New Chemo Update

Sorry I’ve been so lax with my reports, but between all that’s going on plus the holidays I just didn’t take the time.
Think I left off with Doxil. I had three rounds and then another PET scan. More bad news. The cancer has metastasized slightly into the liver and right breast. I’d say Doxil was a complete failure.
This time frame brings us to the second week of December. Tracy surprised me with a trip to St. Lucia for a combo birthday and Christmas present!  The doctor said great...go! But...I want you to take a maintenance drug. So I started the same day with one called Letrozole. After 6 days, I knew something was wrong with me..I was irritable, impatient, unhappy and on top of all the personality changes, lost all my energy. I called the office, told them I was stopping the drug as I wasn’t about to go on a trip with the screaming memmies. They called back with another one to try two days before we left. We looked it up and it was far worse than Letrozole. So I said no. They were not happy.
At any rate, we left, had a wonderful trip, but some strange things began to happen. Swollen feet. And all my summer clothes I had tried on the week before no longer fit. By the time we got back on the second, I was so filled with fluid I looked pregnant. I had shortness of breath, back aches and couldn’t eat but tiny amount without feeling ill.
I called the doctor and he made an appointment today for me to have an abdominal tap. They removed 10 1/2 pounds of fluid!  All because I didn’t take the maintenance drug. But what would have been the point of being sick the entire two weeks I was away? At any rate, it was a delightful trip, the fluid is out and a new chemo procedure begins a Friday.
This time they are giving me a combination of Avastin and Gemzar. One is chemo, the other boosts your immune system. It’s timing is complicated and I’ll let you know what side effects I have.
One other thing, which disturbed both my daughter and I is that last Friday I had my mammogram appointment. They said the results were the same as other years. I said, that can’t be, the PET scan showed some invasion of cancer. So they asked to see the scan and I dropped it off the same afternoon. We should have the comparison results tomorrow. It’s upsetting to both of us that this did NOT show up in the mammogram and I even asked for a diagnostic mammogram plus ultrasound.

I’m sorry this is such a downer report starting out the new year, but am hoping and praying that one of these combos works. We are debating another opinion, but I hate to tell you many doctors feel it’s a waste of time to deal with someone my age. I’m sure we won’t be sent to anyone who feels that way, but we are discussing this with my internist tomorrow morning.

Poor Tracy, having to put up with all this when she should be back in NYC. I’m hoping the chemo goes well so she can leave Sunday. She’s my brick, my caretaker and my listener. I love her dearly.

The New Chemo

It’s been a while since I gave you an update. I’m afraid the news isn’t as good as I hoped. My CA125 test took a 13 point jump which pretty much means the chemo combination is not doing it’s work. So on Friday they are starting me on another, Doxil. This one is every 28 days instead of every 21.

However, before I get it, I have to have a Muga scan, which makes certain all is right with my heart, as this drug could cause problems.

Those of you with heart problems will know all about this, but for those who don’t, here’s what happens during a Muga scan: They inserted an IV line and withdrew some blood. I waited for 20 minutes while they took my blood and mixed it with a radioactive isotope ( sodium pertechnetate Tc 99m for those who care) and then reinjected it.

Took me to one of those rooms containing something similar to the PET or MRI machines, attached 4 electrodes to my chest and, after I told him my left arm can’t stay over my head, put the same elastic thing they used before to keep my arms next to my body. ( My left shoulder was injured years ago and movement in certain directions.....i.e. over my head ....is impossible) The scan took about 15 minutes or so. Then he moved the machine so it was over left side and told me I had to lift my arms over my head for another 15 minutes. My left shoulder was in excruciating pain for the entire thing, shaking even. Told him I don’t know how they got any decent pictures when I was shaking so hard, but he said it was OK. They removed the IV and that was it.

Thursday afternoon I got a call and all is well with my heart because we are to start Doxil tomorrow.

1st day:

Once again Jeni, the chemo nurse, started with Zofron for nausea, then Benadryl, then the Doxil, which is bright red. (She warned me my urine might be red.) It only took 2 1/2 hours. For the first time the Benadryl made me sleepy. I actually fell asleep for half hour or so. (On the other hand, I had two very early mornings in a row AND a lot of stress.) I took an hour nap this afternoon. Unusual. Also, a few light hot flashes, that's all. Then I was hit with an allergy attack, a pretty bad one. I found some old sinus nightime, took them when I went to bed and when I woke up I was fine.

2nd day:
Felt pretty good, took a walk, did errands (with mask on), went to the grocery store with Tracy as son David is coming for dinner. The day and evening went well, felt fine.

3rd day:
Started out well, we're considering a beach day. The next three days are usually the worst, but so far, so good. Tracy said she heard the nurse say this drug kills everything. I must have been asleep as I didn't hear that.

Will report again after the the next chemo.

Last Chemo

Well, the 6 chemo series is over. So the PET scan is next. In the event you don't know anything about it, here's the description of what happened to me.

PET stands for positron emission tomography.
No exercise for 24 hours in advance, only heavy protein meat and a veg after 3 PM. Hydrate in the morning, no food.
After going through all the insurance rigmarole, a young woman took me too a small room with a barco lounger. She pricked my finger to test blood sugar, then asked me questions about why I was there. She then explained what would happen. She found a vein and injected me with a radiotracer. Exactly: F18 (that is radiation level) Fludeoxyglycose or FDG.
She then left me in the room (turned off lights) for 1 hour. No reading, no moving, no phone. This radioactive dye detects activity inside the body at cellular level. Appearance of organs and tissue, and how they are functioning.
After an hour, she took me to loo, told me to remove bra if it had wire, but all other clothes left on.
The machine looks like an MRI, but is only used for this. Because of my bad shoulder, I knew I couldn’t lie there without moving for 30 minuteswith my arms over my head, so she had an elastic band and she strapped my arms to my sides. It was comfortable.
The machine takes you out and in for the next 30 minutes. From eyes down, but I doubt the legs, didn’t look.
When I left, all she said was “I hope I don’t see you again”.

