It's been a rough week

and I hope the coming week is much better!

I had my first chemotherapy session on Tuesday. The room where they do the chemo has about a dozen recliners, each with a comforter, a nurses' station, and a wall of snacks--potato chips, nuts, cookies, granola bars, drinks, and things like Ensure. As expected, I snoozed in a comfy recliner while they ran toxic chemicals into my veins. I did have a snack when I woke up at one point, but resisted most temptation. They gave me the two drugs--Methotrexate and 5FU, along with an anti-nausea drug and a steroid. I also had blood drawn for the genetic testing--keep your fingers crossed for me.

After the treatment, I just felt weird--not bad, just weird. Went home, had dinner, went to bed.

Weds I got up and went into the office for the first time in about 2 months, and got lots and lots of hugs, including one from my boss. That last one surprised me, as he's not a real demonstrative guy, and so it was especially nice. Also got flowers, and a few smooches, and felt like I'd really been missed. Also got pulled into immediate crises, which I sort of expected. I was stupid, stayed too late, only got 7 hours sleep Tues night (which is way more than usual, but not enough right now). Went in mid-afternoon on Weds, as I had an evening City Council hearing. Went home after that, crashed and, when I woke up on Friday morning, said "I'm not going anywhere." Called off, and spent the entire day sleeping--I could NOT wake up, no matter what.

Part of the tired was taking the "antidote" pills. I finished my chemo at 4:40 PM Tuesday, and so at 4:40 PM Weds had to start taking pills every six hours. Staying up for the 10:20 PM dose was hard, but once I had stayed up that late it was tough to get to sleep. Then waking up for the 4:40 AM dose sucked, and again for the 10:40 AM dose . . . struggled to stay awake for the 10:40 PM (and last) dose and again had trouble getting to sleep afterwards. I'll figure this out. Really. Probably.

At 4:40 PM Friday, exactly 72 hours after my chemo, the nausea hit. Damn. I thought I'd eluded it. For me, nausea is worse than pain. I can distract myself more easily from pain, and at least I can eat comfort food! I took the pills my doc gave me-both kinds--and I've had some brief respite since Friday afternoon, but never for more than an hour. I'm calling tomorrow to see if there's another drug they can try. I've not felt really bad, just that mild, persistent yuckiness. So, I've spent a lot of the weekend feeling yucky, sleeping, and oddly enough, cooking. I really hope this clears up soon, since I fly to Pittsburgh on Weds for my Dad's 92nd birthday.

Tomorrow I see my naturopath, and hope he can help with the nausea too. I also see my radiation oncologist for follow-up, and I may ask for another ultrasound--I think I've got some more fluid in my breast, and I really don't want to fly with it!

Wish me luck and, as always, I'll keep you posted!

A long-overdue update

The past few weeks have been an energy roller-coaster, which is why I think about posting but haven't. But I'm doing pretty well . . .

I think I expected to snap back sooner, but having two surgeries wiped me out more than I expected. For the past few weeks I'll have a good couple of days, think "I'm going back back to work next week" and then have a really bad few days and say "Not quite yet." The last week has been ok, but I was having increasing pain in my breast, to the point where it woke me up. I called my surgeon Friday, and her assistant told me I might have fluid accumulating where the balloon was (the one used for the radiation). I went in, the assistant did an exam, and I wound up in the Breast Health Center (where they did my original biopsy and some of my pre-op stuff), where they used ultrasound to locate the area. Using two big honkin' syringes, they pulled about half a cup of fluid out of my poor breast. Gross, yes--but I immediately felt much better! The area is still sore from the needles, but nothing like before. I'll find out early next week (after the lab work) if I have to go back on antibiotics.

I saw my oncologist last week to talk about several things. First, to set up the chemotherapy. I have my first session Tuesday, and then every two weeks after. I'll spend two hours in a recliner hooked up to an IV--I expect it will be nap time. She said I won't lose my hair, and probably won't have nausea--but she gave me prescriptions for two different anti-nausea meds. I'm kinda nervous, so keep your fingers crossed for me.

When I posted last, I said Dr. O was also going to put me on a bone-strengthening medication that helps fight cancer recurrence. Actually, what she was doing was asking me to participate in a study--there's some good evidence that high doses of some of the meds for osteoporosis also fight the recurrence of cancer. The study is looking at two different meds, and two different doses of one. The researchers sent me the info, and I was reading through it, thinking "fine, fine, fine" until I got to the section on possible side-effects. The info said they were very rare, but one of them is osteonecrosis of the jaw. Osteonecrosis is dead bone, and there is no treatment. When I saw the doc last week I told her that I didn't think I could participate because I had osteonecrosis in both of my knees, and we hadn't figured out what caused it--but I wound up with two artificial knees. She asked me twice if I was sure it was osteonecrosis, as she had never heard of it in the knees, or in someone relatively young. I told her that my orthopedist hadn't heard of it in someone under 70 either, but yes, I'm sure what it was. So no bone strengthener study for me.

