time to reflect....

I've known the result of the independent review of my Humana Health Insurance denial for over a week now which was sooner than expected. I don't know if I was surprised that the denial was upheld. In fact, after reading the letter of the decision and sharing it with Kenn I just had no emotion at all and put the entire issue out of mind. I didn't want to write a post about it until I had time to process what I do think about it. To date I still have no emotion about it, just the assurance that this is God's timing and I don't have to think about it anymore. That is a great thing! All those appeals, letters and paperwork were just not fun. I will never regret doing my part in trying to right a wrong with the preexisting issue but am excepting defeat gracefully.

I have two months to get healthy again and prepare for the surgery in March. March 1 is when my policy has been in force for 12 months and Humana will cover any preexisting conditions. The delay will probably not effect the surgery in a significant way, but the denial of coverage for procedures done to date for the diagnosis of the rib tumors will remain. I continue to receive bills for various tests, images, and biopsies for the benign rib tumors but am having success receiving some financial help from some of the providers. The balances have all reached 90 days and the bill collectors are getting pushy. I've been pleased that most will work with us.

I'm always asked how I'm feeling. Until recently I have been feeling great but since my last little surgery on November 6 I've had some continuing physical discomforts as a result of antibiotics. In my last post I mentioned how several rounds of antibiotics over the last few months have caused me to have a candida yeast "overgrowth". This systemic condition continues and will for a while. Getting one's body back in balance with this is not a quick fix and the treatments always make you feel worse before feeling better. This is a result of “die off”of the yeast and the resulting toxins released into you system faster than you can eliminate them. So one has to pace oneself for a long and sometimes slow healing. The common symptoms that I'm experiencing are headaches, nausea, “fuzzy” head, trouble concentrating, fatigue, lack of motivation, depression, dizziness and drunk feeling. These symptoms are all debilitating and I'm having a difficult time doing anything more than what is absolutely necessary. My “to do” lists haunts me. The Christmas cards sit on the table, boxes are still not unpacked, thank you notes never written, no paintings on the easel and on and on. I have difficulty getting up at an early hour and have finally in just the last two days risen at a un-embarrassing hour. I only share this, so that those of you that have experienced a similar result from too many antibiotics can know that you are not alone or crazy. It is not in your head! Some docs don't have a clue. I know that I'll have to take more antibiotics with the next few surgeries but my current treatments for the yeast are to just try to keep it all in check as much as possible. Like I said I'll just have to eat a good diet and try to kill off as much yeast as possible. The symptoms should begin to taper off soon. I've dealt with this before a couple of times so have been down this road before, but just not to this degree. I'll leave it at that, I don't want to get on my candida yeast soap box! 

Thanks to you all for your continued support, prayers, an care for Kenn and I. If I don't post in the next 10 days, then I'll now wish you all a very blessed and wonderful Christmas!!!!!  

yeastie beasties....
All is going well except for some pesky fungi overgrowing in my whole system. Anyone that has had multiple doses of antibiotics can experience an overgrowth of the natural candida yeast normally found in our bodies. The antibiotics kill off the healthy bacteria in your gut that keeps the yeast in control. The overgrown yeast can get into your blood stream and cause all sorts of mischief. In my case I had begun feeling "sickish" since my minor out patient surgery on November 6. I was feeling irritable first ( to be expected ) and then I began having whooshing sounds in my head, rapid heart beat, drunk-like dizziness, headaches, and a complete brain fog along with some hives. I just felt pretty awful for a week and just hibernated in the house with absolutely no motivation to do anything except the necessary.

 I thought at first I was just recovering from the anesthesia and the fatigue of the long drawn out move. But then it dawned on me! I've had 4 rounds of antibiotics since May beginning with a root canal that I had that month. Then three more after my three surgeries ( lumpectomy, mastectomy, and nipple removal) with antibiotics after each. No wonder I had a yeast overgrowth!

I was glad that I could recognize this nasty condition due to having had to treat and eliminate the same problem in the early 80's. With helpful info online and getting some supplements and following the no-yeast diet, I have eliminated most of the uncomfortable symptoms in the last 4 days. I have to continue to avoid sugar and starches ( which feed the yeast ) as much as possible for a while and take some probiotics to replenish the healthy bacteria destroyed by the antibiotics. I have felt worse from this condition than any to date in my current health ordeal. Wouldn't you know that it was caused by the treatment of drugs making me sick!  But a necessary assault on my body, I suppose.

I've not heard from the Independent Review Organization reviewing my newest insurance appeal. I would hope to hear early but their time limit is up on Dec 14th. I'll just keep on waiting, but it is tiresome. At least I've had a chance to treat the yeast toxins and be in better health when the time comes. Also I'm so thankful for the time to recover and unpack from the move. This is also tiresome...... but we are settling into our new digs in Marietta and enjoying being close to family.

In the last appeal to the IRO I include images of my rib Hemangiomas. I took some camera shots of my CT scans from the Doctor's computer screen, uploaded them to my computer, and printed out hard copies to send along with other documents and letters. I'll share these images  below for you to see what I've been describing in previous posts. These CT images are viewed from below looking up toward my head so the right side of my body will appear on the left. They are "slices" of my mid section at different points along my chest.  The CT was taken in May of 2012.

 Posterior 7th right rib
 tumor
( lower left of chest wall
near spine )

Front right 5th rib tumor ( behind right breast )


I'll take a break on Thursday from my self-induced restriction on all things good to eat. Yum, pies and cake and the cornbread stuffing! My yeasties will love it but so will I. Happy Thanksgiving to you all and may you be blessed this season. 

if you haven't heard....
I'm not having the huge rib surgery tomorrow. I was not able to obtain an expedited independent review to appeal my continued denial of coverage for the rib tumors. The surgery was canceled and now we are waiting for up to 45 days ( standard review ) to get a decision from the IRO ( independent review organization ).

 I'm hoping and praying that a decision will come sooner and that if the ruling is overturned that my surgery could be scheduled before the end of the year. It would save us lots of money to get it in before January 1 because we have already met our max out of pocket for this year. You may think we are disappointed but after the move has worn us out we are relieved that we will have time to recover from the physical toll of this last month. I am having a minor procedure related to the breast cancer tomorrow in an outpatient surgery but will recover in a day or two and be back to normal. It will give us some time to unpack here in Marietta and get our life back in order.

The move took us longer than expected and it was just today ( Monday ) that we were finally able to hand over the keys to our landlord. We celebrated the day had FINALLY arrived! We really thought this day would never get here such was the difficulty of the move. We both walk with a limp, are stooped over a bit, have a few more gray hairs and constantly forget what day it is. Moving ages us old folks at least 3 years in a month.  Again, I state that we are glad that tomorrow is NOT my big surgery! God is watching out for us! His timing is always best.

I will keep you posted on the independent review. We appreciate all of you who have been so interested in how we are doing, praying for us, supporting us and loving us. We are humbled. 

letting go feels good....
Yes, letting go as in GARAGE SALE! Kenn and I just completed a two day garage/estate sale and God brought the people. We were amazed at how many people were believers. I gave away many Bibles, spiritual study books and Christian themed illustrations ( wouldn't think of selling but giving ). I loved giving away small illustrations that had been published in Mission's magazines for children for the Baptist Home Mission Board. I've been keeping all these for who knows what, and made many little children happy with some original art. I loved the little guy who wanted the picture of a family gathered around their dining room table reading the Bible. I asked him if he knew what they were doing. He said yes they are reading the Bible, "I love reading the Bible". It blessed my heart.