My appointment with the gyn/oncologist was yesterday. Unfortunately, the scan found three tiny little things that were partially calcified, but still were bad. that plus the fact that my CA 125 blood marker did not get below 40. It needs to be in the mid 30's. And so, in two weeks, I have to start a series of 3 chemos, same stuff as last time, Taxol and Carboplatin. I'm not happy about this, but the doctor seems to think these last three will take care of things and he will then put me on a pill for maintanence.

I won't write another of these updates unless something unusual happens, or at the end of the chemo when I assume there will be another PET scan.
Not a happy girl right now, but reconsiled.

Fifth Chemo

This post will be longer and more informational than usual. I’ll get graphic in places, so bear with me. Everyone is different, but it may help someone.

BTW: my internist appt. went well. Re the eye problem I’ve been having and discussed previously here: he wants to hold off on an MRI of my head until chemo is over, as that may be causing it. The chemo nurse disagreed. I’ll talk to Tracy and son David later tonight and make a decision. The chemo nurse had never seen anyone with the same problem. 🤔

                                                                Jeni, the chemo nurse

I had  chemo #5 last Tuesday. It takes 5 1/2 hours. They use the port I had implanted in the upper right hand side, just inches above my breast with an incision in the neck. (A port is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. You can feel it beneath your skin... shaped like a small triangle.)

I take 3 steroids with dinner the night before and 3 again with breakfast. Then 1 for the next three days morning and night. (Doctors have found that the treatment is more successful when steroids are given along with chemotherapy drugs.)

I also take 1 Emend just before chemo and the next two days with breakfast. Please see another post where I discuss this hideously expensive drug. But it works.

Here’s a list of what’s in the 5 bags given during my chemotherapy session via the port.

1. Zofran and decadron (Both help with nausea, but remembered ber I also take Emend)
2. Famotidine (lowers stomach acid)
3. Benedryl  (which is supposed to put you sleep, but doesn’t work for me)
4. Taxol (a cancer medication that interferes with the growth and spread of cancer cells) Its the one that makes your hair fall out. Not all of mine is gone, but most of it. No eye lashes, but still have eyebrows.
5. Carboplatin (Used for advanced ovarian cancer. I am stage 3c. It is used with other chemotherapy ...in this case, Taxol, as a first line treatment. Carboplatin is the one that makes everything you eat taste like metal. Fortunately, so far, this has not happened.)

Before you leave, the nurse puts a neulasta “machine” on my arm. 

In about 10 minutes, you feel a little electrical shock. Weird. Photo here. You wear it for 27 hours...a little green light flashes (which I spent 15 minutes looking for in the middle of the night, until I realized it was me! Duhhhhh.) it flashes after about 24 or so hours and the green light stops. But they want you to leave it on the full time. 

This Drug Is Used For:

• This medicine is used to stimulate the growth of "healthy" white blood cells in the bone marrow, once chemotherapy is given.  White blood cells help the body to fight infection. This is not a chemotherapy drug. 
• This medication is usually given at least 24 hours after chemotherapy. Really important. It is often given by injection, but these little machines are nifty. No showers for two days until this is off and port healed. (which is bandaged) 

Day 1. Chemo day. Feel fine, super energetic. Making dinner even. ( you cannot eat out for 10 days and you must wear a mask in public places for that long too.) No nausea, hungry all the time. Did I ever mention that chemo increases your metabolism? In my case, this is a plus. A good day, if you don’t mind sitting for 6 hours and peeing constantly. You must drink copious amounts of water all through chemo and I really press it down the first 10-12 days (more than the 8 bottles they recommend) and then after 10 days, less, but still the required 8 bottles a day. Have I mentioned I hate water? My preference is iced tea, which I sneak in twice a day. Does not count as water though. ☹️ You spend all your time in the loo. I wear a smallish pad all day and a bigger one at night. You really want to flush that bad stuff out. I used 4 pads just during chemo. I also, at Tracy’s suggestion, bought some of those “pee pads” the hospital uses. We got them at a pet store, believe it or not. But the main problem is not the bed, but the minute I get up, I am flooded. So I also cover the carpet with towels. I know, gross. Haven’t had an accident yet, but might as well CYA. Literally. ☺️

The rules: No sugar, no soy products, no salads, no rare meat or fish. We wash all veggies and fruit at home with a mixture of white vinegar and water, then rinse.

Day 2. Pretty good day. Feel well, took walk, made dinner. Started to feel tired after dinner. Had one super bad hot flash (pillow and sheets get wet.) during the night, but expect to have many more. 

Day 3. This is supposed to be worst day, but I’m not feeling too bad. A little weak, but took a walk, did laundry, dishes etc. But by the end of the day the night sweats began again and lasted two days. 

Day 4. Still a little weak, still heavy sweats.

Day 5. Sweats gone. Today starts two days of a lot of bathroom trips with a little cramping. Not diarrhea, but just two days and nights  of trips to the bathroom. Sometimes I take Imodium, but try not to as I think my body is getting rid of bad stuff. 

And don’t forget all the water you must drink. Constantly

We actually went to the beach today! Probably not a good idea, but makes you feel better mentally.

Day 6. Tracy had to leave as she’s moving, but I managed the airport drive. It exhausted me.

Day 7. At this point, recovery usually starts, but I’m finding almost any exertion is tiring me. It’s taking longer this time, which I was warned it would. I can usually get to the gym (treadmill and bike) by day 8 or 9. And take classes again by day 10. Doubt I can stay on that schedule this time. Some housework and grocery store are going to be it today.
Two additions: today, for the first time, I had a back ache. In the middle of my back, as though it was tired. I took Advil, it went away. The second, neuropathy. (We were told about this one in advance, but never had a problem with it until now: a couple days ago, I noticed that my feet and part of my lower legs were a little numb. That has remained, but doesn't bother me much.

Day 8: Yes, I did go to the gym. Did  1 3/4 miles on the bike and 1 mile on the treadmill. At the end, my lower back ached and so did both my hips. (I had a hip replacement many years ago) These things are both new and both only lasted until I took Advil.
Tomorrow I will try a class.

