Friday, December 30, 2011

What Doctors Should Do

Diamonds would work too

(Click to enlarge)

Thursday, December 29, 2011

***Final Report***

Have you ever noticed that radiologists can't write?  I have read enough radiology reports in my life to know the difference between writing medically and plain old poor writing.  Radiologists either have so many reports to do that in their haste they make grammatical and word choice errors - or they purely can't write.

I'd love to see a Christmas newsletter from one of these guys:

"Insofar as Christmas went, it was a freely-flowing event, which is probably due to the unremarkable nature of the people incurred.  The weather was of minimal hazy density, and winter structures intact.  Facial rictus may represent Christmas cheer."

Anyway, I got excellent news on my latest scan, and I'm still kind of in shock as I no longer expect good news and me to be in the same place.

My bad.

I wanted to have my results sent to my oncologist, since the Infectious Disease Specialist, who ordered my scan "STAT," promptly went on vacation and was not available to go over it with me.  I had my Wednesday herceptin/doctor appointment yesterday, so with the help of my Case Manager, I got the paperwork sent to my "Onc" so he could go over it with me.  HIPPA does not make things easy.

I sat down with my doctor who read it in the exam room and went over the salient points with me.  He said I had some thickening in the wall of the colon but it is resolving well.  I'm healing.  I asked him if the thickening was causing the pain and he said "probably."  He said that there is fluid in my right lung but that he's not worried about it.  He thinks it may be leftover from the surgery, and it doesn't appear that cancer has gotten into my lungs, which would have alarmed me had I even considered it.  He did say they only imaged the bottom of the lungs, but I told him I'm not having any symptoms and didn't even know there was fluid in my lungs. I know breast cancer spreads to lungs but I don't think it has -  he doesn't either; he said it would have grown big by now.

I did say I can't cough because my colon hurts too much.  He didn't respond - maybe it's not that kind of fluid.

The most exciting thing he said - and I wish I could remember his exact wording - was, "There are no signs of cancer in your liver."  OR, he said, "There are no new signs of cancer in your liver" OR "Your liver looks good, no cancer."   I was very excited by my initial interpretation (no cancer period) and said that was a great relief since it had been so long since I'd been able to do chemo. I'd have expected to have a liver full of cancer again, and was thrilled I didn't.   He didn't dissuade me from my excitement so I assume my interpretation is correct.  Maybe they cured me after all, even with this setback.

His main concern is my weight.  He said at my appointment right before Thanksgiving I weighed 105, and now I'm 90.  A significant weight loss, yes.   He was concerned that if something "put me down" that I had no fat at all as protection, and I would get bedsores.

I thought that was a funny, if a typical, thing to worry about. People in the medical profession seem unduly concerned about bedsores.  When I was in the hospital I had to have regular bedsore checks; it was mentioned a lot by everybody, and they kept bringing me a foul-smelling creme that would help prevent them.  (Really, why can't they get a contract with Bath and Body Shop or Origins or some company that makes a  less industrial smelling creme - then maybe we'd use their bed sore preventatives).  I guess they are overly worried because it's something they get sued over, but maybe it's more dangerous than I would have expected.

Having no fear of bedsores at my age, but having a great fear of c-diff,  I told the doctor that we'd have to hope nothing would put me down for a while.  I told him I realized I was too thin, and I wanted to gain weight but eating makes me nauseous.  He suggested I try a compezine before mealtime.   If you look at what you are allowed to eat with colitis, it is exactly the opposite of the way I normally eat.  I am a fruit, veggie, high fiber girl, and those are not things I can eat right now without causing great intestinal pain.  So, not only do I have to eat carefully, I have to change my entire diet.  It does make me not want to eat too but I'll have to try harder.

I asked when I could start chemo again, and he said I'd know when I felt healthy enough.  He made an appointment for a month from now, so my goal is to somehow recover by then.  I need to gain at least five pounds, have this pain gone, not be nauseated when I eat and regain my physical strength. (ie., be able to go to Macy's and open their glass door.)

Anyway, out of all the myriad things that could go wrong with me, and that have gone wrong with me, being told I'm ten pounds underweight is about the best news I could have possibly heard.

I'll definitely be celebrating the New Year, even if it's with plain mashed potatoes and water.

So, here is the medical report.  I will mark in bold a confusing part.

