abc4 News Interview with Kim Fischer

Thank you to abc4 News reporter, Kim Fischer, and cameraman AJ
for sharing the BRCA story!

BRCA2 Interviews

Tune in to abc4 News on Monday, November 18th at 10:00pm

 for a segment on Women's Health and my BRCA2 Journey.  My surgeons, Dr. Reading and Dr. Ferguson accompanied me to the abc4 studio to interview with reporter, Kim Fischer.  I am eager to see the segment to see how it turned out! 

 

Tues, November 19th on the 4:00 News,

Dr. Reading and I will be interview live by Kim Fischer as a follow-up segment.  I hope sharing my story can help someone else...and I am hopeful that anyone who is seeking good surgeons will discover Dr. Reading and Dr. Ferguson.  They are amazing!

 

(If you miss the segments, you can sometimes find them on abc4.com after they air.)

Amazing Surgeons

I feel so blessed to have such wonderful surgeons who helped me with my mastectomy and reconstruction.  Dr. Ferguson and Dr. Reading were great to come on air with me and share information on "Good Things Utah"

What is the BRCA2 gene?

Reviewed August 2007 http://www.ghr.nlm.nih.gov/gene/BRCA2

What is the official name of the BRCA2 gene?

The official name of this gene is “breast cancer 2, early onset.”
BRCA2 is the gene's official symbol. The BRCA2 gene is also known by other names, listed below.
Read more about gene names and symbols on the About page.

What is the normal function of the BRCA2 gene?

The BRCA2 gene belongs to a class of genes known as tumor suppressor genes. Like many other tumor suppressors, the protein produced from the BRCA2 gene helps prevent cells from growing and dividing too rapidly or in an uncontrolled way.
The BRCA2 gene provides instructions for making a protein that is directly involved in the repair of damaged DNA. In the nucleus of many types of normal cells, the BRCA2 protein interacts with several other proteins, including the proteins produced from the RAD51 and PALB2 genes, to mend breaks in DNA. These breaks can be caused by natural and medical radiation or other environmental exposures, and also occur when chromosomes exchange genetic material in preparation for cell division. By helping repair DNA, BRCA2 plays a role in maintaining the stability of a cell's genetic information.
Researchers suspect that the BRCA2 protein may have additional functions within cells. For example, the protein may help regulate cytokinesis, which is the step in cell division when the fluid surrounding the nucleus (the cytoplasm) divides to form two separate cells. Researchers are investigating the protein's other potential activities.

Does the BRCA2 gene share characteristics with other genes?

The BRCA2 gene belongs to a family of genes called FANC (Fanconi anemia, complementation groups).
A gene family is a group of genes that share important characteristics. Classifying individual genes into families helps researchers describe how genes are related to each other. For more information, see What are gene families? in the Handbook.

How are changes in the BRCA2 gene related to health conditions?

breast cancer - increased risk from variations of the BRCA2 gene

Researchers have identified more than 800 mutations in the BRCA2 gene, many of which are associated with an increased risk of breast cancer. Many BRCA2 mutations insert or delete a small number of DNA building blocks (nucleotides) in the gene. Most of these genetic changes disrupt protein production from one copy of the gene in each cell, resulting in an abnormally small, nonfunctional version of the BRCA2 protein. Researchers believe that the defective BRCA2 protein is unable to help repair damaged DNA or fix mutations that occur in other genes. As these defects accumulate, they can allow cells to grow and divide uncontrollably and form a tumor.

other disorders - caused by mutations in the BRCA2 gene

A condition known as Fanconi anemia type D1 (FA-D1) results when two faulty copies of the BRCA2 gene are present in each cell. These mutations reduce the amount of the BRCA2 protein to very low levels. Without enough of this protein, breaks in DNA are not repaired normally and genetic damage can accumulate. As a result, people with Fanconi anemia are prone to several types of cancer, including cancers of blood-forming tissue (leukemias). They are also at an increased risk of developing solid tumors, particularly of the head, neck, skin, and reproductive organs. Additionally, people with Fanconi anemia experience bone marrow suppression, which causes an abnormal reduction in the number of red blood cells, white blood cells, and blood platelets made by the bone marrow. The reduced production of red blood cells causes the anemia characteristic of this disorder.

other cancers - increased risk from variations of the BRCA2 gene

In addition to female breast cancer, mutations in one copy of the BRCA2 gene can lead to an increased risk of ovarian cancer, prostate cancer, pancreatic cancer, fallopian tube cancer, male breast cancer, and an aggressive form of skin cancer called melanoma. Mutations in the central part of the gene have been associated with a higher risk of ovarian cancer and a lower risk of prostate cancer than mutations in other parts of the gene.

Genetics Home Reference provides information about Fanconi anemia, which is also associated with changes in the BRCA2 gene.

Where is the BRCA2 gene located?

Cytogenetic Location: 13q12.3
Molecular Location on chromosome 13: base pairs 32,889,616 to 32,973,808

The BRCA2 gene is located on the long (q) arm of chromosome 13 at position 12.3.
More precisely, the BRCA2 gene is located from base pair 32,889,616 to base pair 32,973,808 on chromosome 13.

Here is a diagram I found:



Figure 2. The roles of BRCA1 and BRCA2 in DNA repair. (a) This model suggests that a macromolecular complex consisting of BRCA1, BRCA2, BARD1 and Rad51 functions to repair damaged DNA. Complex formation is preceded by phosphorylation of BRCA1 by the kinase ATM. In response to DNA damage, the complex relocates to chromosomal regions undergoing DNA replication marked by proliferating cell nuclear antigen (PCNA). (b) Loss of BRCA1 and/or BRCA2 function (indicated by dotted outlines) leads to inability to repair damaged DNA. When damage occurs to critical checkpoint genes, such as p53 (dotted outline), checkpoints such as p21 cannot be activated and cells proliferate. Modified figure reproduced, with permission from Elsevier Science, from Ref. 11 [Welcsh, P.L, Owens, K.N. and King, M.C. (2000) Insights into the functions of BRCA1 and BRCA2. Trends in Genetics 16, 69-74, PubMed] (fig002mgb).

Just Checking...

I made an appointment with the Huntsman Cancer Institute at IMC to speak with Dr. Nibley with the Utah Cancer Specialist Group.  I just wanted to see what else I might be able to do to reduce my risk of any cancers.  Should I have a yearly body scan to detect any cancers that might show up in my brain or lungs (like my mother had this last time)?  What are the symptoms of a brain tumor anyway?  I wanted to double check that indeed I didn't need any breast imaging, since I have an implant in there now.  What did they think about me taking an estrogen supplement? 

