another operation

Hi there everyone

This blog is one that I have tormented over for a very long time, ie whether or not to write it.

However since I have always seen this blog as both an accurate update on my medical situation as well as a means of explaining medical issues as they arise, to further the readers medical understanding, I feel compelled to also share my current situation with my readers. I will be having an operation in about 2 weeks for a problem I can only describe as "self induced". I am sharing this only with the hopes that I might spare someone else needless procedures and pain.

It is a very personal situation, but I feel I have shared a lot of stuff thus far, why not this?

Part of the reason for my trip to Canada next week is to have surgery to remove breast implants, one of which has ruptured and is leaking silicone. I was advised over a year ago that this needed to be removed, but with being on chemo, and also having a low blood count, I opted to delay this until now.

AND NOW THE STORY.......

I am telling this with the hopes that someone might read this and perhaps opt NOT to do this.

10 years ago, whilst training to do that Boston marathon ( this is a marathon that you have to qualify for, which means you have to have achieved a certain time in another marathon), I subsequently lost a lot of weight. In doing so lost what small breasts I had (or so I saw it).

At the time, being inundated with Victoria Secrets catalogues etc I decided I wanted to look like those models, well at least be able to fill out the clothing. ( I should add here that I have long believed that Victoria Secrets is likely responsible for MUCH of the whole breast augmentation craze)(just a thought)

I found out that having a breast augmentation (breast implants) was not a huge procedure. I went and saw a surgeon and he also agreed that I could have the procedure done under local anaesthesia (not how it is usually done, but hey, I did not want to risk my life with an anaesthetic). I had saline implants put in and immediately developed capsular contraction of the worst kind.

AN EXPLANATION: When a foreign object of any kind is inserted into the body, the body forms a capsule around it. Capsular contraction is when this capsule shrinks and forms a tight constrictive wall around the implant, making it as hard as a rock and quite painful.

Now I should have learned at this point that perhaps I was not meant to have implants, however I felt still that I wanted to have breasts....

So I found a surgeon in Portland who would repair this, and since I had had capsular contraction, I would qualify for silicone implants.

Again I had the surgery under local anaesthetic. He removed the capsule around the implant and the implant and put in silicone implants. I should add here that this is all placed under the muscle of the chest wall. True breasts sit on the outside of the chest wall muscle, but to get a better effect, often breast implants are placed UNDER the pectoral muscle.

Well things went well for 9 years and I really had no problems..

Last June amidst chemo and the fears of this cancer, I went to see a surgeon about having a bilateral prophylactic mastectomy, (my mother AND my grandmother had breast cancer and I was NOT wishing to go through this cancer thing again) I was quite emotional at the time.

The surgeon said that at that point, I was more likely to succumb to the endometrial cancer than breast cancer, so she would not consider the surgery until at least a year after my treatments. She did order an MRI because she felt a lump.

The MRI showed that the breast implant was ruptured, but that it was still contained in the capsule.

I was in the middle of chemo and radiation at the time, so nothing I could do about it.

I did see a plastic surgeon in the fall about removing it. He advised removing them and replacing them. I found that he was quite dishonest about the whole situation and decided not to have the surgery. He had described the surgery he was going to perform, and I signed the consent. I later went for my presurgery appointment and in reading the consent in detail, I found that the surgery he had described to me was NOT the surgery he had put on the consent.

This was around the time that my radiation problems began so I did not do anything about it. I DID start reading though.

I found that the ONLY way to totally get rid of the silicone was to remove the implant AND the capsule enbloc which means to remove the whole thing as one. This not at all what the surgeon here had planned.

To make a long story short, the closest plastic surgeon that removes the implant AND capsule as one is up in Vancouver BC, and that is why I am going there for the procedure.

I thought I would also outline some of the things I have learned about breast implants that I think more people should learn.

Over 50% of women who have breast augmentation (breast implant insertion) require another operation. Bear in mind that the surgery is expensive and many women save up for the operation and cannot afford to have surgery to repair whatever the problem is. The other situation that often comes up is that while someone might be able to pay for the surgery, when the time comes that they need it repaired, they are in a different financial situation..... ie retired.

