Liver Biopsy for Jeanne; Maybe no radiation for Sarah

Jeanne is scheduled for a biopsy of her liver on Thursday, Jan 4th.

Please pray that she is healthy enough for the procedure. Today she is not feeling well.

The purpose of the biopsy is to remove a piece of a tumor, then to test/examine it for the most effective chemotherapy drugs.

Sarah is probably not going to need radiation treatments. Her oncologist discussed the case with a colleauge, so he is more confident that only the chemo is needed. We will know for sure after her final treaments in January, and a CT scheduled in mid-Feb.

Thank you all for the presents, cards, food, and kindness this Christmas season.


Thank you, and Happy New Year,
Pat

This week...

Just a quick update here...Sarah's echo came back fine, as did her pulmonary function test. Her oncologist has been very considerate regarding not wanting to radiate the mass that's in her chest, as it leads to a higher incidence of cancer as an adult. With that said, he was looking for a clear PET scan with nothing lighting up, and it was indeed clear last Monday. He wanted to be able to palpate no nodules, and he could not. He wanted to see a 70% reduction in the mass in her chest. But, there was only a 60% reduction in it. Argh! It is so close that he was going to spend the week discussing her case with colleagues to see if we could add a couple of doses of a different type of chemo after she's done with the next couple of rounds rather than radiate. It would not be the typical "standard of care" treatment, but he does believe that she's had a good response, and that the "cure" rate is still very, very high for Sarah. That's the good part. What we wouldn't want of course, is for whatever path we/they choose for her, that she would relapse later, and need heavier chemos along with radiation.

So, that's where we stand with Sarah. We're going to OHSU tomorrow for chemo, and he should let us know what he thinks is the wisest choice in regard to the next step for her. If he suggests radiation, it will be for 2 1/2 weeks every day for 5-10 minutes per day. I'd prefer to get it done at OHSU as they treat more pediatric patients up there, and that feels safer to me.

As for my stuff, the oncologist had me take some extra scans to check them against my CEA numbers, and I had no new lesions. One may have been a tiny bit bigger, but they couldn't say for sure. That was good news. I'd expected an increase based on numbers, but I've been feeling good; no cancer side effects, only chemo side-effects. We will come home from OHSU on Monday night, leave Sarah with siblings and Zofran (a wonderful anti-nausea drug) then on Tuesday, Pat and I will head up to Fred Hutchinson Cancer Center in Seattle, WA. I have an appointment with a medical oncologist Wednesday, and we'll return home Thursday. Fred Hutchinson's is a world reknowned cancer center. I'd like to see if they have anything inovative to try with the liver. I've heard they have wonderful care, and you can get results of scans and blood work the same day. That would be great. (As long as the results are good :D)

Thanks for "listening", and many blessings to you this Christmas season. Be sure to pass them on to others,too. If you need a reason why, you can go to www.globalrichlist.com, and compare yourself to the rest of the world.

Lots of love to you,
Jeanne

Thanksgiving

Thanksgiving. Is that something we do when things go the way we want? When our desires are met, and all is right with the world? While I'm saddened by that fact that I've got more lesions in my liver, and that this new chemo has not been effective, (thus far-my CEA counts are still rising.) I look back over the last two years (plus a little bit), and a few things come instantly to mind.
1) I'm still here, and functional. (Depending on who you ask, and how the day’s gone.)
2) We've been shown an endless amount of love, prayer, and physical support by all of you.
3) Sarah has handled her disease well, and looks like things are going well for her healing. She will be getting a pulmonary function test and an echocardiogram this Thursday, and a PET and CT scan Dec. 11th to check the progress of the cancer. We should know results that day. We are hoping for no trace of the lymphoma, otherwise she’ll possibly need radiation, which could raise her risk of other cancers later to 1 in 3.
4) The other children have not turned to unhealthy means as a coping mechanism, which would be easy for them to do. Who wouldn't want to take an "escape route" with all of this?
5) We've had a few people who we call on for counsel in different areas, and so far they haven't totally rejected us due to burn-out.
6) Thanks to all of you, our debt load has been reduced considerably. Thank you.
7) I'm still here and functional. I still have days where I wake up and think "Wow-3 brain lesions, 11 vertebrae with lesions, dozens of lesions in my liver. My arms and legs still function, I can cook dinner and do laundry. Praise God for being able to load and unload my own washer and dryer. If I were in a different country, in a different time, or with different care, it may not have been this way.
8) People tell us that we are an encouragement to them. This still astounds me, because I don't know what we're doing, other than traveling to medical appointments and cooking food, and doing laundry :D It does make me feel good to know that if someone else is just starting their journey on this arduous road, that we could be of some benefit to them. It helps it to not be as lonely, as well as giving meaning and purpose to our lives.
9) I'm still here and functional. Sorry to be repetitive, but that's really a big deal to me. I want to see as many of my children's birthdays as I can. AND...this is my third Christmas since I began dealing with this! That's great. I hope for many more. Never denounce getting older. When you have to fight hard for each year you have, it's harder to take it for granted.
10) Pat and I are still married, still somewhat communicative, (when we have time) and love each other. It's very hard to be in a place where I feel like such a burden to my family--financially, emotionally, energy-wise, and he has shown much grace and patience with me getting mopey occasionally, and lately racing for the porcelain bowl. I tell Pat that "Turn-about is fair play" from when he was sick with Sweet's Syndrome years ago, and had some other stuff going on. I think maybe his turn-around time may be coming up, but don't tell him!!!

So there are 10 of the many things that I'm thankful for this year. I think none of them would be happening without the Lord's leading and grace. He has been so faithful.

