Two years later

Two years ago, a doctor, whose name I can't even remember, called to confirm the diagnosis of breast cancer. Now - I wish I couldn't remember having breast cancer. But, the reminders sometimes wake me up at night. I see them in the mirror every morning. I take them with my morning juice and cereal. I put them on as I select my wardrobe each day. I brush them out after my shower. I feel them when a friend pats me on the shoulder. I feel them flash through my body from time to time. I schedule them around my work hours. I feel them when I want to be intimate. I worry about them hurting my children. I fear they will steal my future.

I hate cancer and all it's done to my life.


Tomorrow I have an appointment with the pain clinic doctor. The pain in my shoulder started in October. I have taken two different types of medications that have not helped the pain and actually screwed up my body more. I was referred to the pain clinic in April - and tomorrow is my appointment. I'm hoping for a diagnosis. I'm hoping for a treatment that works. I'm hoping for a cure, but I'll probably just get referred to yet another doctor.


Sorry for whining. Pray as you see fit.

Upping the Ante -- Moving On To Stronger Pain Meds (Medical Update)

(cross posted from Coffee and Chemo)
----------------------------------------------------------

Today, I began treatment with Herceptin again.  Since I have not received Herceptin in a long time, I needed to receive a "loading" dose.  Beforehand, I agreed to take hydrocortisone, to reduce the chances of an adverse reaction.  I did not really want to receive more steroids, but I also did not want to have to stop treatment in the middle.  Thankfully, I did not have an adverse reaction this time.

Also today, thanks to Moshe's gentle persistance, I chose to switch my method of pain management.  I got a patch which releases pain medication on a steady basis, over the course of three days. I am starting with the lowest dose patch, because I do not want to be all woozy.  I had to upgrade to something a bit stronger, becaue my previous regimen no longer kept the pain at bay.  I am hoping that this low dose is enough to do the trick.  One of the nurses warned me that I might experience some wooziness initially, but encouraged me to keep the patch on for several days, to give my body time to adjust and get over the wooziness.

So far, I am not feeling particularly woozy.  I still have some mild pain, but it really is mild.  We will see how I am feeling tomorrow.

My mom kept me company at the hospital today, which was really nice.  We ended up being at the hospital for a really long time (I arrived at 9:00 am and we did not get out until 4:30 pm).

I would have liked to go home and rest, but God had other plans for me.  My son, who got himself a job working as a junior counselor this summer, had a field trip with his camp today.  He called me as soon as he learned that they would not be getting back in time for him to catch the bus to Tekoa for his horseback riding group.  I offered to take him by car today as well (I drove him and one of his friends yesterday, for their first lesson, so I could see the stables, meet the owner, and provide the boys with some sort of orientation so they would be able to come and go on their own).

Once I was driving in anyway, I decided to hang out in Tekoa with my friend, KAA, and just drive the boys home after their horseback riding session. I did not mind the wait, but I needed ice cream.  KAA and I went to the Makolet and I bought myself a tub of Ben & Jerry's Chunky Monkey ice cream. Despite the hot weather (and the steroids coursing through my system), I exhibited exemplary self control and did not eat the entire tub of ice cream.  I used a trick my father taught me and wrapped the left over ice cream in multiple layers of plastic bags.  I used a LOT of plastic bags and the ice cream was still frozen when I got home, almost an hour later (Thanks Dad!).

Tonight, Moshe, my mom, and I, watched several episodes of The Big Bang Theory. (Thanks, LWG!)  If you are a geeky type, or even just married to one, you have to watch this!  You will laugh!!

Medical Update -- Doxil, Weight Loss and Herceptin

(cross posted, with a bit of editing, from Coffee and Chemo)
--------------------------------------------------------------------------------------


Started Doxil on Tuesday.

We have not received approval yet, but are optimistic that our supplemental insurance will cover the treatments.

Meanwhile, a few of our many angels covered the cost of today's treatment.

So we wrote a check to the hospital and I received my first treatment.

At one point, I felt a tightness in my chest and midsection.  The nurse slowed down the pace of the IV. The pain lessened, though I still felt a tightness in my chest, in the area of my sternum.

The pressure did not increase when the nurse raised the rate again, but I still feel the tightness in my chest now (almost 7 hours later).

My next dose of Doxil is in a month.

My oncologist advised me not to expect to feel a difference in pain until then.  I hope he is wrong.

Lately, I have had to take half a Percocet at night, in order to alleviate the pain enough for me to fall asleep.  I wake up in the morning, earlier than I want, from pain.  I do not want to take a whole pill, because I do not want to be a zombie in the morning!  I am back to taking pain killers (2 Optalgin & 2 Algolysin) as soon as I get up, and every four hours thereafter. 

