is very helpful. I’ve been crossing off each date on my calendar after I finish another radiation treatment, and it helps my attitude when I see that I’ve finished more than two-thirds of the treatments.

Next up on the calendar is Thanksgiving – we’re spending it with our good friends Sharon and Gary and their family – they’re awfully good to us!

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02
Oct
08

October 2, 2008

Oh yeah.

I forgot to update on the cancer treatment progress.

We met with the radiation oncologist on the 22nd, and she wanted to have 4 weeks of healing between the last surgery and the start of radiation.  I wanted to shake her – do you know how big any microscopic cells could grow in a month?  It only took 10 months to grow 1.3cm *while* I was in treatment – in one month, while I’m *waiting* for treatment it could grow *more* than 0.13cm!  They told me before that I was clear, and look what happened…

But…she knows her job, so I just listened, and we scheduled the appointment to have a mold made.  Because they have to hit the target exactly in order to avoid irradiating the heart and lungs, or other important things like the unaffected breast, I will have to lie in exactly the same position for every single one of the 33 appointments I will have.  Hence the mold, which will hold my left arm over my head and (I think) slightly arch my back so that my chest is rounded up (get along little . . ., well, OK, not quite like that).  After the mold is made, they will take a CTscan with me in the mold to figure out where all the internal organs are, so they can plot angles and place tattoos, etc.  I get the mold done on the 6th, and I think the tattoos, also.

Then I will start radiation on the 13th.

5-1/2 weeks later, they’ll change from the general bombardment of my left chest (from the bottom of the ribs to the clavicle), over to a 1 week specific bombardment of the area around my latest scar, where the surgeon placed clips so they can locate the correct spot.

My last treatment should be the day before Thanksgiving – I think that’s taking things a little far, trying to make sure I have something to be thankful for.  As far as I’m concerned, I already do – Brian, Robin, April, and Jeremy; family and friends; a house; a job; my health – well, 4 out of 5 ain’t bad. And by the time Thanksgiving rolls around, I suspect that I will be grateful for not having to go through any more radiation treatments.

As far as side-effects of the radiation treatment, the two worst things I will experience are fatigue and skin problems. The doctor said that if you consider the fatigue from chemo a 10 on a scale of 1 – 10, then most people report the fatigue from radiation around a 3 on the same scale. Also, it won’t start right away – it’ll probably take a couple weeks before I start feeling any, and it will slowly build as the treatment progresses. And it will continue for a couple-three weeks afterwards. As far as skin issues, most people get a “sunburn” effect, to the extent that it turns red, becomes dry, and peels – sometimes it will become swollen and puffy.

Other than that, some of the long term effects can be heart damage, brittle ribs, lymphedema, and cancer. Huh? I thought that’s what we were treating! Yeah, well, that’s down the road – wouldn’t you rather be cancer-free now, and get to go through all this again later? Geez…

Then I have an appointment with the pulmonary specialist in November, about the sarcoidosis – he’ll do a chest x-ray to see if it’s the same, gone away, or if it has spread. I still have symptoms, but typically very mild, and he doesn’t think that the radiation should affect it.

And I meet with the oncologist in mid-November to plan out the chemo treatment. His nurse says that he prefers to leave 4 weeks (what is it with 4 weeks! If they were medieval doctors, it would be 3 weeks, or 5 weeks, or some other mystical number – when did 4 become the talismanic number for doctors?) between radiation and chemo, which means I’d be starting the last week in December.  I figure if he thinks it can wait that long, it can wait another week, and I will start after the New Year. Yeah, this is the same person who was just railing about how big those theoretical microscopic cancer cells could be growing while waiting for radiation treatment to start. But look at it this way – if it grows 0.13cm in the 4 weeks between radiation and chemo, one more week will only add 0. 03cm to it. Hardly the tipping point, eh?

So anyway, there’s the plan. I hope to be able to work through the radiation – I may do more work from home if the fatigue gets bad. As for the rest of it, I’ll think about that tomorrow. After all, tomorrow is another day.

10
Aug
08

August 10, 2008

I have been intending to post for several weeks, but information kept trickling in, and I kept waiting for just the last little bit so I could publish full disclosure, rather than dragging it out over several posts. As well, I was going through a stress-puppy phase, and I tend to withdraw rather than sharing when I’m feeling that way.