William E. Nibley, M.D.

Dr. Nibley earned his medical degree in 1991 from the George Washington University School of Medicine. He completed an internship and residency in Internal Medicine followed by a fellowship in Hematology/Oncology at the University of Utah School of Medicine. He is a member of the clinical faculty in the Division of Hematology/Oncology at the University of Utah. Dr. Nibley is board certified in Internal Medicine and Medical Oncology and board eligible in Hematology.
I went back and this practice has a mid-level provider speak with you first to find out your history and ask basic questions so they can brief the physician before meeting with you.  Anne Marceau, NP, came in to meet with me.  She was so nice and listened to my concerns. 

Anne Marceau, NP

Ms. Marceau, NP, earned a bachelor's degree in Nursing in 1988 from Fairfield University in Connecticut. She earned a master's degree in Nursing and a Nurse Practitioner Certification from Massachusetts General Hospital Institute for Health Professionals in 1997. Most of her nursing career has been in Oncology and Bone Marrow Transplant. She worked with the Utah Blood and Marrow Transplant Program at University of Utah Health Sciences Center, Primary Children's Medical Center and LDS Hospital. She is board certified as an Adult Nurse Practitioner.
After we spoke, she briefed Dr. Nibley and he came in.

Basically, they both said:
-I do not need any breast imaging since I have no breast tissue.  I should still do a self-breast exam each month.  This will most likely be the way that a tumor would be detected if one grows in the breast tissue that remains.

-They didn't think it would be beneficial to have a body scan or chest scan for lung cancer or brain scan for brain cancer.  They said that if I had the scan one day, then a brain tumor could form right after that.   Once they form they are quickly detected within 2 weeks because it's obvious that something is wrong.  Symptoms possibly include a headache that comes and goes, stroke-like symptoms, nausea and vomiting, disturbed visual patterns and seizures.  Anne said you might do abnormal acts like put your cell phone in the toaster.  And the treatment is the same for most brain tumors... you need surgery.  As for lung cancer, outside of smoking a leading cause is from radon gas.  He suggested that I have my home tested for radon just because it's a good idea to do so and it would reduce that risk factor.

-Dr. Nibley asked me how my body is reacting to not producing estrogen from my ovaries that were removed.  I said that I didn't notice BIG disruptions in my life.  I do get warm and toasty at times, and sometimes I feel a heaviness when I am stressed.  I guess I'd have to ask Dan if my behavior is altered and if I am more impatient.  Dr. Nibley suggested that estrogen does feed cancers, and the benefit of a low-dose estrogen would be for heart health, but perhaps on the conservative side, I should not take an estrogen supplement. I can monitor my heart health through other means.  Estrogen also helps with Bone Density.  When women go through menopause their bone density starts to decline.  So, since I am getting about a 10 year jump start on my bone density decline, I should be certain to take Calcium and Vit D supplements.  Anne mentioned that most pills don't have enough Calcium in just one pill, so I should be aware that I need 1500mg of Vitamin C each day and 800 units of Vit D (which helps in the calcium's absorption in the body).  That was good to note, since I was only taking one pill each day and I actually need to take 3 of the pill that I am currently taking.  (I should research to see what other calcium options are available.)  He also said that I need to do weight bearing exercise 3 times a week to keep my bones strong and healthy.

-Dr. Nibley handed me a print-out of the NCCN Guidelines for  Hereditary Breast and/or Ovarian Cancer Syndrome Version 4.2013.  He told me that he understands that I am a little "anxious" about reducing my risk of breast cancer, especially since I recently underwent the preventative surgeries and my mother passed recently.  He said that according to the guidelines, I really have done everything that I can.  I now have a risk that is that of the normal population or less even.  ( I did just notice a footnote that says "Shared genetic susceptibility to breast cancer, brain tumors, and Fanconi anemia.  Quickly checking into that a bit more.  "...data suggest that FA patients with biallelic mutations in BRCA2 are at markedly high risk of acute leukemia during the first 5 years of life. Presence of biallelic BRCA2 mutations clearly mandates more intensive surveillance of the marrow and possibly “prophylactic” hematopoietic stem cell (HSC) transplantation prior to the development of myelodysplasia and AML. Further, FA patients who are compound heterozygotes for BRCA2 mutations are at high risk of solid tumors.^17,18 Of the 14 patients with biallelic BRCA2 mutations in the IFAR database, 5 died of early onset brain tumors, primarily medulloblastomas,¹⁷ and 3 developed Wilms tumors." http://bloodjournal.hematologylibrary.org/content/103/8/3226.full.html )

-The NCCN Guidelines state that I have a possibly higher risk for pancreatic cancer, but there isn't screening for that, and a higher risk for melanoma.  He suggested that I get a yearly check-up from a dermatologist.

Other than that, Dr. Nibley said that I really have done all the preventative measures that I need to.  He was a very nice doctor and listened and explained everything well.  I appreciate Anne and Dr. Nibley's time and care.

I wish a yearly screening could tell me that I'll be okay...

What things can I do that we talked about?
-Regular self-breast exams to detect breast cancer
-Weight bearing exercise 3 times or more a week for bone health
-Take 1500 mg Vit C and 800units Vit D daily
-Test home for radon gas

Life Insurance isn't covered by GINA

Sooooo.... if I had thought about this little kink in the road, I would have looked into a new life insurance policy BEFORE I started taking any steps in finding out about my BRCA2 mutation and BEFORE I made any doctor visits about reducing my risk through surgeries.

Because I didn't, now I really AM being discriminated against by life insurance companies...
and there is NO LAW TO PROTECT ME AGAINST THIS!

I vented my frustrations on the  www.facingourrisk.org (FORCE) message boards and I received a few replies that GINA only applies to Health Insurance.

This is pretty frustrating.  Even though I went through these surgeries to reduce my risk to be the same or better than the general population, I am only able to get 3rd tier coverage as a "healthy individual who is a non-smoker" and cannot qualify for the BEST rate available.

This is a bummer!

Learn from my mistake.


Q. Does GINA protect me when I buy life insurance or long-term care insurance?
A. GINA health insurance protections currently do not apply to the life insurance market or the long-term care insurance market. If you buy these types of coverage on your own, federal law does not protect you. However, some state laws may apply to these types of coverage. Check with your state insurance department for more information.
(http://www.dnapolicy.org/gina/faqs.html#insurance15)

Life Insurance Rate Quote is WAY HIGH because of my BRCA2!