My appetite has not yet returned fully.  I only have a few more kilos left to lose (4.7 to be exact).  When I get down to 70 kilos, I will have to do something to make sure that I do not lose too much weight.  I always said:  If I have to eat a high calorie diet, I will just eat ice cream all day.  I might need to stock up soon....

I also need to do some sort of exercise.  I know I do not move enough during the day.  I lost all this weight, yet I still feel like I have to drag myself to go anywhere.

Good news for today:  My health fund approved coverage of Herceptin!



Please pray, or send happy, healing thoughts, for RivkA bat (daughter of) Teirtzel.

With love and optimism,
RivkA

Mad

(Cross posted, and edited, from Coffee and Chemo)
-------------------------------------------------------------------------

On Friday, almost out of nowhere, I got really angry at my kids and started snapping at them.

Moshe, my dear husband, gently questioned me, "Why are you yelling at the kids?"

All I could answer was, "I am mad."

I sat sulking for a few moments.

Then, I pondered Moshe's query.  "Why am I so mad?"

I could not avoid the obvious explanation that I felt displaced anger.

If I am being completely honest, I have to admit that I am mad at God. 

I am mad that He gave me cancer.  I am mad that He made things worse (even though things will get better again, BE"H). I am mad that He is making me deal with cancer, now, before my daughter's Bat Mitzvah (coming of age), when I have lots of other things to worry about....  I am mad.

I trust God.  I have not lost faith.  But I am mad at God.

Once I realized where my anger came from, I had to stop snapping at my kids.  Fair is fair; if I am mad at God and I want to yell, I should yell at God.  But I did not want to yell at God.

Instead, very politely, I explained to God just why I was so mad at Him.

I allowed myself to feel angry.

It is OK to get mad at God.  We do not have to like everything God does or agree with everything in His plan. 

I accept that God has His reasons.

I just don't like them, whatever they are.

I do not want to have cancer.

I want God to make the cancer go away!

The Battle goes on

Update from Dianne's husband Pat

This week I was searching the web for information about life after breast cancer to better understand how I could help Dianne. I found an paper from the Journal of Clinical Oncology by Hester Hill Schnipper titled Life After Breast Cancer (and yes, this is the type of reading you do once cancer enters your life). The introduction to the paper really struck me as to what is going on in Dianne's life, and mine, at this time:

SHRUGGING OFF her mink coat, Meredith Powers settled into the comfortable chair in my office. A 40-year-old single woman, she had completed her active treatment for stage II breast cancer 3 months earlier. Through the months of surgery, chemotherapy, and radiation, she had maintained most of her normal life routines and insisted that breast cancer was a disruption that could be managed. To her astonishment, she now found herself overwhelmed with emotions and unable to function. She called her medical oncologist when she could barely get out of bed in the morning and found herself weeping uncontrollably. As she explained that she had never before felt so out of control and that she was "baffled" by her feelings, she began to cry.

"Am I crazy?" she asked me.

As we began to talk, it was clear that she was struggling with many problems that were new to her and that were directly related to her diagnosis and treatment. She was exhausted and very frustrated with her diminished level of energy. She was angry with many of her friends and worried about being a burden to her family. She was unhappy with her body and the changes due to her cancer; she hated waiting for her hair to grow and felt "fat and ugly." She worried about her performance at work and her limited options considering a career move. She wanted her old life back and was starting to understand that was impossible.

Beside not having a mink coat, and being married instead of single, much of this story describes what Dianne has been feeling since the end of active cancer treatment (December 08). The paper goes on to say:

The crisis of breast cancer does not abate with the final chemotherapy or radiation treatments. Indeed, in many ways, the real crisis is just beginning. How do you learn to live with the sword of Damocles ever dangling? How do you come to terms with the changes in your body as well as the changes in your perspective? How do you manage the changed relationships and the intense emotions that continue into the future? These are questions with which the patient will have to struggle, as life is slowly reclaimed. Recognizing that there are existential issues that must be examined by each of us in our own hearts, there are predictable problems in many other areas that can be addressed by caregivers...The challenges of survivorship are many. More than anything else, it is the searing recognition of mortality that changes everything. From this moment forward, all of life will be viewed through a double lens as we appreciate the possibilities of both a long life and a greatly abbreviated one. This dual view may actually, over time, enrich our lives. We make a conscious and willing choice, each of us living with cancer, to go on, to take and to appreciate the darkness as well as the sunlight. We hold dear the night as well as the morning.

This is how Dianne is doing. This is how we are doing. If you want to learn more about life after breast cancer, you can read the full article at:

http://jco.ascopubs.org/cgi/content/full/19/15/3581

Please continue to pray for our family, the battle is not over.

