Archive for Medical Update – Page 2

Surgery Day – Hospital Stay SHOOT

Time passes, though sometimes more slowly.  November 18, 2013, my surgery date, was nearly 5 months from the day I learned I had breast cancer, June 25, 2013.  The original shock and fear gave way to acceptance and a project to focus on finding beauty in life despite and within the hard days to come.  Tests, waiting, chemotherapy, side effects.  There were many hard days and the time dragged on.  During the month between my final chemo treatment and surgery day, many difficult decisions about what kind of surgery, reconstruction and then when to begin reconstructive surgery had to be made.  In the end, I decided on a bilateral mastectomy with left axillary node dissection.  I didn’t want to ever do this again.  I also chose reconstruction to start at the same time which made it became a more major surgery as tissue expanders were placed under the chest wall muscle.

OPERATION ROOM PHOTOS  We received special permission for Paige Stoyer to photograph my surgery in the operation room.  If you are interested (note they are very graphic) click link and enter password “surgery”  http://wp.me/p3Limh-iU

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Images below include the lovely nurse at St. Vincent’s Hospital preparing me for surgery, as well as the anesthesiologist who called me the night prior to surgery to review my drugs and assure me I would be sound asleep and not feel a thing until later.  I liked how the surgeon, Tammy De Le Melena, wrote “Yes” in my left breast.  I felt scared but very comfortable with my surgeons and glad to have my family close.  I also was ready to have the tumor and lymph nodes out so I could stop worrying.

Hospital Pre-Op

Hospital Pre-Op

Below are images with my mother, Helen Brown in the brown jacket.  The second image is with my sister, Paula Johnson, watching me put on my red lipstick for surgery.  In the background are my friends Lisa Helderop and Laura Klink.  The last image is with my birthmother Pat Nida.

Hospital Pre-Op with family

Hospital Pre-Op with family

I waved “Goodbye tumor” as they wheeled me away.  I remember being in the operating room where the operating room nurse had me sit up and threaded a pain pump into my back.  I remember him holding me tightly and wondering why.  The next thing I knew I was breathing deeply, the nurses were saying good job and I said “I’m having trouble breathing.”  Then I was out.

Operating Room

Operating Room

I don’t remember being in the recovery room except for thinking, “I’m glad the tumor is gone.”  I’m told my lipstick stayed perfectly intact.  I do remember being wheeled into my hospital room and the man pushing my gurney had trouble lowering it to my bed height.  The jostling was hurting me and I remember looking directly at him and saying, “Stop that.  I’ll walk.”  The friends and family who had waited during the 5-hour surgery and 2-hour recovery came into the room to say goodnight.  I was happy to see them all.  I was also hungry and pretty loopy from the anesthesia and pain meds.  A tall dark and handsome doctor walked into the room and I told him he was cute and could stay.  I spent one night in the hospital as that is what insurance covers and all I wanted to stay.  I got very little sleep with two nurses named Sarah coming into my room all night. I was near the elevators and it was noisy.  I wanted to be in my own bed.  I wasn’t released until about 5pm the next day once the plastic surgeon, Dr. Shannon O’Brien, came was sure my pain was under control. She loosened the wide ace bandage, which felt like it was strangling me and peeked underneath.  I looked with her and saw that I still had my nipples.  Oh happy day!  The nurses told my older sister and mother how to care for me and empty and measure the five drainage tubes that hung from my sides.

Hospital Post-Op

Hospital Post-Op

It never occurred to me that I would be told one week later, at the post-op appointment, that I would need another surgery the following week.  The pathology results were good (I’ll share the specifics later), but there was not enough margin taken around the tumor due to the location.  I’ll write another post about the 2nd surgery as well as how I felt physically and emotionally during the month that followed soon.  I’m still recovering, experiencing bad chest spasms from the expanders, taking 1/4 of my pain and full spasm meds.  I cannot drive or work yet.  I’ve also started to develop lymphedema in my left hand. This one really shocked  and upset me.  I’m frightened of it.  The insensitive physical therapist who evaluated me today and told me my lymphedema is permanent complained that HER job was difficult because she had to tell people that.  Instead of repeating that it’s permanent, it would have been much more useful to hear how I could deal with it.  I would have liked her to talk about how I am going to manage it.  How at just stage one others have been able to reverse or prevent progression.  Instead I was left feeling rather hopeless and cried my way home afterward.