Wow, what a successful sale it was! We made enough to support us for a month during our time without income.We have been so blessed and learned so much during this month of moving and time of need. We will be much more ready to help and serve people in the future. So many folks have given of themselves physically, financially, prayerfully and just moral support and encouragement. We have Tom as our daily angel. He would be embarrassed to know that I am even sharing about him but I just have to. He is 80 and has been by our side for more than two weeks almost daily. His van has taken loads of stuff to Marietta and our Tucker storage unit more times than I can count. He and Kenn have loaded the things and Tom wears Kenn out! I think he runs on High Test Holy Spirit. I know he has the gift of service, there is no doubt about that.

So now we have until the end of the day on Wednesday, October 31 to have all things out of the rental house and much work is left to be done. A combination of moving some things to storage still to be sold or kept, and moving things to the end of the drive for trash pick up will keep us busy tomorrow. Then we will have the rest taken or picked up by non-profit org. and the rest to the dump. We may have to hire some junk removal service to do the final haul. We will be sooooo glad to be done. We are so physically tired and need a rest.

Due to some set back, I didn't get my review request for Humana sent out until Thursday evening. If I'm granted an expedited review I may hear something about my appeal on Monday or Tuesday. If not it will take 45 days to know if Humana will cover the upcoming rib surgery. I'll let you know as soon as I hear something, Thank you all for your prayers in this matter.

Going now to just lay back and take a breather. Later......

it's awful.....
It is truly awful that I have not posted in so long! After the awesome fund raiser at Rocco's I had been without internet for over a week, had doctor's appointments every day for a week and trying to move at the same time. I've been getting comments about what is going on with insurance appeals and how I am doing and such and thought I'd better grab a minute and update.

First of all I want to thank you all for your continued support both through your prayers and financial support. The fund raiser on the 13th was a huge success and we received a good amount toward our living expenses and doctor bills. We have also been receiving donations through our YouCaring.com site and many of you have contributed anonymously. So I thank you all so much! God is really providing through his people. A special thanks goes out to Debbie, Marie and Stan and many others for the time and devotion they put into the Rocco event. Bless you!

The move is going day by day. We have been at the Marietta location now for almost two weeks but have so much more to move out of the Tucker place before the end of October. Everyday it is back and forth, I've never seen our gas tank empty so fast! We have too much stuff to sort through with a cleaning business and my art studio added to all the personal things. What an ordeal it has been in the midst of the medical issues. I have not been able to lift so I have been little help with physically moving things. We have had much help with the move as well and couldn't do this without you!

After my first appeal to Humana for denying my claims they returned with a decision to cover the breast cancer but still hold to their original claim that the rib tumors are preexisting. I have been putting in more numerous hours in my second appeal to a third party review board to have that overturned in time to have my scheduled rib surgery on Nov. 6. I have been gathering letters from doctors/surgeons copies of CT scans, addendum to office notes, and a 5 page letter explaining that the offices notes from which their decision has been made are incorrect. It has taken hours again to do this but I think it will be all faxed to Humana tomorrow. Time is short until surgery but I am asking for a expedited decision. Please pray for this for if not approved I will cancel the surgery for now and that could be mean waiting until next March when it will be covered. The doctors all think this is not in my best interest.

This is all I have for now, must go to Tucker and move more stuff! Love to you all for your continued support and care for Kenn and I.

"dog sick and out of toilet paper".......
After yesterday's mail my life has been a country song.

*Humana letter arrived denying rib tumor claims, official now ( this was not a surprise )
*Expect that Nov 6 surgery be postponed until after March when it will be past the 12 months since policy began, no longer pre-existing and Humana will cover it.
*Hospital bills pouring in.
*Letter from Northside Hospital stating that my assistance application approved but finding out that it will not cover half of what I thought it would.
*$24 in bank account, $4 cash, 1/8 tank of gas, and eating beans, beans, and more beans.
*one roll of toilet paper left and my dog is sick.

With the dawn of this Saturday morn and overcast skies with a pounding headache I had lost my "peace" of mind. My "first thing in the morning" times with the Lord have not been consistent this week and I felt it. I hungrily met Him in my "place" with emotions intense and tears ready to spill. I never ask the question "where are You?" but more often "why do my plans have to be changed?".  Lord, I want to have things my way and everything run smoothly––please, no more surprises!

It shames me that money issues and provisions not apparent throw me more than facing death that I experienced three months ago. God has allowed us to be without money for a few days ( just a few days! ) to show me my heart and see that I still have a long way to go in completely trusting Him to provide and to fully yield to his timing and plans for me. I am comforted by this verse today:
Jeremiah 29:11  For I know the plans I have for you, "declares the LORD", plans to prosper you and not to harm you, plans to give you hope and a future.
Today has developed much better––my dear brother deposited funds to cover some immediate needs, my dog is not sick after all, my headache is gone, I found some spaghetti sauce and made a carrot salad, I'm sorting bills and feeling better about the totals and found a box of kleenex just in case the last roll of toilet paper runs out.

I'm yielded to the "plan" and changes and trusting again that my Heavenly Father has my back and knows what is best in the long run. Peace has returned. Thank you, Lord for never forsaking those you own. 

Hebrews 13: 5-6 " Let your conduct be without covetousness, and be content with such things that you have, for he has said, "I will never leave you, nor forsake you," so that we may boldly say, "The Lord is my helper, and I will not fear what man shall do to me. "

You are encouraged to leave a comment, just click on "no comments" below or "comments". Thanks

brief bits..........
The breast cancer is now being covered by Humana and some of the rib tumor claims also. Why some and not all? Ask Humana.

The rib tumors surgery is scheduled for voting day, NOV 6 at 8:30. It will go as planned unless the surgeon coordinator gets a "NO coverage" from Humana. Then I guess it will be after March next year when it would no longer be considered a "pre-existing condition". I don’t expect that to happen but the last 90 days has been chock full of surprises.

I’m feeling very good after the first mastectomy surgery. I’m still not lifting my arm or over 5 lbs––not because it hurts but in order to heal properly. Tomorrow I go to have the first injection of saline into the tissue expander. The drain will not be removed yet. ( the other bit of news about the mastectomy is that I had confirmation that removal of the breast was the right thing––the pathology from the removed tissue showed more cancer was in the breast ).

This last Saturday we had 7 helpers to pack and move lots of our "stuff" into a storage unit.  Huge thanks to all and to Cindi for providing us lunch! We feel very encouraged about the good start on the move that will be completed by the end of October. We are moving to my folks’ place in Marietta for the recovery if you have not already heard in a previous post.

Two fund raisers are in the works. These have been initiated by those who love and support us and are an extension of God’s provision. And we have been given gifts from a few our clients from our cleaning business, several who have continued to pay us for a few months through this ordeal, even though their homes remain just filthy, I’m sure! lol

With no current income and no more reserves we have been dependent on others for bills and out-of-pocket medical expenses. God has met our needs in various ways as I have mentioned above. Our landlord has also contributed to our need in allowing our initial deposit to pay for our last month October’s rent. Thanks Steve!