Of asymptomatic women (women with no symptoms), at 10 years 50% of breast implants have ruptured. (saline implants deflate immediately when they rupture, but silicone implants remain as a gel inside the capsule) So my situation is not unusual.

Once ruptured the silicone can leak out to various parts of the body.

The studies done years ago disproved that breast implants have anything to do with rheumatological problems, HOWEVER women with ruptured implants were never studied, so it is unclear what happens once they rupture.

After you have had breast implants for a long time the shape of your chest changes somewhat in that having them removed you will be much smaller appearing than you were to begin with.

You cannot get private health insurance if you have breast implants. I was refused because of mine. I have long said that the reason I was refused was because of the vaginal bleeding, but what happened was that the vaginal bleeding made the insurance company look closer at my files, and the fact that I had breast implants made me uninsurable. Fortunately being in Oregon they have a plan for those refused insurance for a medical problem.

Most states do not have this.

SO there it is.... I have revealed all.

I hope that in reading this someone else can pass on this info. I will more than likely add other info about this as I remember it.

The cheapest way to deal with all of this is to throw out all the Victoria's secret catalogues. Kind of funny, after my sons became teens, somehow the VS catalogues just disappeared on their own.

Janet

my garden

I saw the ENT doctor yesterday, and he said that the redness at the back of my throat/tongue, had pretty much resolved and that he did not feel that this was a cancer, more an inflammation from the sinus drainage. This is my basil garden.

Crook neck squash, green beans, apple tree

August update

Hi Everyone.

Been awhile since I wrote, life has been hectic, with many back and forth trips to Bandon etc. Ken and I are finally back together in the same place AT the same time.

We are on our way to Llamapalooza, which is a small "festival" some friends of ours have out at Middlecreek (east of Coquille). It is at the studio that we recorded our first cd at. We are looking at recording another cd out at this studio in the fall as well. We are performing again at Bullards Beach amphitheatre on August 21st at 7pm.

As far as my health, last time I posted I described the increased takeup on the PET scan from the base of my tongue. One of the faithful readers of this blog just happens to have a husband who has just completed chemo and radiation for tongue cancer, so she urged me to at least have it examined by an ENT (ear nose and throat doctor)

So I did.

In order to see the base of the tongue, you need a special scope that uses the same technology as for a colonoscopy, fiberoptics.

They numb the back of your nose with spray, then insert the tube down the back of your nose. ( its not as bad as it sounds). I had the same thing done a few years ago, to make sure I was not abusing my vocal chords with my singing.

He looked down and said that the base of the tongue and the area around were red, but he said it did not look like cancer. (he could not say for sure)

So he basically gave me 4 drugs to treat the problem (whatever it is) and then suggested he have another look in a few weeks (this next Friday)

Well the drugs were an antibiotic, a nasal steroid, an oral steroid and mucomyst which thins secretions.

I took the antibiotic for 4 days and developed severe diarrhea, the nasal steroid gave me nosebleeds.

We went out for dinner the 4th day of the diarrhea and I stopped at the pharmacy on the way to pick up some lomotil to stop the diarrhea. It occurred to me that this whole story is somewhat like the song:

There was an old lady who swallowed a dog, I don't know why, she swallowed the dog, she swallowed the dog to catch the cat she swallowed the cat to catch the mouse, she swallowed the mouse to catch spider that riggled and jiggled and tickled inside her.............

SO hard to know when to say "enough already!!!"

I have noticed that I do wake up during the night often with what seems to be drainage down the back of my throat. I have never thought that I had allergies, but perhaps I do, after all Eugene is the allergy capital of the country apparently.

If this is due to allergies, then what I have is what is known to most as post nasal drip and the constant drainage from the sinuses causes inflammation at the back of the tongue and throat.

So I have started to take the allergy meds, just to see if this improves the situation and clears up the redness at the back of my tongue, so I can forget all about cancer.

On the endometrial cancer front, I had a followup CA 125 done 6 weeks after the one that was a bit elevated and it was back down to 7, which was a huge relief to me.

The rectal bleeding is pretty stable, it is not getting any better, but it does not seem to be getting any worse. I have not heard back from the hyperbaric doctor yet, but he DID say he was going on holiday. That suits me well, as Ken and I have a trip up to Canada planned for the first few weeks of September.