I probably won’t post again until after the 6th chemo is over and we find out what was accomplished.

Thanks for hanging in there with me!

Fourth Chemo

Blood work Monday. I don’t mind it, but it’s always a reminder chemo is coming in a week. Anyway, white blood cell count good, all results good. I asked if I was getting a lower dosage than others and was told 10% less because of my age. I said everyone else I know going through this are having way more trouble than I am. She said it was 1. They weren’t drinking enough water 2. They weren’t exercising (that’s a biggie)  3. It’s a mindset and mine is good. It appears the 10% less is relative. I sure hope that’s right. 

Big eye test last Monday. Result? Eyes are fine, but he wanted me to see a neuro guy in his office. Decided to talk to internist first. Not sure I want to open that can of worms. Internist appointment is next week, day before fifth chemo.

Fourth chemo went well and no, this is not following the exact pattern as the first three, but close. Think I was a day or so longer getting my feet under me. Fifth chemo is next Tuesday....only one more to go after that. 

My son and DIL came for a weekend, as you can see from the photos on Instagram. Of course, it rained the entire time. We shopped around, but I got so wet, in and out of air conditioning, I was worried about catching a cold, which is a major no-no and they wouldn’t do the chemo. I had them drop me off. But I’m fine, took a lot of vitamin C. 

Unfortunately for them (and a bad omen for the rest of the summer) the seaweed problem is back and the word is....it’ll be worse this year.

Third Chemo

Third Chemo

Had a minor problem with the carboplatin. There was a flushed heat in my lower body, but it only lasted a couple minutes. I honestly didn’t think much about it but the chemo nurse overheard me telling Tracy and came in to warn me to call her if it happened again or lasted longer. I know some people cannot tolerate that drug so asked her what to watch for. But no problems again. 

Today’s pics are of daughter Tracy, ready for the arctic temps in the chemo room. I’m again in mother’s Afghan, with less hair. 

When we got home I was hyper...made half the dinner! I’m going to do laundry and pay bills because I know this won’t last. We’re having Smitten Kitchen’ s cauliflower rice dish. I’ve posted it before, so you can go back in my Instagram history and retrieve the recipe.

Third day arrives and while I am tired, not nearly as badly as I expected. And I can still taste! Please let that continue.

Last night Tracy made a bulgar salad (it’s already been posted a while back in my Instagram) and Alice Water’s chicken. 

Fifth day, feeling better, but still tired. I’m walking around the block now, today twice.

It seems to me the chemo problems follow a pattern as it has been similar all three times, with perhaps adding a day or so of fatigue. Here I am on the 11th day, feeling good, already went to gym once and the mall..with mask. Today I’m having the lighter wig shaped by my hairdresser and then we’re going out to dinner with son David, sans mask. On Saturday, another fun party at the beach club. 

Tracy leaves tomorrow with clients for Art Basel in Switzerland, then Venice for the 58th Biennale. She’ll be back in time for 4th chemo. 

I’ll be cat sitting. And healing.

Right Before Third Chemo

Well, I spoke a little too soon with my feeling good comment. This time, the exhaustion hit at the end of the second day. Lasted one more day and I think would have improved had it not been for three practically sleepless nights in a row. Or less sleep than I require. Two 4:30 AM wake ups, all unrelated to chemo and on the third, someone called on the landline around 1 AM (Wrong number) and I didn’t go back to sleep. Or at least not much. And then restless legs, (have you ever had that?) which I rarely have because I keep a bar of soap in my bed. Old wives tale that works, except that one night. Those three nights set me back...I didn’t do as much walking as I like. But the next night was sheer heaven. Didn’t wake up until 7:15.

There’s quite a bit more general information in this post than others. Someone told me to write down anything helpful.

We went to the new wig shop...she specializes in cancer patients. If you’re local, here is her card. Got a super light weight wig. For some odd reason, I still have some hair...enough to get away with a baseball cap at the market and gym. (However, I am losing my eyelashes! I can actually count them on one of my eyes. Eyebrows still there. How odd is that?) Anyhow, I would wear a wig for 

dinners.

The Medicare nurse had her last visit...they give you 60 days from original surgery. I don’t meet the criteria for an extension. You cannot do any abdominal exercises for 90 days after surgery. Have a month to go.

One more little thing: I inherited my mother’s skin....thin and when you brush up against anything, it leaves a little blood under the skin. Been going on with me for years. No, she didn’t take blood thinners, nor do I. The dr mentioned this would get worse with chemo..they’d appear for no reason. It has, its gotten pretty bad actually, but years ago I discovered something called Vitamin K cream. It only works if you rub it on practically the minute you do the damage. But I’ve been using it on my arms and think there’s an improvement. What looks worse than red blotches all over your arms in sleeveless summer things? I can put a little makeup on, which helps. I know....Vanity, thy name is woman.

Did I mention someone told me to take L-glutamine as it’s supposed to help with bone aches? Either it’s working, or I’m not going to have that problem (yet) as I have only had the bones in my feet ache once...a month ago. Also, I take 500 mg of L-Lysine, (plus chap stick or lipstick all the time) which helps with cold sores...something I tend to get.....someone told me when your immune system is compromised, you can have a problem with that. So far, not yet. 

I also want to mention one other little unpleasant thing that nobody ever talks about. On the 4-5th day after chemo, I get cramping and loose bowels. Not really diarrhea. And it’s the cramping that’s uncomfortable. Lasts a few days (I take small amounts of Imodium, which works, but am careful to only take half now and then as I don’t want to swing in the other direction) and then it’s over. Other people seem to be constipated during the entire thing. Weird. And it may change, who knows?

First day at gym today...with mask..which won’t come off until the weekend. 12 days with mask and no eating out, 10 days without mask and I can eat out, within my new food limits.  

I’ve been having this weird problem with my eyes, difficult to describe. Sort of like being in a tunnel, but you can see and hear everything. Decided to go to eye doctor. He said all was well, but considering what I’m going through, wants one  more test. Scheduled next month. I’m not thrilled, but glad he is following up. 