Dr. Orwoll also agreed that I should get the genetic testing. Since I had to wait for pre-authorization from my insurance, I said I'd get it drawn at Good Sam (Dr. O is out at Portland Adventist). Then I get a call from Good Sam--I can't get the test done until I compile a detailed family history and go through a 2-1/2 hour counseling session! When I saw Dr. O last week, she told me they could do the test at her office--and they can do the test first, and then if I'm positive do the counseling. I'll get that drawn on Tuesday when I go for my chemo.

When I last posted, I was trying to figure out what to mix the powders from my naturopath with. He suggested fruit juice, but most fruit juice is too sweet for me. Then I remembered some concentrated black cherry juice I had. I mixed a glug of that with sparkling water, and it worked! I also found some pure cherry juice (not a concentrate) at the Farmers Market, and a glug of that works too. I think the potion has been really helping, along with eating lots of whole grains and mushrooms. I'm no longer having lots of stomach acid and other digestive problems. I see the naturopath again about a week after my first chemo session, and he may modify my routine then.

At this point, I'm planning on going back to work next week--I'm just waiting for the letter from the doc to arrive (I have to have medical approval to return to work). I'll probably be less than full time for a few weeks--especially the week after this, when I fly back east for my Dad's 92nd (!!!) birthday. Although there are some things about work that I don't miss at all, I really miss the people I work with!

So what's next? I go back to work in the next few days, I have my first chemo on Tuesday, and I take the "antidote" for the chemo starting Wednesday, including a middle-of-the-night dose Wednesday night. I hope no more fluid accumulates in my breast, and I hope I have the sense to stop moving when my energy runs out!

And, as always, I'll keep you posted.

Lots of news

Once again it's been a long since I've updated this blog, but I've been exhausted.  

In my last posting I wrote about the beginning of my radiation treatments.  Last week I had two treatments a day for four days; all went well.  I fell asleep during most of the treatments, and got a chair massage several of the days (yes!).  It was kinda weird--having to keep an eye on my watch all the time and organizing my life around the two-a-days, but well worth it.  Thursday afternoon they took the balloon out, gave me lots of hugs and sent me on my way.  I need to allow the spot where the tubes came through a little more time to heal, and then I'll be able to take, yes, oh my god, A SHOWER!!!!!!  I'm hoping for Tuesday . . . 

On Monday I went to see Dr. Ken Weizer, a naturopath.  Miriam Hecht sent me to him; he's a cancer survivor himself, and he's really smart.  He gave me several powders to mix into yogurt.  They'll help boost my immune system, and restore what's been knocked out by the stress and radiation--and chemo (more about that below).  I really like him.  Unfortunately, the powders total more than 2 Tablespoons, and don't dissolve in a cup of yogurt--which is about the max I can eat at a time.  I tried using warm milk with some coffee concentrate (heat to help dissolve the stuff, coffee to cover the taste).  I emailed Ken and he suggested fruit juice, so I'll try it with diluted juice--most is too sweet for me.  Wish me luck.  

He also told me to eat a bowl of whole grains every day, and half a cup of cooked mushrooms--any kind except white button.  I've been having fun with that, making lots of dishes that combine both (although I don't have to eat them together), and just learning about different grains.  Coincidentally, I bought "Whole Grains for Busy People" just before my cruise, and it's a pretty cool cookbook. 

On Tuesday I saw my oncologist, and there is great news.  Based on the DNA testing of my tumor and all the other info, my chances of recurrence are pretty damned small.  Not zero, but small.  Dr. Orwoll talked to be about chemo, the pros and cons.  Because my numbers are so good, she couldn't recommend either way, just laid out the information for me and insisted I sleep on it.  It would change my odds by a few percentage points.  

 I slept on it and took two naps--and decided to have the chemo.  It's fairly benign (methotrexate and 5FU), and few people have side effects.  I just don't want to find more cancer in 5 years and say "Damn!  Shoulda had that chemo!"  I'm going to wait a little before I start to give myself time to get a little stronger.  Two surgeries plus radiation really wiped me out.  

