Wednesday, December 23, 2009

Physician's Report 12/23/09


Newly diagnosed metastatic breast carcinoma with bone and bone marrow metastases. The diagnosis of metastatic disease was on 10-16-09, when she was admitted to Memorial Hospital with progressive bone pain secondary to compression vertebral fracture. The tumor was estrogen receptor positive, HER-2/neu by FISH. Status post single fraction of 8 Gy of radiotherapy to the lumbar spine on 10/23/09. Treatment was initiated with paclitaxel weekly on 11/12/09, the patient had two right breast biopsies, one consistent with invasive ductal carcinoma and the other one with invasive lobular carcinoma with the largest tumor measuring 1.5 cm.

Lower back discomfort secondary to bone metastases.

Monday, December 14, 2009

Dr. Matei and Necrosis of the Jawbone

I learned early on that Dr. Matei was one tough cookie who could easily stand her ground with me.  Those of you who know me also know how important this is.  We have had several battle of the wills and here is one account of where I lost.

Dr. Carmen Matei had come very highly recommended by close friends of the family.  She was not immediately available so I had seen another doctor who helped orient me to Rocky Mountain Cancer and the fine art of cancer treatment.  It had been recommended that I take Zometa to strengthen my bones as the cancer had created an osteopenia situation.  He had carefully discussed with me the side effects which always has the ability to induce fear if you listen.  I was half listening when I distinctly heard him say Necrosis of the Jawbone which causes your teeth to fall out.  Upon hearing this I elected for the once every three month protocol.  I felt that this improved my chances of keeping my teeth.

Shortly after this I had my initial appointment with Dr. Matei who immediately put the kabosh on my ideas to avoid chemotherapy but that is a story for another day.  In December, I was in my private room with my Dad and Myra Tovey receiving my chemotherapy treatment when the nurse came in to set me up with Zometa.  (At Rocky Mountain Cancer they have a big room with lazy boy chairs for chemotherapy and they have private rooms.  If the private rooms are free and you have someone with you then you can receive your treatment there.  The big room was depressing for me as mainly older people occupy that room chatting with each other as they receive chemo.  They looked at me with such pity.  Upon discovering the private room option I never had chemo in the big room and this was such a relief).

Anyway, I informed the nurse that I was on the once every three month protocol for Zometa and she looked at me confused and stated that there were orders for the bone medicine.  I insisted that I was not having it and she said she would check.  Now if any of us had been looking at a stopwatch I swear that not two minutes would have passed before Dr. Matei came bursting into the room.  When I say bursting I mean bursting and so much so that my hands flew up in front of me in a defensive manner to ward off any impending blows. 

"You are having Zometa today and every month," she spit at me.  I rebelliously informed her that I was not as I had elected to do the once every three month protocol.  I think everyone in the room gasped at my bravado which in hindsight was pure foolhardiness but I didn't know Dr. Matei that well yet.  She then reminded me of my bony disease and her intention of having me walk and how she preferred that I walk in a straight up position instead of hunched over like a feeble old lady.  Now I couldn't argue much with that but I threw out the necrosis of the jawbone defense anyway.  She responded that this was rare and only occurred after two years of continual treatments.

She then snapped that she wanted me to live and I snapped back that I was clearly more concerned about my appearance then she was.  She was not daunted by my insolence and she explained that priority number one was that I would live, number two that I could walk and that number three was my appearance, besides, she added, "You can always get dental implants."  I wasn't getting anywhere so I said, "okay, okay I will do it."  Dr. Matei then curtly nodded at the nurse to hook me up.  The nurse was frozen in horror, as was everyone else in the room, and stumbled a bit as she tried to move into action.  Dr. Matei then turned on her heel and disappeared as quickly as she had appeared.

After the nurse left we all had a good laugh and my Dad said to me, "well I guess she told you."  I guess she did and I had a good laugh at my own expense.  Anyway the moral of the story is to be careful what you say to Carmen Matei.


Sunday, November 29, 2009

The Day Mom Shaved My Head

If you have double clicked on the slide show you will see that I have included captions and so did my mother.  On the picture of me and Santa Baby I indicated that this was the last day I had hair.  Ok for those of you who are technical I have hair but that day was the last day I had the hair cut, the high lights and my hair styled as I desired.

My dear friend Joy Humphrey used to joke about the "hair vanity" that she developed when her hair returned.  I rue the day that I gained the complete understanding of what she meant.  I began chemotherapy in early November and a few short weeks later my hair began coming out.  Joy and her sister Jimmylea went out and bought me a wig that was similar in color and style to my own hair.