I thought the weight of just having the cancer removed would make everything easier. It has but the recovery process is much more difficult than I expected.   Tomorrow I begin the inflation of my breast expanders that were placed under the chest muscles during surgery and will continue once a week until I start radiation.  Radiation doesn’t have to start until early Febrary now, which means I can do the expansion more slowly than twice a week. (My radiation oncologist reviewed the surgery pathology and now says I can begin radiation 10-12 weeks after the first surgery.  Originally it was estimated I would only have 6-7 weeks.)  I will also now have PT twice a week for the next several weeks.  I may try to find a new physical therapy groupo but the holidays are coming and I need treatment now. Just like before each chemo treatment, I do not feel ready for the expansion tomorrow. I don’t feel strong enough, recovered enough.  And yet, it is the next step (which we delayed last week due to the second surgery) and needs to happen.  So I step forward.

Update:  I had my first breast expansion today with Dr. O’Brien.  The “fill up” as I say or “top off” as my friend Laura calls it was interesting to watch. Saline was pumped into my breasts (there is a port beneath the skin that the doctor simply put the needle through) and, what do you know, my breasts got a little bigger.  I have small bumps now.  I even have a nipple that feels something.  Amazing!  She said this will help my chest spasms go away as it’s likely the folds in the expanders that are causing them.  I will have Paige take photos of the “fill up” at some point so others can see what it looks like, too.  It was only a bit painful when the needle entered.  Also, I contacted another physical therapist, asked Dr. O’Brien, and met with the lymphedema garment specialist.  All said that stage one lymphedema, like what is in my hand, can be reversed. Okay, let’s go with that and do whatever I need to do.

 

 

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Medical Update 12/11/12 Good news & scary insurance news

I’m  behind on posting to the blog  as I’m still recovering from surgery.  I have 3 shoots yet to post, two by Paige Stoyer documenting both the “Girlfriends’ End-O-Chemo Party” and the “Surgery,” as well as my stories of recovery and then Fritz Liedtke’s amazing shoot of my chest 4 days post surgery.  I am 3 weeks beyond the bilateral mastectomy now and 2 weeks beyond a second unexpected surgery and want to post a medical update.  So 1 week after the original bilateral mastectomy I learned that the surgeon did not get a clean margin around the tumor due to it’s location very low on my breast.  This was not a mistake she made, but something she simply could not know until the pathology came back.  The 2nd surgery was 1 week later (with Thanksgiving week between) and was an outpatient procedure and not nearly as invasive as the first.  It was, however, stressful, as it didn’t occur to me I might need a second surgery and there might still be cancer left in my body after such a radical first surgery.  It’s also set me back on the healing process and when and if I would be able to drive or work in December.  I still don’t know.  A small price to pay for piece of mind, however.  I just got the pathology back.  Everything was clean this time!  In other words, the bilateral mastectomy and left axillary node dissection removed all of the detectable cancer.

I also learned that the 4 months of chemo was effective.  The tumor was less than 1/2 it’s original 4cm size.  (6/13/14 update: I later learned that this is incorrect.  The chemo did not shrink the tumor at all.  It was not 4cm but 1.8-2.0cm both prior to chemo and when it was removed.  ACT chemo is not usually very effective with ER+ breast cancer.  I did not know this.)  Cancer was found in 2 of the 8 lymph nodes (6/13/14 update: it was actually 7)  removed on the left side and the chemo had also shrunk those.  (I am not longer sure this is the case here either.  The tumor in the node was nearly 1cm.)  All good news as it means that, hopefully, the chemo also took care of any renegade cells floating around my body.  I think, anyhow.  I will still need drugs for the next 5 years or more to help prevent a recurrence.   What’s next?  The plastic surgeon placed expanders under my chest wall during the bilateral mastectomy.  I need “fill ups,” where saline is pumped into the expanders to stretch the tissue to create new breasts, over the next 3-4 weeks before radiation begins.  I was not recovered enough this week to start that process as planned.  The second surgery went in through the same incision and it’s not healed yet after just one week.   When you see the photos from surgery, if you choose to look at those (they will be password protected so you don’t accidentally see them if you don’t want to. They are very graphic), you’ll understand what a major surgery this was and how traumatized that area is.  I do still have to have 6-7 weeks of radiation every day, as there was cancer found in 2 lymph nodes they removed.  That starts 6-8 weeks after the first surgery, I think.  Or maybe after the 2nd surgery?  It’s all a bit confusing right now.  I have to wait for the radiation oncologist to look at everything to give me the final date and then the reconstruction plastic surgeon has to work within that time frame to “fill me up” twice a week to whatever point my new breasts will be.  I have to stop regardless of whether or not I am my previous D cup when I need to start radiation.  This is not a case of choose your ideal Victoria Secret size.  It’s more a matter of doing what we can with the constraints of the time we have and how I do with the pain.