We are learning about receiving. It is a difficult lesson to learn as we are used to being on our own but the abundant love poured out to us is so very humbling––I’m in awe. Thank you, Lord Jesus.

Please click on the "no comments" or "comments" below if you'd like to respond.

not good enough ....
This could apply to several things as I update. In my last post I thought if I was a good enough  patient––but I'm not––that I would have my drain tube removed on Wednesday this last week. It turns out that I shouldn't lift my left arm as well as not lift anything over 5 lbs. The 5 lbs I heard but somehow I misunderstood that I should be keeping my arm to my side. It didn't hurt so I lifted it away. This lifting my arms causes more drainage to occur and as a result the drainage has not slowed enough so the tube won't be removed until sometime next week.
After the mastectomy the pathology report was not good enough to leave the nipple which had been spared. Not only was there cancer in the nipple but more cancer was found in the breast tissue, cancer not removed from the initial lumpectomy. Finding this cancer was such a huge confirmation of my decision to have the mastectomy instead of opting to have another lumpectomy to get "better margins". All cancer is now gone except the nipple which will be removed during the upcoming rib surgery. No big deal. Because Kenn wanted to avoid using the word "nipple" in his latest update on Facebook ( for my privacy ), the update was a little more alarming than necessary and I apologize.
My insurance is currently not good enough to schedule the next surgery for the ribs. Because of the denial of coverage from Humana, my surgery is being put on temporary hold until my appeal is rejected or accepted. Docs say not to worry and I won't as long as this doesn't go on too long. Humana has a 30 day time limit to respond to my appeal––I hope and pray that the appeal is good enough!
My last info was that the ribs surgery would probably be scheduled for the end of October or beginning of November. I don't pay much attention to dates anymore.
My brain has not been good enough to accomplish much during this week of recovery from surgery. The pain med and muscle relaxer have just made my mind cloudy and foggy much of the time. The sleep is great though. Today I have been tapering off to try to regain some mental capability to get this move on with a plan. Our wonderful group of friends, family and church family are standing by to help and we are not even able to tell anyone when to come to help pack or move stuff! Don't lose interest! We will get our act together this weekend and begin putting a plan together and get rolling sometime next week hopefully putting a lot of you volunteers to work––at least get a calendar of work days established.
I do see a plus in the rib surgery being scheduled later. We plan to be out of our current home by the middle to end of October. If the surgery had been in the beginning of October, I think the move would have been so much more difficult. I'll probably being going home from the next surgery to recover in Marietta instead of remaining here in Tucker. It will be good to have the moving part done already and I'll be able to focus completely on my recovery.
So how is this all going to happen really? I'm not good enough nor is Kenn. But God is blessing us with love and help in every step of the way. His provision, guidance in our decisions, leading our steps, giving us peace in the face of fear is what is good enough. God is so very good––good enough for all our needs. Are we good enough to deserve that kind of love, grace and care from him? No, but He even provided what we need to be worthy of that love.

first surgery completed.....
The mastectomy of my left breast went well on Thursday. No complications and pain is managed well with the taking  of my meds on time. The most difficult thing is remembering not to use my left arm to lift anything over 5 lbs. I thought is was 10 lbs. but no - 5 lbs. Everything weights more than 5 lbs! I've been resting with the occasional walk to the kitchen or bath. Solitaire, word search puzzles, sleep, reading, radio, sleep, solitaire, tv, sleep is what my day has been like today. Rest is necessary for quick healing but so hard to do. I want to get up and clean the kitchen, etc.

Northside Hospital was wonderful. The nurses are all so caring and sweet, the private room was updated and large with a place for Kenn to sleep. He spent the night and went home a while the next morning before coming back for me later in the day on Friday.  I had two visitors at the hospital, I appreciated it so much but those visits really benefited Kenn as well. The waiting gets to be long and boring.

We were both tired today and rested all day. Kenn slept as much as I did. Food was delivered by friends yesterday and today and I understand more coming tomorrow. We are so well cared for and loved. Thanks again for all the prayers and support that is coming to us in a multitude of ways.

Post-op appointment is Wednesday and I hope to get the drainage tube out then. If I'm good then it should happen. It is important to limit movement to let the pocket created for the expander and implant to heal correctly. It is not uncommon for this to fail and have to be repeated. I'm being a very good patient.

end of cleaning business? and moving......
Yesterday was our last day of the cleaning business for a while, at least until next year. We will re-evaluate then to know if we will be continuing. It's sad to think of not seeing my cleaning houses and families on a regular basis. Many of our clients are "family" now and I will miss them. They are the best clients in the world and I /we have been so blessed to have had the opportunity to serve them all these years.

Yesterday, the same day that we finished up our business, our car died!!! There was a knocking sound and we went by Tony's, our mechanic, to have him take a look. We are about to throw a rod. He said " yep, it's dead, you may get it home before it locks up". We prayed all the way home and made it. It will sit in the drive until it's future is determined.  We now have three vehicles in our drive that aren't running.  Someone took us to Marietta to get my Dad's car ( thanks Mick ).  Praise God for provision!

We are doing something both necessary and crazy impossible. We are moving to Marietta to my Mom and Dad's house during the month of September and probably into October.  Their home is currently vacant due to them living in an assistant living facility while Dad recovers from open heart surgery. We are MOVING the same 2 months that I'll be having the two surgeries!  We have many folks standing by to help in the move but still there are many things that we have to do for ourselves to prepare and many decisions to make in our down sizing. I have less than a week before my first surgery on Sept 6 to accomplish what I personally need to do for the move.

This relocation is necessary because we are out of money and cannot work for a while. Saving our rent money by being at the folks house will help but our other obligations will continue, such as insurance, food, gas, utilities, storage unit fee, etc. We don't yet know how God will provide but he will, I trust Him more and more. Some of our able and generous clients have offered to continue paying us for various amounts and length of times so that will certainly help greatly over the next couple of months. Did I tell you they were the best clients in the world?!

I did finally mail off the insurance appeal to Humana. It was as long and extensive an appeal as they will ever receive! At least that is my opinion. Also a copy was sent to the Insurance Commissioner's office. Humana is still denying 90% of all claims due to pre-existing conditions. My claims are over $60,000. to date without the upcoming surgeries included! This all since June 4, 2012! I'm hopeful that this will be resolved in my favor.

Although I have been told by the doctors that I will not be able to clean houses for a long time they did say that I would be able to paint very soon. Yeah! That is what I want to do anyway!  This year so far I've only painted some in January and February and then my Dad had his open heart surgery. The next month my medical conditions took over and I've not been able to paint since and now I wonder if I still know how to! lol I do look forward to getting back to the easel.

This is what I believe. God is using our circumstances to direct our paths in new directions. Our circumstances are such that our path becomes narrower and straighter each day. We are now sliding down a very narrow chute and we are in a place to only trust that He is in control. I do! Yesterday with the car dying I just saw that as God just greasing the chute for us. lol The upcoming move is no longer a question but certain guidance. We don't want to leave Tucker but God has something in store that we can't see for now. I'm feeling very good and bless that we have a place to go and a car provided. And it is not like we will be moving that far away!  God is very good.

quick update about mastectomy....