Last night we went out to dinner and I had my first wig night out  What do you think? 

We’re going to try to go to the beach this weekend...I’ll be covered up completely! And under umbrellas. It’s a rough surf down here, so doubt I’ll be in the water, but they said I could if I wanted to.

Third chemo the day after Memorial Day. 

Second Chemo

Well, I certainly enjoyed my last week of freedom! Out to dinner, Derby Day party, no masks, gym every day and I felt pretty good. One week before next chemo they do blood work...mine was fine, all at the high end.

Tracy arrived the day before and this time we went prepared for a really cold room. I took an Afghan my mother made (it’s not the prettiest one for sure, but it’s warm and a friend told me it would bring good luck.) and Tracy wore a sweater and another layer. 

All went well....we met another woman in there, who has so many more issues than I do, I was amazed at her upbeat attitude. She was chatty and had a nice lightweight wig on, so we found out about another wig store. Light weight will be great for Florida summers. My hair is thinning considerably. I’m still going out in public with it, but not for much longer.

Once home, I had one good day and most of the second. But towards evening, exhaustion set in. I feel pretty much the same way today, but I fully expected this on day 3 and 4. I have walked around the block each day, but am not ready for the gym yet.

Nausea is still not a problem and I am hungry, so have not lost taste yet. It’s lovely having someone cooking for me. Thank you, Tracy.

She’ll leave Monday, if all goes well, but will be back in another 2 weeks because I have two chemos this month. She got permission to bring the cat which is fine, because her cat sitter is sending such sad photos. 

He likes it here and as long as I wear gloves and a mask, I can deal with litter box. Tracy has to go to Europe on business for two weeks, so I’ll be the caretaker. 

I’m doing better than I expected, but must confess the amount of water they ask you to drink is amazing. Iced tea doesn’t count and those of you who know me, know that’s my choice of drink. But I’m getting the water down as it flushes out the bad stuff. 

All in all, I’m handling this well. Next update probably after third chemo.

Easter

I guess it’s time for another update. Tracy went home yesterday and will be back for second chemo the beginning of May. She has worked like a trooper, cooking, caring, listening to my complaints. I repeat..this is much harder on family than patient. I took her to the airport, so no problems driving. I’m not looking forward to next chemo because everyone says this is the one where you lose your hair and have a metallic taste in your mouth.

I’ve done pretty well, comparatively. No nausea. Eating. Tasting. Drinking water. All the tags placed over my staples have fallen off and some of the coating they seem to have put on the two port incisions is also peeling off. 

On day three and four I was tired, but not go to bed tired. I made one mistake: I went to the gym one day when I knew I was too tired to go. I did half the regular time on treadmill and recumbent bike, but then left. It left me weak and messed up the next day. I know better now, but even when I don’t feel up to the gym, I try to walk every day. Not fun wearing a mask at the gym, but I have to protect myself. I don’t wear one walking. And no going out to dinner. Boo hoo on that one! I REALLY miss that. 

I’d say there is steady improvement each day. A little backache one day, or feet ache one night, but Advil takes care of that. I think you slowly improve and when you’re finally feeling fairly normal, it’s time to get hit again.

Tomorrow I’ll try some ordinary things: car wash, grocery store and see how I do. Mask in grocery...much hand washing going on here. My life has changed drastically. Takes a while for it to sink in, but it finally has. I am grateful that I’ve taken this as well as I have, no depression, no tears, just acceptance. Pray that continues.

Am I boring you?

1 month

 The first chemo went well. No pain at all accessing the port. They did a blood test, then said all was well. They started with three drip bags via the port: medicine to coat the stomach, an antibiotic and some benadryl. Then they started with taxol, followed by carboplatinum. It all took about 5 1/2 hours. I feel great, but guess I will have a couple days (hopefully) that I will feel fine, then get hit with exhaustion and, hopefully, considering those expensive pills, nausea. About those pills:

They’re called Emend  and my drug program would not cover the cost. You need three for each chemo, they cost almost $700 for the three. You can reapply and apply to a program with Merck that will give them for free for a year. I was accepted. They were supposed to arrive by Saturday, but didn’t, so I had to find a drugstore that had it in stock and pay them $635! Fortunately, the pharmacist was on the ball, went to a website dedicated to finding coupons for drugs your company turned down. He found me a $410 coupon, so didn’t have to pay the full shot. We should receive the pills from Merck this week.

I was given steroids to take orally the night before, in the morning, and twice a day for next three days. She also stuck a neulasta patch (well, not a patch, more like a small machine that flashes a green light) on my right arm. For 27 hours, then we take it off. It’s for your white blood cells. I was stupid enough to forget I sleep on that side. Duhhhh.

Did I mention I have to take my temperature twice a day? And go back one week before next chemo for blood test. I think this is also the month I have to see the gyn for post surgery exam. Good planning again. double duhhh.

So water. You have to drink gallons of it to wash all the bad stuff out. Also, my bathroom is considered toxic, nobody can enter except me...toilet lid down to flush, and flush twice.

Here I am: 

How do you like my short hair? And Tracy says this photo is an Apple product ad. 

Next chemo in three weeks. They said if I felt OK I could go out to dinner....eat nothing raw. But were vague about the gym, which, at the time of day I go, nobody is there and I could wear a mask, wipe everything down etc ; who knows who’s touching the food in the kitchen? I can’t wash that! So many incongruities! Both the doctors said to do what I want.

So far, so good. 

Almost three weeks

To start with, I want to thank all my friends for their thoughts, cards and prayers. You can't know how much I appreciate it and how much it lifts me up.

This week we accomplished a lot. I’m still healing, but we’re moving ahead on the list. We looked into wigs and found a perfect one, exactly my color and style. I only need to have my hairdresser trim the bangs correctly. I also decided to have my hair cut really short (Michele Williams style) as several of my friends said it was terrifying to wake up and see chunks of your hair on the pillow. Will send pic when I do that. There’s yet another wig shop in town that carries caps, which I’ve been told I’ll need at night.
Then we leased a new car....wouldn’t you just know that my old lease would run out right now? It was Tracy’s first experience with a car dealer, and you ought to ask for her services because she was a first class negotiator. Also, my apartment lease came up for renewal, so we got that done as well.

