A family’s journey through breast cancer

This is a lengthy post. It consists of 19 entries during the course of my wife’s diagnosis and treatment for breast cancer in 2004. It contains funny and frank stories, things that helped us get through a difficult time, and a look at how a life-threatening condition played out in our family.

April 27, 2004 (update #1)

To the many members of Susan’s Fan Club:

Here we are again, “standin’ in the need of prayer.” We learned this week that Susan has “early abnormal cells of ductal carcinoma in situ” (early stage breast cancer). A cluster of tiny spots showed up on a mammogram last summer, and a second cluster appeared on a follow-up mammogram in March. We got the disappointing news as the result of a surgical biopsy on April 20. The good news is that this form of breast cancer is very treatable and has been detected very early. It’s a case of “if you have to have it, this is the kind to have.”

On May 3 we meet with the surgeon who performed the biopsy to: 1) decide whether or not more tissue around the abnormal cells needs to be removed; 2) discuss radiation treatment; and 3) evaluate possible benefits of Tamoxifin. The “preferred” treatment for this is six weeks of radiation (five times weekly), possibly beginning in 2-3 weeks if no additional surgery is required.

Susan was getting ready to leave work when she got the call, and a couple of co-workers were with her in the initial disappointment. I cut out of work early and came home with the kids before Susan arrived. We then sat down with Lauren and Zack and told them that the results of the test were not what we had hoped for, and that Mommy would be talking with her doctors and having some more tests. Zack’s eyes filled up with tears, and we reassured him that God has taken care of us in the past, is taking care of us now, and will continue to take care of us – and that we will get to see more of that together. We wanted them to know so they could pray, because we trust them with important information, and because we didn’t want them to hear us whispering and think we were hiding something from them. Zack inquired, “Is it okay to ask my friends who are Christians to pray for you?” Lauren started thinking right away about what she would tell her teachers and how she would answer phone calls. Are they great kids, or what?? We want them to understand that we are disappointed but not afraid, and that our hope and confidence in God comes from what we know about him, and not from medical reports. After we had this discussion, we went out for dinner and ice cream!

We would appreciate prayer for our ability to get dependable information quickly, to make good decisions, to set the necessary appointments, and to make adjustments in our schedule as needed. We still have a lot of information to gather, and what we do know hasn’t yet settled in. Since Susan had surgery twice in 1996 for thyroid cancer, we have some ideas of what we might expect, which is both helpful and not-so-helpful. We are also glad to know that God can and does work in wonderful and surprising ways, so we are leaving plenty of room for “the unexpected.”

Two final notes:

1. We would like to use e-mail as our primary means of providing updates, as it is the simplest way to get information out. Those of you who have been “through the fire” know that it can be difficult and emotionally draining at times to repeat the details in conversations and phone calls. This is NOT to be taken as an indication that we don’t love you or appreciate and desire your support – we do! As a practical matter, however, we’re enlisting your support to help us protect the kids, conserve energy, and keep our “normal” life going. (Susan told her co-workers something like, “I hope this doesn’t offend you, but at this point I would prefer not to be asked about details. If you would like, we’d be happy to keep you updated via email, or I will volunteer information if I’m up to it. Unless you hear otherwise from me, however, it’s business as usual.” Please note this very clear example of “taking care of oneself.” You may also see why Susan has hired me as her press secretary! (NOTE: WE LATER BACKED OFF OF THIS FORMIDABLE POLICY – PLEASE SEE UPDATE #2.)

2. We are not hanging crepe, making burial arrangements, or planning Susan’s funeral. We are fighters, and we welcome the camaraderie of those who will join us in fighting the good fight. Our senses of humor are a little banged up but otherwise intact. In addition, we know lots of survivors, including some of you, and that adds to our reasons to be encouraged. We also know that news like this can be awkward to manage, but please don’t let that be a reason to avoid us or treat us as though we have one foot in the grave. We’re still the same old folks, and most aspects of our life continue as before.

If you can help in these ways, it will be a great gift to us.

Thank you for your love and for your prayers. We’ll let you know more when we know more. If you don’t want to receive more of these, don’t hesitate to let us know.

Yours,

Tom

May 3, 2004 (update #2)

Susan and I met this morning with Darlene Barr (surgeon) at Providence Hospital’s Comprehensive Breast Center, and learned that Susan had been the subject of today’s meeting of the Tumor Panel (oh boy!). The recommendation now is to remove the right breast altogether. Dr Barr’s assessment is that more abnormal cells are growing, and trying to remove them with a lumpectomy would carry a greater risk of recurrence. Since this form of cancer does not always show up on a mammogram, there would be no way to ascertain that all affected cells had been removed. A “sentinel lymph node biopsy” will be done at the same time to make sure that cancer has not spread there. Assuming no surprises in the lymph node biopsy, radiation treatment would not be needed.