All tests have been completed and we have a surgery date finally! The mastectomy on my left breast
( the one on which I had the lumpectomy ) will be performed on September the 6th.  About a month later will be the surgery to remove the benign rib lesions and possibly the mastectomy of the right breast at the same time.  I will have to confirm that the two will be done together for it wasn't clear on Friday when I talked to the surgery coordinator.

Along with the mastectomy to remove the breast tissue, reconstruction of the breast will be begun during the same surgery. This process is done by placing a tissue expander ( like a thick skinned balloon ) behind the pectoral muscle to stretch it and prepare a pocket for the permanent silicone implant. Saline solution slowly fills the expander through weekly injections of saline into a port opening in the expander. It usually take from 6 to 8 weeks to fill the expander to the desired size. One usually waits 4 to six weeks to let the breast pocket heal, then in an out patient surgery the expander is removed and the silicone implant is placed in the prepared pocket. Most women who chose to have bilateral mastectomies will have the two breasts done at the same time. Preforming both at the same time will not be best for my unique case with the complication of the rib tumors.

The rib tumor surgery as I described in a previous post is very extensive. The removal of two right side ribs and a tumor in the front of chest wall and then deflating the right lung. This will allow the surgeon access to the rear right tumor on a rib near my spine. Another 2 to 3 ribs will be removed. Titanium mesh will form a new chest support in place of the ribs in the back. I think the surgeon I now have plans on Titanium ribs in the front with the chest opening being covered by a large muscle harvested from my back. Now I think my surgeon team may be planning to finish up this surgery with completing the mastectomy and placing of the expander in the right breast directly over the rib tumor surgery site. Whew, sounds like a very long surgery and really sounds like a long recovery!!!!

The best we can anticipate as far as the length of recovery from all this will be approximately September through January. Even then I'll still be going for the implant fillings which can cause a lot of discomfort. There may be smaller surgeries beyond that to fine tune the breast reconstruction. My second home will be Northside Hospital for the next year!

As you guessed our business and livelihood is going to be drastically and completely disrupted for quite a while. How we will meet our obligations is something of trust now. I'm expecting to work some by painting my oil paintings and gaining some income from that. Kenn has considered hiring someone to help him clean in place of me for a few months but some physical problems of his own are currently plaguing him and that doesn't seem an option.  He will probably be working full time as nurse, cook, chauffeur, house cleaner, laundry man and much more.  I'm told that I won't be able to lift more than 10 lbs for quite a while and should avoid flexing my pectoral muscle as the expander and breast pockets are healing. I won't be able to lift my arms above my waist for two weeks or bend over. Gee, I think Kenn will be very busy! :c

We are doing what we can to plan and prepare for our months ahead but at the same time trusting that God will lead us and provide for us in ways that we can't imagine at this moment. It all seems overwhelming at times and I do lose some sleep over my planning and thinking about it all. I have to remind myself of his promises and remember his provision in the past. He has never let us down and will not abandon us in all this. His peace is still with me most of the time as I trust him. His direction is available but sometimes not as immediate as I would like. I'm thankful for all as I see his purpose being revealed in little bits along the way and know that later as the journey has ended on the other side of these surgeries we will be able to see God's hand in it all and his purpose achieved.

Continue to lift us both up in your prayers as the days ahead may be more difficult than we can imagine. You all will be such support to us in you encouraging communications and prayers. Thank you all.

more tests and new surgeon...... 

I have hesitated to post any updates, things change as quickly as I post. But this is the latest update for the last 9 days.

After meeting my plastic surgeon, whom I loved, it was decided that I see another thoracic surgeon - Dr. John Moore, chief of thoracic surgery at Northside Hospital.  My plastic surgeon has worked with him many times and they together have worked on similar cases as mine. Another plus with the new surgeon is that all three of my surgeons will be at Northside where I have some financial aide available. It all makes sense for the change, I'm feeling good about this teem. Now the three surgeons are "talking" to decide which surgeries to schedule, in what order, and when. I'm just sitting back and waiting to hear the dates.

Meanwhile the thoracic surgeon has ordered more tests in preparation for the upcoming surgery on the rib tumors. MRI of the spine, breathing test, MRA and MRV of the chest and a Pet scan/CT scan. I've had the MRI of the spine and the others will be completed sometime next week.

Other than my own issues, my 82 year old mother fell at her assisted living home and has been hospitalized for a brain bleed. Tests over the last two days are showing it not be a major issue but after several more days in the hospital we will probably see her going to a rehab center for a couple of weeks to build her strength. Our days have been back and forth to hospitals - Kennestone for mom and Northside for me.  Husband Kenn has been a trooper for going to all visitations and with me to all my tests. What a great guy!

I'm still working on the appeal for my denied insurance claims. All but a few tests and procedures are being denied still and I hope to rectify that soon. God is directing me in all things and making my decisions easier. He keeps me in peace and confident in his provision. We are doing well and holding up remarkably. Thank you all for your continued prayers and support - God is SO good!

today's conversations....

DrD

Today at Dr Pickens/ thoracic surgeon

suggests to have the surgery done soon because of the larger tumor in back close to spine and wants to remove before effects that.

surgery 4 hours ––– open front and remove front tumor and two ribs, deflate lung to get to rear rib and remove that tumor and 2 to 3 ribs without cutting through back side ––– support chest wall with material like a cast.

in hospital at least 5 days.  epidural afterwards to allow breathing because of pain. up and walking second morning. recovery after home 6 weeks.

suggests  mastectomy first,  second - rib surgery,  then reconstruction.

will need muscle to cover incision over chest wall in area of resection. Either the existing chest wall muscle or muscle harvested from back. Usually reconstruction of mastectomy  uses the chest wall muscle to hold/cover implant. That right side will need additional muscle from somewhere to accommodate both procedures. Plastic surg and thoracic will coordinate about muscle conservative needs.

need a new CT scan ordered by one of my northside docs ( because I want it done at northside instead of emory) either  Dr Garcha or you?

wont' get my new boobs for my September birthday cant' have everything. just a month long or more vacation! lol

seeing PS Dr Mackay on Friday- Garcha on monday.  will let you know of  surgery schedules.

marilyn

thanks for feedback
presume you were comfortable with him
we can order the CT - i presume this is chest CT:  did he have any specifics regarding the CT?

i have not heard from him
sequence is appropriate

drd

DrD

CT of same thing as CT from Dekalb medical I assume. He said that one not recent enough and needs to see the changes. I told him that the front tumor is larger than the May CT - has grown and also changed shape and size after biopsy.

Yes, comfortable. Asked if he had done surgery on a Hemangioma of rib before. Two I think he said. That was all I needed to hear, but I really liked to hear that he could take care of both from one suture site and avoid cutting through as many muscles as I had expected. The recovery time seems less that expected also. All sounds good and acceptable. I appreciate your extraordinary care for finding me the right surgeon - your going beyond your duty and the "extra mile".

Thankfully your patient,
Marilyn

( friend B read above email )

Marilyn

Wow . . . . this is overwhelming for me to hear, much less for you to endure . . . . Have I missed the possible/probable cause of the tumors on your ribs?  That surgery sounds grueling . . . was what you heard/learned in line with what you expected?  We continue to be amazed and inspired by the way you are accepting all this, trusting and moving forward.  Continuing to hold you in heart and prayer dear friend.

B 

B

No known cause for rib tumors. Very rare, maybe no research.