When I would lay in bed and think about losing my hair the tears sprang to my eyes and I had that grit your teeth feeling.  In the shower I could feel the hair becoming thinner and thinner and I wrestled with the idea of shaving it.  Huy owns some clippers and had offered to do it but he was approaching things with humor and I didn't think I could handle it.

I was unable to walk and would tire easily at this point and so there was plenty of time to lay in bed and ponder this decision with extreme distaste. For those of you who hate roller coasters and have had the misfortune of being talked onto one it is the moment you brace yourself in the futile attempt to make it stop before the plunge armed only with the knowledge that you are going down the steep descent anyway.  You know it is silly but you still try.

I had read a plethora of books, articles and pamphlets on cancer by this time and was familiar with the two approaches to this dilemma.  One is the hold on as long as you can approach and the other is take control and shave it off approach.  I vacillated for awhile before taking the latter.  The hair was collecting on my pillow and I decided that it still would be the pieces would be shorter and at least it might be easier somehow.

I decided that Mom would be the most emotionally supportive and we got out the clippers before she had to leave for the airport.  I asked her to grab a face cloth so I could bury my face in it and cry.  She thought I was kidding and laughed but I wasn't and to be honest I was hanging on by a very thin thread.

My father is the sweetest man alive and he asked to have his done also and to go first.  If you need a loyal supporter than I recommend you pick him because he will set his shoulder and be with you for the long haul.  I was next and cried in my face cloth trying desperately to picture Demi Moore in GI Jane and cop an attitude.  I failed.  Later I watched the movie and this helped a little.  We didn't shave down to bare skin.  My heart couldn't take that.  In the weeks to come it grew a bit patchy.

I don't know how she felt having to do that to me but it was a huge loss to me.  I cried and felt sorry for myself for the second time on this journey.  Mom told me I was brave but I didn't feel brave.  I felt sad.  I cried it out pretty good and then picked myself up and dusted myself and my new do off.  I was so grateful for the wig that Jimmylea and Joy bought me because it was there when I needed it.  I had already gotten it styled by Jami Anderson at J Gregory and if you are wondering I cried through that also.  Jami was amazing and helped me keep it together.

I never lost all my hair.  I never got used to wearing a wig and soon discarded it when the warmer weather of spring came.  My hair began to make a comeback in March.  I stopped chemo on my birthday April 8 and had a full head of short hair at that time.  It is August 2010 as I write this because I am trying to go back and tell the stories for all of you who really wanted to know.  I have a good head of hair that is growing longer and getting curly in the back.

I don't believe that I will ever look at hair the same way again.  When I see a woman with fabulous long hair I see it as time invested.  My cancer books say it takes a month to grow a 1/4 inch of hair.  That is a long time.  You might have noticed on facebook and this post how few pictures there are showing me with my current hair.  I am growing more comfortable but I like the full hair photos better.  Sigh.  The hair vanity is setting in.

To Jimmylea and saved me from the pain of going to a wig shop and becoming overwhelmed and freaked out.  You saved me a lot of discomfort.  This was a loving act of monumental proportions and I hope that you realize now how it gave me strength to face it because you gave me hair to wear.  It seems so silly a thing to be consumed with if you haven't walked in those shoes.  I hope you don't have to find out how uncomfortable it is.  I wouldn't wish it on anyone.  Thank you, thank you to Jimmy and Joy for helping me through that one.

I would also like to thank my clients who comforted me and told me I looked good.  Some of them even said they didn't notice and thought I was doing my hair different.  I want to thank my Mom who shaved it and withstood the grouchy, complaining Susan that followed that event.  Dad..I want to thank you for going in first and being there with me.


Friday, October 30, 2009

PET/CT SCAN 10-30-2009


Findings: Diffuse inhomogeneities are seen throughout osseous structures on the mapping CT. There are some frankly lytic areas such as the right acetabulum.  Other areas appear sclerotic.  There is an L3 compression fracture deformity.  There is diffuse increased metabolic activity throughout the osseous structures on the PET portion of the examination.  This involves axial and appendicular skeletal structures. CT and PET findings together indicate the presence of diffuse osseous malignancy.