FINDINGS ABDOMEN:  There is a new small freely flowing left basal pleural effusion.  There is minimal hazy density in the posterior aspect of the right lung base which is thought to be atelectasis rather than pneumonia.  The lung bases are otherwise clear as insofar visualized.  There are no definite pulmonary or pleural-based nodules or masses seen. What is seen of the heart is unremarkable. (Edit:  I would disagree with that statement; I have quite a remarkable heart.)  What appear to be right breast prosthesis and left breast implant are grossly intact appearing. (Edit: I would agree with the "grossly intact" statement; had he said grotesquely it might have been more accurate.)  What little is seen of breast tissues is unremarkable.  (Again, I agree.)

Liver and spleen are homogeneous without focal mass or enlargement.  (No mass!  Great... until you read the end, where it gets confusing.)  The patient has had resection of much of the left lobe of the liver apparently for neoplastic lesions in the interval between the current and August 2011 scans, and there is a linear band of low attenuation some 1.3 cm in diameter extending out obliquely through the anterior segment of the right lobe of the liver which is probably had treatment of a lesion in the central right lobe of the liver. (Edit:  this is where they did the ablation.)  When we look back at the scan of 08/08/11, there was a low attenuation roughly 2 cm in diameter area in the mid right lobe of the liver which has decreased to 1.5 cm.  There are no new liver masses or nodules identified. (Not knowing exactly what that meant, confused by the term "new" I decided that the area that was burned away in the ablation is now healing and is now 1.5 (or 1.3) cms. I found this sentence online that backs me up: "On CT scans, complete ablation is seen as a low-attenuation area devoid of enhancement or nodules, as described earlier.)

If you have a better idea, or you are a radiologist,  let me know.

Gallbladder, pancreas, adrenals, and kidneys are grossly unremarkable.  The same is true of GI, vascular, and skeletal structures in the abdomen except that there is a question of colitis with wall thickening seen in all of the loops of the colon.  Perhaps the patient is recovering from pseudomembraneous colitis.  I do not see any ascites or lymphadenopathy in the pelvis.

PELVIS:  Ureters and bladder, and uterus and adnexa (I have a body part called an adnexa?) are unremarkable appearing as are vascular and skeletal structures.  GI structures are notable for mild wall thickening throughout the colon which as discussed above might represent resolving pseudomembranous colitis.  There is no abscess or free intraperitoneal air.

In the interval between current and most recent comparison study, the patient has developed a small freely flowing right pleural effusion (didn't it say left in the first sentence?), apparent mild right lower lobe atelectasis, has apparently had treatment of central right liver nodule that has decreased in size from 2 cm to 1.5 cms (wait - it's a nodule now??? or I had treatment for a nodule and the space is 1.5 cms......) and has had resection of at least some of the left lobe of the liver.  There is no new metastatic breast cancer demonstrated in the abdomen or pelvis.

Mild pancolitis may represent resolving pseudomenbraneous colitis.  Clinical correlation recommended.

So, it appears to be almost great news, except for the mild ambiguity on the report about the area in my right lobe, no doubt caused by poor writing skills, and hopefully not poor interpretation skills on my end.  Until otherwise notified, I am choosing to believe there is no cancer and concentrate on healing my colitis.  Considering how I feel, the fact that it is healing is fantastic news; I fully expected to be told there was an abscess considering how much lower right quadrant pain I still have.  I guess it just takes time, and as we all know by now, patience is not my strong suit.

In any event.......

Happy Almost New Year!  Looks like you might have me around for 2012 after all!

Saturday, December 24, 2011

Merry Christmas 2011

STAT meant stat, and I had my CAT scan yesterday.  They were not done with me until after 5:00 pm, so I don't expect to hear from a doctor until Monday after the holiday.  I'd like to think this pain is just a part of a long healing process - - - but I don't really think that's true.

But, the good news is I am going to have the quiet Christmas I dreamed of a couple of weeks ago.  I'm not exactly healthy, but managed my Christmas shopping - thanks to Amazon Prime.  Everybody gets something from me, and the gifts are wrapped too!  While I can't stand up long enough to cook an elaborate meal, we can get a Honeybaked ham and side dishes.  Mostly, I will be able to see my children and my husband and have a nice time with them.  We'll open gifts, than play board games, listen to Christmas music and maybe drink hot cider and eat Christmas cookies.  What could be better?!

People have also been very good to me this year, and I have more thanks to give out than I can possibly manage.

May you and yours have a very Merry Christmas - STAT!

Thursday, December 22, 2011

It's not how sick you's who you know....

I have been trying to get an appointment with an infectious disease specialist since December 14th.  I even got my nurse case manager on it, to no avail.  Nobody was going to be able to see me until mid-January.