Bad news-  I have no idea what my health care will be on January 1st as my plan is ending.  I just contacted Cover Oregon and they have no record of my insurance broker submitting my application, which I did several weeks ago, or of me even being on his client list.  The woman told me I was now past the deadline to be covered for Jan. 1, 2014 but that maybe the broker could get me something temporary until I could get coverage on Feb. 1.  To my understanding that would mean I would have yet another deductible to pay out of pocket for radiation during January that would not apply toward my new plan on Feb. 1, 2014.  This could be up to $5000 I would then have to start paying toward again in Feb.  I have a call into my broker now and have even contacted a second broker as this is very concerning!  I wonder how many other people with cancer have this additional stress right now.  Yikes!

PRESS Oregonian follow up 11/29/13

Oregonian Friday, Nov. 29, 2013

Read article online 

Follow up article published 11 days after surgery.

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Post surgery note

Medical Update

Thank you for the emails and messages since the surgery and the Oregonian’s article came out.  I am 2 weeks past surgery now, but still recovering and have needed far more help than I anticipated.  My older sister and mother have cared for me 24/7, and I am just beginning to do things for myself again though I can’t drive and still have drainage tubes in my sides.  I am not really writing much at the moment.  Sleeping, eating and taking pain pills is more my regiment.

Paige Stoyer photographed the pre-surgery chemo-girlfriends party at the Benson Hotel and was actually in the surgery room during the double mastectomy and reconstruction.  I have not yet seen these images and will wait to view them until my next week.  I will also share photos from the shoot four days post surgery with Fritz Liedtke, as well as the self portraits from after surgery once I’m recovered from the next surgery I’ll explain next.

The post-op appointment with my plastic surgeon went well.  No problems. I’m healing well.  Evidently my nipples look good on the outside as well as the outside and they were able to save them during surgery.  This was very good news to me as I woke up looking somewhat more normal than I expected.  The post-op appointment with my surgeon, however, was not quiet so good.  Due to the location of the tumor, even though it was much smaller than before chemo and there was only cancer in 2 of the 8 lymph nodes removed, I need additional surgery this coming Weds to create a wider margin around where the tumor used to be.  This is just to be sure we got everything.  So there’s little time or energy to process where I’m at now before I have more surgery.  I will wait until then to begin posting.  Thank you for your thoughts and support.  The outlook is very good and my hair is growing in the meantime!

 

Waking up without my breast. Pre-surgery thoughts.

I wonder what it will be like waking up without my breasts in two days

Will my first feelings be of sadness for my missing breasts or gratitude for my missing tumor?  Will I remember that I chose this path of a double mastectomy as the best option to keep living a life I love?  Will I recall that I made this decision to rid my body of the cancer now and save myself the anxiety of it coming back in my other breast?   I’m 44, will I remember that reconstruction and symmetry are important to me and this is the first step?   When I wake to a flat chest with only skin, nipples and plastic expanders, not yet filled, will I feel as if a limb is gone?  The doctor has said I may have phantom pain.  This is not internal surgery on an organ, but an external part of my womanly shape and identity.  Will I feel less feminine?  When I see the five drains that will empty the fluids from the wounds will I remind myself that the alternative is far worse?  When I reach to touch my breasts and they are numb and I realize that I will never again feel them being touched will I be angry I made this choice or grateful I had the option?

I’m trading my real breasts for my life – or perhaps just my sanity.  At least that is the bet I am waging.  Statistics show the same survival rate for women who have a lumpectomy as those who have a double mastectomy.  So maybe I’m just trading my breasts for some control.  I want to know that it won’t come back in my breasts.  I want certainty that I won’t go through chemo and surgery for cancer in my breasts again.  MRIs of both breasts looked suspicious and were hard to read, as my breast tissue is very dense, as is the case with many younger women.  So dense that a mammogram did not detect my cancer, even though I found the lump.  I don’t want the stress of retesting and having biopsies each time we find something uncertain.  I’m done with cancer in my breasts.   If it comes back elsewhere in my body… then it’s an entirely different game.  Once breast cancer metastasizes it is treatable but not curable.  So I’m treating this curable breast cancer as aggressively as it has grown in hopes that it ends here.