Two metabolically active right breast masses are identified.  There is a 9 X 12 mm of nodule in the upper outer quadrant of the right breast seen on image 89.  Peak SUV measures 2.2.  In the deep right breast just above the nipple line, there is a 14 X 15 mm mass seen on image 99 which shows a peak SUV of 5.0.  no metabolically active axillary nodes are seen.  Metabolic activity in the thorax and neck is physiologic.  No pulmonary nodules are seen in the mapping CT.

A 16 X 16 mm pancreatic node is seen in the abdomen on image 136.  This is associated with elevated metabolic activity.  Peak SUV measures 5.3.  No other metabolically active or enlarged nodes are seen in the abdomen or pelvis.  Increased metabolic activity is seen in the right pelvis that appears to be associated with the right ovary.  There does not appear to be an ovarian mass.  This may be physiologic in etiology.  Metabolic activity throughout the remainder of the abdomen and pelvis is physiologic.

Tuesday, October 20, 2009

Cabbage Leaves and Nursing

After a few days in the hospital I realized that I was going to have to stop nursing. It was taking some time to figure out what was wrong with me but all signs were pointing toward cancer. I had been through one bone marrow biopsy, which was unsuccessful in obtaining a good sample for diagnostic purposes. It was very clear though, that whatever was wrong was affecting my bone marrow as the sample did indicate a problem.

Being in so much pain from the compression fracture in my back I was on pain medications which caused me to be unable to nurse. I had to make a difficult, but inevitable decision. The doctor was talking about a mammogram and PET Scans and all sorts of other tests that require injections of various materials. In the back of my mind I knew that I would be unable to nurse while being treated for cancer and I tried not to think of the second scariest word in the English language...Chemotherapy. The first, of course, being the word Cancer, in my humble opinion.

Giving up nursing was by far the most painful part of this whole affair. It was just shy of the six month marker in Tan (pronounced Thun like thunderbolt) Nguyen's life, which was a good start, but much to soon for me. He already had formula occasionally since I worked and couldn't always keep up with the demand. This made the transition for him fairly easy.

So there I was in the hospital, on pain medications, not nursing and leaking like crazy. The nurses in Memorial Hospital's Oncology unit are fantastic and they really felt for me. One of them went up to the Pediatric Unit to inquire about how to help me. I, of course, wanted a pill or something to dry me up immediately. I had remembered from my pregnancy being told not to take Benedryl or other form on nasal decongestant as they would have a drying affect on my milk supply. I talked to my Doctor and got him to prescribe me Benedryl as a sleep aid in the evenings which helped put me out of my misery by putting me promptly to sleep.

The word from the Pediatric Unit was that there was nothing I could take but there had been some decent anecdotal stories of how helpful cabbage leaves were. The nurse then sent my husband Huy out for head of cabbage and upon return she rolled them using my water bottle as a rolling pin and handed them to me. I can admit to feeling more than just a little silly as I inserted them into my nursing bra but desperate times call for desperate measures.

Now if you are picturing me wearing a hospital gown or "Johnnie" with a bra stuffed with cabbage leaves your picture is inaccurate. I refused to wear a "Johnnie" during my hospital stay. My Mom bought me some cute pink pajamas with black polka dots and my husband brought my other pajamas from home. I couldn't bear to be in the hospital much less wear hospital issue clothing. Also, I confess, they now have snap together "Johnnies" and with my back pain I couldn't sit upright long enough to figure it out.

I must have made quite an impression because when I was hospitalized on April 15, 2010 I ran into some of the same people from my October visit. One nurse's assistant told me I looked familiar and when I mentioned I had been there in October she asked, "are you the one who always wore your own pajamas and had the cutest baby in the world?" I replied, yes that was me.

Anyway, if you are looking to stop nursing for strictly positive reasons and are not looking forward to all that entails remember to buy a head of cabbage and a package of Benedryl. You can thank me when I see you.