While we do not relish the prospect of yet another surgical procedure for Susan, this does sound better than a lumpectomy and 6-7 weeks of radiation. The mastectomy will probably take about two hours, presumably followed with an overnight stay at the hospital.

Dr Barr also inquired about our interest in reconstructive surgery. We are in agreement that Susan’s good health easily trumps any concern for appearance. She also recommended that we meet with an oncologist at some point to discuss possible benefits of Tamoxifin or similar drugs as a preventive measure.

When Dr Barr asked about scheduling considerations, Susan’s only concern was not missing the BIG annual Japanese community rummage sale. Since she gets most of her wardrobe there every year for about $30, this is a pretty big deal! We therefore anticipate surgery scheduled in the latter half of May.

We have not yet shared today’s news with Lauren and Zack. We’d like to wait until we have a date on the calendar to show them, and give more consideration to how we can best help them along the way.

Susan went on our church women’s retreat in Leavenworth this last weekend, and felt very loved by many of the 130+ other women who attended. Worn out by the time she got home, however, she could barely keep her eyes open for the kids’ bedtime routine on Sunday evening. Zack complained as I tucked him in, “We’ve been waiting two half days and one whole day for some tender loving care, and now Mommy came home and she’s sleepy, and we only had one hour of tender loving care.” I thought I was providing some of that! Zack and I went out for breakfast on Saturday, and I watched him pack away a giant blueberry pancake, then happily chomp his way through five big slices of extra thick bacon…

Thanks again for the many expressions of love from so many of you. Please note the following prayer targets: 1) God’s powerful intervention in Susan’s body to destroy cells that don’t belong and fortify those that do; 2) wisdom, insight, and skill for all practitioners who will work with Susan; 3) absolute confinement of abnormal cells; 4) physical, mental, emotional, and spiritual preparation for surgery; 5) protection for the kids from fear, worry, and uncertainty; and 6) a speedy and complete recovery for Susan. We appreciate and are counting on your prayers, so thank you for your part.

I think the end of the last email message may have sounded a little too much like, “Don’t you dare contact us!” My aim was to shield Susan from too many inquiries, but as a dyed-in-the-wool extrovert it can be helpful for me to talk things over. If not, I’ll let you know, but for now I’d like to relax the prohibition a little bit. I’ve published my cell phone number.

Blessings!

Tom

May 5, 2004 (update #3)

I want to keep track of all of the amazing ways I have been cared for in this process. Here’s a log of some of the events:

March 27
My appointment for a six-month follow-up mammogram appointment for a cluster of spots they noticed in August. After I had gotten the news from the radiologist and told I needed to have a surgical biopsy, I thought immediately of calling a good friend, a former oncology nurse and current hospice nurse, who always has the inside scoop on doctor recommendations.

I walked out into the outer waiting room and who’s sitting there for her annual appointment, but this friend! I followed her back in; we’re sitting talking in the inner waiting room, when a woman comes up and asks, “Are you Susan?” I had not seen her for 15 years. She joined the conversation and had high praise and recommendations for a surgeon who had done a procedure on her (she even showed me how invisible her scar was!). After this mini reunion, I immediately walked across the hall and made an appointment with this surgeon.

That afternoon I had an unrelated appointment with my general practitioner. Her response upon hearing the name of the surgeon was, “Oh, you will love her!”

April 26
We were hoping to have the biopsy results on Friday, but they weren’t ready, and I was told to call Monday at 11:00. I called Monday at 11:00, and they still weren’t ready. At 4:30, Tom called to find out what was happening. The nurse said she anticipated the results within the next 45 minutes and suggested that he head for home.

I was at work debating whether to stay until I received the call or head home and chance getting the call on the way home, but the call came in right as I was packing up. The two people left in the office at that time, who sat with me, cried with me, prayed for me and brought me tea, both had experienced breast biopsies or surgeries.

What about Lauren and Zack?
Please continue to pray that God would fill them with peace and security. They both seem to need a little more TLC which is not a problem to administer! Pray for wisdom for me and Tom and comfort for them as we tell them about this next surgery. Lauren had a little meltdown tonight, so I have a call in to a friend to have a mother-daughter visit with her and her 12 year old daughter to talk about what it’s like to have a mom being treated for breast cancer and any other questions she might have.

What about work?
It had been decided in February that this was going to be a quarter where another person would teach the class I usually teach every quarter, and I would enjoy a little sabbatical and focus on other work projects. It has been a great relief not to worry about covering the class amid the appointments and uncertainties.

The Sisterhood
One of my neighbors called me last night welcoming me to “the club no one wants to join!” The support, information, resources, and practical advice from these women who have experienced breast cancer have been overwhelming.