Isaiah 42:16 says "I will lead the blind by ways they have not known, along unfamiliar paths I will guide them: I will turn the darkness into Light before them and make the rough places smooth. These are the things I will do; I will not forsake them." I've had this promise posted on our refrigerator, along with the menu, or shopping lists. It continuously speaks to me about our situation. We are so very blind-in our health care, in our future, for every breath we take, how long we will be on this earth. I can only take responsibility for my own walk with God, how I spend my time, how I think my thoughts and carry out my actions. From the beginning my thoughts have tended toward "Have I loved the people around me enough?" Do those I know, and those I encounter really KNOW that I care for them, and that the Lord loves them through me? It's a huge commitment to say that you are a Christian. There is a price to pay, and it is with every breath and thought. It's not about political party or gender or whether I wear glasses, or Daniel has Down's Syndrome. It's about how faithful we are with what we've been given and what we do with it. I hope that I will be considered at least somewhat faithful, as we travel this path. This path that is lit only enough to see one step, and sometimes only one minute at a time. We are all somewhat blind in this life, and need continuous leading and wisdom. May we be humble enough to reach out beyond ourselves, and share what light we do possess with those around us. In return there is unimaginable freedom, and a family for eternity.

Corvallis Gazette-Times article

Check out this article in the local paper.

http://www.gazettetimes.com/articles/2006/11/18/news/community/2loc03_blog.txt

and yet another view of our backyard

Thanks to Sarah for this lovely panoramic of our backyard.
It's a bit warped, due to my lack of totally cool, techy, expensive camera equipment that could have, I'm sure, remedied this. Sarah does, though, admit that it (my current camera) is cool when interrogated and she does make a habit of borrowing it and filling the memory card with all sort of interesting photos for me to discover. Anyhoo, it's a decent photo and gives the viewers a taste of the reality. :-D
(click on the photo to enlarge to life size)

November news...

Much has happened since the last posting, so we will just hit the highlights. We try to keep this site current, but events of late have occupied, and exhausted us in many ways.

In September and October, we were blessed by some amazing demonstrations of giving by folks.

THE BACKYARD
I think my sister-in-law said it best when she said she “was astounded” when she saw our backyard. “You have some really good friends!.” You can see the photos in earlier blog postings. Even if you did not see the yard before, (sorry, we will not post photos), you cannot help but be impressed.

There was a tremendous outpouring of help. The yard was the result of many dedicated persons and families, generous donations from businesses, and individuals, and the willingness of everyone to give of themselves. We want to thank everyone, and especially those that coordinated all of the efforts. Our church, Suburban Christian, its pastors and leaders, were also supportive in many ways. We also recognize there was a huge amount of behind-the-scenes work by others, some of whom we will never know. THANK YOU!

THE DINNER
Our friends, Susan and Kim, organized a dinner/fundraiser on our behalf*. It was held at Le Bistro, in Corvallis. It was a special evening. The restaurant was filled with people, some of whom we did not know, gathered to share excellent food and great company. We want to thank the people that came, Le Bistro’s owners and chef Iain, and the following businesses for their donations: Ocean Fresh Seafood for the Ahi tuna, Lemma Wine, and Le Patissier for the pastries.

MORE CREATIVE WAYS to help
Susan has also set-up a web-based auction site. (What will she think of next?) There will be a Papa’s Pizza fundraiser on November 20th. Bring a flier, and Papa’s will donate 50% of each purchase to our account. (see Susan’s web site address for flier), and more things to come...stay tuned.....

http://helpforafamily.blogspot.com/


Medical Account
We established a different and separate medical account at OSU Credit Union. If a person wants to contribute, one needs only to go to one of the branches, and ask to make a deposit into the “Hazleton Medical Account.” You should not need the account #.


I mentioned above that events have kept us occupied. In a nutshell, the latest CT scans showed re-growth of the cancer in Jeanne's liver. She has started on another chemo, (this is the third), but we are not content to assume this will work for one year, like the rest have, before we have to switch. So, we are seeking, again, other options.

Sarah, by the way, is doing well with her treatments. This month she will start round # 4. Two more after this! She’s had excellent care from OHSU, and we’re glad to be so near them. She will test her mettle by singing a solo at all four church services this weekend. Her mom won’t.

Nicole and Valerie are recuperating well from their car accidents. Valerie proved it by playing her violin for four services at church one weekend, and Nicole has been able to lift more weight, and has much more range of motion. Thanks Dr. Sorah, chiropractor, Margaret Bartlett, P.T., Dr. Liberatore, and Karyn, L.M.T.

If you see Daniel, be sure to wish him well in his upcoming State Special Olympics swim meet. Robert has started archery again, with a new bow (supplied by his 4-H leader, thank you Vern!)

Thank you, and God Bless,

Pat and Jeanne

*You may recall I was not too thrilled with the idea of public fund-raising. In short, I changed my mind.

THANK YOU!!!

A huge thank you to all the friends who put so much time and energy into our beautiful backyard makeover!!!!!!!!!!!!!

First how, now When to help...

In the last blog I wrote different ways that people could help, and I think some of you took that to heart judging from the balance in our OSU account. Thanks a LOT. We went through some $ this month catching up with health stuff. The Naturopath gets back from travels soon and I think it would be good to have an early boost of the IVC because of the amount of stress. Two cancers, two car accidents, Pat sprained his ankle and I fell walking and bashed my knee. The family joke is that our 10 year old is the only one holding it all together around here!

As far as additional help--the church is taking on the fence building & yard revamping project and it is slated to begin Friday, September 29th. The idea is to make it easier to maintain and more peaceful back there. (Read: less ugly!!) Steven has had some donations from the community for supplies, and Quiznos is even donating sandwiches for dinner. He is looking for laborers to help take down the old fence, put up the new one, and also take old plants, etc. (like the lawn)out of the yard. They'll be doing a lot of stuff that we don't even know about yet, so if you want to get in on that, please call Steven at the church office at 541-753-2802. He is also accepting financial donations for this project I believe.

Sarah goes to OHSU this Monday for her next cycle of chemo. She, Pat and I will go up on Sunday afternoon and return Monday evening after the 6 hour day of infusions. She'll have a chest x-ray to check progress at about 8:30 am before the fun begins. She's been a trooper. She's experiencing all of the hair loss issues, and we were told of a wonderful foundation in Eugene that provides wigs (ooops...it's a "cranial prothesis") specifically for teens. They pay for anything that insurance doesn't, and their goal is to provide these for any teen who needs one. It's called the Angel Hair Foundation, if anyone ever has such a need. We haven't received Sarah's yet-we just began the initial process to get one, but the person that I spoke with said that her daughter went water skiing with hers. Sounds good to me...