My garden really is a dream come true, I just love watching all those different things grow. I recently purchased a canner, more as a defensive move than anything, seeing all of those tomatoes starting to ripen. I just know that one of these days there is going to be dots of red all over my yard and I am not going to be able to keep up. I have used the canner once, as we had so many green beans, we decided to situate ourselves squarely amungst the group known as canners BEFORE the tomatoes ripen. SOoooo much harder to perform new tasks under pressure. So the beans were the dry run. We pickled them.

I feel that I am at least at "a tie" with the zucchinis finding many recipes to use them up with all the basil I have grown. The zucchinis I have are seeds from Italy (where they can guarantee no GMOs) and are much more tender even when they get to be huge. The skins are still tender too. Monday I have set aside to make zucchini/turemeric bread. Hope it is not too hot.

I have been meaning to post garden pictures, but with all the back and forth between Bandon and Eugene, the camera always seems to be elsewhere when I am ready to take a picture.

a better day

Well I guess it has been awhile, but a few things have managed to sort themselves out in the meantime.

My CT scan done about a month ago, had questioned an area behind the rectum where there appeared to be a mass, and he suggested a PET scan. My previous CA 125 had also gone up from 6-9.

Well I saw my gynecologist who checked the vaginal area, and also took a swab (essentially a pap). The Pap was normal.

I had the PET scan last Tuesday. A PET scan is where they inject you with radioactive glucose and it goes and concentrates in areas where the highest metabolism is going on. When it concentrates in spots, it can indicate an early cancer. So as far as xrays, it is the one test that can pick up a cancer the earliest. As expected it can be falsely positive, so results must be taken in context. Mine did not show any areas of concentration anywhere except the back of my tongue, which is hard to know WHAT that means. The radiologist was unsure if it was just "physiologic", which would mean part of the normal bodies functioning, but he suggested an exam. So the PET clearly showed that whatever is around the rectum, is not a cancer.

PLUS I got my recent CA125 back ( which was 6 weeks after the elevated one) and it is back to 7.

So I am feeling pretty good about that. I guess I said I was not too worried about it, but once all this came back as normal, I have this huge weight lifted, so I know despite what I am having, it is not cancer and that is the main thing.

I went back last week to see Dr Barnes who is the infectious disease doctor (who also has a specialty in hyperbaric underwater medicine) He was the doctor who originally sent me to the hyperbaric treatments. I really wished I had gone back to see him in follow up.

I explained that I had had daily rectal bleeding now for almost 6 months. It started towards the end of the hyperbaric treatments. I said that I had seen 2 gastroenterologists who had suggested treating the rectal area with laser and that I was concerned because a third of people treated with laser develop ulcers in the rectum, which with the decreased blood supply are very hard to heal. He was in total agreement and upon looking at my colonoscopy results said it was clear that I should have done a few more weeks of the hyperbarics at the time. I was not all convinced that the doctors at the unit were all that well versed on radiation injuries.

The unit here in Eugene only goes up to 2 atmospheres, and Dr Barnes said that it is now fairly standard that all radiation injuries are treated at 2.4 atmospheres. (stronger treatment)

My friend who had the radiation rectal bleeding healed totally with the 2.4 atmospheres.

He is suggesting an additional 4 weeks (20 treatments) at a full 2.4 atmosphere chamber.

It was interesting because Dr Barnes recently went to a conference where the head doctor for this diversified systems ( essentially the company that owns about 200 hyperbaric clinics around the US), told him that it was "protocol" for all radiation injuries to recieve 2.4 atmospheres, yet the unit I went to which is owned by the diversified systems, treated me with 2 (that is as high as they go there)

So anyways, with vacations etc, dr Barnes has been unable to get ahold of the doctor for the portland units, and now he has also gone on vacation, so will likely not be doing anything for the next few weeks at least.

The really cool thing is that in November Eugene is getting a full hyperbaric chamber that goes all the way up to 3 atmospheres for treatment of carbon monoxide poisoning. It will be at Riverbend. So I have to decided whether to wait until November when it would be SO much easier than going to Portland, or whether doing it sooner would mean a better chance of a cure.