I happen to have an acquaintance who is a physician, as is her husband.  It's the kind of relationship brought about by kids - our children are friends, so we see each other at birthday parties, volunteering at school, field trips, etc.  We are very friendly but not good friends; she's been very busy working, as have I, and except for our children (who are now both A+ students in a rigorous IB program), we are in different social circles.

Another friend who knows both of us told me I should tap her as a resource to get seen quicker.

Now, normally I'm not shy, and would do that.  I've done it with different people in other capacities.  But, she is going through something worse than I'm going through - her son - my son's friend since 3rd grade - has a serious disease and spends a lot of time in the hospital.  So, of course I know she has other things on her mind, and no way am I going to bother her.

Yesterday though, she called me.  She'd heard about my situation and wanted to help.   30 minutes after the phone call, I had an appointment with a specialist - for this morning.

I just got home.

I'm not bitter, this is the world we live in.  It isn't what you know/how sick you are.  Who you know is the most important thing in any endeavor.

Anyway, the doctor said several interesting things.  First, in his 20 years of practice, he had never seen a case of c-diff as bad as mine where the person didn't end up losing their colon or their life (or both).  He looked at me in amazement.  I was the worst he'd ever seen.

He said my gallbladder was the size of a melon on the hospital scans.  (I don't know what that means).

He also is concerned that I am still not well and thinks I possibly have a bowel perforation and/or abscess.

So, it's not over yet.

They are arranging for another abdominal CT scan, STAT.

STAT, I'm sure, means sometime after the holidays when folks get around to it.

He apologized for my having to have more radiation.  It was my turn to look at him in amazement.  I said, "Oh, don't worry, the cancer will get me long before radiation does."

I asked him what would be the "cure" for a perforation or abscess and he said they would put tubes in to drain it, and it didn't necessarily mean surgery, which eased my mind a bit.  I've been living in fear of shitting into a bag for over a month now, and I apologize to any of you readers who have stomas.  I just don't think I could do it.

Of course, that isn't true, is it?  The human capacity for putting up with what we thought we couldn't knows no end.  I imagine if I had to have a stoma, I would handle it as I did everything else - probably with a lot of  poop jokes.

He also said c-diff comes back in 7 days, "like clockwork."  He wants me to finish my vancomycin, (last one today) and then, just ..... wait.

7 days from now is the 29th.  He said, "that'll get you through the holidays."

That frightens me beyond measure.  I know for a fact I won't survive another bout of c-diff like I had before.  And, the doctor seemed pretty amazed I survived it the first time.  Unfortunately, I can't live on antibiotics forever so I have to stop.

But, I have refills and I'm refilling them.  At the slightest change - a loose BM, a new pain, a funny feeling,  I'm starting up again.   The fear of c-diff is a lot stronger than any doctor's opinion, and there is still no certainty that I am over it.  If my bowel is, indeed, perforated, than it seems like stopping the antibiotics would be a bad idea.  But, I don't have an MD so I will trust what he says.

For now.

Monday, December 19, 2011

c-Diff - Update

Most people recover from C-Diff in 3 to 10 days.  As you all know by now, I am not most people.  It has been very disheartening being sick as long as I have been - since Thanksgiving - but last weekend, I saw an uptick in my health and now I believe I am on a (very long) road to recovery.

My life, since I got out of the hospital on December 3rd has been this:

1.  Mornings about 9:30:  Painfully and oh, oh so slowly, I get out of bed.  My colon hurts, and is swollen, and I am carrying a 9 months pregnant-sized belly around.  My feet were also swollen and I weighed 118 pounds out of the hospital - 18 pounds more than when I went in, and that was before constant diarrhea and  9 days of no eating, so I'm clearly extremely bloated. Sitting up is like climbing a mountain with broken ribs, and trying to put my feet on the floor is like finding a crevice and having to push around to find solid ground.

For a while, I decided to sleep on the couch as I could not breathe lying down in bed.  Then I got out a sloped wedge pillow I had and was able to sleep propped up. My husband wanted me next to him, maybe to keep an eye on me.

2. After the difficulty of getting out of bed, I forced myself to sit at the dining table and have a half cup of decaf coffee and read the paper.  This has been my routine for 18 years, and I wanted that normality.  This was very painful for several reasons: sitting up straight is extraordinarily difficult on whatever was going on inside with my colon;  I'd lost a significant amount of weight and my hard wooden chairs are painful on my butt/back bones, and I have been experiencing neurological problems, so each turn of the head, or eyes, or slight movement, sends electrical shocks down my body that I can actually hear.  It sounds like the whooshing wind.   I force myself to eat a Fage yogurt and read for as long as I can.