I had a check up with Dr. Kenyon a bit ago, and he could still find no external signs of cancer, so we're hopeful. I think I'm due for scans again in October. In the meantime, I'm trying to keep stress down (heh heh), take my pills, powders and potions, get acupuncture, massage, and take Epsom salt baths. It would be easy if that were all there was to do. A dear woman from church is coming over once or twice a week to help out. It's a great boost when she comes-she's full of energy, smiles and prayer, and has willing hands. Helps me stay a little more sane.

Well, thanks again. Call Steven if you can be available to help with The Yard in any way.

"We are hard pressed on every side but not crushed;
Perplexed, but not in Despair;
Persecuted, but not Abandoned;
Struck down, but not Destroyed...
We who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body." 2 Corinthians 4:8-11

Love you,
Jeanne

Ways to Help

The reason for writing this particular posting, is that many of you have wondered how you can help us. Lots of you have figured out creative ways that have been extremely useful and/or fun. We feel a little overwhelmed with a full-on fundraiser at this time, but we are not adverse to your assistance in other ways.

If people would like to give, or have questions regarding what, how, when, etc., you can contact the Hellestos at bradandwithe@juno.com. Our friend Witherly will have a current list of needs, wants, etc. She has the credit union account number for financial donations, and an updated list of other things we typically could use. (The most current list is included below.) Please don't feel confined to this however. We've received tickets to the movie theater, house cleaning, dinners out, and other fun things. We can get caught up in our own little world, and it can help to have it expanded.

So...here's the list as of September 5th, 2006...

Financial donations: An account has been set up at OSU Credit Union. You can go to any branch, and simply tell them to deposit into our contribution account. This money goes toward medical bills, travel to appointments, co-pays, alternative treatment (supplements, acupuncture, IV vitamin C, herbalist and other consultations, etc.)

Meals: are being coordinated by Lillian Edmonds or Denise Cipolone. You can contact the church office at 541-753-2802 for their phone numbers.

Gift Cards are welcomed...we frequent the following stores:
Safeway - gas
Fred Meyer, First Alternative, Bald Hill Farms, Winco
Trader Joe's (Portland/Eugene), or Whole Foods (Portland)
Local or Portland restaurants, preferably ones with organic foods

Labor: Steven Bjork is coordinating a revamping of our back yard and fence re-building. You can contact him or Sue Brim to participate. The church office will have their numbers.

Mechanical Skills: Car or appliance repairs are occasionally needed. If there is a person that is willing when the need arises, we'd appreciate the help.

Fun Stuff: It's been difficult to justify the time or money to do fun family activities. Admission passes to places like the Zoo, the Aquarium, OMSI, or some concerts (Not of the Madonna or MTV variety) would be well received.
We were just given a weekend at a friend's coast home, and Pat and I realized we haven't spent any time away together, that hasn't been cancer related, for almost two years.

Thank you again.

Sarah, Sept update

One reason we created this blog is to keep you in touch with our family and with my cancer in specific. Since our daughter Sarah's treatment is happening in tandem with mine, we can keep folks updated with hers as well.

Sarah, our thirteen year old, has had her 2nd dosing of chemotherapy now, and is not QUITE as chipper, but is hanging in there. The plan is to go to OHSU for the first dosing, (the 1st Monday was August 21). The 2nd dose, which is 3 different drugs, happened the 2nd Monday, Aug. 28th in Portland. Since she tolerated the first time ok The second dose can happen in Corvallis. She was on oral Prednisone for 2 weeks, and an oral chemo drug for one week. Now, she gets two weeks off with no drugs!! Two weeks on, then two off. She has to get her PICC line dressing changed weekly, which is a real drag removing tape, cleaning around the tubing, and replacing the tape and gauze so nothing can get in there and provide a host for bacteria. We're glad that we can do that in Corvallis. If the clinic wasn't tired of Hazletons after 20 weeks of one-day a week of Jeanne and Pat, we can really test their mettle now, by adding even MORE to their already crazed weeks!!!

And for those that didn't know, Nicole, our 24 yr. old was involved in an auto accident and is in some physical therapy for that as well. She's making progress as long as she doesn't overdo it. That can be a problem :D

And the latest update, as of Sept 7th, Valerie, our 21 year old, also recently was in an accident, and her car was totaled. She went to see a doctor as a precautionary measure, to check for injuries. So, hopefully there will be nothing long term to worry about.

Sarah

The basic facts:

The tests confirmed Sarah has Hodgkin's Lymphoma.

Sarah will be started chemotherapy on August 21st at Doernbecher Hospital in Portland, Oregon.

Doctors are confident that this can be treated and cured.

I understand that we sometimes wrestle with God, but I am just tired of getting pinned.

Pat

"Adventure"...not the thrill it used to be.

Well, we had a short lived exciting time when my scans returned pretty clear. The next day I took our 13 year old daughter to the doctor to check out a couple of lumps on her neck. She recommended a CT scan of the neck area. The radiologist who read it recommended a second CT of the rest of her, and the results from that indicated a possible lymphoma. She had a biopsy two days ago, and the preliminary results are that she has "Hodgkin's disease, nodular sclerosing". This is supposed to be a relatively easy cancer to treat, with a very good outcome. That's all well and good, but frankly, we're just a bit set back with the news and wondering what's up with this area we live in-the air, the water, the soil...one of our neighbors' children had a serious brain tumor when he was very young, and a woman across the street had colon cancer long ago. Maybe it's only coincidence, but it seems like a lot to me.

I wish there was something cheerier to print, but this is what it is. We have an appointment set up at Doernbecher Children's Hospital in Portland for this Monday at 2 pm. so we'll discuss protocols and staging, etc., if they have all of the information they need. We can at least get it started. Jonathan, the herbalist, and Tim Murbach, the ND, have her information, and can help us stay on track.

That's about it for now-we're going to hit up the County Fair for a little bit today, before and after resting a bunch. Sarah got her drain from the surgery out this a.m., and gets stitches out next week. "What I did on summer vacation..."

Well, it's been real-as they say. They never say real "what".

We'll keep you posted.