And now to the port. It was put in Monday. It’s outpatient and it’s a device that gets implanted just below the skin, and connects to a blood vessel near the heart re two incisions. They sedated me with fentanyl...which does not agree with me, so they added two doses of anti-nausea. Altogether, not a fun day as I stopped breathing a couple times and they shook me and yelled BREATHE! (Did I mention that I also had no pulse at one point during the first surgery? Same drug. And yes, we keep telling them NOT to use it.) The procedure doesn’t take long and I was home in a couple hours. There was a little ache when I turned my head a certain way, but other than that, I was mainly exhausted. Slept off and on rest of the day. Now it just feels a little stiff, no pain. You can feel a little bump under my skin.
I really have to add this little update. Remember that bladder incontinence was my first warning sign? Well, I am sorry to tell you that it really doesn't seem to improve much. I wear a pad pretty much any time I leave the house. You wanted honesty...you got it!

Tracy went home to NYC to accomplish a little work. So fortunate for both of us that she no longer has a physical gallery and does most of her work from her home or on trips with clients. She has been a brick and will be coming back for the first chemo. The cat stayed with me. I'm OK with that.

So now I have two weeks of no needles!! Just rest and heal for the oncoming battle. Except....I had one meeting with the chemo nurse today to learn the protocols. They are amazingly strict and comprise about 30 pages of instructions. My drug plan turned down one of the three drugs for nausea, so we are reapplying. I’m keeping my fingers crossed because that one would be $800 or so out of pocket.
I’m writing this diary to describe feelings...here’s one: I don’t want to hear or even think about this for the next two weeks. Would rather pretend all is well. I didn't even want to go to this grim meeting. But I put on my big girl panties and went.

Just to celebrate, I went to the gym. First time since the first surgery and managed a mile and a half on the bike and nearly a mile on the treadmill. Not great and not up to my usual standard, but for the first day back in over a month, I’ll take it. Am not allowed to use upper body for two weeks because of port surgery.
Next update will probably be after first chemo on the 15th.

Almost Week Two

Well, the staples are out along with the JP drain. No, it didn’t hurt to have staples removed, but it pinches pretty darn hard. They put bandage type patches over staples and said they would all fall off in the shower eventually. It is a huge relief to be able to wear clothes again.

And a side effect...I lost 20 pounds. Not the best way in the world to lose, but better than not. Oddly, aside from the 4 days of starvation at the time of surgery, my appetite has been fine.

The biopsy stuff is in, I swear, they practically took everything out they could find. My daughter sent the info to the family and it sure shut them all up. No doubt scared them to death as even I didn’t like reading it. They think they got it all, but I suspect they always say that. It officially is stage 3c ovarian cancer. Not good news, but I’ll fight do what I’m supposed to do. We talked it all over with my internist and agreed with the program the oncologist has suggested.

Next I get a port. Another fun event. The first chemo will start a week after that. There will be six, 6 hours each every three weeks. The drugs are carbo platinum and taxol which are the common first ones given for ovarian cancer. We looked at the chemo room (which is actually in the doctors office) and it meets all the strictest protocols a friend suggested we look for. I will continue these updates. 

The only new thing I heard about is called a “penguin cap”.  Something filled with dry ice you wear on your head during chemo and it prevents you from losing your hair. ( I think taxol causes that) It is not only uncomfortable, but very expensive. I’m passing on that one...decided to get a really short haircut from the start and a wig. At my age, vanity is out the window. 

My daughter is treating me to a facial today. I can’t wait. She’ll be going home for a week or so and then come back for first chemo.

Day 8

My daughter thinks I should keep some sort of diary as we go along on this journey. I’m not sure because everyone is different and what I’m thinking and going through may not even apply to someone else. But, for her sake, I will try.

Today, the problems are clothes and the digestive track. I’ll no doubt look back at that sentence and laugh at how unimportant it is, but still.
I have a drain, with a bulbous end, kind of made me think of a turkey baster , only larger, which must be drained (by me...gross) quite often. And the end is safety pinned to outer clothing so it doesn’t pull on the connection into my body, which I understand extends into me 12 inches. As I said to my son, I now know how it feels to have balls as it always seems to gravitate to my crotch.
Then there are the staples...from under breasts down to crotch. During this stage, no underwear, (unless you have a closet full of thongs, which I don’t) no pants, slacks or anything can irritate the incision. Basically, I am naked under whatever I find to wear. I have a nice blue bathing suit coverup that works and yesterday my daughter went to the local boho store and got me a couple kaftans...not my style at all, but because I have to walk several times a day, I do need to be covered in something. We’ve found nothing yet I could actually wear to go out to dinner. My shifts are too narrow to accommodate the “baster”.

Problem two: everything was shifted around inside so your intestinal tract is a mess. For most, it’s constipation, but not for me. It’s been 8 days and things are still not normal, but there was a slight improvement today which I am hopeful about. My daughter has gone crazy re organic eating and she’s doing the cooking, so I’m fine with that. Last night she made a delicious Alice Waters roasted chicken with carrots and sweet potato. I’m still eating very small portions, tummy has shrunk. For once, I feel this is on the plus side.

About pain: I haven’t had any worth mentioning since the second day. The most I take is a couple Advil once in a while, which I think are a no- no, but tough.

For the past several days I have walked around the block several times a day at a decent pace. And I’m going out to a quick dinner tonight, wearing a very loose pair of slacks. Not sure how that will work out, but I guess that’s progress.

The Big C

Most of you have known me for a while. If not, let me explain: I am 81. Aside from minor arthritis things I am in perfect health and take really good care of myself. I work out 6 days a week....hard. I have always been athletic, active, involved. 

My father died at 93 of prostate cancer, which had spread to the bone because he ignored all the tests.

My mother had cervical cancer when she was 40, had surgery, nothing else,  and lived another 52 years, finally dying of heart problems.