Last night I began being a little anxious about the appointment. During my time with Father this am I ask him to examine my heart as usual. I needed to see the source of my being unsettled. I realized that I didn't want to hear from him (the doc) that I would have to wait on the reconstruction of breasts and I had not wanted to accept that idea at all. I thought that I would have to wait 6 months! My gut told me that this would be the most logical course of action, even without talking to the surgeon. I struggled with letting go of that and when I ACCEPTED IT, it became a non-issue and I was at peace the rest of the day! So when the surgeon discussed waiting until after the rib resection to do the reconstruction, it was no surprise to me and NO emotion at all. Thanks God for preparing me!

You asked if this surgery was what I had expected, well yes and no. I was expecting an entry to tumors from the front and back - longer than 4 hour surgery - more muscles cut than he described - more recovery time - possibility of nerve damage, doc said NO - disfiguring , NO again. So all in all I think I'm ahead. If the only thing not going my way is to wait for the boobs ( "foobs" as they call them ), then I'm blessed!!!!  I'm so fortunate to have found the tumors before they damaged the spine- my assessment based on what he said. And don't forget that these rib tumors allowed me to find the breast cancer in early stage!!!!

From what I understand I could begin reconstruction on the mastectomy about two months after the rib surgery. The rib thing may limit my reconstruction options which I will discuss on Friday with the Plastic surgeon. It's just vanity, but I'm kind of girlie and like to feel feminine.

So the lesson today.... accept the things that you cannot have control over. I wanted control over my foob project but ultimately the key is to be willing to give up control over everything with trust and thanksgiving. But we must not confuse giving up on goals and dreams that we do have control over with those things that are just not going to be under our control. I think I've heard this somewhere before.......

Bless you, may God sustain you and G in your daily walk with him. You are so faithful and such a blessing to so many and God smiles.....

Marilyn

still awaiting news of surgeries......
This past week was non eventful except that I received the official Denial of Claims letter from Humana for both the breast cancer and the rib tumors. Now I  have begun the appeals process which is lengthy and complicated.

At first I didn't know if I could do the appeal on my own but am getting the swing of it after spending some time organizing the info this last week. I have flash backs to high school term paper torture. I then saw such a project as daunting but I'm really happy with what I've prepared so far. It is a multifaceted presentation to the adjusters to explain a very rare bone condition, show that it can grow for years but not be seen, asymptomatic, and that the fact that I did notice a rib on my right side was slightly larger than its counterpart 8 months ago was not a reason for a responsible adult to seek medical advice or treatment. Humana's definition of "pre-existing conditions" is so broad that just about anything that is slightly abnormal for 5 years prior to the policy effective date is considered pre-existing. It is a tough job ahead. To make it worse is that all the notes from doc appts and procedures and tests for both the breast cancer and bone tumors are all combined into same day and same notes so that the terminology is very difficult to determine when statements are referring to what conditions. Both conditions are in the chest area, both are described using words, as mass, lump, breast, etc. Because  Humana cannot see the two illnesses as unrelated––diagnosed/ discovered at the same time––then they are determining that both are pre-existing. I should be able to get coverage for the breast cancer but the rib tumors will be a much harder fight.

To date my obligation for medical expenses ( not covered by Humana ) is $43,659. What Humana has covered is $ 3,685. This is before any further surgeries! So my first priority is to write a really goooood term paper!  I'm thinking about including some self illustrated full color medical diagrams  to make myself understood. A bit much, I know.....

This Tuesday is the appointment with a Thoracic surgeon at Emory to get consult on the rib tumors. Thursday is an appointment with an accountant to help with a large IRS debt. Friday is an appointment with a plastic surgeon to discuss reconstruction options after mastectomy––either immediately or later––the timing will be partially determined by the thoracic surgeon's recommendations. And then next Monday I will have the appointment with my breast surgeon to hopefully schedule the double mastectomy that I have decided to go forward with.

for girls only.....
Breast cancer diagnosis: Infiltration ductal carcinoma. stage 1( left ), lymph nodes clear. ER positive. PR: Negative. Ki-67: 7%. EIC positive. Neg IHC.  pT1c / pNO (i-). EIC positive

I'm still trying to interpret these pathology report findings but prognosis is good. The EIC positive finding indicates a greater risk for recurrence of cancer in the same breast. This was one of the factors in my choosing the mastectomy over repeated lumpectomies and radiation.

Check out the blog list in the side column if you would like to see first hand stories and pictures of breast reconstruction. It's an education! I'll need to be brave. Don't expect me to be including any pictures of my process but these brave ladies have given those of us facing this surgery a first hand look into what to expect. I applaud them for sharing such a private part of their journey for the benefit of us facing it. It helps to know what to expect.
 

three surgeons.....
I feel so special!!! NOT. I will have three appointments with three different kinds of surgeons over the next two weeks.

The first will be a well known thoracic surgeon at Emory to review my rib lesions case. He will hopefully let us know what is ahead with the management of the Hemangiomas of my two ribs. I'll be curious to hear what his concerns may be about any reconstruction of my right breast which is directly in front of one of my rib lesions. I'm hoping that it won't interfere with my mastectomy on that side. My oncologist referred me to this surgeon first out of several because he is the "conservative" one, the one not racing to practice his skills on this rare condition.

The next will be the plastic surgeon who will perform the reconstructions of my double mastectomy. The third will be the surgeon that performed my previous lumpectomy and will be the "dismantler" of my existing breasts. When I have the mastectomy surgery both the "dismantler" and the "builder" surgeons will practice their skills side by side. Along with choosing the plastic surgeon I've also been tirelessly researching the various methods of rebuilding the breasts or "foobs". 

Getting to the point where my surgeons have been chosen and appointments scheduled has been a painful and stressful process. Choosing the thoracic surgeon was not a problem––chosen/ recommended by my oncologist––and the general surgeon that did my lumpectomy was not a problem because I am already happy with him. It was the choice of a plastic surgeon that caused me the stress which in turn led to a 4 day obsession of studying the credentials, experience, schooling, patient feedback, and sample images of boob reconstructions galore!

I was online for hours at a time for days and I just couldn't stop myself. I compare it to shopping for a house to purchase.  It is hard to settle on one thinking that the next one will be better and your emotions lead you to continue the search even when you have found "the one".  I had asked my general surgeon to give me a referral and he gave me two names. I began the lengthy process of comparing the before and after pics of patients of the suggested docs with about twenty other surgeons online and just became more and more confused.

Finally God gave me the assurance that the first plastic surgeon's name given to me by my existing surgeon was the right one. Because the decision of choosing a plastic surgeon was the first decision in this cancer journey that was mine to own and not a life and death issue I think I just wanted to feel like I could take possession of this step - have some say about what my "foobs" will look like. Maybe just maybe I could have some control over some small step in this whole breast cancer thing––a life changing event that has taken me by such force and dragged me around by the hair for the last two months. I was just fighting back and taking control of some minute part of that. It is humorous that I was finally led right back to the straight path that God is leading me down as I trust in him and am acknowledging him in all things. It just took me a while to see that I could choose some things but still not have to lean on my own understanding. In the end he has given me peace again.