3.  Hobble to the bathroom and release toxins.

Many times.

4.  Wash hands and retrieve (slowly and gently) my iPhone and iPad, and head (slowly, hunched, and shuffling) toward the couch.  I had it set up with a small table next to it, a 10 foot Apple charger, a glass of water, pain meds, several pillows for propping, and a blankie.  There I would spend the remainder of the day - until bedtime.   My habit has been to watch documentaries on Netflix (saw some good ones too) and then read for a while with my iPad kindle app, then watch some more documentaries.  I'm reading a book a day, and I'm a picky reader.  Ten bucks a day is a lot to spend, so I'm trying to find more movies or books that last longer.  (Suggestions welcome but I am looking for good literature or interesting non-fiction - I like memoirs of non-famous people.  I don't like mysteries or popular formulaic fiction - and definitely not science fiction.)

5.  Take a bath.  (Showers require too much standing up but I have a removable showerhead for washing hair.)

Up until last weekend, that was all I could do. I didn't want to talk on the phone - or in person - because breathing was difficult.  Moving was difficult.  Living was difficult.  I couldn't answer email (I'm sorry) as it required more energy or thought than I could muster.)  I felt that my colon was still in danger of rupture.  I was very, very sick in a way I had not been before and in a way I find hard to describe. "Just snap out of it!"   Impossible.

My husband stayed home for a week from work, because I couldn't stand long enough to make myself some soup, and it hurt terribly to get more water or move around. I was extremely tired, slightly depressed and feeling like I was never going to come out of this disease.  The second week, my husband had to go back to work so I was alone.  By then, I could stand long enough to make soup and mostly, I didn't think I would die right then so it was okay for him to be gone all day. But, it was lonely and I thought this bed to couch existence would be my life until cancer got me.

We had no Christmas tree  - my family didn't want to get it without me.  I understand that,  but it was a burden on me to know that without me, they wouldn't celebrate Christmas.  We have all decided that after the holidays (when they are on sale) we will get an artificial tree.  As much as we love real trees, there may be times in the future when I can't leave the house again and they need to celebrate the holiday.  We can still get a real tree and choose the best as a family but if I'm sick, we can pull down the fake one.

And, you'll note my optimism in planning to be around for another Christmas. But, I no longer feel that is a certainty.

Eventually, the diarrhea slowed.  I was able to get around a bit better.  I could do a load of laundry, walk to the kitchen.  The bad pain went from all over my midsection to just the right lower quadrant.  It feels a lot like the pain you get when you run too hard and get that stitch, only mine doesn't go away.  The rest of my abdomen feels like I did a hundred sit-ups.

All the water weight from the hospital is gone and I weigh 90 pounds.  My stomach is very deformed but I'm not 9 months pregnant anymore - now it's like like I have an alien baby - a big swelling here, a concave area there, a tail-sized length over here.  The diarrhea has slowed to just a few times a day.

Two days ago, I got dressed for the first time.

This Saturday, I was able to walk long enough to get a Christmas tree.  I was nauseated when I got home, but I did it.  We decorated it yesterday.

Thank goodness for Amazon Prime.  I have almost all my Christmas shopping done.  I have to go to one store, which will be an adventure and I'm not sure I can.

I'm still trying to get an appointment with a specialist, although they are saying 3 weeks, which is completely unacceptable.  I saw a Dr. Nassir in the hospital and some sort of protocol means I have to see him again and he's not available.  I don't understand this because the woman on the phone told me there were 40 infectious disease specialists in their practice, and I don't care which one I see.  I saw Nassir in the hospital for maybe a minute and he only directed my care until the hospitalist took over.   I no longer feel like my colon is in danger of rupturing anymore but I am still taking vancomycin (my PCP kindly gave me six refills) and I want to know if I can stop taking it, what to do if the c-diff comes back, how long I'll be in this debilitated state, why it has taken me weeks to recover when others only take days, when I can eat a normal diet and when I can start chemo.  I told the appointment-setting woman on the phone to please call me Monday and if she couldn't get me an appointment in a reasonable time I'd go elsewhere.

So far, it's almost 1:00 and no call.

I've had a home health nurse calling me, and they said they were going to send somebody out, but they changed their minds.  That's fine with me as I don't know what a nurse could do for me, but I just called her to see if she can help me get in to see a doctor quicker.