I currently have a life insurance policy with USAA.  First of all, let me say that they are a great company and I have really appreciated their customer service and insurance services.  My insurance policy I have had these past years with USAA is at a BEST RATE premium...meaning that I was the absolute most healthy that I could've been and I got the BEST RATE available.

Recently, I went through the process of applying for an insurance plan that would increase the amount of coverage and also increase the term-life of the policy.  I went through the process just after having my breast MRI to make sure there was no cancer before my mastectomy.  Because of this MRI and consulting with a physician about my options, a RED FLAG was raised regarding my health.  USAA underwriting requested my health records from 2011 to present and saw that I most recently had a mastectomy because of my BRCA2 cancer risk.

 I received a follow-up call from Kelly, an underwriter today.  She told me that she saw that I was BRCA2 positive and saw in my records that I consulted with a physician about my risk since my mother had breast cancer.  Kelly asked how old my mother was when she had her breast cancer.  I replied that my mother was 37 years old.  Then the underwriter told me that she would need to forward this information on to the medical director to make a decision.

Right away I was a little concerned.  On my application it just asked if I had a family member who died before the age of 60.  The answer to that is "No".  I answered every question on that application truthfully. 

The only reason there was any question, was because of a procedure that I chose to do to PREVENTATIVELY REDUCE MY RISK.  Now they determine that I have the BRCA2 gene...WHICH WAS NOT ASKED FOR ON MY APPLICATION... and they are forwarding on my case to the medical director.

They know that I have done surgeries that have reduced my risk to that of the normal population or better.

And then the phone call...
A sales gal explained to me that they would like to offer me coverage under the 3rd tier rate.  Instead of a $300,000 30-year plan at $32.89/month, I am offered a premium of $55.89/month!

She proceeds to explain that I have been offered the "Good Health Non-Smoker" rate that is the rate given to healthy individuals...with no "dings" charged against me (like for example, $5 per $1000 of coverage)...but there are no "discounts" given either because of my BRCA2 gene mutation.

She specifically told me that it is because of my BRCA2 mutation that I am not being given the best rate.  I ask to speak to the medical director and am handed over to the underwriter.  Kelly was very nice and she explained that she saw the BRCA2 mutation  in my records and wanted to give me the BEST rate, but needed to send it to the medical director to assess my risk.  She said she passed on the information that I had undergone preventative surgeries to reduce my risk, but wanted to see what could be done. 

I again received the confirmation from her that it is indeed because of my BRCA2 mutation that I did not receive the BEST rate.  "Well, and because of your family history too..." 

I asked her to please review the application where it asked for information regarding my mother's age of first having breast cancer or anything of that sort.  It's nowhere on the application.  They asked me about that after finding out I am BRCA2 positive.  I explained to her again that the only question is if my parent died BEFORE the age of 60years.  My mother did not die before the age of 60 years.

The only thing that led USAA to my medical records was the breast MRI "red flag" that has to do with my BRCA2 mutation.

I specifically asked her, "So, if it were not for the BRCA2 mutation, I would have gotten the BEST RATE?"  She replied, "Yes,  Because you have the BRCA2 mutation, you have an increased risk of getting breast cancer."

First of all, these two girls keep telling me what my risk is.  I KNOW MY RISK.  They think that they need to explain this to me so I understand why I am not getting the best rate.

BUT THE FACT that they are using my BRCA2 genetic mutation at ALL as a reason to not give me the best rate is what is alarming.

Yes, I have a genetic mutation that increases my risk of breast cancer.  According to the GINA ACT, employers and insurance companies cannot discriminate against me:

"Title I makes it illegal for health insurance providers to use or require genetic information to make decisions about a person’s insurance eligibility or coverage."

I even went forward and did preventative surgeries to reduce my risk to the average population or better than that!  Even if I didn't get those surgeries,  insurance companies cannot USE genetic information to make decisions about my insurance coverage...according to the GINA Act 2009.

I understand that they may think my risk is higher for cancer and they don't want to cover that risk at the Best rate premium...

BUT
#1) Nowhere on the application did it ask about my BRCA2 gene.  Why now, because they saw it in my medical records are they using that information to discriminate against me?
#2) Nowhere did it ask if I had a family member who had breast cancer ( and perhaps even if it did, I was told by the sales gal and by Kelly, that other than my BRCA2, I would have received the BEST RATE) to influence my rate.

Now that they have my full medical record from 2011 - 2013, they can suddenly discriminate against me?

I shared the GINA act with Kelly.  She still told me again about how my BRCA2 mutation increased my risk for breast cancer.  I explained again about the GINA act and how this information cannot be used against me.  I reminded her that my operations have REDUCED MY RISK to less than that of the general population, so I should even moreso not be penalized.  Even if I hadn't had the surgeries, GINA states that insurance companies cannot use my BRCA2 against me to make decisions about a person's insurance...coverage.

She said she will speak with the medical director again and get back with me.

I think that USAA needs to think on this one long and hard before they come back to me with a rate that is less than the BEST RATE!

We shall see how this goes...and if I need to take further action.

What is genetic discrimination?

Genetic discrimination occurs when people are treated differently by their employer or insurance company because they have a gene mutation that causes or increases the risk of an inherited disorder. Fear of discrimination is a common concern among people considering genetic testing.

Several laws at the federal and state levels help protect people against genetic discrimination. In particular, a federal law called the Genetic Information Nondiscrimination Act (GINA) is designed to protect people from this form of discrimination.

GINA has two parts: Title I, which prohibits genetic discrimination in health insurance, and Title II, which prohibits genetic discrimination in employment. Title I makes it illegal for health insurance providers to use or require genetic information to make decisions about a person’s insurance eligibility or coverage. This part of the law went into effect on May 21, 2009. Title II makes it illegal for employers to use a person’s genetic information when making decisions about hiring, promotion, and several other terms of employment. This part of the law went into effect on November 21, 2009.

GINA and other laws do not protect people from genetic discrimination in every circumstance. For example, GINA does not apply when an employer has fewer than 15 employees. It does not cover people in the U.S. military or those receiving health benefits through the Veterans Health Administration or Indian Health Service. GINA also does not protect against genetic discrimination in forms of insurance other than health insurance, such as life, disability, or long-term care insurance.