As my neurological-type symptoms increased in severity (inability to concentrate, blurry vision, extreme tiredness, memory lapses), to the point where I didn’t feel I could drive safely; and it was taking too long (in my opinion) to get in to see a doctor; I started thinking about what had changed around the time I first got the cold, and never really got better afterwards.  One of the things that had changed was my prescription for Ambien – by early May, it was no longer helping me sleep through the night, and just before my prescription ran out, I had an incredible bout of insomnia that lasted for several days.  I hadn’t been taking Ambien every night (and sometimes not for weeks at a time), nor did I take the maximum dose every time I did take it, because I was concerned about addiction.  Halfway through this bad patch of insomnia I ran out of Ambien, so the doctor prescribed the controlled release form of the drug, Ambien CR, to help me sleep through the night.  It took several days for the insurance company to approve the prescription, so the insomnia got worse, while I tried different over-the-counter items and tried dropping caffeine to half of my usual level, and then half again.

Right about the time I started using the Ambien CR, I developed a major cold, but I did start sleeping better.  The cold finally went away but I continued to have the chest symptoms, and the neurological symptoms started to get worse, as well as the tiredness.  This was what prompted the oncologist to get the CT scan, MRI scans, and the PET scan, which identified the enlarged chest lymph nodes.

So here I am nearing the end of July, waiting to get in to see a doctor, and things are getting worse.  Noting the conjunction of the cold and increasingly bad neurological symptoms with the start of taking Ambien CR, I checked out the clinical trial data for Ambien CR on the manufacturer’s website, and it turns out that every single symptom I had showed up under the Adverse Reactions for this drug.  Again, I didn’t take it every night and didn’t take the full dose if I could avoid it; so it seemed like it shouldn’t have been any worse than the plain Ambien.  However, I stopped taking it, and over a period of three days, saw radical improvement in my ability to concentrate, the blurry vision, the memory problems, and even some of the tiredness and shortness of breath reduced.  Yay for me!

Unfortunately, it didn’t really help with the chest symptoms.

The update on the enlarged lymph nodes in my chest:

My oncologist referred me to a pulmonary specialist, who decided that he wanted another biopsy of the lymph nodes, only this time they would go down through my trachea (windpipe) rather than through my esophagus; and into my bronchial tubes, poke down into my lungs and take samples; and then through into the lymph nodes again.

This latest biopsy was done on August 1, and was again done using the conscious or twilight sedation.  The specialist said that if they found any of the granulomatous inflammatory cells in the lungs, sarcoidosis would be a firm diagnosis; but if they were only in the lymph nodes, it would only be “likely” that I had sarcoidosis; and if they didn’t find anything else (he mentioned cancer again – whoa! I thought that had been ruled out! and he mumbled something about “sampling error” – reducing a possible misdiagnosis from the first biopsy to a statistical anomaly), they would presume I had sarcoidosis, and treat it accordingly; which in my case, because my symptoms were more than mild but on the low end of moderate, meant doing nothing.

This week, the specialist called with the results – nothing in the lungs, nothing but granulomas in the lymph nodes, so good news!  I most likely have sarcoidosis, which means I get to wait for it to go away on its own. Woo-hoo!  I can hardly wait.  Really.

However, I do have other news that isn’t nearly so good.  I found a lump on my left breast (well, what’s left of it, anyway) in June, and after having an ultrasound and a mammogram, was scheduled for a biopsy on July 31.  The results of that biopsy are that the breast cancer has recurred.

I met with my surgeon late this past week, and although they’re still awaiting the final results on the tumor characteristics, it does appear to be a more aggressive type of cancer.  Still, because it was found so soon, and because it is so close to my having finished chemotherapy and starting the anti-hormonal treatment, she and the oncologist are sure (now that two biopsies have shown no cancer in the chest lymph nodes) that it hasn’t spread.

I have a lumpectomy scheduled for August 22, and it will be an outpatient procedure – I will arrive in the morning, be under conscious sedation for the surgery, and go home in the afternoon.  I won’t be able to do any heavy lifting for two weeks, but I expect to be able to return to work the following Monday.

Radiation is definitely going to happen this time around.  When the oncologist called with the cancer news, he indicated that radiation was a sure thing, and I started worrying about what that meant in regards to my implant – dang it, the left one is the one I like!  The surgeon reassured me that the implant can stay in, and that although it will change the feel of it, it won’t explode, or boil dry, or anything like that – whew!  I had pictures of volcanoes running through my head. . .

The surgeon felt that chemo was pretty much guaranteed, because a recurrence is nearly always treated aggressively, and especially so since this cancer appears to be more aggressive itself.  I haven’t yet spoken to the oncologist, but even though I don’t *want* to go through chemo again (hey, my hair is already in major ‘fro territory – a second round of chemo might turn it into barbed-wire spiky steel-wool curliques), if there’s the smallest likelihood that it will help me beat this, then I absolutely will insist on it.  Chemo goes away; dead doesn’t.

Oh yeah – I don’t have tuberculosis.




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