I have not written for awhile, I guess I really was getting down about this whole thing, and seeing the doc in Portland really was a waste. So between feeling that I had reached a dead end with regards to the radiation injuries, and worrying about the cancer I have been pretty depressed. However this week things are really looking up, starting to settle.

I went back to Bandon last week, and did a clinic at Heritage place and saw the people who have a hard time getting to the clinic to see doctor, and I JUST LOVED IT. So I think that I will do that every 2-3 weeks. Ken and I will go over to Bandon, and I can do a clinic, and then we can go mushroom picking, or picking up large rocks on the beach.

We performed at Bullards Beach amphitheater on Saturday night and will be again on August 21st. It was a GREAT show. We have also just got word that we will be performing at the Eugene celebration on August 28th.

My garden has been my real joy this summer, I guess last summer I wondered if I would ever have a garden again, and presto, here is a year later and wow.

The tomatoes are just beginning to ripen, they have been kind thus far, in that they have chosen to do it one at a time. The zucchinis are not quite so kind, but I have been creative and managed to "keep up" with them. Now I really know how to grow basil, I have gone out daily now for at least 10 days and picked a large bowl of basil. I have black beans and green beans, all growing like crazy. I harvested on barrel of potatoes as they were turning yellow, and got a measly 6 lbs of potatoes. The second barrel I have done with seed potatoes and it looks MUCH healthier.

I got a great garlic crop, I planted last October and ended up aith a fair crop of garlic (last fall I really did not amend the soil at all, we had just taken ownership of this place and had no tools etc here yet)

Next year I will have to label better. I planted SO many things in the greenhouse and felt it would be obvious which was which, and so this plant that is currently taking over my cattle panels, which I thought was canteloupe, turns out, is pumpkin.

I have 2 productive yellow squash plants, and had a great lasagna last night with zucchini and yellow squash.

Mother earth news had an article a few months ago that said to plant your winter squash where you had harvested your garlic, so I started several types of winter squash in the greenhouse and this time I DID label, but the labels washed off and so I am still in the dark about which winter squash is taking over my previously garlic garden.

I have never managed to grow cucumbers either and they are SO CUTE.

With the peas, I have them growing in shadier places and have been planting them every 3 weeks or so. I go out daily with my little glass container and pick what peas are there, shell them and pop them in the freezer until I have enough for a meal. Since my GI track does tolerate cooked things better, this works better. (we have always just eaten them off the vine)

And peppers are doing great, I have several small peppers just starting out.

I have to say this is all a total amazement to me to see vegetables just coming out of the ground, so efficiently.

We have had many meals of Kale, I think kale is the reason, though I am bleeding all the time, my blood count has stayed the same, I guess because it is SOOO high in iron.

A guy is coming today to put some xtra windows in our greenhouse. For some reason the windows are not on the south side and I figured it would get so much more light with a few more windows, I will try to get some before and after pictures of that.

bye for now

I guess I am writing less often with less to say

Love

janet

jankenb @ gmail.com

oregon country fair!!!

Hi Everyone

Thought I would update you as to my recent visit with the gastroenteroogist, as well seeing the gynecologist.

We went up to Portland on the first of July (Canada day), and my first take home message from my first “second opinion” is not to get the first opinion to refer you to the second opinion. This guy basically read the letter from the first gastroenterologist and really asked me nothing, no history etc etc... That did not stop me from adding my own, but I did leave feeling rather unheard. I have 2 gastroenterology problems. The radiation enteritis, which is the radiation damage to the small bowel that makes it hard for me to eat any food with fiber, I get nausea and abdominal pain, which has gotten worse lately. My other problem is the rectal effects of radiation, which involves rectal bleeding which seems to be getting worse all the time. It is going to need some form of treatment soon, I am just fearful of the treatments the previous doc had suggested.

So this doctor asked me which of these problems is more of a concern to me, and I said that the small bowel enteritis, and it was clear that the OTHER problem is more of a concern for him. He seemed to think the rectal problem needed to be treated soon.