Once I start the chemo, I will spend two hours every other week hooked up to an IV.  Then, 24 hours after the chemo, I will have to take a special form of folic acid every six hours for 24 hours--including waking up in the middle of the night for that dose.  Basically, the chemo stops cells from reproducing, and the folic acid restarts them.  During the first 24 hours, any cells that are cancer will die without reproducing, but most normal cells will be OK.  Treatment will be for 6 months, which means about a dozen treatments.  

Dr. Orwoll is also going to put me on a bone-strengthening medication that helps fight cancer recurrence, an estrogen blocker (Tamoxifen or another one, depending on tests), and extra Vitamin D and calcium.  She's also going to run some genetic tests looking for some markers (BRCA-1 and -2).  

So what's next?  First, I figure out a potion that will work for the powders my naturopath gave me.  Then I talk with my surgeon about when I go back to work,  schedule my chemo, set up a follow-up appointment with my naturopath, and see if I can manage to sign up for a yoga class.  And, of course, I'll keep you posted.  

(And in case you were wondering about that picture . . .it's a device that plugs into the USB port of your computer and heats a pad; the pad is placed in your bra to keep your breasts warm while working on the computer.)

I'm simply raaaaaadiant!

Sorry it's been a while since I posted, but it's hard to stay awake.  Had my re-do surgery on Monday, and it went very well.  Post-op I had very little pain, and started feeling pretty good pretty fast.  Once again, I sing the praises of all the staff, from the nurses to the guy who rolled me around in a wheelchair.  Got pathology results yesterday, and Dr. Johnson got it all this time (whew).  I admit that I had a little voice in the back of my brain whispering "mastectomy," but the voice has shut now.  Carolyn brought me home on Tuesday, and I spent the rest of the day snoozing with the cat on top of me.  

Wednesday was my day off, and I did more snoozing.  Thursday, with a great sense of deja vu all over again I took painkillers and anti-anxiety pills and headed over to Good Sam to have my balloons swapped.  Check out my last post if you want details.  

One of the fringe benefits of going to Good Sam for my radiation is that, most days, they have a really good massage therapist there.  She does 15-minute chair massage FOR FREE!!!  YES!!  She's also used to working with cancer patients, so she can arrange things so there's no pressure on sore spots, etc.  I got my 15 minutes, and she is really good.  No, it wasn't the same as having a full-on deep-tissue table massage (nobody is better than Betsy Robertson), but it was pretty damned good, especially since I had a crick in my neck that she got rid of.  

The staff at the Radiation Oncology center at Good Sam are awesome.  We crack each other up with bad jokes, and they also make me feel really cared for.  They always make sure I'm comfortable (or as comfortable as possible), and they make sure I'm not too freaked out by some of the machinery, procedures, etc.  They're so matter-of-fact about all this that it doesn't seem weird to be dealing with balloons in my boob, or having a machine insert a radiation-tipped wire into me.  

I love them.  

There was a woman there who (I think) was supposed to help me deal with the stress of all this--remind me to breathe and all that.  She held my hand, which was nice, but the regular staff did such a good job of making me feel relaxed that (nothing personal) we didn't really need her.  Anyway, Dr. Lee did the swap, and there was one moment of sorta tugging, but that was it--no real pain or problems.  They wrapped me up to send me home.  

One of the nurses asked who my ride was, and I said that I had walked over and would be walking home.  Given the influence of the pre-procedure drugs, she worried--despite my assurances that I had walked home at night much more inebriated than this.  She made me promise to call her when I got home so she would know I was safe!  Of course, on my way home I ran into three friends (including Jeff Joslin) and stopped in at City Market NW for sandwiches, so it took me about an hour to make it--I had to tell my friends that I couldn't hang out because I had worried nurses waiting for my call.  Funny, but very sweet too. 

Home, ate awesome sandwich from City Market, more snoozing with cat on top.  

Today--Friday--walked over to Good Sam at 8 in the morning (oh yuck) to get my balloon scanned and have my first radiation treatment.  It was weird, but I didn't feel anything--I fell asleep instead.  Had loads of sushi with my friend Robin (wasabi kills cancer! yes!), a short nap, and walked back to Good Sam for radiation treatment #2.  Another nap during the treatment, then walked home.  Met my old friend Tom for Happy Hour (I admit it: half of a cocktail totally snookered me), then home for yes, another nap.  

I get the weekend off, but have a pretty busy schedule next week.  In addition to two radiation treatments a day Monday through Thursday, I see a naturopath on Monday.  He's part of a group at St. V's, and Miriam Hecht swears by him.  I'm hoping he can help me bolster my immune system--the surgery, radiation, and chemo are all taking a toll.  Arthritis is an auto-immune disease too, so I wouldn't mind an extra boost.  I'm also dealing with a few other changes: I was on birth control pills for years for my skin, and stopped when I was diagnosed.  Boom--menopause!  The biggest prob so far is hot flashes, but those are pretty bad. 