This has been an awful disease and it's frightening being as sick as I was, and I don't think I'll ever be able to relate my hospital experience online - it was the worst thing I've ever gone through.  Having sepsis and never-ending diarrhea is not the way I want to go out, I can tell you that much.  I'm glad I'm recovering but I have had to tell my work I won't be back when I was supposed to in January,  and now my money will run out.  My job is only protected for a few more months and I'm not sure I'll make it back.

And, I've had to miss chemo, which makes me very afraid the surgery I had to remove my liver was for nothing.  We all know that metastatic cancer means there are cancer cells in other places, and without chemo to kill it I may end up right where I started, only this time without the hope of surgery.

But, I'm stepping on the path to recovery, however temporarily,  and the flowers alongside that path are lovely.   I'm able to function now, although at a very reduced ability, but it's better than I was two weeks ago, and I hope two weeks from now I'll have even more recovery behind me.  I'm so thin no clothes fit and I look scary but I hope to gain that weight back soon.

This disease left me with the knowledge that I'm very vulnerable.  I thought, in a cavalier way, that the liver resection surgery would surely give me years and years and I'd eluded death, at least in the short term.  I thought I might see my son go to college, my other son get married, maybe even see a grandchild.    I know now that isn't close to a guarantee, nor is it likely.  The life expectancy for a person with metastatic breast cancer to the liver is 2 years, and it is no longer impossible to believe that I will be gone next year.  It's made me sad and while I have not given up the fight, I know know there are powers beyond your will, mind and desire that are stronger than you are.

C-diff may not kill me in the conventional way, but since I can't do chemo, if I die of cancer in the next year, it will certainly have played a role.

Wednesday, December 7, 2011


This will be short but I finally can sit up and write a quick blog post, so I will let you all know what is going on.

Thanksgiving evening I took a neupogen shot, which gave me a bad reaction as it often does.  I spent that night in severe agony, feeling like I was delivering a baby out of my spinal canal.  The pain eased up by the next day but I never recovered, I stayed in bed nearly unconscious and sick for two days.  Saturday night, diarrhea started and I checked my temperature: 101.7.  I'm supposed to call my oncologist anytime my fever goes above 100.5 so I called, and they told me I probably had neutropenic fever and to get to the ER and they would call to have me admitted.

I can't possibly describe what I went through from that point on.  Hellish would be an understatment and the worst experience of my life would not.  I didn't have neutropenic fever, I had a SuperBug infection called C-Diff.  (Clostridium difficile)   By the time I got there, I was in a bad way.  I had fulminent c-diff colitis and was septic.   I spent two nightmarish days in ICU with a dysentery-like diarrhea, pain,, and sickness like I've never felt before.  My heart rate was 160 and my blood pressure sky high.   They gave me antibiotics.

The antibiotic started to work, so they moved me to a ward, on IV flagyl and vancomycin.  They told me they thought they would have to take my entire colon out, although I was in such bad shape they didn't want to operate on me, and in looking it up, survival is not good for that operation.

On about Day Four the surgical team decided I'd recovered enough that my colon was safe, and I was so relieved.  But, right at that point is where my recovery stopped.  And, my belly started growing.  On the seventh day they let me out of the hopsital with a prescription for vancomycin and I went home.

I've been home since Friday, and today is Wednesday.  At first, I was overloaded with IV fluids. My legs were swollen from thigh to ankle and they looked like elephant trucks.  My stomach was also very bloated, and I also thought that was from IV fluids.  Made it very hard to breath.  But, now that the IV fluids are gone, my stomach is still horribly distended.  I can do only the most basic self-care; my husband had to take the week off to help me.  I still have diarrhea about 8 times a day and I don't seem to be improving.

My last meal was Thanksgiving - on that date I weighed about 100 pounds.  When I got out of the hospital that first day, after non-stop diarrhea and no food, I weighed 118.  Now I weigh 110.

I saw my Primary Care Physician yesterday and he said that if I wasn't better in 24 hours, he wanted to re-admit me to the hospital.  My vitals are fine but the belly distension is worrisome.  I'm not better but I made an appointment with my oncologist for tomorrow, and I'll see what he says.  I know he'll fight the bowel removal and I want him in charge of my care.  So, between these two doctors, I'll likely be back in the hospital this weekend but hopefully they will have a trick or two up their sleeve to get me into a real recovery.

I have not been able to lift anything heavier than an iPad or iPhone and can't update the blog from those devices.  I tried to give twitter updates and will continue to do that when I can't post.

I know there have been many worried thoughts about me, many prayers sent up, and well-wishes sent my way.

Thank you for that, and keep them up for I'm not out of the woods yet.  All I want now is a nice, simple Christmas with my family without the fear of losing my colon hanging over my head!