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.