I see my oncologist on Tuesday and get my next big chunk of news.  She left me a voicemail while I was in the hospital that the results of my oncotyping were back--that's the DNA analysis of the tumor, and will give us guidance on the chemotherapy.  Her message was that the score was great, and I needed to make an appointment.  I have no idea what having a great score means--less chemo?  less drastic chemo?  no chemo?  But I'll find out on Tuesday . . . I'm just happy to have some more good news.    

I'm thinking about starting to meditate or do yoga.  Not sure if either is a good match for me, or if I'll have it together to carry through.  I think Good Sam has a special yoga program for cancer survivors, although I'm not sure.  I know they also have a meditation program, but I'm going to the best--I'm asking my friend Clark about it--he's a Buddhist monk.  

So that's it for now--and I'll keep you posted!

Almost ready . . .

Monday morning is coming fast--I will be going over to Good Sam then for a "marginal revision."  In other words, Dr. Johnson will go in and get the last little bits of cancer that didn't get taken out last time.  The procedure will be a lot easier than the first time: a lot of the pre-op things done to identify my sentinel nodes, etc. won't have to be repeated.  Since some of those things involved needles and sensitive spots, I'm very pleased about that.  

Dr. J will again insert a balloon again for the radiation treatment.  I'll stay overnight, and Tuesday morning will get a scan to be sure the balloon is positioned correctly for radiation--that it's far enough away from both my skin and the chest wall.  They'll wrap me up and Carolyn Olson will give me a ride home.  

Wednesday I have the day off.  

Thursday around lunchtime I take some meds for anxiety and pain, and go to the radiation oncology area at Good Sam.  I will once again be having a sense of deja vu all over again, as this is where I was on the morning of May 1.  What they were supposed to do then--before the oncology results came back to tell us I needed more surgery--was The Swap of The Balloons.  I described it this way then:

"This is a little ookey--and the reason for the anxiety and pain meds.  Dr. Lee, my radiation oncologist, will take out the balloon Dr. Johnson put in my breast and insert another one.  The one Dr. J put in was just a placeholder; the one Dr. L will insert is designed for the radiation treatments.  It's a balloon (that will be filled with saline) and an inner tube that's like a straw with one end sealed.  The inner tube is dry and is where they insert a wire with radioactive "seeds."  Then I'll have my first radiation treatment: a machine inserts the wire with the seeds and, 20 minutes later, takes it out.  I go home. . . .Most people don't have any side effects from this type of radiation because it is so localized and the treatment time is so brief.  It is a good idea for me to make sure I get plenty of rest and good food during the treatment--but that would be a good idea for the recovery from the surgery too, so . . . "

We'll definitely do the Balloon Swap, but may hold off on the first treatment if the results aren't back from Pathology.  Either way, I return at 9 am on Friday for a treatment, and again at 3.  This is much better than the first schedule, which had me showing up at 8 am.  I get the weekend off (the 16th and 17th), and go for radiation treatments twice a day Monday through Thursday.  At the last appointment Thursday, they take the balloon out and I'm done with radiation.  

The DNA in my tumor is being analyzed as I write, and we should have the results back during my week of radiation.  The results will tell us what kind of chemo I'll be getting.  Several friends who have had chemo report that they had few if any side-effects, so I've got my fingers crossed.  Also, on the advice of my friend Miriam Hecht, I'm going to see a naturopath.  He's part of a group that works out of Providence/St. Vincent's called Integrative Medicine.  Miriam said he helped her a lot, and I'm hoping he can help me with both the cancer (and any side effects of the treatments) and some of my other conditions.  

So send good thoughts my way Monday morning, and feel free to give me a call Tuesday evening or anytime after.  

As always, I'll keep you posted.

Once again, plans change

Got up this morning, ate, took a sponge bath (I'm not allowed to shower until the bandages are off my breast), and, as directed by my radiation oncologis, took some painkillers and anti-anxiety pills.  Went over to the RO dept at Good Sam at 8.  The plan was that they would take out the balloon Dr. Johnson put in during surgery, replace it with one they can use for radiation therapy, and give me my first radiation treatment.  When I get there they don't have the final report yet from pathology.  