Blessings,
Jeanne, Pat and the kids

July Scan Report

Today the fun began with a dose of Avastin, followed by an Abraxane chaser. Then a bit 'o lunch and an appointment with the oncologist...who said...

That my brain has the tiniest bit of one tumor that just needs to be sloughed off. It is inactive, and not detectable via the naked eye.

My bones have new calcium growth over the old lesions, and no new lesions have formed, and...

The Liver is completely free of tumors!!!!!!!!!!! It's a little early to say "Yes, it's remission"-it was at about this time last year that we thought that, and the 2 inactive lesions in the liver took off and began making babies like bunnies. However, this is the best things have ever looked on scans.

My CEA numbers had been increasing slightly, and Dr. Kenyon said that the Avastin seems to be causing a little havic with people's counts so we can't use it as a truly reliable tool at this time. For a long time, it was quite reflective of what was happening. Evidently the Avastin can make the number lower OR higher than what would be revealed in the scans. I'm grateful that mine is what it is!!

My white blood counts are quite low, so my chance of infection is increased a bit right now. I'll have to be careful, and increase the herbs to strengthen my immunity. We'll try to keep everything "medicine wise" as it is at this time, to con't. to stay on top of things, and maybe wean off later if things stay stable. We'll see Dr. Kenyon in 6 weeks, and have more scans in another 3 months.

Thank you thank you for the prayers. Praise God for this bit of encouragement!! What a huge deal. And thanks to the woman at Coldstone Creamery who gave me a dish of free ice-cream because she was excited for me. (Honest, Jonathan-I've never been in there before, and it was only to celebrate. :D And Pat and I shared it.)

So to end the day, we went to see Superman Returns. Wow!

Thanks, and God Bless,
Jeanne H.

Summer Scans...oh boy

Well, the break was nice while it lasted, but all good things come to an end, they say. Dr. Kenyon is back from watching the World Cup Soccer Games in Germany, and wants to check out the old liver again, along with the brain and bones. It must be tough, being in all of the hub-bub and thrill of the crowds, the athletes, the food, etc, then come back to these quivering lipped scaredies who want to hear only good news. My CEA counts aren't terrible, they've crept up to 9.2 as of last Thursday; as a comparison, they were 22 in December. So, it's not awful, but the trend is for them to go up at this time, and even though it's poking along, that's not the direction I was wanting. The vitamin C is definitely helping the am nose bleeds I was getting, and helping my immune system-I was able to fend off a cold this last week. With the V-C, some acupuncture, and a bit of a massage, it peaked and left within about 3 days. Yeah! I think the sunshine is great too-I snitched the first cherry tomato off the vine today. Yummm! We should have tons of tomatoes this year. Hope the kids are going to be ready for canning season.

Family stuff:

Nicole got a job with Industrial Pipe in Albany, as a book keeper-it's part time, which she desired, and has good benefits, which I desired. She's still working at Benton County Health Dept., to finish up some projects, and is sharing a post partum doula job with Valerie.

Valerie took the first part training in Suzuki violin, so she can begin taking the courses to teach. She helps a ton in holding down the fort with my wacko schedule. She and Nicole each have house sitting jobs as well, so it's a busy summer-again.

The others are doing math, etc. still (No, we don't take a complete break in the summer-just slow down a little bit.) Sarah wants to pick blueberries and earn some $$ to increase her loot at the bank. Robert wants to mow lawns, but we need to get his and Pat's schedule together so they can actually go do it.

So, things are good, the Lord has been so faithful in bringing people in when needed, and providing encouragement and tangible help. He's definitely in this, and so are all of you. Thanks.

Prayers are always coveted-healing, wisdom, timing, and patience. It sure seems like we should be done with this by now. A friend told me of someone who was on the edge, but has hung in there for 15 years. Wow! Perseverance! I like good stories.

Thanks again, lots of love and much peace to you,
Jeanne H.

Special Olympics

(Now that we've learned how to post pictures, we simply can't stop!)
Well, we had a fun, hot weekend at the Special Olympics State Meet! It was (conveniently) held in Corvallis at CVHS this year. Daniel did very well and recieved a gold medal in the 100 meter dash, a bronze for softball throw, and his team came away with silver in the 4 x 100 relay. The photo above is him crossing the finish line in the relay. He is quite proud of his accomplishments and is eager to show off his medals to any and everyone (you gotta' love him!) ;-D

Gratefully His,
the Hazlenuts

One big, happy family

The proud family below and the new graduate with her amazing hair on the right (she actually wore it down and put blue and gold [LBCC colors] glitter in it for the graduation!) Pretty awesome!

Nicole is Graduating!

Just wanted to let you all know that Nicole is Graduating from Linn Benton Community College with her accounting degree this Thursday night at 7 pm, and you're all invited! It will be held at the Linn County Fairgrounds, and will most likely last about 1 1/2 hours. (At least that's what I was told!!)

Mom's and Dad's brag points are that...

1. She did it. The first time we went to apply at LBCC for classes, I was so nervous whether this home schooled kid would be accepted, and how would she do in her classes, and have I done my job as the mom/teacher, and all that stuff that moms can do to themselves (and their children). The registration folks were very excited to get a home schooled person, saying that they in general do very well, and were encouraging them to come to college. Nicole four pointed her first class, and we were off.

2. She did it debt-free, with hardly any help at all from her parents. (The Bums)

3. While attending school for her accounting degree, she also took a birth doula training and a post-partum doula training, and worked in this capacity to help pay for her classes. She also completed an "office technology certification" as the classes were an easy add on to her original program.

4. She has been able to work at the Benton County Health Department as an intern to finish out her required credits and earn more money to apply toward her schooling.

So-the way to find her in the crowd, is that she will have her hair down to her finger-tips with hair glitter in it. She didn't like the idea of decorating the cap, so this was the next best option I guess!

Any questions, give us a call or an e-mail!

Thanks,
Jeanne

IV Update to the Update

I forgot to add today's good news to the blog that I just wrote...