He did suggest that he felt the better test for the radiation enteritis, is a small bowel followthrough, which is a barium xray where they follow the barium on a screen with technology called flouroscopy. It is an older form of xray, used before we had CT scans.

CT scans are just a second in time, so would not show any functional problems, whereas the barium small bowel followthrough will show the function of the small bowel.

So I am going for this test tomorrow in Portland. He has said he wanted to done there where he could go over the films with the radiologist at OSHU. You have to fast for 8 hours before the test and it can take up to 3 hours.

ALthough the treatments he suggested for the rectal problems are the same as the other doctor, and he did admit that the treatment often has to be done over and over again and can cause rectal ulcers which take forever to heal, HE DID say he would work with me with regards to the higher strength of hyperbaric oxygen treatments. However like the other gastroenterologist, he really was not familiar with it.

The thing about getting the rectal area treated with the heat argon, that still leaves the small bowel area, and if I were to get the hyperbarics, it would be treating both areas at the same time.

I will be hearing from him after this test tomorrow.

I saw my gynecologist this morning about the vaginal bleeding. She said it all looked OK, except that the vagina was getting shorter and narrower. It is essentially scarring inwards. I have the dilator and try to use it several times a week, but I guess it is just not enough.

July 9th

This blog is taking me awhile to write, but now I have been for the test at OHSU and I am back.

I have not yet gotten the results back.

We are getting ready to head out the the Oregon Country Fair (OCF) tonite.

I went out to the fair with Mark yesterday and it is totally amazing, the day before the fair begins it is already fully functional. Most of the booths are open and in business.

Ken is working at the university today, so we will be going in after he gets off.

Josh arrived from Canada yesterday and WOW, he is appearing quite "svelt" . Now as I am writing this, he is "off to the fair" for his first real experience there. (he will likely never be the same) I did tell him not to take pictures of scantily clad women without asking them first :)

Our band is playing on the blue moon stage at 11 am tomorrow ( Saturday) and 12:10 on the Shady Grove stage on Sunday.

The weather has been in the 90s for the past few days, something Ken and I have not experienced for many many years. I WILL have to dig out summer clothes that have been sequestered away for the 13 years of living on the coast, seldom even wearing shorts in the summer.

My garden has just taken off in this weather, with my cantaloupe starting to climb the cattle panel trellises , and we have had several meals of zucchinis already.

We have discovered a quite a unique way to use up a lot of zucchini, grilled zucchini pizzas

I use the barbeque to saute zucchini and mushrooms and fresh thyme, and then add a little balsalmic vinegar (I make sure that the mixture is cooked long enough to get rid of most of the moisture)

Then the dough I make into the shape of pizza and put oil on both sides, put on the grill until it is bubbling (about 2 mins) then flip it, and put the topping on the pizza and then tomatoes and cheese and put the lid down on the barbeque and cook for about 4-5 mins (until the cheese melts). I know everyone is always looking for clever ways to deal with zucchini this time of year.

I still have about 70 tomato plants but thus far, none have ripened, I expect that to change over the weekend.

Well this is our dog song "IT IS SOOO HARD TO BE A GOOD DOG"

Hope to see some of you at the fair this weekend

love janet

jankenb @ gmail.com

magnificent morning

Hi Everyone

I thought I would share a few photos of my garden today, and since a few things are not behaving very photogenic today, I will likely share a few more when the GET more photogenic (ie...grow)

This morning, I got up, picked myself a bowl of strawberries, raspberries and picked a few cherries off the tree. I am limiting myself to 4 cherries a day because they have such a thick skin, and the tree is only ripening about 10 a day and that leaves 6 for Ken.

I seem to be doing well with the strawberries and raspberries.....yea!!!!!

There were strawberries growing all over the place here, on the ground in areas they were not getting the best light, so I have been gradually digging them up and planting them in a cocophany of containers, many of which I was going to get rid of.....old garbage bins, unused plastic containers etc. (if you click on the photo you can see a bigger version of it)

I have then stacked them all on this lovely bench that Ken made for our greenhouse in Bandon.

So it is fun to just pick the strawberries standing up PLUS the snails have further to climb to get them.

The potatoes in the first bin look almost ready to harvest, the second bin has a month to go, I figured I would harvest the potatoes and then replant the barrel with a new set.