As stated in my profile to the right - this blog was to share some elements of life as an artist with breast cancer. Well I have shared about the cancer but have you noticed that there has not been one word about the artist part. I haven't painted since February of this year sad to say. Earlier this year my 84 year old Dad had open heart surgery and my Mom with Parkinson disease had issues that kept me from my part time job of painting. Because my husband and I have a full time cleaning service business my art time is relegated to nights and weekends. When extras in life happen my painting is the first thing to be sacrificed. Now the last two and a half months dealing my own health issues have continued to thwart my ability to paint. But I'll be back and hopefully as I recover from surgeries and not able to do the physical labor required in our cleaning business then maybe I'll be able to handle the more sedentary activity of creating new art.

cancelled lumpectomy.....
Today’s appointment with my oncologist shed new light on the pathology report from the recent lumpectomy ( July 6 ). Because I have an EIC (Extensive Intraductal Component) positive status the risk of local recurrence is significantly higher. I still have the option of breast conservative lumpectomy but a complete removal of the breast with reconstruction is the choice that I am leaning heavily toward. So I cancelled the surgery on Friday until I have more time to consider options and do some more research on the matter.

If I opt for the mastectomy, then radiation will not be necessary nor would I have to have a mammogram every six months for the next 5 years. Either way I will have hormone therapy for 5 years. The higher risk of recurrence of the cancer in that breast is the main reason for considering the mastectomy over just taking more tissue out for better margins. My likely chances of more lumpectomies in the future in that breast would mean more carving at breast tissue and likely lead to a future mastectomy anyway. I have an appointment with the surgeon on Monday and will discuss my options then.

No more definite word on the rib/bone tumors. Because they are benign they can wait until after we deal with the breast cancer. Dr D has received conflicting opinions from the various thoracic surgeons consulted as to how to proceed. More doctors at Emory are being contacted––Dr D wants to find the best in Georgia to deal with this rare condition. He says that the surgery will be very complicated and severe––always something to look forward to!

No word yet on the insurance denials of claims. Humana is still investigating if the breast cancer and bone lesions are pre-existing and if they will pay for it all. They will pay but I'd love not to have to think about insurance right now. Thanks again for your many prayers as we make numerous decisions on my health management, business schedule, financial matters and more. Our spirits fluctuate between medium and high which is remarkable. God receives the glory for that!

lumpectomy #2......
I didn’t expect this post! The surgeon called today to give me the completed pathology report from surgery done on July 6th. He'd "tell me the good news first." My lymph nodes were clear ( he’d already told me that ) and that my tumor was a centimeter in size and is classified as a stage-1 breast cancer. The bad news was that he is not happy with the margins ( the distance between the removed cancer cells and the clear cells ) achieved from the surgery and determined from the pathology report. So... I am to undergo another surgery this Friday to remove more tissue from the areas. It will be the same surgery but no lymph node biopsy or directive wire needed this time. As before, I will be asleep and the procedure will be done out-patient.

There are so many surprises! I hear this is not uncommon but it was unexpected for me and Kenn. We have been trying to get back to regular work schedules with our clients but I know they must be frustrated with our constant changing of their "day" or missing their appointment altogether. But what understanding and supportive people we work for!!!! Several have paid us even when we couldn't work and others are offering to support us for a while as needed.

God has really blessed us and provided our needs in so many ways these last couple of months. Family and anonymous donors have helped make up for lost revenue and we are so very thankful to all who have offered prayers, friendly support and financial gifts. The multitude of prayers on my behalf have resulted in miraculous answers of peace, positive prognosis, faith, provision and clear direction. We have many more steps ahead in the treatment for the breast cancer as well as the management of the rib tumors but our faith having been so recently strengthened surely will carry us through it all––thank you to all who have so faithfully been loving us in so many ways.

lumpectomy......
OK, girls, it isn’t that bad. Actually other than the first part before surgery, the procedure was just nothing to be anxious about. The mammogram and insertion of the guide wire ( to guide the surgeon to the tumor with exactness ) was a bit painful due to the deadening shots but we are adults and should be able to handle those by now. It was an outpatient procedure with the day beginning  at 7am and ending when we left the hospital at 3:30. I was a little sleepy but hungry ( nothing to eat since dinner the night before ) and Kenn took me to the Galaxy Diner for scrambled eggs. I went home to sleep off the pain pill and was up good as new Saturday morning.

No more pain pills were needed the next morning ( actually didn’t need the one I had after the surgery ) and I felt so normal that we went to a cookout with the church folks Saturday afternoon. Sunday I went to church, out to lunch and then to a neighborhood pool to sit on the side cooling my feet and visiting with friends. Monday we worked cleaning one house and took my Mom and Dad to lunch up in Marietta. So, you can see that the surgery was not something to stop life from happening as usual. This is an amazing time we live in!

I am happy to report that my lymph nodes were clear and some radiation treatment will complete my breast cancer management. I am so happy with the breast surgeon. He’s a great guy–cute too– and did excellent work. It was a surprise that there were no stitches, not even a bandage––glue was used! It waterproofed the incisions so that I could take a shower just 24 hours after surgery.

I’ll be seeing Dr. D next Wednesday to hear more about the radiation for the breast cancer and get some news on the management of the rib tumors. I have the name of the chief of thoracic surgery at Northside Hospital who Dr. D is referring me to. This will be interesting .......

The down side to it all has been dealing with the insurance company. I’ve learned that they are investigating my medical claims. They are holding payment on anything until they are convinced that my conditions are not preexisting. Their questions are understandable since my policy has only been in effect since March 1 this year––but none of my records will show anything existing pre-May 18th nor will any of my physicians indicate any condition existed before that time either. So when this investigation concludes, Humana will pay. Sorry guys––you are just out of luck.
What a hassle!

summary of June ......

So much has been packed into a four-week span that I must reflect and see what I have learned. I believe that we are here on this earth to learn eternal lessons as well as earthly ones. I’ll take a moment to share a little of June’s curriculum:

  1-  don’t miss your mammogram––it can save a life! men, insist on your gal going!

  2-  have medical insurance and savings!

  3-  at least one of you must have a "real" job,  self-employment doesn't pay sick leave.

  4-  ladies, if you are going to have a lot of medical tests, have a large wardrobe of blouses that
       button up the front


  5-  if the nurse says a test will take an hour, plan on being at the hospital all day!

  6-  if you sit at the hospital all day, don’t be fooled into thinking you are going to get rest––you
       will be exhausted by the end of the day!

  7-  news is not truth

  8-  74 year old doctors communicate with their patients by iphone

  9-  when facing death, every morning in prayer is as necessary as oxygen ( now I see even 
       when not facing death it is still necessary )

10-  memorized promises from God will get you through needle biopsies

11-  being sick is a full-time job for two people! even when you, the sick one, has never felt better in
       your life

12-  prayer makes all the difference!