So you can imagine my surprise when I was diagnosed with ovarian cancer. But my main reason for writing this is how it happened, because who’d have ever thought of this?

I developed slight urine incontinence. Common for women in my age bracket, easy to ignore. My sister said: “I’ve been wearing little pads for years!” But I decided to make certain I didn’t have a bladder infection, as this incontinence began rather suddenly. No infection. And here’s the second clue, which I actually said to the doctor : something is not right. ( I have only read that as a warning sign once.) Couldn’t put my finger on anything. Felt fine, eating fine, working out, all seemed well.

And so it began. My internist was really on top of things, one test after another until it was discovered. Ovarian cancer.

We all know the common warning signs: (and yes, there are others)

• Abdominal bloating or swelling
• Quickly feeling full when eating
• Weight loss
• Discomfort in the pelvis area
• Changes in bowel habits, such as constipation
• A frequent need to urinate

I had none of those.

So when incontinence happens in women over 80, it is almost always considered normal. Not so. 

So this is my gift to you: have a great internist who cares about you. Watch for any little easily ignored changes or merely an odd feeling something’s not right.

Surgery was 5 days ago. I’ll not know complete biopsy results until next week. Chemo will start in a month or so. My “normal” is no longer normal. Yes, I have hope, yes I trust my surgeon, yes, I will do as asked.

My children have been bricks. This is harder on them than on me. My daughter is staying with me through most of this. Send her waves of strength. She’s going to need it. Keep all three of them in your prayers

Life Repeats Itself

Imagine my surprise to see I hadn't published a thing on this blog for a year! And so much has happened....plus so much has remained the same. I wonder if that's what life is like when you get older?
First things first: I moved again! I know, I loved having a house, but it was so far away from all my activities that I spent all my time driving. So I put the house on the market and it sold within a week! Where to move? I knew I wanted to go back to Boca. But....Buy? Rent? My daughter suggested rent, so that's what I did. More downsizing, but it wasn't as difficult as I expected. And what a great location! Dead center of town, first floor, and I can even see the lovely community pool from the second bedroom. It's actually worked out beautifully. I just moved my living room from one place to another.

Nobody on either side of me either, so it's quiet. A fairly new complex, attractive, nice amenities, rather large, but all ages, which is nice.

Of course, right now, my living room looks like this:

Something about fixing possible air conditioning leaks, every apartment in the complex will have to go through this...I feel sorry for those with pets and/or kids.. As Gilda Radner used to say: "It's always something!"

Then, sadly, one of my very good friends had surgery, was on the mend in rehab and suddenly died! It's been a shock to all of us...they discovered she had blood clots in her lungs. I'd been to see her just the day before and while she didn't seem to be improving very quickly, she was alert, normal and all she wanted to do was get home.
RIP, Polly.

And my last bit of news? Remember this post? Petty Surgery. Well, it's happening to my other knee. And this time, the cortisone shot didn't help much. Hoping to hold off surgery until the end of August, if I can stand the pain.

Are any of you watching The Great British Baking Show? Such fun (LOVE Paul Hollywood!) and you can watch some of the first episodes (called The Great British Bake Off in Great Britain) on Netflix and UTube. Last night I saw one of their older shows with just Mary Berry and Paul Hollywood making Christmas treats....found it accidentally as I was scanning through anything with the British title. They were so cute together and the recipes amazing. See if you can find it....here's the link online: http://www.bbc.co.uk/food/programmes/b06sq5kj

Lastly: I am making NO comments about anything political. Here or on Facebook. I promise.

Can you believe only 5 months until we're all thinking about Christmas?

Get Smart

Do you remember the Don Adams "Get Smart" show from the 80's? He just bumbled along through life. You can't do that anymore. Personal responsibility is the name of the game now.
And I can't tell you how important this post is/might be to someone you know and love. As my dear friend Nancy used to say: How do ignorant people manage their lives? Well actually she used the word stupid but that was years ago and definitely not PC these days. At any rate, she made the comment in relation to something ridiculous that happened to her at the driver's license bureau, but it holds true in every aspect of life. Although today I'm thinking medically, so it's simpler just to list a few things that have happened to me or mine and hope it might help you in the future.

1. Ten years ago my son, at age 45, had back surgery. He's a trauma nurse, so we're not talking about somebody ill informed regarding anything medical. In the middle of the night, a nurse came in and was preparing to give him medication of some sort. He asked her what it was, looked at it and told her it was not what was prescribed. He was right. She checked. It wasn't. Now if that happened to me, I'd never have known unless I asked the doctor what medications were being prescribed and then kept an eagle eye out....day and night....for anything given to me. I'd just trust the correct medication was being given. What worries me is what if I'm so ill I can't check?

2. If you have a health scare, be sure to take your spouse, your daughter or son, a friend or anyone who will listen carefully to what the doctor is telling you. You'll probably be in a state of panic, won't remember anything and you won't ask the right questions. I've had it happen. For some reason, panic turns off your ears.

3.  I had a hip replacement 8 years ago. Every year I have an X-ray followed by an appointment with my orthopedic man. I called for my yearly appointment and in turn, his office called the people who do the X-ray. I then received a scheduling call. I was told I had to prepare for two tests: an ultrasound of the pelvic area (must drink 32 ounces of water before the appointment) followed by the normal hip X-ray.  Hmmmm. I questioned the woman for quite a while trying to make certain that first test was requested by my doctor, but she decided I was either senile or an idiot (see first paragraph) spoke more slowly, which was soooo annoying, and kept asking if I understood what she was saying. They look at your birth date and scratch you off as senile, stupid or nearly dead. You will find this happens more and more as you get older. I finally gave up with her and told her I would call my doctor.
That first test sounded familiar and then I remembered: my OB/GYN had me do this a few years back. That couldn't be right, so I Googled the test and sure enough, it didn't have a damn thing to do with a hip replacement. I did call the doctor and no, they had not asked for that ultrasound. What if I just took their word for it and had that unnecessary test? The woman was quite adamant about it. Instead of assuming I was an idiot, she should have double checked with my doctor. How difficult would that have been?