SO we can have early potatoes now and leave the rest for the fall.

You can see from the photo at the top, how much fun Ken is having with the cattle panels. This particular "invention" is for growing the grapes, to trellis them along. WHen we got home yesterday, there was someone in front of the house taking pictures of it. yea ken

I will try to get better pictures of the 70 tomato plants later when I can ask Ken how to change the settings on the camera. (Ken is working in Bandon today and coming back tonite)

Well I got the CT scan report when I was in Bandon, and it turns out that the doctor who gave the verbal was not the one who did the final read.

The one who did the final read has described a nodular density behind the rectum, that is 2 cm by 2 cm. He says it was also there in January and a bit larger then. He is suggesting a PET scan.

The only problem with this is that the doc who read the scan in January said it was normal.

So when I went the gynecologist in January, and the gastroenterologist they were under the impression it was normal.

I really do not know if there is any significance to this. I THINK my first colonoscopy had a polyp removed in that area that was considered precancerous, but the colonoscopy this time did not show anything. In my thoughts, I am wondering if perhaps I might have bled behind where he took the biopsy and there could be a hematoma there now. ( a hematoma is essentially a blood clot that forms in the tissues and once there it stays there, it just very gradually gets smaller and harder)

I have not heard from Dr Cook about the scan, he IS the one who ordered it. So will see whether he decides to go ahead with the PET or not.

A PET scan is a test that really just is intended to pick up a cancer recurrence early. They infuse a radioactive labeled glucose molecule and it concentrates in areas where cancers are, as cancer cells require more glucose.

I am a bit concerned about this because I am bleeding more all the time, rectally.

I AM seeing the gastroenterologist on Thursday up at OHSU, so the timing could not be better.

I am looking at my options with regards to work here, and there are not any, and that is pretty much OK with me, however I would like to work just a little. This past few weeks Ken hurt his back really badly. He actually had to call in sick to work at the university because he just could not move. He is much better now, but it did scare me a bit because right now we are totally dependent on Ken being able to work. Our health premiums alone are 1100 a month, not to mention our loan payments. We are just fine as long as Ken can work some. (everything will be fine when our house sells in Bandon)

So I am thinking I am going to join Dr Gail McClave with her clinic and do just one day a month, seeing her patients out at the "nursing homes", Heritage place, and Harmony estates. (they are not really nursing homes, but everyone calls them that)

This is actually what I have done for years, and it would be great for me to do it in conjunction with Gail, she is unable to get out to see people at the facilities and many of these people cannot get to her office to see her.

Well back to gardening today. We are going to be in Eugene now for the next several weeks.

Really looking forward to the Oregon Country Fair http://www.oregoncountryfair.org/quick_visitor_guide.php

We are performing there on Saturday and Sunday.

Bye for now

love

janet

jankenb @ gmail.com

Normal CT scan

Hi Everyone

Just wanted to let you know the preliminary results on my CTscan.... YEA

There was no evidence of cancer. Some non specific soft tissue changes in the rectum, which I presume is the colitis/proctitis that is causing the bleeding.

On these surveilance scans they check the chest, abdomen and pelvis....

So I am quite relieved. I will likely have the ca 125 done in one month to see which direction it is going and if is still going up, I will likely go and see my gynecologist/oncologist.

I managed to run 13.3 miles on Sunday, which is a half marathon. It is quite different running long distance and clearly takes organizing, as I am only able to drink small amounts of water at a time with out the cramping, so it was good it was not a hot day, in which case I would have to drink more than my stomach can handle. Over the years when I get beyond 10 miles I eat power bars, but even a small part of one immediately sent my stomach into cramps, so will have to get the "gu"........ which is a thick pudding like energy alternative for long distance runners.

I used to use it years ago and got so sick of it I switched over to powerbars and have always been able to eat them whilst running.

We are playing at BREWED AWAKENINGS on Friday night at 6:30

Ken and Mark and I, and we are being joined by Jaime Sterling and Rick Franke.

We had our first zuchinni from our garden two nights ago..... likely the first of "too many"

Love

Janet

jankenb @ gmail.com