For more information about genetic discrimination and GINA:

The National Human Genome Research Institute provides a detailed discussion of genetic discrimination and current laws that address this issue:

(http://ghr.nlm.nih.gov/handbook/testing/discrimination)

Bras

Such a dilemma... To wear or not to wear.  

I have always worn a bra...until my mastectomy surgery in January. 

Try wearing a bra when you have folds of skin and an expander under there just after surgery...so that there is NO WAY to fill a bra no matter the cup size!  The only bra I was wearing was the compression bra those first days.  After that, I didn't want to "SMOOSH" my expanders and skin tissue down, so I opted to go braless for most of the time over the weeks and months of saline fills to expand my expanders. 

Also, the expanders end up being pretty "rock" hard and slipping a normal bra onto my breasts was ill-fitting and painful.  I can no longer wear underwire bras because of the possible rubbing of the underwire on my breast skin.  That's all I have there...skin and implant.  So, it may rub away my skin to leave a hole since I have no fatty tissue under my skin. 

I purchased two bras that didn't have an underwire.  The nipple part was left like a tent top that had nothing underneath it, since my breast doesn't move or conform with normal bras.  Normally, your breast lays into the bra and conforms and fills the bra cup.  My breasts have their own shape and they are still pretty rigid actually, even with the implant.  A darling blog friend, Marge, from the BoobTube.com, told me that after 18 months, she is finally feeling a softening of her breast... so maybe it will come for me too.

For now, I found a generic Walmart Brand bra that is like a thin sports bra.  Inside breast portion are removable, soft cups.  Since it's more like a sports bra, it conforms to my rigid breast shape.  (When I say rigid, I mean that I wouldn't be able to push my breasts together so that they touch...they don't really move.  BUT, they are much squishier than the expanders.  AND I certainly happy with the appearance and the wonderful job that my plastic surgeon, Dr. Ferguson did.  I think it's just par for the course.  Reconstructed breasts have their own quirky characteristics.  I want to make sure that I cover as much detail as I can for my own girls or anyone else who is wondering about what their breasts could possibly be like after mastectomy and reconstruction.)

I like that generic Walmart Brand bra that the cute older, (well-endowed) Walmart apparel lady directed me to.  She uses the Genie Bra with triangular inserts, but showed me the cheaper, generic version, with round cup inserts.  She suggested that the triangular inserts sometimes flip and she would prefer round cup inserts, avoiding the flip problem.

Loading zoom..

(www.walmart.com)


So, I wear the "sports-like" stretchy bra when I am heading out into public...sometimes I forget to put it on... but it's not my favorite thing to wear a sports bra around...unless I'm being sporty.

Really, I think in the back of my mind I have been avoiding putting on a bra, because every time I put on my bra, I have to think about my boobs.  It has been one little way of not having to think about them ONE MORE TIME!  Since 8th grade, sitting on the floor with my siblings as Mom and Dad sat on the couch in front of us explaining that Mom had breast cancer...since just after my 2nd baby was born and my mom tested positive for BRCA2 and then going through the process with a genetic counselor to discover that I was a carrier...since having the idea of surgery looming in my mind until recently having the surgeries...MY BREASTS HAVE ALWAYS BEEN ON MY MIND! 

So, in a silly little way,  by not putting on a bra today, I say to my breasts, "Hey ladies,  I am going to give my mind  a little break today and not actively do anything with you today."  That's silly and of course, they are always on my mind... but if I think about my aversion to the bra lately, I think this is why.

After my most recent surgery, my darling sister sent me a gift card to Victoria's Secret.  I think that's exactly what I need... to find a pretty bra to help me feel that my breasts are pretty.  Of course, the shape and look is very nice and I am so grateful for Dr. Ferguson's expertise, but that little scar...
It doesn't really bother me too much... and as time goes...less and less.

I have been SO INCREDIBLY BLESSED to know about this gene and to have a caring husband who has supported this effort emotionally and financially.  I am in a blessed situation and I know this.  I just want to share all of my thoughts and experiences.  I am most grateful and so happy with how everything resulted.  I am most grateful!

Fear

I am so grateful to my mother who encouraged me to go forward with my mastectomy and reconstruction despite all that was going on towards the end of her life.  I had her strength with me while she was alive through the beginning of this process and I carry her spirit of courage with me through the final stages of my surgeries and recovery and forever.  I am grateful that she was able to be here with me in the beginning of the process so that she could see that her daughter(s) and granddaughters will have a really good chance at preventing these cancers that took so much of her time and life.
 
I thought that with the preventative surgeries that I had, that I would feel such absolute relief...and I do feel that I have done all that I can to hopefully not have to go through the cancer process...
BUT there is always the fear that I will be going through this same cycle that my mother and her side of the family has gone through.  On the practical side, I feel like I have a chance.  Reducing my risk from 87% of getting breast cancer over and over to 5% is really encouraging.  On the other hand...that 5% lingers above me, around me and in the back of my head.
 
I think that I would have felt a lot calmer about my risk reduction if my mother was still alive.  When she died this spring, I felt so vulnerable.  Mom had been through cancer three times before and lived through it, despite some really difficult things to endure (like chemo, radiation, ports and large scars across her entire chest).  But Mom was alive and was showing me that "Breast Cancer doesn't have to take you away". 
 
This fourth and last time... it was cancer... EVERYWHERE.  I didn't even realize that it's not necessarily the cancer that kills you.  The drugs she was taking reduced her appetite to nothing.  Even when she was hungry, she often didn't eat because she couldn't bear to thow-up...again.  She felt nauseous all of the time.  So ultimately, the last months of her life, Mom fought feelings of hunger and nauseousness and chose not to eat food because it was so uncomfortable for her when she did eat.  She starved away to nothing.  Every day she would insist on getting out of bed by herself and walking to the bathroom as a measuer and self-test of her strength.  Eventually she would fall, but still she would try as she battled the fact that she was getting weaker.  Mom stayed in her bed for most of the time during her decline.   She would try to go downstairs to sit on the recliner, but eventually that was too difficult.  Even moving hurt her body.  As her body lay under her bedsheets, her frame became more and more thin until I couldn't even believe it... just bones and skin.  My father is an incredible man.  He took care of my mother so well in the last months and days of her life.  The home-nurse even told me that she's never seen any husband continue to care for his wife like my Dad did.  She was impressed with how he "preserved her dignity". 
 