I have more to list, but you get the idea. And these were minor incidents. I bet you could each add a personal experience to this post....feel free to do so in comments, any advice may just help someone.

Be informed. Use good sense. Get advice. Talk to people. Use Google. Understand your doctor. Understand your medications and what they do. Get details. Write it down.

You are not ignorant stupid.

Spring Cleaning

It finally occurred to me: my drawers, closets and the garage were a total mess.Things I don't wear anymore, things I don't use anymore. Just things. I don't need "things" any longer. They just leave a disaster behind for someone else to clean up and dispose of. And I know from whereof I speak. I did it for my parents. Even after we took the few things each of us wanted, we ended up tossing an enormous amount of things in a pile in the center of their living room. I was shocked. It nearly reached the ceiling. Guess what? Our children won't want most of what we treasure. We didn't, so why would mine? Sure, my daughter says she wants this collection of silver topped jars (they were my mother's):

but who's going to keep them polished? And where will she display them in her small NYC apartment? Not only that, I own a gorgeous tea set including the tray with all the bells and whistles and it's stored in my sideboard. Has been for years. I decided to sell it as I never use it and it was rejected by the local auction house plus two consignment shops! When I passed that info along to my daughter, she was incensed and called someone she knew at Sotheby's, sent photos and information. No thank you was the answer. Better to keep family heirlooms in the family. (In other words, yours is not the quality we require or....we have so many in stock we can't sell them. Nobody wants them anymore.) I haven't completely given up hope....I'm still thinking eBay for those silver topped jars.

Another prime example of cluttering is books, all kinds: my mother had cookbooks galore. For the most part, my sister and I between us already had the same cookbooks and didn't want hers. But they were good ones and in perfect condition. Hated calling 800gotjunk to unload them. Libraries don't want them. So what did I do? I piled them in the trunk of my car and everywhere I went for the next month, I announced I had free cookbooks in the car. Eventually, they were gone. And right now in my garage? Several large boxes of books and encyclopedias. (Does anyone use those anymore?) Well, that car trunk full of books trick isn't going to happen with my kids. Disposing of estates would be simpler if the family lived in the area, but mine don't and they have jobs. No free time. I ended up giving away nearly 60 cookbooks in the last month. My cookbook giveaways piled high:

I kept the very best and my cookbook shelf, formerly jammed with books, now looks like this:

So nice to bring some of my majolica pieces out of the dark cabinet and use them, plus other odds an ends from our travels. Will I miss the cookbooks? Not really...I had already put the best recipes on my computer.
And when I pass on....most of the things on these shelves will no doubt end up in a dumpster. Hopefully, not the majolica. Remind me to make a list of the better pieces.
The family won't have the time to sort or the money to waste on shipping furniture.

Next I moved to the bathroom cabinets and drawers. An easy enough sort, although among other things, I ended up throwing out about 20 various bars of decorative soaps I had been saving for years. Saving for what??! Sheets, towels, why did I have so many? Nothing matched either. Salvation Army got bags full.

Then I started on clothes, shoes and coats. My mother used to say: dispose of anything you haven't worn in three years. So I did. Some went to consignment shops, the rest donated.

The kitchen was next. And difficult mentally because I am a food blogger and had to make some tough decisions. One thing was easy....I rarely entertain anymore so I got rid of a ton of things I had purchased over the years for parties. Small plates and glasses, serving plates I bought at Pier One. Nothing valuable, but all taking up space. And....things my kids would dump anyway. (Have you gone through your spice cabinet lately? OMG.)

Would you believe the most difficult was the garage? That's where we put everything we don't have room for in the house. Hem. Cache-pots galore...gone. Old books....gone. Old picture frames. Unfortunately, I couldn't bring myself to dump scrapbooks and old yearbooks.....good thing, too, as we had our 60th HS reunion this month and the committee used lots of my photos. On the other hand, who's going to want all that crap when I'm gone? I've already sorted the kids' photos and distributed them to each. Doubtful my kids will look at my old yearbooks, or VHS's (!) of old super 8 film my uncle took when I was a child. Yawn.
One thing I am grateful is done: the Christmas decorations and ornaments in the attic. My daughter and I sorted through them all last Christmas. And dumped. She'll thank me later.

Are you wondering right about now why I didn't have a garage sale? Not allowed in my gated community. But I did give a great deal to friends who I'm sure plan to have a garage sale in the near future. I was grateful to get those boxes out of the garage.

Didn't the consignment shops take anything? No. They might, they said, take my set of Christmas Spode with matching glasses if I brought it in next fall. But only if it is a full set...nothing missing.
Did anyone want my depression glass dessert plates? I had about 40. No.
I think one of the problems with consignment shops in South Florida is everyone moves down here, decides to simplify their life and all the heavy furniture and "things" brought from the north end up in consignment warehouses. They are chock full and getting more and more particular about what they take. Can't say I blame them.

What I'm trying to say here is this: Nobody, but nobody wants your stuff. Oh...there are a few things, like my little cane collection. (The kids will fight over that monkey with teeth...it was my grandfather's. Maybe. I'm probably wrong about that, too.)

Some art on the walls. Perhaps the majolica. My sterling silver flatware.
But for the most part, things YOU think are valuable, are not. It is a humbling experience and a great lesson to remember.
No, I'm not ill. But it's only a matter of time and I wanted to thin out the flotsam of my life while I have energy and the will to do it.
Those "things" are not worth much anything in the end.
Your family is.
Your friends are.



(BTW: Do you know anyone who wants an armoire?)

Birthdays

Yep. Another birthday is coming my way. The older you get, the less you pay attention to them. Well, your kids do, but all in all, I really keep my mouth shut about it. I mean, would I be bragging or complaining if I talked about it? If you weren't on Facebook with me (or reading this, which practically nobody does), only my children would know. I thought I even took it off my Facebook page, but someone (meaning my daughter) always says something and then we're off. Either that or Facebook, once it knows and no matter what you do, never forgets and sticks it up there at the top of the page.

