My first anniversary

It was one year ago today that I had my radical hysterectomy for endometrial cancer.

The pathology a week later showed it was Stage 3C with positive intraperitoneal cytology.

I was mortified, my life turned upside down.

Anniversaries in Cancer patients are extremely important, because the further you get away from the initial treatment the better are your chances that you have succeeded in a cure. With endometrial cancer recurrences are rare after 3 years.

I worry less and less about recurrences, but the thoughts do occasionally come back.

It is extremely hard to imagine the past year without the incredible support from Ken. I cannot imagine going through this alone.

This blog has been extremely helpful for me, being able to write down my thoughts, what I was going through, somehow made it easier, it gave me a focus on many of the more difficult days.

Although I have often wondered why anyone would want to read all about what I was writing about, I have to say I am so appreciative for those who have followed this story, my story, along. It has made me feel good to know people cared about what I was going through.

I guess now I am writing just because some people seem to enjoy it, and also because what I am going through now, I believe, is something I want everyone to know about. From all I have read about hyperbarics, this very well could be the medical panacea. I am wondering if a few years from now, we will be treating all stroke patients with hyperbarics. There is even talk of post heart attack. The thing is that it all makes such clear sense physiologically.

The treatment with hyperbarics, of "traumatic brain injuries", one of the main injuries from the IEDs in Iraq, is showing great success at improved mental functioning.

Anyways, a big day planned, off to the "chamber"

Love Janet

jankenb @ gmail.com

week 2

Hi there

Finished my 5th treatment yesterday. I have to say the whole thing is like a plane ride, only backwards.

I have the strangest feeling in my stomach with each treatment. It is a lot like hunger pains only different. I usually eat prior to going in, so it is not that.

The feeling seems to go away as I emerge to the regular atmosphere. I also notice an odd feeling in my lungs, not really a pain, just a hard to describe feeling that goes away within a few hours after the treatments end. WHen I am changing into my clothes at the end of treatment, my skin has this whole "lacework" of blood vessels, I gather from the high levels of oxygen.

I sleep incredibly well over here, not sure if that has to do with the treatments, or a different bed :)

I am still finding if I eat whole wheat toast for breakfast I have nausea all morning, if I eat white bread toast I am fine. I really am not expecting to see any real improvement until after this second whole week. I am going to start eating a regular diet, just so I know if there is any improvements.

I have to say I am feeling incredibly good about life these days. I feel certain that this problem will go away. I am very excited about my gardening projects. I have Basil, Tomatoes and Peppers coming up in my greenhouse flats and plan to "nurse" them along until April when I will plant them in the garden. I am very excited to perhaps have a garden that will get WARM enough that these things might grow in the garden.

Ken and I are so excited to have this little house, a total escape from work, it is like we get to go on holidays every 2 weeks.

Holding true to the Ken and Janet form, we have a bathroom half finished, a garden half finished, a paint job half finished in the living room.

Chewy has made friends with the rather large squirrels here in Eugene .... NOT! He just has trouble making new friends. Something about a large black dog barking and snarling that is just not endearing.

I will be here in Eugene for the next 10 days, Ken goes back next Monday for work.

The music is also going well, in that we have several "gigs" planned and are really starting to have fun with that and I am even considering the next cd,,,.....did I just say that..... I did promise myself after the last one NO MORE CDS. .....

So life is good.

I decided while I was at it to treat my lower lip with the efudex (5FU) as the lower lip bears the brunt of the sun, and I often have crusting of the lower lip. (I did call and ask my doctor about it) I did it for 7 Days and the lower lip just exploded. It got swollen, crusty, with bleeding and yellowish drainage. WHAT A MESS. I decided to stop treatments the day I started the hyperbarics. The lip continued to get worse for about 4 more days. Now it is starting to get better, healing along the edges, but the central area is still open, bleeding "pusy", but normal lip is starting to emerge. This has been much harder to do that on the face. But cancers on the lower lip are SOOOO common. Might as well deal with it all now.

Once I finish the hyperbarics I intend to start treating my arms and shoulders, they have definately bore the brunt of the sun.

I watched two episodes of criminal minds yesterday that were about a serial killer/pig farmer in Canada that fed body parts of his victims to his pigs ( I had to hide under the covers :))

Canadians out there...... does that sound familiar??

bye for now, love janet

jankenb @ gmail.com

valkyrie

Well my 4th treatment is this morning and then Mark (our drummer) and I are heading back to Bandon, we perform tonite at the Green Spot in Coos Bay opening for Anne Feeney.