Last week they did my tumor markers. They had been creeping up, from the 5.7 to 6.1, then to 6.3. I didn't want to ask the nurses what last weeks CEA was, since it looked like I was developing another resistance to the chemo, thus the increase in counts. I just didn't want to hear the number 8, 10, 20 or ??? So I wimped out and waited until this week to ask (with fear and trepidation) for our records. Turns out it hadn't gone up at all, and stayed at 6.3. I had only been on the IVC/K3 protocol for a short time (1 1/2 weeks) when they did the blood draw for that, so it was exciting to hear. I'm hopeful that next week it could be an even better report, with higher doses of both C and K3 building up in my system.

Tim Murbach, the ND, also has a homeopathic protocol that's been used for cancer with success, and is willing to begin that as well. We ordered the remedies, but maybe I will wait a bit and see how this treatment works first. I'm so ready to be done with all of this, I want to throw everything at it, but I don't want to overwhelm my system. So maybe I'll let he and Jonathan figure out timing. That's the scoop. ooooh to be off chemo. So far Jonathan says "No". I can understand that, but it's hard to want to go in there some days!! I'm wanting to plan for a detoxing sauna and some other stuff to get rid of the chemo that's floating around in my body-I know it's done a good work in buying me time, and I still need to build up my system. But it would sure be nice to feel all those toxins out of there.

Con't prayers for effective healing, patience, tolerance of all of this, and that gas prices would go down. Yikes! Also for finances to keep up with the output. Pat got a good review and a bit of a raise at work, but this a lot.

Thank you!!
Jeanne and the gang

IVC update...

I'm on the 3rd week of IV vitamin C treatments, and it's going well. The naturopath started me on 12 1/2 grams the first day, 25 grams for the next 2 treatments, 50 for the next 2, 75 for the next 2, and I did a blood draw last week to determine if it's at a therapeutic dose yet. Tomorrow we should know, and we'll do 10 weeks at that dosage, twice a week. If it's not at the right level, we'll either keep going up, or reduce it. Herbman Jonathan and Tim, the ND, have me taking 6 grams orally of VC/day, along with 60 mg of Vitamin K3. Since I'm tolerating the IV vitamin C well, I've begun adding K3 to my IVC days as well, to maximize the effects. I could possibly get up to 500 mg. on these days. There are no side effects that I can tell, other than today I have a ton of energy, and feel really good. And I had chemo this morning. How wierd is that. My eyelashes stopped falling out I think. There are a few left :D So...we'll just keep plodding along, finding what to do next at each level. Dr. Kenyon will be gone the entire month of June. He gets to go to Germany for the World Cup soccer games. I've got an app't set up to see him the 2nd week in June, and he'll probably have me get scans at that point. That will add some variety to sitting in chairs being tethered to IV lines for 3 days in a row. It takes a little longer that I was thinking-about 10:45-2:30 or 3 on Wed. here in town, then chemo Thursday from 9-12, and Friday a drive to Tigard, and the treatment from about 1:30-5:30 pm and a rush hour drive home. Hopefully I'll be able to see my brother up there at some point. He's had a job in Washington, and we've had plans lots of times, so we haven't connected as well as would be fun.

For the Wednesday treatments, it's at an office that I previously did massage out of. Some past clients come to visit, the acupuncturist stops in to say hi, as well as massage therapists and a chiropractor. Pat sometimes is able to come eat lunch with me, and another friend has shown up every week with snacks, a foot rub, and a good chat. Wow! Nicole and Valerie have been trading off on Fridays, coming up to Tigard. It's about a 1 1/2-2 hour drive, so we get some one on one time. The other kiddos may rotate in there as well soon as well as a friend or two. The Tigard office has students, so I get to tell them total untruths about how they should practice, and mess with their heads a bit. They're a lot of fun, and a neat group of people. I believe they all are scheduled to graduate in about 5 weeks. Tim oversees them, and is helping them get licensed in IV therapy. He in turn gets mentoring by a woman who teaches IV therapy at the Portland Naturopathic College. So I feel like I'm getting good treatment. He has to be there on Fridays, therefore so do I. The treatments evidently work best scheduled with chemo in the middle.

Funner stuff:
The lemon tree has 25 baby lemons! Artichokes are growing crazy fast, but don't know if we'll get chokes or not from them. They were hit pretty hard in the freeze. Chard & onions are growing great, and the peas are past knee high. The second planting is about 1" tall. Very cute. About 18 tomatoes are in. Yum. Potatoes are coming from random plantings over the last years. Looks like a good year for the cherries, apples and pears if the birds are tempered.

The end of the school year is here with events...Last weekend Sarah and Valerie had a violin recital, and this next weekend each of them has an orchestra concert, Nicole and Valerie have another bell choir concert, Dan has a track meet near Portland, and I've got a baby shower. I think after this, it theoretically tones down a bit. Noone needs to be tested for homeschooling this year, so they're happy happy.

I think that's all for now...
Blessings to you,
Jeanne

April's Update, 2006

A few folks have been asking what's up, so I'll try to update here...it's hard to want to be in on a computer when it's so nice outside, but I guess I need a break from obsessing over the yard. (Not that it looks like I have been, but there's bits of progress!!) Peas are about 4" high, and we've got more seeds ready for the next planting. Walla Walla onions and Swiss Chard went in yesterday, and the 3 artichokes made it through the freeze and are making a valiant attempt to thrive in this great weather. I'm trying to not get the tomatoes in too early only to have them get too cold at night. It's sooo tempting! The bed is now fertilized and is warming up under a red plastic tomato "mulch" ready to recieve this years babies. I'll try just about anything to avoid weeds, and the plants seem to like the red and the warmth. We've been putting in about 18-25 tomatoes/year, and I try to get them to ripen as much as possible before fall hits. I thought I'd try a new plant this year, similar to a potato in that it grows edible tubers. It gets 4-8 feet tall, has velvety leaves, and is supposed to be full of minerals, tastes good, and is good for blood cleansing. It's called a Yacon Bolivian Sunroot. Fun to try, anyway. Now I just need to find a place for it. I also just potted a new Meyer Lemon tree that I purchased with some b-day cash. It's got about 8-10 tiny lemons on it now, and about the same amt. of flowers, so hopefully I'll get some organic homegrown lemons this year. Valerie and I seem to be entranced with -or maybe in need of- some pretty colors and smells this summer, so we both keep coming home with a little flower here and another there to pot. New pots of spearmint and peppermint, and a revamping of the front herb garden feels great. We got hooked on bread dipped in rosemary/garlic plus some spices infused in olive oil. I can't do the bread this year, but the plants still are nice in the bath or in oil for massage, or....always experimenting.