I wonder at what point I can declare myself cancer-free.  After surgery when the tumor is removed?  After all treatments, the radiation oncologist says.  But I want to begin thinking it after surgery.  I know there are cancer cells, too small to be detected by any advanced scanning, that are likely there.  The truly difficult part of cancer, for me, is keeping my mind from spinning into the ‘what if’ questions and staying focused on the ‘what is.’  Cancer treatments live in a world of studies, statistics and percentages.  I’m thankful for this, but my mind does better with the present.  ‘What is’ on Monday after surgery will be no more detectable cancer in my body.  I’ll write that in big letters and tape it on my fridge.  I’ll try to imprint it in my mind.  I’ll ask my friends to remind me when I am upset, hurting or anxious during the next 3 weeks of recovery and then 3 weeks of reconstruction where my breast implants are filled twice a week.  I’ll ask them to remind me again in about 9 months when I go through the final reconstruction surgery.  In 6-8 weeks, January 2014, when I begin 6-7 weeks of radiation everyday that makes me fatigued or burns my skin I may forget again.  Right now I want to think of radiation as the ‘bonus round,’ icing on the cake, to ensuring I get to keep this cancer-free outcome, but I may not remember this perspective.  Yes, let me complain at times, I’ll need that.  Don’t expect a superwoman, I’ll cry and feel my experience fully.  I’m not one to sugar coat what’s really happening.  But help me stay with the “what is” as I go through it.  Help me find the beauty in “no more detectable cancer” even before I’m finished with treatments.

Photo by Paige Stoyer of plastic surgeon Dr. Shannon O’Brien as part of her continued “The Real Thing” documentary series. See Plastic Surgery consult SHOOT for more.   Shot Week 16 of chemo, Oct 29, 2013

Pre-Op with plastic surgeon

Pre-Op with plastic surgeon

 

 

 

Week 17 – End of Chemotherapy!

Week 17 – End of chemo.

It’s over.  This part anyhow.  Chemo officially ended after 16 weeks.  Four months of treatments every other week.  Most of that time feeling pretty crappy with 3 or 4 “good” days at the end of each treatment cycle.  In immediate retrospect, without the perspective of more time, I can tell you my ACT chemo, although I felt terrible at times, was doable.  If you had to, I image you could and would do it to and would find joy, too.  Time passes regardless of your circumstances, although sometime it seems to pass more slowly.  In my case, four months felt like a year.  However, I did arrive at that marker and now it’s done.  Four months and much has changed for me, but that’s it’s own story for another post.

There was a brief moment of celebration right after my last treatment where both my mom and birth mom were at my house with champagne.  A toast to the end of treatments before the side effects of the final treatment set in again.  A toast to my wonderful nurses at Providence Portland who made me smile, my oncology doc, Dr. Alison Conlin, and friends and family who got me though it.  There was also chocolate and flowers to make the day complete.  But whereas I thought I might have four weeks of celebration and a reprieve between chemo and the surgery that is scheduled for Nov. 18, 2013, I’ve found this time to be quite stressful.

Mom and birth mom.  Last day of chemo

Mom and birth mom. Last day of chemo

 

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Final chemo with sister

Physically, I am very fatigued.  Not just tired, but extremely fatigued.  Not the kind you can will yourself out of or fool with an extra cup of coffee.  I have the best of intentions to try get back into my photography studio and earn some money to pay for all these expenses, but my body forces me to rest.  I’m weak and I don’t want to be.  I can handle far less than four months ago.  I go in for a couple hours and do what I have to do then go home again.  To be expected, but not what I expected of myself, I suppose.  Most of the chemo side effects have passed with a few remaining and a few new ones that have started since my last treatment.  I’m officially done, but I’m not recovered.  Aside from the fatigue, I still have massive hot flashes every hour around the clock.  The throw your wig to the floor and start taking off your clothes kind.  These continue during the night where I wake up with the sheets and my body soaked.  I keep a towel in bed with me to dry off as I can.  There are too many to bother getting up and changing.  These are from the chemo-induced menopause.  We don’t know if this is a permanent change or not.  Oh yes, I’m still bald, although I’m growing blond duck fuzz now.  I’m afraid it will turn into feathers eventually.  It started right before my last treatment although I had heard it would take a month.  Determined hair!  I had to email my cousin Linda, who’s been through this, too, and ask her if the fuzz was actually hair or some kind of side effect.  It’s very weird stuff, but I’ll take it now.  Since my final treatment I’ve lost more eyelashes and eyebrows, though a few still hang tight.  I’ve developed neuropathy in my feet (my toes tingle without my being kissed) as well as a skin rash on my nose.  Both should go away, but doctors can’t say when.  Both of my big toenails also became infected and had to be cut away.  Now that was a fun day!  I wore Birkenstock with my toes wrapped in big bandages just like the Flintstones last week.