I’ve only traveled a little way on this journey but I’m hoping that the drama will lighten. By now, the fact that I have breast cancer has lost some of the sting. Compared to the prognosis that I was facing just a week ago at a 14% survival rate, now I think my prognosis is somewhere between a 82% to 92% five year survival. Great improvement but I'd bet on 100%!

meeting the new doc ......

on wednesday, we met with the breast surgeon at his offices in alpharetta––because we were willing to go all the way there, we were able to take someone’s  cancelled appointment and get in immediately.

dr. garcha is a fine, young and very capable surgeon. his demeanor was pleasant and he was quite affable and attentive. we covered all the angles and he patiently answered our numerous questions without hesitation. the information was forthcoming and gave us a great deal of confidence in his expertise––after all, dr. d. highly recommended him. [ we were pleasantly surprised to meet one of his associates who, as it turns out, is a graduate of WHS––class of 1998––that's a little after our class ... ]

dr. g. ordered an MRI so he could get a clear picture of where the lump is located and just how much material he will have to remove to insure nothing is left behind. we were able to book the appointment while in his office ... this friday at 8:45am.

friday
this morning we rose at 5:45––another early morning in our journey––and made our way to northside hospital arriving just after 7am ... we had a little time so we found the cafeteria and had a nice breakfast together ... they even served oatmeal, granola and had a plethora of fruit and toppings to enjoy!

the MRI took a couple of hours and once completed, it was suggested by admissions that marilyn go ahead and do the prep for her upcoming operation. this would save us another trip to the hospital. so, we went to the prep area and she had blood work done along with an EKG. we were finished around noon so it was another five hour stay. so now it’s on with the surgery, july 6!

surgery scheduled......
Today we saw the breast surgeon. The doctors get younger and younger–––but we really liked him because he answered all our questions and gave us all the time we needed.

An MRI is ordered for Friday this week and the results next Tuesday will confirm that a lumpectomy is the best course. This out-patient surgery will be scheduled for Friday, July 6th. Recovery should take only a couple of days. Radiation for 5 days a week for the duration of 6 weeks should follow soon after surgery. I’m not sure yet about hormonal therapies being used in treatment as well. All in all, I’m getting off extremely easy. Surely not what I was facing if the bone tumors had been cancer. The breast cancer is no longer this threatening insurmountable thing and it all feels like I have just a summer cold to cure by comparison.

My doc is presenting my hemangioma tumors to a thoracic conference and may be seeking outside opinions to determine how to proceed with the rib tumors.

This has been quite a month and we are emotionally exhausted. One minute I’m drawing up my will and getting ready for the worst and now I’m to go back to regular life schedules and problems. In between life moving on I’m still scheduling tests and procedures, taking care of numerous insurance issues and paperwork and trying to work as much as possible. All is good but really hard on the body and mind. Kenn and I have drawn closer through this so that is a wonderful blessing. Humor has been a big part of getting through this and keeping our spirits up but God’s word and promises have been the strength that has sustained us. The many and constant prayers lifted up for me and for Kenn have been felt all along and I thank you all for them. Please continue to lift us up while we seek his direction, his provision and his continued peace.

rewards of waiting .......
The second best thing that happened today was that I didn’t have to drink the barium drink, citrus flavor. This morning Dr. D called me just prior to the time for me to drink it as he had canceled today’s scheduled PETscan.

The best thing that happened today ....... Dr. D told me that my bone tumors are not cancerous!!!!!!! confirmed by the second biopsy. They are Cavernous Hemangiomas, vascular tumors that are benign and very rare. You can’t imagine what spectacular news this is! The fact that my breast cancer has not metastasized to my bone is nothing short of a gift of life. As it stands, the breast cancer and the bone tumors are totally separate conditions and the fact that I have these tumors in the bone precipitated my discovering the breast cancer. Praise to my heavenly Father!

I already have an appointment with the breast surgeon tomorrow at 2:00 to determine what kind of surgery is recommended and maybe I’ll have an idea of when that will take place. After the surgery it will be back to the oncologist, Dr, D. for treatment prescribed, most likely radiation and hormone therapies.

We didn’t discuss what we’ll do about the bone tumors. They are on the back burner for now while we take care of the breast cancer. What I’ve read is that surgery to remove the tumors is usually prescribed but what do I know at this point?

Kenn and I tried to absorb the news and went to clean two houses. It is so strange to carry on with regular work and allow all this to sink in––what a roller coaster ride it has been! We are on the top flying high today but at the same time I am doing what I am usually doing, cleaning toilets and dusting other people’s houses.

And now .... I think I will try and get some rest ...

more waiting and tests.....

My emotional state has been one of exuberance since the news that my "bad news" was incorrect. I'm happy that my first bone biopsy did not show cancer, but curiously I'm not as joyous. I miss that zone of being so close to God's care and love that joy just flows through my whole being. I wonder if we have to be at the depths of our fear, anguish, sorrow, or need to experience the closeness that comes with drawing near to Him every moment of the day. We don't normally allow ourselves to be so possessed by seeking his face ever before us. I've missed that closeness these last two days. Are we destined to be spiritual adulterers most of our lives? If so then I welcome the darkest days. Only then do I see the brightest light from his face. That is a most unfortunate state of being human. 

 

Tomorrow we may hear the results of the second bone biopsy, praying that it too will not be cancer. I have a PET scan scheduled. In the morning I'm to drink a horrible looking thick mixture of barium, citrus flavored. Then later at 2:00 I'll lie in a scanning chamber for 2 to 3 hours. I'm to wear something loose, warm and containing no metal–––sounds like my flannel drawstring pants will be just right. I think this test is to examine the rest of my body and organs to see if there is any cancer ( the breast cancer ) anywhere else. After ruling out bone or other cancer sites then we will be able to determine the best treatment for the breast cancer.

 

All these many tests/procedures on this one person's body has already amounted to $24,000. in one month. And that is before any surgery or treatments! It just blows my mind! God is providing the ability to move forward with all these tests but continued prayer is needed. I've heard that my new insurance policy's company ( start date March 1, 2012 ) is doing their thing and investigating my case for pre-existing conditions. I'm sure that is quite normal practice but is still a bit unsettling. Now who would be so stupid to have a policy for two years like I did, know that I had a medical condition, and then drop companies and switch, endangering their coverage? Not me!!!

very promising...... 

Wow, do I have an update today!!!  In my last post I mentioned that we had learned the results of my bone tumor biopsy from the oncologist's nurse. We were in his office Thursday to drop off insurance paperwork for the doctor to sign and I was determined to stay until someone would tell me the results of my then 8 day old test. I should have had results in 3 to 5 days and I was tired of waiting!! After sitting in the waiting area for half an hour the nurse took us to a private room and sat us down. She said that my biopsy showed that I had bone disease and that it was cancer. I asked her if the pathology was the same as the breast cancer. She answered yes. The nurse said that the office was giving us an earlier doc appointment for Friday 8:30 am. and the doc would go over it with us... OK.

It was really strange for both of us after this news. We were unaffected, almost no emotion and really calm. I stayed happy all day and was just prepared for what was coming next. Chemo, surgery, radiation, the whole nine yards. I'm in your hand Lord––still hanging onto Proverbs 3:5-6. ( this scripture has been my rock )


This morning we went to my appointment with the anticipation of learning what a possible treatment plan would be. The doc led us into his office ( very punctual ) and laid out his findings thus far. He mentioned that "we have the breast cancer over here and the inconclusive or non cancer results over here for the bone biopsy". WHAT WHAT!!!! Our mouths dropped open. We quickly told him that was NOT what we had heard yesterday from his nurse. "She had said bla, bla, bla". and his expression said WHAT WHAT! I'll go talk to her right now––maybe she knows something I don't!!! We looked at each other as he left the room with hope.... When he came back he said "Forget everything she told you, she misunderstood me completely. We were amazed and delighted.