They suggest I kill a few hours--and then they have an inspiration and send me to Green Gables House.  It's this sweet little house on the corner of NW 22nd and Northrup for patients with cancer or families of cancer patients.  Patients or famiies can stay there during treatment at Good Sam, or if they need a place to hang for a few hours.  It's cute from the outside, and really comfy and welcoming inside.  Anyway, I pick the little room with a TV and two big recliners where I sleep for a few hours, watch a little of "The View" (my guilty pleasure) and get the call to go back to the RO Dept.  

I get back to RO, where they have the final reports from pathology.  Good news:  The sentinel nodes are still testing negative, so I can put that worry to bed.  Bad news: The lumpectomy didn't get all the cancer, so I have to do it again, and we can't start radiation.  Damn damn damn.  

So they take out the balloon, wrap me in my tube-top again, and send me off.  I go to Dr. Johnson's office, where they tell me I'm scheduled for surgery on Monday, May 11 in mid-morning.  She doesn't usually do surgery on Mondays, but she will for me, which is awesome.  While I would rather not have to wait a week, she's out of town the early part of next week (the week of the 4th), and her schedule for the rest of the week is already overbooked.  

So what now?  I'm not ready to go back to work yet (still recovering from the surgery), so I guess I'll spend next week recovering and creaking--I have to go off of my arthritis meds again before the surgery because they increase bleeding.  I don't know the detailed schedule yet.  They'll probably keep me overnight again, but I don't know how soon they can start radiation after the surgery.  Meanwhile, the lab is still working on the DNA analysis of the tumor, so we'll know what chemo I should get by the end of next week or so.  

As always, I'll keep you posted!

I now have a slightly less hefty left breast

Went to the hospital on Tuesay, the 28th; they ran me through various things, including a bunch of tests and injections, took me into the operating room and knocked me out.  When I woke up I was in a room on the 6th floor with lots of nice nurses.  I was still pretty dopey from the anesthesia, and they gave me stuff whenever I was in pain.  When I woke up enough to eat they found odds'n'ends for me, since it was about 9 PM.  Half an egg-salad sandwich, peanut butter toast, chicken-noodle soup.  Heavenly.  

Woke up Weds AM, ate a boring breakfast.  See Dr. Johnson, who tells me everything went great, and that the preliminary results on the sentinel nodes are negative.  That means the cancer hasn't spread, which is great--although we won't have the final results until Friday.  I have a small fever, so they make me walk laps around the 6th floor for 20 minutes.  More boredom, but the fever is down.

Then they started working on how to get me out of there.  New policy at Good Sam--they want to get people out by 11. I had to have a special scan before I left.  Plan A was to send me to the Radiation Oncology Dept for the scan, and discharge me from there.  They pack me up and send me and my stuff off in a wheelchair for the scan.  At the RO Dept they do the scan, which is to make sure that the balloon they'll be using for the radiation is in the right place--it has to be far enough away from the chest wall and the outer skin.  The scan is fine (yay) and then they put this special dressing on my left breast--and give me a tube top!  Seriously, they have this super-stretchy puckered cloth, just like they use for tube tops, and they wrap it around me, securing it with velcro.  It's a lovely lilac shade.  Then they clip two straps on so it's a tube top with straps!  The fabric is pretty tight, and holds the dressing in place.  It also prevents my boobs from moving very much, which is a good thing, since my left one is pretty damned sore.  

They're ready to send me home, but my friend Shannon isn't available yet to pick me up.  They're going to wheel me back to the 6th floor, but need to do some paperwork.  The nurse tells Lee (the guy who's pushing me around in the wheelchair) to go get a cup of coffee.  Joking, I say "And one for me too!"  Lee comes back with a cup for me and I almost start crying (it's the drugs, it's the drugs).  We drink coffee and talk about kind people.  He knew Dr. Foster too, and agrees with all of us who know him about what a great man he is.  

Finally they wheel me back to the 6th floor, where I hang out and read until Shannon gets out of her meeting and takes me home.  It's really good to see my cat and sit on my own couch.  Shannon brings me some homemade chicken soup that is totally delish.  She makes the stock with some veggies, but then uses fresh ones to make the soup--so the veggies are really crisp and fresh-tasting.  Also, the potatoes in it are super yummy.  I devour half of it along with a big chunk of bread from Grand Central and some home-made chocolate chip cookies (also delish).  Then I go to sleep on the couch with the cat.  That last sentence pretty much describes the rest of Wednesday and Thursday.  Thursday also includes a walk to Freddy's to drop off prescriptions and get in the 20 minutes of walking the docs want.  

Friday is balloon day--get the temporary one out, the "real" one in, and get my first two radiation treatments.  Also the final results from pathology . . .