Still, I never cared much about birthdays....everyone seems to get upset at the 0's...30, 40, 50 etc. I never did. Still don't. It's just another day. My ex hit the big 80 a couple weeks ago. We've remained on good terms, so I sent him a text. His response? "I feel like a spring chicken". Well good for him. That's the attitude to take and he doesn't give a damn about numbers either. He plays golf nearly every day. The thing is, we've both been blessed with good health. (Picture me knocking on wood here. You just never know.) What a difference that makes. My dad, who lived to his mid 90's got dressed (even put a tie on) and went to work every day until he was 92. So my words of wisdom are stay active, stay interested, stay busy. That's the ticket. Do something. Anything. And keep walking. Oddly, and this was a surprise to me, walking seems to be the one of the biggest problems as you age.

This isn't an "0" year for me anyway, but that one is creeping up really fast and I wonder how I'll feel about it. Probably the way my mother did in my very first post for this blog: "Who is that old woman in the mirror?"

Do you want to know my age? Do you have any idea what a skate key is?

I thought not. (That's my cousin on the ground....I probably pushed her. I was a little shit.)

And besides, my sister is 6 years older. hahahahahaha on her.

So.....Happy Birthday, me. 

Don't tell.

Thank you, Google

When I hear people say: what did you do before cell phones? (back in the dark ages of my youth) my first response is: never mind cell phones, what did we do without Google? And yes, we had encyclopedias and dictionaries, but I did something yesterday that would have been impossible 50 years ago. While it brought me pleasure to solve a problem so easily, I realized we take turning to Google to solve problems for granted and the computer generations that follow don't know any other way.
So this post is a little thank you for all the pesky problems Google solves. Sometimes even big problems. (And please, let's not get into invasion of privacy issues right now.)

I replace my foodie blog header jpg as the fall seasons change and yesterday when I switched from Halloween pumpkins to turkeys, the white background turned pink. What's up with that? I've been doing this for several years and never had that happen. I decided to give it a day or two to pull itself together, but it didn't change. I tried everything I could think of and believe me, I'm no slouch in the computer department. (Yes, I tried re-installing. I even took it into Photoshop to dump more white in the background. No dice.)

OK, so I asked Google. Wording the question to get the right response is always a puzzler. After several tries, I must have hit on the right wording as I found a page of other people asking the same question. Don't you love those forums? They make you feel less an idiot (most of the time anyway) and it's always a relief to read someone else gets as annoyed as you are and just as helpless to solve the problem.
I read through the forum  questions and suggestions and finally found the answer.
The problem? Google +.  Who'd have thought? The solution? So simple. There it was. I did as suggested, went back, but alas, the photo was still pink. Then it occurred to me to do exactly what my old computer teacher always said to do: when in doubt, remove it entirely and reinstall. Voila! A white background.

Google, how do I love thee? Let me count the ways. Why do these simple little computer problems create such havoc? Why am I thinking about this at night? Why am I even bothering to blog about this silly thing?
World Peace. That's what I should be worrying about. Not pink backgrounds. Oh well.

(And in the event pink jpg backgrounds ever happen to you, here's the advice:)

"I was going to suggest that Image Enhance might be the cause. I will give you that information just in case.

The Image Enhance setting in is Google +. (It happens even if you do not have a Google + account.) To rectify the situation, log in to your Google + account and find the setting for Image Enhancement and answer it with a no. 

If you do not have Google +, you will have to create a Google + account just to correct this. 

Customs

My daughter and I have traveled internationally quite a bit together. For me, it started back in the early 80's when she took a job in Paris. I went once a year for a month and we took short trips here and there so I was fortunate enough to see a lot of Europe. The last trip I took to Europe was in 2008 when I took my granddaughter to see Paris, London and Venice over her spring break. An interesting trip, as she was ill for more than half of it! But that's another story for another day.

Now my daughter works and lives in NYC and while she travels a great deal for her job, twice a year the two of us still do something fun together. Mostly it's the Caribbean as she loves to scuba dive, we both love beaches and warm weather and it's easy access from Miami.

No doubt you hear this from everyone my age....travel actually USED to be fun. It really did. Not anymore. You know as well as I do all the annoyances so I won't go into lost luggage, canceled flights, TSA searches (my hip replacement causes all sorts of problems there) and all the other crap you have to put up with now.

What this rant is about is U.S. Customs. Getting back INTO the country. Rather an ironic rant considering what's happening on our southern border, right? So many don't seem to have any problems coming into the U.S.
Well. I was born here, I'm pushing 80, do not have a criminal record and have traveled a lot. The only problem with customs I ever had was many years ago I kept getting tagged because a felon happened to be using the same name (not the same passport number) so there was a flag on my name....she was way younger and one glance at my passport cleared up any problems, but it continued, so eventually I called and it was finally cleared up.

Last year Miami instituted a new process in customs...kiosks. You press your passport in a machine, it scans, takes your photo and shoots out a paper with the info and your photo on it. The first year it was speedy and the only problem was my piece of paper had a big X on it above my photo. That meant I had to wait in the regular passport check line....we're talking LONG LINE here. So fine.....I waited (my daughter didn't have the X and she had to wait for me.), was passed and all was well.

Last week we were in Miami customs again. There are more kiosks now, but unfortunately there are also lines and the wait is nearly as long for a kiosk as the old passport lines. We finally got to one, the paper spits out and guess which of us has an X? So I had to wait in another long line to go through the old fashioned way.This time I decided to ask the agent: why does this keep happening to me? You won't believe his answer: I have a common name. Call me dumbfounded. Thanks Mom and Dad.

Later, we talked about it. My daughter's name is nearly as common as mine, but she passes on through. We decided it was because she applied for the Global Entry Pass. As yet, she has NOT gone for the interview, keeps putting it off because she has to go to JFK in  NYC which is a pain, but still, merely applying for this and passing the first stages must count for something as she never gets stopped and always is prechecked.
I went to the site, looked at the info and aside from a detailed form, it's really pricey. $229!
You can also apply for TSA Precheck which is somewhat cheaper ($209), but you still have to go for an interview.
I don't know....is it worth ridding myself of this annoyance for two or three times a year?