Now the doc toned us down a little saying that the test had not shown any cancer but further tests were needed. So later today I had another bone biopsy on the front tumor. Another full day at Northside Hospital––goody––not! Tuesday I'll have a PET scan with another full day at the hospital. But the doc says that we have to totally rule out cancer of the bone tumor and find out what is going on with those. But this is looking good. We are going from what we thought yesterday–––breast cancer stage IV ( the beast )––to breast cancer stage one maybe with as little as a lumpectomy and rads with the bone tumor maybe being totally unrelated. He could not emphasize enough how much difference this would be ( very positive ) and he admitted that it is the outcome he may be favoring with all the other findings of my testing- blood work came out perfect––full body bone scan was clean other than the two known tumors.


God has given us such encouragement today and hope that the road ahead is not as difficult as all were expecting. We could be surprised again and learn of unexpected outcomes but we will wait on the Lord to reveal all in his timing. Thank you all again for your thoughts and prayers. We feel them all coming our way and making all the difference.

first post......
So, this is my first post, post-discovery of the the Big "C". I would say that it will be a long difficult journey ahead but I know that good will come of it. I expect it will define my life as much as my art has, maybe even more. For a while at least it will become my full time job. You notice that I titled this a journey of survival- I will give it everything I've got.

I'll try to post as often as possible to keep you updated on how we are doing.
Because this  story began a little over a month ago and I haven't kept everyone in the loop until now, I've asked Kenn to post here a collection of emails and facebook posts he has so thoughtfully been sending to friends and loved ones. Sharing the events in real time this way will give a better perspective of our developing feelings over the past month.

may 18 [ friday ]
took an xray at our chiropractor and dear friend's today ... dr. joel seemed very upset as he read the film ... he seemed unable to look marilyn in the eye, as he cares for her.....

may 23
hope u r well ...
marilyn has discovered a large boney mass on one of her ribs ... her chiropractor xray'd it ... with concern, he sent it to his son-in-law who is an orthopedist ... then he had an associate walk it over to dekalb medical for an assessment by their radiology ... suggestions were made that she have a CTscan ... she will on friday ... we think that there will be surgery regardless of the status of the mass ... may mean not working for four to six weeks ... not sure how we will make income ... but God ... please pray with us as we excitedly wait for the path that we are confident we are to travel ... and any new things that will come from "it" ... marilyn is holding onto Proverbs 3:5-6, " trust in the Lord with all your heart and lean not on your own understanding, in all ways acknowledge  him and he will direct your paths"
love to u 2 ... kennman

may 25 [ friday ]
had the CTscan this morning ... no results as of yet ...

may 28 [ monday ]
marilyn:  the CT scan was friday am and i didn't expect to know anything until tomorrow at the earliest. but is does seem like a long time when you are the one waiting. i'm at peace and preparing for anything but the waiting is not fun. thank you for your prayers and interest. you will know as soon as we do.

may 29 [ tuesday ]
got a report today from the CTscan ... too much to share but it generally concludes there is enough showing to suggest further tests are encouraged ... biopsy, MRI and ? ... made an appointment with an oncologist for monday at 1:30 ... he will read the scan and possibly do some blood work to see what is up ... so ... looks like it is still a "wait-and-see" situation ... we are exercising faith and know that there is a path laid out for us and we are looking to the Lord for everything as we move forward ... does that about cover it?

june 1
marilyn:  nothing new ... this is marilyn this time. I've been preparing for anything next week. got the will done along with power of attorney and living will. needed to do this a long time ago and don't want to have to deal with it if surgery is scheduled quickly. getting the home squared away, passwords listed for KENN for bills and such, calling clients and informing them of likely schedule changes, etc.  when i read online stuff i get sick at the stomach––too much info of what it could be. but my mind and heart are at peace for God's will and plans for Kenn and me. humor is still plentiful here in this house, not dreary, thanks for your prayers

june 1
it took a week to schedule the CT scan. had it last Friday. Results were on Tuesday because monday was a holiday. seeing an oncologist for further evaluation highly recommended. so called right away on tueday, earliest appt for this monday at 2. I'm thinking more tests will be ordered by him and things will move very quickly from there if cancer is suspected. This all started with an xray from my chiropractor and I'm pretty sure he thinks it is not going to be good..... very concerned.

the big surprise for me about the CT results was that i have not one but two bone tumors. one is on the front right rib behind my breast and is 7x 6 cm. the one i didn't know about is on a right back rib protruding into the chest cavity so i didn't feel it's presence. it is larger at 8 cm by 6 cm. no pain just noticed the one on the front growing noticeably in last two months. these lesions are growing into the bone and disrupting the cortex so i'm pretty sure that they will both be removed surgically either way, cancer or not. having two removed will be harder to recover from than one, bummer. cancer would be a much bigger bummer––like on steroids!

june 4 [ monday ]
first meeting with new doctor and oncologist, dr. daniel dubovsky. he seemed alarmed after viewing the scan ... said he would have his number one guy review it [ he talked with him via phone in our presence ] ... told us he was leaving the country on friday but that he would have his team on it ... "hope to get all the tests buttoned up before i leave ..."

june 6
tomorrow, the first two tests are scheduled, a mammogram and a full-body bone scan ... from this will come a move toward a diagnosis ... next wednesday will be a needle biopsy .... this should tell all ... maybe then we will have an actual diagnosis. thanks for all the support ... we will keep you posted.

june 7
got to northside hospital at 7:55 [ parking lot stamp ] and marilyn had a couple of tests scheduled ... we left a little after 3pm [ that is, according to the parking lot stamp ] ... eight hours was exhausting ... she had a mammogram and a full body bone scan ... talked to a female doctor ... scheduled two biopsies for next week, tuesday and wednesday ... one breast lump biopsy on tuesday and bone biopsies on wednesday ... looks like our work is going to get interrupted for sure ... marilyn has no pain and is generally happier than usual ...

june 13
just got the first word on one of two major tests done yesterday and today ...the breast biopsy looks like it's the Big C  this was a big surprise because we thought the breast lump would be nothing ... still don't know the results of the bone biopsy done today ... we are hopeful that the boney masses are not cancer as well ... this is the best word that we are holding on to: “For I know the plans I have for you, declares the LORD, plans for good and not for evil, to give you a future and a hope.” Jeremiah 29:11
june 14
marilyn wants to let you know that she is in god's hands and at peace with the journey he has her on ... and he will give her strength to endure all things ... and, most of all she prays that He will be glorified either in her healing or in her illness ... “in christ's humanity, he prayed that the cup might be passed from him, that is, that he might not have to endure the ordeal, but he also prayed that the father's greater purpose be done ... ” marilyn is in a place where she has relinquished all control over what happens to her physical body ... glory to be the outcome, regardless ... [ she is standing next to me dictating ]

 
june 18
no word yet ... still holding waiting for the news ... she's a trooper ... another good day in her spirit ... strong and steady ... able to make important decisions and phone calls, etc ... still hanging in ... she's napping now

june 20
today was the big day we have been waiting patiently for ... the bone tumors are cancer too and the same kind as the breast cancer... not a surprise, so our emotions have surprisingly not changed...tomorrow will be our second visit with the oncologist and we hope to hear what the plan of treatment will be... love to all and thanks for all your prayers... marilyn