Well, that's the outside report, so here's the "inside" scoop...
The last scan report showed that there were no tumors left in the brain, just some residual scar type tissue that will probably always show up. There are no New lesions, either, which I'm very grateful for. The spine seemed stable (no new lesions, just the little holes from the prior tumors that chomped through the bone.) No one on any physical exam can find remnants of the breast cancer in the actual breast. So that means that we're still just dealing with the liver. The CEA levels are fluctuating a bit-the lowest was 5.7 about a month ago, then 6.1 a couple of weeks ago. Still have hair, (am slowly losing eyelashes) no neuropathy, nausea, etc. Amazing.

Tomorrow (Wednesday), I'll be starting a new type of therapy. I'll be getting about 50-75 grams of vitamin C in my IV line, and I'll be also taking an oral form of vitamin K3. The combination of these two is supposed to cause a new type cell death; the cell actually scissors itself into little pieces. It affects only cancer cells, not healthy ones and is perported to be nontoxic. Sounds good to me! Until my body learns to recognize and destroy cancer cells on it's own, I need to rely on some other therapies to do it for me. It's nice to have some non-toxic options. The IVC will be on Wed. and Fri. for 2-3 hours, with chemo sandwiched in there on Thursdays. Oral K3 will be taken daily with oral V-C. (Oral V-C on non IVC days) The plan is to do this for 10 weeks. It is going to be a challenge to be stuck in a chair for that many hours for that many weeks, but ya do what ya gotta do, I guess! If anyone is bored and wants to hang out in a chair with me, I'll be easy to find!

Haven't found any live vaccines yet that are appropriate, so that's on hold.

There are some radiation techniques that the Cancer Treatment Centers of America have, in Tulsa OK, but our insurance won't cover that yet. I guess that specific center has some cutting edge liver cancer treatments, plus they could work with the systemic chemo. which, after Stanford, looks like I'd need so that the cancer doesn't grow in one area while they're zapping another.

I think that's about it...Nicole graduates with her accounting degree this June, so that's exciting. Her job at Benton County Health Dept. con't. to go well, and we're proud that she's going to be debt free when she gets her degree. She's thinking about what to do next, and will probably decide closer to graduation. The other kiddos are doing pretty well also, especially now that the sun's out!

Pat and I got to go to the beach this last weekend with another couple, and we left all the kids at our friends' house. Nicole and Valerie had our younger 3 plus their 4 children, both families' dogs, a bunch of sheep, a guinea pig, 6 chickens and a cat. It was pretty exciting! I think the kids are all just about caught up on their sleep. It was a treat to go away with another couple. It's the first time we'd done that, and what a treat to be with real adults with similar values for a whole 2 days!! Our family got to go away about 2 weeks ago to a beach house in Waldport. I highly recommend this house. What a blast, and right on the beach. They have a room downstairs that has about 1 1/2 feet of sand in it, with swings, lots of toys, etc., and the whole house is very comfortable. Big wrap around deck, sunroom, lots of space to sprawl out...and extremely reasonable rates. Let us know if you want the contact info.: it's available for rent.

Ok, enough's enough. Prayers are still coveted, and many many many thanks for those that are helping out financially also. You are appreciated so much. A lot of this stuff-even the monthly supplements that help me deal with the chemo and help me keep going-wouldn't be possible without you. It's a relief to have the assistance. Thanks also to those who've furnished the beach house for us to get away in, the massages, the food, and everything else you folks do.

We love you guys so much. Each of you is such a blessing, and I hope you can feel how much you are treasured...by our family as well as our Savior!!

Have a blessed month,
Lots of love,
Jeanne H.

March........Lions and Lambs

...and who knows which it will be when? It seems like anything's game sometimes in life, doesn't it?

This last weekend we spent some time with a scientist/friend discussing possible clinical trials to get involved in. (Seems like there have been enough of those, but I guess these would be different than just "life's stuff".) These would involve getting vaccines for the breast cancer once a month or more. I need to spend a lot of time getting reaquainted with the National Cancer Institute's website, and maybe call a few folks to see what there is I can be involved in. At first peek, it looks like you have to have "failed" a standard therapy at least twice to be eligible. I've become resistant to, or "failed" once so far. Then you have to be off of the chemo at least 6 weeks. That's a little spooky, but if it's not working anymore, there would be no use being on it. The good part is (other than possibly it could prolong or save a life) is that they could fly me out to Maryland, put me up in a nice hotel, then pay for medical bills for the rest of my life. Dandy. As long as that's a long life, I'll take it.

The next thing is that we got scans set up, finally. It's been since November that we've taken a gander at the brain, and it's probably just as glad to have had a little privacy for these few extra months. How intrusive!! The RN just called, and said we're set up for this Friday the 17th. The brain MRI happens at 11 am, then I'll trot over to the hospital, drink the bilge-one jug or two, depending on how brutal of a mood the techs are in that day, then get a full CT scan done at 2 pm. Can't wait. We will then get results from Dr. Kenyon next Monday at 3:40 pm. I'll probably kick around the vaccine idea with him. It sounds like you can do vaccines concurrently with chemo., there are no side effects, and they are non-toxic. (Just like Play-Dough!)

We're also checking out some IV vitamin C, around 50-75 grams, to build up the immune system a bit more. It would involve going in about 3x/week until my body registered it had received a "therapeutic dose". That is the protocol that is deemed cytotoxic. (death to cancer cells) This is given in a relatively slow drip, as the V-C can be very acidic to the veins. (I feel like a slow drip some days) Thursdays I'm still getting chemo, and that lasts from 3-5 hours depending on the number of drugs administered. I wish I really enjoyed sitting on my behind for hours at a time. It would make this more enjoyable!