Monday, October 19, 2009

October 16th From a Mother's Point of View

October 16 is a day I will also never forget. I knew that something serious was going on because a seemingly healthy 38 year old does not sustain a compression fracture of her lumbar spine spontaneously without significant trauma. When we learned of the fracture (and we were skyping at the time so I watched as Susan got the news from Rachael via telephone) We were dismayed. I spoke to a radiologist the next morning and he offered several possibilities that included breast or other cancer. I felt she was in trouble. She called me days later after the MRI report was in and the decision was made to hospitalize her. It was one of those defining moments, I know the time and place as I was driving to a hair appointment which I promptly cancelled. Driving home, I knew what had to be done. I burst through the door, grabbed my laptop and starting searching for a flight out the next day (thankfully, Saturday). I told Paul we were going to Colorado. His reaction was the same as Susan and Huy's. "Let's just slow down and see what happens in the next day or two." I told him I was going come hell or high water and he could come along or stay home. Within the hour we were packed, the fridge cleaned out, and plans made for an early airport run. At 2pm the next day, we were walking down the airport ramp gazing at Tan Nguyen who was secure in his Baby Bjorn carrier, flopping his arms and legs and smiling at us with a big wide grin. With him in my arms, I could take a small breath again and then when we were with Susan a few minutes later, a bigger breath. We were going to need all the oxygen we could store in the coming days.  It was a dark time of uncertainty, fear, dismay, and the realizition that a nightmare was taking place right in the middle of our lives.  Yet there were bright moments too.  Tan totally charmed the entire nursing staff until he was banned from the hosptial due to the Swine Flu scare.  He was adorable, stretched out beside Susan on her hospital bed, all six months of him, chubby and bald and sound asleep.  His world was not falling apart, in fact it was two times better now with four of us to play with him and give him stroller rides.  We slept those nights in Susan and Huy's bed with Tan snuggled in between us, all soft and sweet smelling.  One night, Paul lifted up a little, looked over the sleeping baby and whispered to me "I wouldn't have missed this for the world."     I knew exactly what he meant.   Deb recently reminded me of Isaiah 41:10  So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Friday, October 16, 2009

October 16, 2009

This is a day that I will never forget.  I was laying on my couch in my therapy office praying that I would recover from this immense pain when my phone rang and Rachel my PA from my family doctor called.  She stated to me that she wanted me to check myself into the hospital and I found myself asking her dumbly, "on purpose"?  She then explained that they wanted to run some tests and this was the best way to get it all done.  I had already seen the results of the MRI which suggested possible explanations for my back issues and listed among them were leukemia and different types of cancer. 

In light of this I thought I should be more cooperative and I said "ok, when"?  I was shocked when she told me today.  She stated that I had a 5pm appointment with a Hematologist.  At this point my head was spinning and I began to stumble over my words.  I told her that I had clients scheduled and she said that I should cancel them.  I then stammered that I needed to talk to my husband first and couldn't get a hold of him but I knew then that I was making excuses and then asked her which hospital.  She asked me which I preferred and I told her I had never been hospitalized before (that I remembered) and she asked me where I had my baby.  I reminded her that I had a home birth.  She then said she would ask the Hematologist and call me back.  I called my mother who immediately stated she was on a plane.  I asked her to slow down and suggested she wait until I met with the Hematologist and then we would go from there.  Mom informed me that a Hematologist meant cancer.  I called my clients and cancelled them.

I then drove home and mulled over what to pack to bring with me.  Huy got the baby ready while I threw some things in an overnight bag.  I don't know how you pack for a hospital stay.  I think I brought a couple pairs of underwear, a pair of socks, my charge cords to my electronics and my medication. It was a pretty empty overnight bag but then Rachel had said I would only be in the hospital a couple of days.

The check in process was a blur and soon I was in a wheelchair with my baby in my lap.  Huy pushed me and the volunteer showed me to my room.  Tears slid down my cheeks as we rolled under the sign announcing oncology.  I was happy to see it was a private room and I exited the wheelchair and slid into the lazy boy in the room.  Huy looked nervous and paced with the baby.  The nurse Beth came into the room and sat down next to me.  She asked me why I was there and when I responded, "I guess I have cancer since I just got admitted into oncology" she looked horrified and told me that this was a terrible way to find out.  I tried not to panic and tried not to scream as she asked me lots of questions.

The rest of that night is a blur.  I can tell you that I met the Hematologist who was a sweet man and that the didn't make me have an IV.  After Huy took the baby home I read the hospital room service menu and quietly thanked God that my mother and father were on there way to Colorado.  I couldn't imagine that it could be true that I had cancer.  I thought my back pain was due to flabby post pregnancy stomach muscles and I just needed to firm up.