Now that my Mother has passed, I catch myself feeling the fear of death like I never have before in my life.  Of course, since my Mom's first breast cancer when I was in 8th grade, I have felt that fear in my heart... but now it's even more.  I worry about my children.  I worry about my husband.  I play scenarios in my mind..."What if"...."What would I do or how can I make sure I have everything in place and prepared for my husband and children to make it easier if I die?"..."How would I be able to emotionally take care of my other children and our life if one of my babies died?"..."How could I handle the sadness if my husband dies?"
 
It's not all consuming and it doesn't prevent me from living life and it's not in the forefront of my thoughts every minute... but I feel the pressure of it "in the back of my head" just above my neck radiating forward and I feel my chest tighten from a million strings pulling tightly.  Right now it is with me.  I think it will always be.  My Mother is not here to show me physically that everything will be alright and that I will be able to live to raise my babies until they have babies.  That is really what I want.  To enjoy life with my husband...to enjoy our children and grandchildren together.
 
Maybe that is the gift that I will have.
 
Love you, Mom.

2 Months Post Surgery: Expanders Out and Implants In

I really feel so great!  I have no problem with my range of motion in my arms.  I am able to lift and carry my babies.  I certainly try to avoid lifting anything that is really heavy.  I am still a little cautious about that.

My breasts are looking great and are "settling in" a bit.  My incisions are pink and still visible, but not bad.  I remember going into this that I was most concerned about having these incision scars and I absolutely didn't want them!  I had looked into the "keyhole mastectomy" where the incision is smaller so I wouldn't have the long scars that I'd see in the pictures on the internet as I was researching this whole process.  Really, those incision scars made me sad to look at and think that I would have those too... but honestly now I don't even really "see" them when I look in the mirror and I don't "think" about them.  Would I prefer overall that they weren't there?  Yes.  But I am really pretty okay with them.  The funniest, weirdest thing about my breasts is due to the fact that my implant is tucked up under my pectoralis muscle.  Normally I cannot tell or see my muscle through my skin, until I flex my muscle and I can see that "flex" under my skin.  I do not like that look at all, so I try not to do it when I am looking at them in the mirror or just looking at them.  When a woman gets augmentation under non-reconstructive, normal circumstances, she has a lot of fat padding over her pectoralis muscle so she doesn't see that "flex" as much or at all.

I have the best friends and family who have helped me through this time.  My wonderful friends came over during my first week home.  They...helped me change the sheets on all of the beds, swept and steamed my kitchen and bathroom floors, brought in fresh flowers from their garden, vacuumed my carpets, knocked down cobwebs from my deck and front porch soffits, whisked my girls away for a fun dinner out on the town, cleaned my windows and brought me meals and special treats.  I am so blessed to have such wonderful people who love me.

6 day check-up...2 weeks later

It took me a little longer than 6 days, but I went in to speak with Dr. Ferguson for my follow-up appointment.  He took a look and said that everything looked really good.  I was grateful that I didn't have any complications and no infection.  It was really a pretty quick visit.  Again, I couldn't drive for 2 weeks or move my arms at the shoulder, so I looked like I was doing the "robot" dance during that time.  After 2 weeks, I was able to work on my range of motion.  Again, I wasn't supposed to carry more than 20 pounds for many weeks.

Thank goodness for my in-laws who took James for that first week so I could rest and not need to carry him around.  I think I wasn't supposed to carry him for 6 weeks, but at least 1 week helped so much.  I was able to "work around it", by picking him up for some things like putting him into his crib, but making sure not to carry him around the house.

My recovery has been much easier than the recovery after the initial double mastectomy.  I don't think I took Percocet much after 3 days and I don't think that I absolutely needed it that long and may have been able to just take Ibuprofen.  In fact, after the surgery, my husband filled my prescription at Costco and I stayed in the car...until he came out and had forgotten to use the Rx insurance card.  $16? no thanks... so I headed back in there to get the amount refunded.  I actually felt good enough to do that!...I don't think I would've tried that after the mastectomy.

Again, after wearing the compression bra for 3 straight days, I was hesitant to see what my newly reconstructed breasts looked like.  It was a nice relief to see that they looked very nice, even though they had been squished with imprint lines and there were purple marking lines all over them.

My incision scars looked pretty good.  Dr. Ferguson always puts this glue sealant over my incisions after he sews up the hole where he took out the expanders and put in the implants.  That glue helps prevent infection, but keeps the dried up  blood from sloughing off so my incisions always look much worse than they are.  I usually keep that glue stuff on for a week (when it kind of cracks and starts to come off a bit by itself) because I want my incision to be left alone for a while since it really tugs at them when I peel off the glue, but Dr. Ferguson warns not to leave it on too long because that could actually perpetuate infection.  So when I finally pull off the glue and the dried blood falls off too, my incision scars look pretty good!  With time I am told they will fade.  I had heard from many people that I would need to massage the scars, but both Dr. Ferguson and Travis, PA tell me that it's not a good idea.   They say that the constant stretching that my skin is doing with the implant in is enough to "massage" the area (Travis told me about a study that showed this stretch was just as beneficial as massage) and that massage is actually detrimental to my situation since my skin is so thin over the breast implant, I will be causing more trauma and scar tissue build up if I am constantly massaging the incision scars.

My breasts seemed a teeny little bit high up on my chest, but slowly are filling into place.  There are one or two teeny things that I see...like a small pucker here or a teeny fold there...that I only notice when I'm staring to really observe the shape and form of my breasts...but I think that Dr. Ferguson did a fantastic job and I'm so grateful to him and Dr. Reading, and to Dr. Soisson for performing my hysterectomy/oophorectomy and for his expertise in the BRCAgene.  I feel really blessed to be led to excellent surgeons!  Not only are they all talented with their surgeries, but they are really great people!

MICHE Bag...What an amazing company!

Last week when I went in for my surgery to swap out my expanders for the implants, I carried my new Miche Hope Bag. 
 
In it was my make-up bag (didn't need it since I was out the same day:), a change of clothes, my express registration pass, and my wallet... everything I needed for the big event.  I LOVED carrying this bag into the surgery waiting room because of what the bag means to me.  It reminds me of my mother...and it reminded me of the love that complete strangers have for me and their compassion for others who are facing tough times in their lives. 

Let me tell you why...


Miche Bags decided to bring a bunch of Hope Bags to hand out to the patients up at Huntsman Cancer Institute.  What a company!  During my mother's fourth and final battle with cancer, she received a Miche bag since she was a patient up at Huntsman Cancer Institute.