Emotionally, I’m not so much happy as simply relieved.  I’m relieved that I don’t have to go back in and make myself sick again.  I’m relieved that the bone pain has passed, that the nausea is mostly gone, that my mind is clearer, that my tumors are hopefully smaller.  I’m relieved that I got through it.

Emotionally, I feel quite fragile and anxious.  During chemo I had a purpose and had to push through.  Now I just have to wait and wait on something I don’t really want to do, but need to do.  More on this in the plastic surgery post.

I don’t know yet if chemo helped or not.  There is no MRI test (to meditate with the octopus from the Octopus shoot) for me.  There is no bone scan to see if it has spread, although the doctor assured me cancer doesn’t spread during chemo.  I would have liked to have known this while I was doing chemo.  I now just wait for the four weeks to pass between chemo and surgery where my breasts and lymph nodes will be removed.  Three days later the pathology report will tell us if the cancer was still there, if it shrank or if it disappeared.  It’s incredibly nerve wracking to wait, knowing there is still cancer in your body, wondering if could spread, while you heal enough to withstand the surgery.

Note:   I again feel the same pain in my breast that I had back in June that told me something was wrong.  I had this pain for two weeks before I found the lump and went to my doctor.  It went away during chemo and two weeks after we stopped chemo it’s now back.  I know they say chemo doesn’t hurt.  Mine does and thank goodness.  It is how I found my cancer when a mammogram could not.

11/16/13 Update After this blog post I contacted my oncologist and told her I was worried because the pain in my breast had returned as well as new pain in my armpit and arm.  She ordered an ultrasound.   Good news!  After 4 months of chemo was very positive.  It showed my tumor had shrunk by half.  (The tumor is fast growing and would have doubled without it)  The lymph node that tested positive during the original biopsy did not light up on this ultrasound.  The surgeon said the pain might be from the dead cancer cells being flushed from my system.   She also said we will still remove 3 lymph nodes, and I will need to wear an arm sleeve for one year to hopefully prevent lymphedema.   The pathology after the surgery will tell us exactly how much, if any, of the cancer was still in my left breast and if there was anything in the right breast.  Although, while it does not change my treatment plan it is a tremendous relief to know the chemo worked well.

Week 16. Acupuncture SHOOT

Week 16. The Real Thing:  Acupuncture.  Shot Week 15

Since the beginning of chemotherapy I’ve been receiving weekly acupuncture through IEP (Immune Enhancement Program).  They offer low cost traditional medicine and have a special program for people with cancer.  I’ve also received Shiatsu (acupressure) and met with a naturopathic doctor there.  In all honesty, I have no idea if it helps. Chemo make you sick.  When you feel sick with new side effects all the time, how do you know if something has made you better or not?  I feel sick, I go to acupuncture and feel somewhat better and relaxed during the treatment then I go home and feel sick again.  I like thinking that I’m doing something proactive to help my body.  I like thinking that the herbs and supplements make me stronger and ready to take the next rounds so I can get rid of cancer.  In reality, I don’t know but I keep going.

Acupuncture for cancer

Acupuncture for cancer

 

Week 16. Chemo Recovery SHOOT

The Real Thing – Chemo Recovery.  Shot week 12

Photographer:  Paige Stoyer

These photos show my real world most days during chemotherapy.  The recovery period lasted most of the two-week cycle until the next treatment.  I want to be active, go to work, have my life back.  However, the flood of drugs in my body and brain say otherwise.  I do what I can and what I need to do.  I lay on my couch, tell my cat she’s cute, eat so I can take more pills.  Pills, pills, pills.  Every few hours,  I eat so I can take more pills. Anti-nausea pills, herbal pills, pills for pain, pills to sleep…  I turn all the lights on so my house is bright even when I am not.  I avoid the stacks of paperwork on my kitchen table: bills, applications, copies of blood work and appointments.  I worry about the papers and bills I’m avoiding, but can’t wrap my chemo brain around them. I sit up and turn on my laptop to connect to friends on Facebook or think about the next photo shoot.  On the days when I am not too dizzy or nauseated I go outside, ride my bike around the neighborhood, feel the air on my face.  I think about how the context for exercise, as well as most other things in my life, has changed.  How little accomplishments mean something now.  I try not to measure this time by the same standards I had a few months ago.

Chemo Recovery

Chemo Recovery