We will still look into ozone therapy. There is a new Naturopathic doctor in town who can do this, but we would probably need to travel to Portland to have it done as he has equipment accessibility up there. Tim, (the N.D.) works with an instructor at the Portland Naturopathic College. She has her own practice and also oversees all of the IV and ozone therapy at the college. He has been extremely communicative, has spoken with Jonathan, the herb man, and is very willing to work along side everyone as a team member. Yeah!! This is good, as I didn't want to have a situation that got stressful or even dangerous, with everybody doing whatever they thought was good and right in their own eyes, then tripping up somewhere. These are time consuming and $ consuming, so we're trying to go slow enough to make sure we're getting the right combination of people with the right skills, but quick enough to hopefully make a difference healthwise.

So far I'm still experiencing only minimal side effects, and I think that the "nutritional accessorizing" has helped a ton. I do seem to get a few nose bleeds from the Avastin, and can feel a bit rugged on Saturdays, but by Tuesday I'm not recognizing that I'm on chemo-except for the schnoz and a few occasional foot cramps. And...I still have my hair. And...a friend pointed out that my birthday's approaching. At first I wondered why that would be a big deal. (I'm kind of slow.)

Our hopes/desires for the scan results are...miracles. We all want 'em, don't we? "Give me this, give me that, then I won't be such a brat..." Plead and bargain all I want, but it comes down to trusting and having faith. The childlike stuff. So, Dad, I'm still hoping that the radiation tech. sees no brain lesions. None, zilch, zero. (In November there were 2 left, but they were tiny enough that the medical oncologist, Dr. Kenyon, couldn't find them, and Pat and I couldn't remember where they were. They were inactive at that time.) It would be great if there were none in the liver or spine. Two weeks ago, my CEA level (tumor markers) were at 7.1. If they stayed on their current trend, they should be down to about 4.1 this week. We will probably find that out on Monday when we see Peter. A marker of 3.4 or less is the magic number that I'd like to be at, stay at, live at.

One thing someone told us is that if you have Inflammatory Breast Cancer, you are automatically qualified for Disability Benefits. Possibly the kids are also. (The younger ones.) We're looking into that at this time. The basic requirement is that your illness is expected to continue for a year, or result in death. (Cheery) And you have had to work a bit and put into Social Security. Aaah...More paperwork for Pat. I think I'd rather have IV drips. So if any one of you fit the above category, check it out. No one in "the system" ever told me about this, so again, you really have to listen to the people going through it as well as rely on the medical staff.

Take care, and bless you all with eternal thoughts, eternal joy, and eternal love through Jesus Christ.

Jeanne H.

February's Facts

It sure is nice to stay home for a while, though Pat and I were wondering if we should go hang out at an airport just to be in one again.

It seems so peaceful now compared to the last two months. In the midst of all the CyberKnife travel, there were 2 birthdays, Christmas and New Year's celebrations. Nicole began another term of college, and Valerie started working for a friend's business. Aaaah. It's done.

The latest health news is that my CEA levels are dropping again! It got up to 22 in December (Stanford's numbers). It dropped to 19 something, then 16.9, and as of last week 13.2. We're glad for that of course. The goal is that magic 3.4 or less number that says the amount of cancer is within control or not an issue. Then it needs to stay there with no chemo.

The Abraxane, Avastin (new chemo drugs) and Zometa, seem to be pretty tolerable. There are a couple of funky issues, but it's not bad at all, and I still have my hair, even through 4 sessions of ballroom dance class :D (Which was more like Jeanne holding on to Pat while we stumbled around. Pat's note.)

Prayer concerns: Continued prayer for Dr. Kenyon; Jonathan the Herb Man; some possible medical decisions re. "ozone therapy" which can help oxygenate the cells (which cancer does NOT like.) We will see a doctor in Salem for this treatment. He's checking my blood for a few extra things so we'll better know how to procede with treatments. Always looking for ways to make cancer dislike it's "host environment". Pat and I are doing pretty well most of the time, but this can get weary, so prayer for our relationship is appreciated. My port has held up beautifully, as has most of my health, so continued good health is a good prayer item, too. These are the big things.

Thanks a bunch-many blessings,
Jeanne H.

We're Back...again

(See below for a synopsis of the activities of the last few weeks. The first long part is Jeanne's-the synopsis of course is from Pat.)

I believe Valerie sent out an e-mail about my not being able to receive the CyberKnife treatment, so most of you are up on that. It is disappointing, but is certainly not a hopeless situation. On the way home we flew into Portland-through heavy clouds of course. How like this whole process...not being able to see in front of us, behind us, and just barely out of the windows! The incredible thing is that when we were flying above the clouds the sun shone brilliantly. It was a reminder of how we cannot only rely on what we see with our earthly eyes, as we don't have the entire perspective consistently. In Oregon lately it's been extremely dreary, but just above those clouds is an entirely different reality. I need to keep my mind fixed on that, and not just on a tidbit of "bad" news-it's not the whole picture.

Here are some bits of more of the "picture" I've seen...
The radiation oncologist told us that my liver lesions are still very small, which is a good thing. They've also responded to chemo very well before, and there is no reason why they won't again. There are a total of 8 lesions in the liver, and if they radiated all of those at this time, my liver would be too toxic and would not be able to tolerate chemotherapy. This would be bad-the cancer is traveling through my whole body and needs to be treated systemically. She checked with the Stanford medical oncologist who only treats breast cancer, and was told that they've been having good results with the new chemo I just began, Abraxane. They are going to do a trial with the Avastin soon (the anti-VEGF drug--see earlier blog) and I received my first dose of that, along with some Abraxane this morning. (As of 9:20 pm, no bad reactions) The radiation onc. said that sounded very good, to go for it, and if at some point I'm in a place to get just a few spots blasted, I'm welcome to come back to Stanford. I think I'd want to be on chemo at the same time maybe, to discourage the extra growth that's happened this go round. I hadn't wanted to be on a new drug while traveling and then have a potential reaction on the plane, shuttle or ???

The other positive thing, cancer-wise, is that my liver (amazingly) is in very good shape. The hepatologist and radiation onc. both agree that I should have no trouble with the chemo, etc. Good job liver! Our oncologist here is positive about this next treatment as well.