After my mother passed away, my Dad asked us girls to look at some of Mom's things to have.  My little sister received the Miche Bag.  At first she didn't even know that the bag had an inner liner and an outer shell.  A girl at church showed her how the shell is easily removed so that you can change out your shell for a new one.  This way you can keep all your stuff inside the inner bag and change the exterior when you want a new look!

The Hope Cancer Bag reads, "I feel very blessed to be alive", "Enjoy the Sunshine", "It's not about living or dying, it's about living until I die", "I live in strength and confidence",  "This is about fighting the fight, but with spirit!", "Fight like a GIANT with the best of attitudes"...

After a little while, when I saw my sister with the bag, I would read the words on the purse and think about how those words reminded me of Mom...of how those words inspired me in the "fight" that I am facing...and how Mom helped me to go forward, facing my BRCA2 gene and not hiding from it.

I thought it would be a really nice way for all of us girls to remember Mom, so I called up the Huntsman Cancer Institute gift shop, hoping to be able to purchase a bag for my other sister and myself. They informed me that they don't carry them at the gift shop, but that the Miche Bag company came up to the Huntsman Institute and handed them out to patients.  Wow!  I thought!  With no leads, I searched quickly online for a way to purchase the bags before I went into the elementary school to help out in my daughters' classrooms.  I found www.MicheBags.com and wrote the customer service a quick note asking where I could find the Miche bags to purchase.

 "Hello,
My mother recently received a lovely Miche Hope bag (black with words all over it and a pink breast cancer pin) at the Huntsman Cancer Institute. She recently passed and my sister received the bag. There are other sisters who would like this bag too.  It would be a nice momento to remember Mom when we carry it around. Can you please tell me where I can find that bag?...the name of the bag and the cost. Thank you, Lisa"

After I finished volunteering at the school, I sat in my driver's seat and sat reading the customer service reply from Mike...stunned and overwhelmed with his reply:

"Thank you for contacting Miche.

 Before we say anything else we would like to offer our condolences on your loss. I'm 26 years old and I'm lucky that I haven't had anyone too near to me pass away and can't imagine the pain that goes with that loss. I've brought your email to our CEO Corbin Church and he would like to offer these items as our gift to you. If you carry Miche we would be able to provide the shells, we have them in our Classic and Prima sizes, if you do not carry Miche already we would be happy to provide the base bag to carry this shell with you as well. This is a wonderful way to remember your mother and we are happy to help with this. We would be happy to mail them or you would be welcome to come and pick them up from us if it's not too much of a trip. Just let us know what you would need and the sizes and we would be able to get these provided to you. Corbin wished to emphasize that there will be no charge for these items as they are our gift to you and your family, if you would like to pay anything we would ask you to instead make a donation to the Huntsman Cancer Institute to assist in their efforts to combat this terrible disease.

I was lucky enough to get to go a couple of times this last winter with a group of our team members here at Miche up to the Huntsman Cancer Institute to hand out these items and I can say without any hesitance that is was one of the most wonderful and rewarding experiences I've had in my life. To see people valiantly fighting this disease with everything they have and to give out our bags to them, this small gift, and seeing their warm smiles in the face of their battle was a very special experience and one that I'll always cherish.

 Please let us know what you'll need and we'll be happy to assist in the way that we can.

Thank you,

MIKE GARCIA
 Field Services Specialist
 Miche®"

I sat there in the parking lot and cried.  Tears... this compassionate person who reached out to me and helped me feel like he really cared about my Mother and about me. In this moment, I felt such strength and understanding.  Gratitude...for Mike's insight, to take a moment...and just care about me. I wondered if I would have had such compassion as he did for me.

In another email,

"Thank you for sharing your story with me and we’re more than happy to help to honor the memory of your mother. I feel that even though this is my job and I’m here professionally, it’s important sometimes to remember that there is another person on the other side of this email reading it, sometimes we just need to take a break from our professional faces and speak as people. Our offices are at 10808 Riverfront Pkwy Suite 150, it’s just off the 106^th exit on the I-15. Just let us know when you’d like to come down to pick them up and I’ll speak with our receptionist and stock room person to have them all pulled out and ready for you. We have more than enough in the prima and the classic so whichever you would like we’ll be able to provide them for you, just let us know."

Can you believe this guy?

So when I went to pick up the Miche Hope Bags for myself and my sister...Mike was waiting for me at the front desk with two BEAUTIFULLY wrapped gift bags with two sizes of purses in each bag and another pink Hope shell!  The classic Hope bag even had these amazing stones, "charmers", hanging from the handles.  I was blown away!  I gave Mike a huge hug and we talked for a little while.  He was so nice and so great!  When I commented on how unexpected these amazing gift bags were, he explained, "Well, it's in honor of your Mother and we wanted to honor her appropriately."

I am still stunned at Mike and Corbin and Miche Bag's generosity!  Of course, I made a donation to the Huntsman Cancer Institute...I still feel so overwhelmed by their compassion.

I LOVE carrying my Miche Hope Bag.  I know it may seem silly because it's a material thing, but I feel strength and I feel love and I feel hope as I carry that bag...because of the words of encouragment all over the bag...because I think of my Mom when I carry it...and because I know that there are amazingly, amazing people like Mike, who care for others that they don't even know.

Swapped

May 31st, Dan came in with me to Dr. Ferguson's office to determine what shape and size of implants I was going to get in exchange for taking out my expanders.  He measured me and identified a few implants that would fit in the pocket that the expanders had formed.  It was a tough decision between the Natrelle and Sientra when I was holding both in my hands.  I liked how the Natrelle kept their shape since they were so stiff.  The Sientra were more maleable.  It was hard to decide just by holding the implants, but once we looked at what sizes and shapes were actually available to fit into my 390cc expander-filled cavity, we settled upon the Sientra 425 cc tear shaped.  The size was slim and not too oval so as to spill over into my underarm area.  Dr. Ferguson was thinking a little smaller, but I pushed a little.  He said he felt comfortable trying the 425s and would have the smaller implants on hand just in case.

When I tell inquirers what size, they often think that 425 is a lot, because normally if someone kept their breast tissue, it would be a good amount.   Since I only have a thin layer of skin with no tissue, 425 ccs is actually not that large.  It's about the size of when I was breast feeding my littles.  (Sometimes I look at mothers who are still breastfeeding and get that little nudge of sadness that I will not be having any more littles.  My baby is almost 2 years old now!  I am so grateful for the four beautiful children that Dan and I are blessed to care for.)