Not Scarred by the Scar

(These events occurred after my second surgery for papillary thyroid carcinoma in April  2009.)

A few weeks before my surgery, my 13-year-old son, Jon, was a little more excited about the upcoming event than me.


He enthusiastically commented, "Yea, cool, mom, so are you nervous? Like they're going to go in there and slash you open and look for the cancer!"

I bit my tongue, for about five seconds, then calmly informed Jon that I was his mom, I loved him and I didn't take offense, but warned him against speaking that way to any other cancer/surgery patients. I'm not sure if he got it or not.

My husband, Scott, was a little more dramatic when I first removed the cool white foam neck guard and dared look at the 6 1/2 inch scar, that extended more than half way around my neck and up to my right ear.

  


 





"Wow, you look like you got ripped open with a chain-saw!"

He did have a clever solution later, when we discussed the near-certain probability of future surgeries. "Hey, they should have just put in a zipper, so instead of another surgery, we could just zip it open, take out the cancer and zip it back shut."

Why didn't my doctor think of that?

Another comment came on Sunday morning during coffee break at church.  My always-laughing friend, Betty, admired my scar and said, "They really sliced you open this time!"

It really was fair game. When she came to church with a band-aid on her nose covering the spot where they removed skin cancer I glibly asked her if she cut herself shaving.

I guess we're even.

After my 6-year old daughter, Rebekah, got used to the scar, she had news for me.


"You know what it looks like Mom? Let me show you!"

She dug around in the scissors drawer until she came back with this pair and held them up triumphantly. She asked me if the doctor used scissors to open up my neck. We must not have satisfied her curiosity, because a few days  later she questioned us further.

"Did they use a plastic knife or a sharp knife?

I needed clarification. "Do you mean when they cut me open for surgery?"

"Yes."

Daddy decided to add his expert commentary. "They used a sharp knife."

Beka, "Oh, a sharp plastic knife?"

Mom, "No, a sharp metal knife. It is called a scalpel. It's sharp so it doesn't hurt. They use it once and throw it away."

"Oh."

I have been thankful that we have been able to communicate about something that is horrible and scary - cancer. Teasing and joking are acceptable methods of dealing with stress, and I am thankful my kids and husband  felt comfortable enough to tease me.  That is normal for us.  Normal feels good.

The scar doesn't bother me. I don't cover it with a scarf, I don't cover it with makeup.   Maybe because I'm happily marrried and my husband doesn't care. Maybe because I am getting wrinkled and gray and one more flaw can't make that much of a difference. It also helps that at 5 foot 2 inches, I am shorter than most people and they are looking down on me and don't really see my neck.

I also look at my scar as a symbol of overcoming.  The Lord has been my strength and my song, and many prayers have padded the rocky road with peace and comfort. A nurse told me to wear it proudly, because I was alive.

I loved the saying on this framed text in an antique store - not enough to buy it, just enough to photograph it.

By the way, I consider this photo spiritual foreshadowing.  I saw this two weeks before I found out my cancer had returned.  The Lord was preparing my heart.

Funeral Rubber Neckers

Cross-posted from MyLifeLine.org  09/29/09 7:56 PM

-----------------------------------------------------------------

I purchased an additional bookshelf. This means I was able to pull many books out of storage and keep them within arms reach: books I've read, books I barely remember buying, and some I forgot that I have. In this process I came across "Before I Say Goodbye" by Ruth Picardie. I sat down last night and read it. I found myself relating so well not only to Ruth's situation, I also related to her, albeit English, sense of humor and methods of coping.

In the book, she tells her husband who is on list A and who is on List B of people who are allowed to attend her funeral. She talks about her disgust with funeral rubber neckers. We all know them. These are the ones who weren't especially close to the person who passed and they show up at the funeral hoping to be seen by the funeral attendance takers thereby earning a label of not only close [insert relationship] of the deceased, also horribly bereaved funeral attendee. It amuses me because I have told my family the same thing. I've instructed them to hire bouncers for my service to throw out people who simply do not belong there, the ones who are in it for visibility or public relations purposes.

That way no one in my family will be burdened with receiving overly dramatic condolences from people whose names they've never heard or look at each other shrugging at the wailing fatty in the corner who none of them recognize.  We all know these people who show up even though the deceased barely knew them or may have even disliked them, however they take up space hoping it will help them in the ever-after.

Since I fancy myself somewhat a celebrity (yes, these delusions preceded my illness), I initially considered giving out admissions tickets; but even my closest friends would scalp those suckers in a flash if it meant being able to buy a pair of Christian Louboutins. That's why they are my friends!