Had a really rough day on Wednesday, the nausea started during treatment and was fairly severe all night. I think it was unrelated to the treatment, moreso something I had eaten at lunch ??

The real problem I face is that I do need some fiber, or else I get terribly constipated, which makes everything worse. AND then when I have some fiber, I get terribly nauseated and the crampy pain. I take zofran for the nausea when it persists, but zofran causes constipation.

I take half of a percoset when the pain persists, but it too causes constipation. AND I cannot increase my fiber to deal with the constipation because that just makes the pain and nausea worse.

So yesterday morning I tried a liquid diet and that seemed to help .........but then I got hungry and by bedtime I was nauseated again, eating pretzels.

They say it takes a good 5 solid days for the angiogenisis to begin to start the healing process, so will not be looking for improvements for awhile.

Yesterday I decided to watch a movie during treatments, and got Valkyrie, a 2 hour movie, and my treatments are 90 mins. FUnny thing, at the end of 90 mins I decided I did not want to watch anymore anyways. (just got to the point where they all found out that Hitler was not dead)....

Today I have amadeaus to watch, perhaps a bit ??lighter??

Hope to see some of you tonite

LOVE

Janet

jankenb @ gmail.com

number 2

You know since this all started a year ago, every step of the way, I have this cross coverage of people who I have something in common with.

First of all, the hysterectomy for the cancer, well on the one hand I have the commonality with those with cancer, and those who have had a hysterectomy.

Going on chemo I then had a commonality with all those of MANY different kinds of cancers, as the chemo is exactly the same, or very similar with many cancers.

With radiation, those with cervical cancer, endometrial, anal and prostate cancer all have pretty similar fields of radiation. With the radiation enteritis, I do have the one friend who had/has it.

Now with hyperbaric oxygen I have something in common with scuba divers.......

like KEN, I can talk about the feeling going down, and then the feeling coming up with the whole ear situation.

Finally something I am going through that Ken has first hand experience with.

Not that it makes a huge difference, he is always pretty darned empathetic anyways.

Second treatment today, had a lot of nausea, sure wished I could have taken some of my pills into the chamber, but you cannot take anything in. I take zofran for the nausea, and often get it after I eat. Well sometimes after I eat, I just never know.

Scott, the tech, always asks how it went, I told him about the nausea, and he said it was a sign of oxygen toxicity. I told him I do have a lot of nausea anyways, and that I gather it is just from the enteritis. He seemed to think that was more likely, I got the feeling oxygen toxicity at 2 atmospheres is not very likely.

I wonder if they would mind me taking in just one little pill.

You see it takes 15 mins to get down to the 2 atmospheres, and it also takes 15 minutes to come back up. So its not like you can open the door and get something.

I am on my own this week, next week Ken will be here, maybe he can take a picture for the blog.

My Basil and Tomatoes are big enough to transfer them into the little pots, so spent the morning gardening. I wonder how plants would do in chamber?

The good news today is that the tech was able to reschedule my time slot for Friday at 10 am which will give us lots of time to get to Coos Bay for our show at the Green Spot opening for Anne Feeney. We are playing at 8 and it would have been hard to make it in time with my regular time spot of 3pm.

Bye for now

Love

Janet

jankenb @ gmail.com

HBOT number 1

Well, just a note on my first treatment today.

It actually turns out that Feb 16th was the day I got the phone call last year to say that my biopsy had been positive for endometrial cancer. I guess it was fitting for these treatments to begin today. The visit started with a few more questions, papers needed for the insurance company.

The tech then went over the details of how it would feel going "down". Since it was my first time today, he talked to me throughout the whole process of going down to 2 atmospheres. They do it slower the first time as well, so as to get you used to the process.

Basically I changed into a gown, and he wrapped me up in some flannel blankets ( the oxygen coming in can be cold). He then moved me into the chamber, and closed the door.

He said that the top of the unit was a bit deceiving, and he was right. The unit actually looked much larger from the inside than it actually was. I did have enough room to roll over etc, but not enough to actually sit up as I had expected.

Once at 2 atmospheres, my lungs DID feel sort of odd, but I decided it was not worth reporting as it was not pain, and it was not shortness of breath. There was no clock visible so it was hard to know where I was at in the treatment, but the second Law and Order on netflix ended just as he was opening the door at the end. SO I guess that will be my time gauge. 2 crime detective episodes.