June 20, 2013, I went into surgery at Intermountain Medical Center with Dr. Ferguson and Travis, his PA.  The nurses and anesthesiologist were so nice.  I was originally told to come in at 3:15pm, but then they called to ask me to come in at 2:00.  We were vacuuming and cleaning the car, when my oldest daughter went into the house for a drink and popped out to tell us the hospital had called.  We finished up the cleaning, loaded up the van with bags for the kids to stay with Nana and Papa and headed out.  We didn't make it at exactly 2:00, but arrived shortly after.  When we sat down with the pager to check in, the magazine on the table beside me was a Time magazine with Angelina Jolie on the cover.
                                          
I read a little about her experience before I was paged to check in.  We went back where I dressed into my hospital gown, puffy shorts, socks and hair net. 

Dr. Ferguson came in to speak with us and give me instructions for post-op care.  I was to keep the compression bra on for 3 days.  Then I could take it off and shower for 10 minutes only so as not to soak the area too much.  I am supposed to wear the compression bra for a while longer.  I cannot move my arm at the shoulder, only at the elbows.  So I kind of feel like a Tyrannasaurus Rex with stubby little arms.  It's important that I keep the breast area still.  I cannot drive for 2 weeks.  After 2 weeks, we'll start working on arm movement. The nurse gave me an incentive spirometer to breathe in on the tube 10 times an hour after surgery to prevent pneumonia.  Then she started my IV line.  The Anesthesiologist came in to talk with me and ask questions about allergies... then I kissed Dan goodbye and he led me off to the operating room.  As I was leaving with him, I mentioned how intriguing anesthesiology is and "it's so amazing, I don't know how it works..."  He jokingly said to Dan..."Neither to I".  As we walked to the OR, we talked about how he knows all about the chemistry, but nowhere has he ever determined how nitrous oxide was discovered in the first place.

Dr. Ferguson and Travis, his PA were at the OR waiting for me.  They and the nurses were suiting up as I laid on the table.  They strapped my arms down to the cross extensions from the bed and the anesthesiologist started dripping in the good stuff.  "Before I go, I just want to thank you all...."  It's absolutely amazing that there is technology to put you to "sleep" enough not to wake up, despite being cut and poked and pulled, until they decide it's time for you to wake up.

I was opening one eye at a time when I was being awaken by the nurse.  It was hard to stay awake and I just wanted to sleep.  My Dad came by to talk with me and hold my hand for a bit.  It was so nice to see him and be with him.  I am so grateful that he is living close by.  He told me that he had been praying for me and that he knows Mom was with me. 

It's still impossible to me that my mother is gone.  I know I saw her waste away to nothing over the early months of this year.  I know that I saw her body lying in her bed after her spirit was no longer dwelling in it.  I know I love her so much and I'm so grateful for her strength and energy and love.  I know that I am learning how much I take time for granted.  I know that I need to love my babies even more and be a better mom to them, to model being a good mother so that they will learn to be good mothers.  I know I need to be more patient and take the moments to enjoy their little spirits and the happiness and natural goodness that they always want to share with me.

I feel the pain a bit, but waking up after this surgery was so much easier than waking up after the mastectomy!  The pain is bearable.  It's uncomfortable and I know it will subside soon.  I am excited to see what the implants look like after 3 days when I can finally take off this compression bra.  I trust Dr. Ferguson will have done a wonderful job reconstructing my breasts.  What a wonderful gift to help me continue on with nice looking breasts.  What a wonderful gift from Dr. Teresa Reading to help me reduce my cancer risk from 87% to 5%.  What a wonderful gift for my mother to urge me forward despite her circumstances so that we could share in a little of this journey while she was still alive.  So that she could see that her choice to be tested and her strength to have a double mastectomy gave me strength to make this choice that could prevent a lot of tears and fear. 

I still fear the possibility of breast cancer and peritoneal cancer...and lung and brain that both Mom and Theresa had.  But I have done all that I can to do all that I can.  I'll still need to monitor, and I am not sure all that I need to do to monitor.  I'm going to set up an appointment with an oncologist to get his insights as to what I need to do going forward.

I feel like I am closer to getting back to "normal". I feel blessed to know about my BRCA2 gene mutation.

I am grateful for skilled surgeons, for wonderful friends who have brought me meals, watched my children and cleaned my bathrooms.  I am grateful for a loving and supportive husband and siblings and for darling, understanding children. 

Heather Von St. James shared a guest post a little while ago.  She has a new video about her journey through Mesothelioma and about her recovery.  Take a look:

 

 

Her positive attitude helped her through a difficult time.  Sometimes it's tough to keep that positiveness going, but inspiring women help us along.

 

You can read more about Heather on her site http://www.mesothelioma.com/heather/

Cystoscopy

The night spent in the hospital after my hysterectomy was the worst night of sleep I've ever had.  I had to pee SO BADLY and couldn't even come close!  I was so out of it and it was so difficult to even get to the restroom.  After several attempts of using the restroom to no avail, my bladder was so full that I felt like I was in labor.  For weeks to months after the procedure each time I used the restroom, it felt so painful.  Then after a month or so, it seemed easier and less painful.

Jump forward four or five months and then I started feeling that pain again!  I went to a urologist and he explained that it could be an infection, or it could be that my bladder is sagging due to an indirect effect of the hysterectomy.  After getting back to normal for a while, just last week...again, the same pain so I went to see the urologist again for a cycstoscopy to make sure that my bladder is structurally sound.

It was quite the experience.  It was amazing to watch the screen to be able to see inside of my own body!  The provider said that everything looked really good and that my bladder was in perfect condiion, except for visible infection.  I am so relieved that my bladder is not physically altered or effected by my prior hysterectomy.

So, I was given an antibiotic (feel much better, than you!) and an estrogen cream in hopes that consistent use of the cream will prevent future infection.  I was hessitant to use the estrogen cream, but the provider assured me that this is even more low dose than the low dose estrogen prescribed to me by Dr. Soisson, my onc gyn who performed my hysterectomy.  Dr. Soisson said that a low dose estrogen would be good for my heart health as well as help regulate my hormones.  I still haven't filled that script...worried that the estrogen can "feed" future cancers.  Just don't know what to do about that.