We left for California last Tuesday, had PET and CT scans on Wednesday, and attended the Stanford/OSU basketball game on Thursday. We got the news of "no CyberKnife" on Friday, and afterward went to my new all time favorite restaurant in Menlo Park (all organic-look on line for "Flea Street Cafe" or JZCool's eatery and catering service for a menu. Inspiring.) Incredible food, wonderful service, everything is prepared beautifully. Had to get her cookbook. mmmmmm.

Thursday we spoke with a Stanford dietician. She was impressed with the "diet" that I'm on, and was glad to see I'd been including L-Glutamine in the morning smoothie. It's supposed to help with the neuropathy you can get with chemo, and also protect against losing lean muscle mass. She had no recommendations, and suggested I keep eating the same way. The key thing according to her studies, is to get enough fresh fruit and vegetables (esp. veggies) whether you eat meat or not, (if you don't eat meat, be very careful to get the zinc, B-12, etc. that could be lacking, and tons of protein for dealing with cancer/chemo) and to eat things in as whole a state as possible. No white stuff. She said she'll be recommending more and more people go organic over the next couple of years. She was very nice, and like all the Stanford docs, gave us her card along with her e-mail address in case we ever have any questions. These people are incredibly accessible. And they all have PhDs that they probably got when they were 14. Lots of Lexus, BMWs, Mercedes, etc. We were trying to count how many cars we saw over 10 yrs. old. I think we got up to 2. Oh well.

Saturday we cruised along the beach, and saw about 50-70 surfers along the Santa Cruz coastline. They looked like they were going to bean one another, but everybody seemed to be able to escape injury just fine. There was an otter or something swimming along with them. Saw some redwoods, some beautiful countryside, and a lot of the inside of my eyelids. Pat drove and caught the Redskins game on the radio and relaxed a bit. Nice day before traveling home on Sunday. GREAT to see the kids again. Not used to this much time away from them.

One of our favorite things that occurred was being able to stay at a dear woman's home this visit. We had met her at a little church on our prior visit. We'd wished to attend a small quiet service and be incognito. After the service, the woman in front of us turned, asked us about ourselves, why we were in Palo Alto, etc. etc. Then she unabashedly said that the next time we were in town, we should stay with her. She had the extra space, we'd have the freedom to come and go as needed, and she was close enough to both the airport and Stanford as to be convenient. What were we to do other than take her at her word??? She served us a lovely dinner upon our arrival, and our schedules revolved around each other nicely. It was the most dear thing to have what could be a quite depressing meeting with the oncologist, then come home to the encouragement and prayers of this saint. A true example of how we make our plans, then the Lord directs our steps. There have been so many examples of how we've been watched over, directed, encouraged, and blessed over and over in abundance through this. Many of you have been such an example of God at work in your lives and ours, and it has been truly a treat to watch and a necessary gift to receive. That part is a little tricky sometimes. As another friend said, "it's such a bittersweet experience-there is so much pain in it, but yet so much love being shared, so much good being done." I sometimes think it would be impossible to see the depth of Christ's love without experiencing some amount of the pain, suffering and sorrow this world brings. What would we have to compare it to? To what would we compare the joy? In what way would we measure the comfort we receive from our precious friends and family? What need would we have to be rescued and how would we know we even needed it? Who would we rely on to do it? Where would we draw our standards from if there were no God?

Thanks again for tuning in, and caring for us and our family. As for prayers, as always, we need prayer for Dr. Kenyon and the herbalist, and all those who are being involved in resolving this cancer-wisdom, grace, timing, and of course, the healing of my body quickly. For continued patience and strength for Pat and the children and I as we support one another in this. This season has been tiring and sometimes frustrating. Pray for grace to stick with a "clean diet", lots of exercise and the resolve to be faithful. For trust in our Father's plans-that His plan is perfect, that His timing is best, and that He will continue to walk us through each step of this. His guidance has been evident. Valerie got Pat and I some Ballroom Dance classes for Christmas-we attended our first one last night. Please pray my hair stays in my head, and my health (and Pat's) stays good so we can take advantage of this to play, and not be "doing cancer".

Thanks again,
Love you,
Jeanne


Quick chronology of the past months: (from Pat)

Nov. 18th
CT scans revealed the remaining three tumors in the liver were increasing in size.
Dr. K felt the chemo was no longer effective, and recommended we start a new chemo regimen in a few weeks (take a break to build Jeanne’s immune system.)

Mid-Nov to early Dec.
Began investigating the Cyberknife treatment to radiate/eliminate the tumors in the liver. The closest facility to offer this is Stanford University in Palo Alto, Calif.

Dec. 5th - 7th
First trip to Stanford. Met with Drs. and found out that Jeanne was a good candidate for treatment. She would receive the treatment in the next month or so.

Dec. 15th - 19th
Second trip. Met liver specialist; she gave Jeanne an affirmative to get treatment. Also, gold “seeds” or markers were placed in Jeanne’s liver in anticipation of the radiation treatment.

Jan 3rd -8th
Third Stanford trip. Jan 4th, CT was performed for planning. Set a tentative plan for Cyberknife treatment on Jan 9th or 10th. On Jan 7th, the Dr. informed us the # of spots has increased to 8. This is too many to treat with the Cyberknife because it would create too much toxicity in the liver. Doctor recommended we return after chemo has reduced tumors to a smaller number again. Gold seeds stay in liver and will probably freak out our radiologist when he scans next time. They look like rays of a star when they're being scanned. HA!

quick update

Just a quick update (from the less-detailed half of the marriage, Pat)

First off, thank you to all of you, (and you know who you are) for the continuing kindness, generosity, and prayers.

Since the last posting, Jeanne had the preliminary gold "seeds" planted in late Dec. She and I are back at Stanford. She had the PET/CT completed on Wed. and will have the actual Cyberknife treatment sometime next week. No firm date is set.

Between trips, Jeanne had two treatments with the new chemotherpy regimine. She came down with flu-like symptoms last weekend, and even today still has a lingering cough. We are not sure if the illness is a side-effect of the chemo, or that she caught a bug, and her body just had a more difficult time fighting it off. Either way, it did not stop us from coming down here, but it had us worried.

We will send out another posting, probably after the treatment, next week.

In the meantime, keep praying, and thank you,

Pat