I was very glad to start today, felt quite sick all morning, made the mistake of having freezer leftovers last night that contained brown rice. Even small amts of fiber leave me nauseated.

I am really hoping that this the beginning of the end of all of this stuff.

Sometimes I figure I really should just be glad to be alive and leave it at that, .......perhaps I just want to have my carrot cake and eat it too...

bad joke

Anyways will keep you posted

Love

Janet

jankenb @ gmail.com

concert tonite

No pictures today

My face is clearing up fairly well, just in time for our big show tonite at Brewed Awakenings.

We will play from 7-9 PM Jaime Sterling will join us on violin for part of show and

Rick Franke on harmonica and mandolin for second half (I know it is pretty unbelievable that he can do both......)

Someone told me that they were advised to get reservations, I find this hard to believe about one of my shows, but must pass that on.

OH and I should mention, we DO have a new song. I finally got it together and DID IT.

It is called "It is SO hard to be a good dog"

Any guesses who it is about? Well the "subject" will NOT be there, something about food and the health dept.

From the few accounts, (only a few have heard it), it is going to be a big hit.... I should add that it was a dog lover who said this. (as opposed to a cat lover)

My treatments are NOT starting on Monday, as previously thought, turns out that I got bumped to Tuesday. The lady in my slot (3pm) missed a day in her treatments and so has to "make it up".

I do not remember all the details, but the guy who was explaining it all to me said something about the hyperbarics thickened secretions etc etc etc....and that you could not have treatments if you are sick with a cold. OF COURSE I will find out all the details about that.

There was so much he went through, so hard to remember everything. So I will once again need to be careful about colds.

Hope to see you tonite, come out and see Ken looking like he has been clawed by a cat......

Love

Janet

jankenb @ gmail.com

Good to go

Well this is the closest picture of the unit I will be treated in.My visit to the unit yesterday was very interesting, I was seen by several people, each of them wanting to take a picture, WHen I finally convinced them that there was nothing to take a picture of, at least nothing that they would be able to take a picture of.....at least with THEIR camera, they just took a picture of my face, They wrote out 8 numbers and I held the numbers below my face and they took a picture of my face with the numbers...(most of what they do is wound care)

Now I am pretty sure this was the hyperbaric unit, perhaps we got lost and ended up at the jail ??

I was examined by the doctor ( I will have to say it was the most in depth exam I have had by a doctor in the whole entire year), he then told me that my insurance had approved the treatments in total. What this tells me is that the insurance companies have seen the studies AND that they have paid the bills in the past of people with radiation enteritis who did NOT have HBOT treatments, and it is worth their while to treat this early.

So my treatments start on Monday, and they will usually be at 3 pm, they like to keep t

hem at the same time. They also like to have the 5 days in a row, as the formation of the new vessels takes several days in a row to get going and to take too many days off, you go backwards too many days, and your treatments need to be extended for longer than 8 weeks to make up for it.

I can watch TV, or dvds of my choosing, but the person outside the unit manages them for me.

So got to find a TV series that Ken and I have not watched during chemo and radiation.

I have much to learn about this whole process, and much to pass on to you

Bye for now

Love

Janet

speaking of skin cancers

I have such a great story.

Last week I was extolling the virtues of Efudex to a friend with much worse sun damage than me, and she showed me a lesion on her arm that had been there less than 2 years and had recently changed.

I took one look at it and knew it was a melanoma.

The history and the way it looked. Then I thought it had to come off right away, and knowing the system, that she would likely see her doctor, in several days and then wait for a consult etc etc etc, not to mention the costs, which might delay things further, and for her to get a day off work etc etc etc, I was suddenly reminded of me a year ago, I saw this doctor in the clinic, she heard my story and said, well why don't we just do the biopsy right now. For which I will be forever grateful, in that likely by the time I had gotten another day off and to find a day I could schedule with her etc etc it might have been some time before I got back to see her. We did the biospy that day and my cancer was picked up.

Thinking the same for this friend of mine I said, why don't I just take that off right now. Well it turned out that we did it the next day. " NURSE KENNY" provided comic relief while I "operated" on her arm. It all went quite wonderfully, the lesion was about 1.2 cm.

Well I called pathologist yesterday and it WAS A MELANOMA and it was in situ, which meant it had not invaded at all, and that all the margins were clean, which means that the procedure removed a complete cancer. Gawd some days I just love being a doctor.

I have included a picture from the internet that looks pretty much like her lesion looked.

Ken and I are off soon to see the wizard, the wonderful wizard of oz........