It's funny, every time I write about my health "issues", I feel like a little old lady.  In the Czech Republic when we would visit with people, it was the older people who were always talking about their health...their rheumatoid arthritis acting up when it was about to rain, or the other health problems they were having.  I don't really enjoy "complaining" about things, but I do want to document everything in case my girls go through any of these experiences in the future.

Nightmare

This afternoon my darling little 3 year old woke up from her nap with tears full of such sadness and fear.  "My dream was so scary!  Me and James were there and you were there.  And you were on a bus and you went away and you left us!  I didn't want you to go, but you just left us alone..."  I kissed her sweet, wet little eyes and held her close.  I told her, "I love you Forever!  I will never leave you!"
 
Even as I spoke those words, fear tightened around my heart and doubt seeped into the back of my mind..."Can you really say those words to her?  Does she understand that you might not be able to take care of her Forever "here" while she's still a little girl?"  I spoke those words to her over and over through her sobs anyway...creating a tangible resolve that I could hope for.
 
Even though I am grown with my own family, and can "take care of myself", I miss her so much!
We held the funeral services for my mother this month.  For weeks, I knew I was to speak, but I couldn't bring myself to be so "final" and write down the words...hanging on to time.  I was so worried and hopeful that the services would honor her and reflect all that she meant to us.  Really, everything was so lovely and turned out so well.  Down to the yellow plumeria lei that my Dad had brought in from Hawaii and laid over her casket.  Her favorite scent when they visited where Dad is from.
 
Thanks to my mother's insistance on going ahead with my mastectomy despite her circumstances, I am now in the 3 month waiting period from the time of my last "fill" to when I can have the surgery to replace my expanders with implants.  Even at the end of her life, she encouraged me and gave me courage. 

These expanders are really so rigid, it makes me laugh more than anything, just how they do NOT move.  I don't really mind them, though.  I am nervous and hopeful that my breasts will look great with the implants.  I worry sometimes about how it's just a thin layer of skin over the implant and amazed that my nipples and skin can have enough blood flow to be healthy.  I am grateful for expert surgeons, who are not only proficient and skilled, but have shown kindness, understanding and compassion.  They are helping me fight for my life...To be able to keep that promise to my little girl.
 

Linda Ann (Wargel) Keliipaakaua

1951-2013

 

Linda Ann (Wargel) Keliipaakaua, our dearest wife, mother, grandmother, sister, aunt and friend passed away at age 61 on March 27th after her fourth battle with cancer.

Linda was born in Evansville, Indiana as the third of seven children to Harold and Ermalinda Wargel.  She attended Mater De High School where she graduated in 1969.  From a young age, Linda loved to go on long walks and desired to travel and see the world.  She enlisted in the United States Air Force and played on the Women’s March Air Force Base and Strategic Air Command (SAC) Volleyball teams, where she met and married her coach and sweetheart, William Keliipaakaua.  After attending Brigham Young University together, they traveled the world with their family in conjunction with military assignments.  Linda devoted herself to raising their four children.  She worked endlessly to ensure that her family was cared for and that her children had opportunities to succeed at their goals.  She continued walking throughout her life as daily exercise and a meaningful way to share time with family.  Eventually, the family made southern Virginia their home.  Linda completed nursing school and worked at Eastern State Hospital, Mary Immaculate Hospital and then as an Operating Room (OR) nurse at Riverside Regional Medical Center.  Recently, Linda and Bill moved to Stansbury Park, Utah to be closer to their children and grandchildren.  Linda worked as an OR nurse at Mountain West Medical Center in Tooele, Utah.  She was truly a devoted wife, mother, grandmother and faithful daughter of Heavenly Father. Aloha oe, our beloved angel.

We are grateful for the professional and personal care provided by the physicians, nurses and staff in Virginia and Utah; most recently at the Intermountain Medical Center, Huntsman Cancer Institute and Harmony Home Health and Hospice.  We are so grateful to our loving and caring medical and Human Resources personnel and friends at Mountain West Medical Center; as well as to our neighbors and friends.

Linda is survived by her loving husband, Bill; her four children Lisa (Dan), Lorie (Jason), Leslie (Preston) and Adam; six grandchildren; mother, Ermalinda; siblings, Mary (Gordon), Donna (Barry), David (Carol), Ronnie, and Jim (Lisa).  She is preceded in death by her father, Harold; sister, Theresa; nephew, Craig; and infant granddaughter, Kayla.

A viewing will be held on ...Interment with military honors will be provided by the Hill Air Force Base and Tooele Veterans of Foreign Wars Honor Guards.  Linda (Veteran – U.S. Air Force) has always been grateful and proud of the service and sacrifices that our military personnel and their families render. 

In lieu of flowers, gifts and monetary donations, please share a walk with and express your love to your loved ones.  “To you, sweetheart,  Aloha until we meet again.  Aloha ‘oe, my kuuipo (sweetheart).”

Another 40ccs

So now I am at 390ccs.  Dr. Ferguson thinks that I am filled pretty much as far as he feels comfortable going.  I have another appointment in 2 weeks and we will see if there is any more "filling" to do.  He showed me some implant "stats" (height, width, volume and profile).  It looks like the implants that might be right for me are right about 400ccs.  There are two brands that he uses and they both have different stats available (Sientra and Allergan 410).  He is most familiar with the Sientra brand, having used it already.  The newly FDA approved implant, Allergan 410, that is heavier and denser, claiming that it holds its shape better and doesn't "wrinkle" or "slouch".  Dr. Ferguson thinks that a rep for these new implant models will be stopping by and might leave a few examples that we can look at. 

My Mom is losing her fourth battle with cancer.  Last week, she would open her eyes and look at me with a smile when I went into her bedroom and told her, "Mom, it's me, Lisa."  Now, she barely opens her eyes at all when we speak with her and kiss and kiss her cheek. I long to be on the backyard garden swing beside her, enjoying the warmer spring days, or going for a "country walk" with her, my sister and our kids.  Just to be with Mom, with Grandma.  At my daughter's soccer practice last week, a soccer mom was talking with her mom on the phone the whole hour.  I see girls my age with their moms at lunch or in the store...and I wish I had more time.  I am grateful for a wonderful mother-in-law, though!  Today I held my 3 year old daughters hand as we walked around the house.  Love that little hand!  I squeezed my 1 year old in my arms and stroked his hair and cheek.  It was nice to take small moments.  I have to remember to do that more.  The small moments make me so happy.