Monday, October 12, 2009


INDICATIONS: Compression fracture, eight months postpartum

FINDINGS:  The bone marrow is very heterogeneous on the T2-weighted images with multiple areas of markedly high intensity outlining nearly geographic contours in the vertebral bodies and more punctate areas in the lamina and spinous processes.  On T1, the overall intensity is moderately diminished, still slightly higher than the adjacent psoas muscles.  On T1, there is one particularly low intensity area in the posterior right side of the L2 vertebral body with slight target configuration on T2 on series 3, image 6.  The lesion measures 11 mm in diameter.  There is a second possible focus of similar low signal in the left iliac crest on series 7, image 34 measuring 7 mm in diameter.  After contrast, the marrow enhances heterogeneously with most of the bright areas corresponding to the T2 bright regions.  The areas of low signal do not appear to enhance significantly.  The overall appearance of the bone marrow may reflect a fairly aggressive decalcification and/or recalcification.  However other more common marrow processes must be considered such as malignancy, hemolysis or multiple bone marrow infarcts; close clinical follow up and correlation with DEXA, peripheral smear and reticulocyte count is recommended.  A bone marrow biopsy should be considered, the left iliac crest should provide a representative sample.  The leading alternate possibilities are leukemia, lymphoma, multiple myeloma, breast cancer, recovering red marrow from hemolysis, multiple bone marrow infarcts as seen in SLE, Gaucher's, and many other conditions.  Note that there is no evidence of retroperitoneal adenopathy.

The L3 vertebral body shows a mild chronic compression fracture.  There is a fracture line extending obliquely almost in the axial plane from the superior anterior endplate into the mid posterior vertebral body.  This vertebral body has lost approximately 10% of vertical height.  There is a slight posterior retropulsion slightly indenting the dural sac.  No marrow edema is seen within the vertebral body.  However, there is slight edema in the surrounding paraspinal soft tissues with slight increased enhancement as seen on series 9, image 13.  The paraspinal soft tissue changes suggest a late subacute fracture.

The vertebral body alignment is normal.  The spinal canal is normal size.  The lower thoracic cord and cauda equina appear normal.  No abnormal enhancement is seen within the spinal canal.  The disc heights are preserved with no disc desiccation.  No disc bulges or disc protrusions.  No joint or foraminal changes.  The SI joints appear normal.  The retroperitoneal soft tissues appear normal.

OPINION:  1.  Heterogeneous appearing bone marrow on T2 and post contrast T1 images with much more homogenous moderately decreased T1 signal and two foci of markedly decreased T1 signal aggressive severe osteoporosis probably in the healing phase possible with very heterogenous appearing marrow.  Close clinical follow up is recommended.  Correlation with CBC and peripheral smear plus reticulocyte count is recommended.  I do not have plain films at this time; correlation with the DEXA values is recommended to confirm that this is osteoporosis.  Bone marrow biopsy should be considered if there is no significant radiographic or DEXA confirmation of osteoporosis or if there are signs of a malignant process.  As there is back pain currently in view of an essentially healed L3 compression fracture perhaps this is a sufficient sign to warrant a bone marrow biopsy.

[ Note that the patient has a remote family history of aggressive adenocarcinomas (breast and colon) and breast cancer accelerated by pregnancy is a worry.]

2.  Late subacute to chronic milt L3 vertebral body compression deformity and fracture.  No bone marrow edema is seen currently.

Wednesday, September 9, 2009

Thanking God for a Broken Back

In September 09 I began having terrible back pain and spasms.  I continued working and taking care of my baby although I was unable to get up off the floor at times or walk very well.  I was receiving chiropractic care and finally after about two weeks of suffering my chiropractor Dr. Cyndi Beam in Colorado Springs ordered me to see my doctor (back pain like that does not last more than two weeks she told me).  I believe that she was instrumental in saving my life.

I am so thankful that I did call and make a doctor's appointment because that was what led to my cancer diagnosis and to this journey I am on now as I am seeking my healing.  The Bible says that if you seek you will find, if you ask it will be given and if you knock the door will be open.  Well I proclaim that I am seeking, asking and knocking on lots of doors looking for my healing so that I may be here to raise my child and make a difference in other people's lives.

I will gladly share this journey with you on this blog.  Fighting cancer, parenting a 16 month old, participating in a family and counseling solidiers and families is a full plate but I am willing to portion out some of my time to this endeavor in the hopes that I may inspire or assist someone.  If that someone turns out to be you please contact me and tell me how.

It turns out that I had stage 4 Breast Cancer that had moved into my bone marrow and weakened my spine to the point that I had osteoporosis and had a compression fracture in the L3 vertebrae.  It is rare that a 38 year old woman has a compression fracture so my doctor probed further.  At this time I was enjoying my new baby and nursing.  I had never had a mammogram or any sign that something may be amiss except for fatigue but all new mothers have that dont they?