Wait a minute, I am not in Kansas....anymore

We are off to see the doctor, so I can get a new small bowel. :)

It is at the old Willamette-Mackenzie hospital on G street. I really have to wonder about a city (Springfield) that has never had anyone worthy of having a street named after them, so they just use letters....sad...

Bye for now

love

Janet

jankenb @ gmail.com

Feb 9th

Over here in Eugene

Have put tomatoes, peppers, spinach, basil, cucumbers all in indoor flats, and beets in the garden.

I figure it is too early and I will likely need to replant them.

I figure if I am going to be here for 8 weeks, I want to do some gardening.

We are planting blueberries and a pear tree today, and I am hoping with the hyperbaric treatments I can eat pears and blueberries some day. Had a Kale and tomato pizza last night and was up half the night with burning pelvic pain. I just cannot get away with any fiber. Kale is not much higher than spinach, but I guess, still too much. When I get over a certain amount of fiber, I start bleeding. It just seems that a part of the small bowel cannot handle this at all.

My appointment is tomorrow morning and I am quite looking forward to it, I am a bit anxious as well, still do not know if my insurance will cover the treatments.

My face is feeling a lot better today, perhaps this is the turning point, it is hard to smile :)

Ken is starting to "light up" but it is still pretty clear which one of us used more sun screen......

Bye for now

Love Janet

jankenb @ gmail.com

and todays

Although this blogging may look easy, it is not easy to move pictures around the page, the previous picture is yesterday and this one is today

The very worst sunburn

The very worst sun burn I ever had was back in 1975. I was in the KamiOverlander raft race.

I was in nursing school and the race went from Clearwater to Kamloops stopping for the night in Barrier. The race had several categories and you had to make your own raft. We always went in the theme category, and the first year we went as a MASH unit, and the second year as a floating whore house,

The first year we made the raft on land by stringing together the logs with with very thick wire. We had not actually put it into the water until the morning of the race and it was then we found that it was not very stable and we were partly in the water all day. We were on the water from sun up to sun down, not a spit of shade and (of course) no sunscreen. We dressed up in OR greens. At the end of this race my face was so burnt that it became all thick and brown and crusted. I have to say that perhaps I am suffering some of the effects of that now with this effudex. I thought I would start taking daily pictures just so you can see how the inflammation works

I started using the cream about 4 weeks ago, I started mainly putting it on the right side of nose and right upper cheek, after two weeks I stopped, about 3 weeks ago I started putting cream on the left side of nose and upper lip and stopped 3 days ago. The right upper cheek is starting to heal the lip and left side of nose are just getting more inflammed at this point.

Ken started using it about 10 days ago and figures he will be "peaking" just in time for our show on Friday night at Brewed Awakenings. As you can see from my upper lip, there will be NO WHISKERY KISSES from Ken for awhile.

I can tell you are just dying to hear about the second year "floating whore house".

Well by this time we had really learned that the raft needed a bit more structure, so the second year it was much more stable, with both boards and wires holding it together. We even had an upper floor, we had swinging doors, saloon tables and gingham table clothes.

It was quite timely that we went with the floating whole house theme, because that year all the other theme rafts went as pirate ships.......

So they were hollering out requesting " a little rapin and pilaging ...."

Needless to say we won the theme category.

Like all of my stories, this one does have a sad bit to it. The Kami Overlander raft race, went on for several years, but ended a few years after this one. Many years a few people died in the race, drinking too much and falling overboard. It was not that it was a rapids type of river, but it had many log jams. Apparently what would happen is that a raft would come up against a log jam, someone would fall off and the under current would drag them down under the log jam.

I am a little proud that I participated in such a dangerous sport :) I am usually a scaredy cat.

Scuba diving, rock climbing.....NO WAY.

I can just imagine all the sports Ken would have done if he had married a more reckless girl.

Ken took scuba diving when we were first married, and at the end of the course when he had to go for his ?? "deep water dive" we had to go to Jasper for him to do it.

All the other wives sat in lawn chairs watching for heads and bubbles to come up. Me.... I went shopping.

I also fall off bikes a lot, we used to have tandem bikes and we each had a kid on the back, and our two sons fought for who had to ride with Mom. I do like to have my feet on the ground.

Speaking of scuba, I may be getting a taste of it soon, with the hyperbaric treatments. I will be seeing the hyperbaric doctor on Wednesday morning, so will find out soon.

Will be keeping you posted

Bye for now

Love

Janet

jankenb @ gmail.com