The Network of Love for Me and our Family
Keep it coming! Thank you for your prayers and wonderful expressions of love for me, Tom, Lauren and Zack.

Gratefully,

Susan

May 6, 2004 (update #4)

This evening we told the kids that Susan has early-stage breast cancer. I reminded them that the results of the biopsy were not what we had hoped and said, “So Mommy’s doctor is just going to cut off one of her boobs.” We all started laughing, then Zack wanted to know if she would grow it back. Probably not… As I told the kids some about the procedure, Zack burst into tears. But it was short lived – the next moment he was ready to donate one of his own “fish egg nipples” (his description). And so we begin saying our fond farewells to “the bye-bye boob.”

The kids wondered if we know other women who have had breast cancer, and were reassured to know several people who are doing well. They also wanted to know if Susan would be flat, if it would still be okay to snuggle, and what about scars and bras, and can you get Velcro stitched onto your skin.

We talked about ways we already see God at work, and about how much God loves to hear and answer the prayers of children. I read Psalm 91 (The Message) out loud, and we talked about using God’s promises to push away fear and worry. We taped a copy of Psalm 91 on the wall next to Lauren’s and Zack’s beds.

This is all a little more complicated for Lauren, who is at the very beginning of adolescence. She listened attentively, asked thoughtful questions, and shared in some of her brother’s silliness. But at the conclusion of our discussion she started to cry as some of this unwelcome information began to sink in. Thankfully, Lauren responds very well to comfort, and she possesses a good measure of her Mom’s courage, a powerful combination that allows her to recover quickly and gracefully from difficult situations. She is a treasure.

We encourage Lauren and Zack to talk with and ask questions of other adults they know and trust. That will no doubt include some of you, so thanks in advance for helping them walk through this. Susan informed the kids’ teachers of the health issues, and we very much appreciate the attention and effort they give to things that affect kids.

We continue to be more grateful than we can say for the incoming flood of love and support. Thanks especially for praying about sharing this with the kids – it was better and easier than I had imagined, and we are relieved to have taken that step.

Blessings to you!

Tom

May 10, 2004 (update #5)

Mastectomy is scheduled for May 20. Susan checks in first thing, surgery should last about two hours, and she’ll probably be in the hospital overnight.

You’ll note that this gives Susan a few days to try out some of the clothes (bags and bags) she will no doubt bring home from the rummage sale on May 15.

Please see the prayer targets at the end of update #2. In addition to holding and safeguarding our dear Susan, we especially trust God to bless and guide all of the medical staff who will care for Susan before, during, and after the procedure.

We’ll try to figure out some kind of schedule of what needs to happen and where we could use help in the days ahead. Thanks to so many of you who have made such generous offers – hope we can take you up on them!

Yours,

Tom

May 13, 2004 (update #6)

Today I walked on Alki Point in gorgeous sunshine and saw a gray whale less than 100 feet from shore. The gifts just keep coming…

I have been very touched by the generosity and openness of friends who have undergone mastectomies. Two dear women showed Lauren and me their scars, their prostheses, their bras, and encouraged me to ask them any questions that come up. Yesterday Lauren and I visited with a friend who had breast cancer two years ago. Her daughter was Lauren’s age (10) at the time. We had a precious conversation with the girls talking about their fears and concerns, and my friend answered questions and reflected on how her experience affected her and her family. Lauren’s relief was visible, and it gave her more freedom to talk about things – very helpful for her.

Zack’s response is more indirect. This morning he had two meltdowns before school: first the shirt he wanted to wear wasn’t clean, then he forgot his backpack, and he cried like it was the end of the world. He recovered quickly with some TLC – it enables him to calm down and see things more clearly. It helps me to realize that this is one of the ways that the strain comes out for him.

I couldn’t ask for a better partner than Tom to go through this with me. Please pray for him as he fields extra responsibilities at home. If any of you would like to keep him company on May 20th, he’ll be in the Day Surgery waiting room at Providence. We check in at 7 am, surgery is scheduled for 10:30 am and should last about two hours. Please pray that I’ll be able to come home on Thursday. It sounds like it’s common for patients to come home the same day, and staying overnight isn’t necessary unless there are complications.

Big news: I go for a bra consultation (my first ever) tomorrow with another dear friend. I look forward to shopping for a “real” bra, especially since my insurance will pay for it!

Thank you for your prayers and support. We are feeling profoundly loved and cared for.

Susan

May 18, 2004 (update #7)

A number of you have asked what treasures I found at the big rummage sale last Saturday. For $21 I brought home:
– 3 pairs of Ann Taylor silk pants (including a pair of hot pink capris – could be a high fashion year ahead);
– 4 pairs of shorts;
– a pair of capri jeans;
– two long-sleeve and two short-sleeve T-shirts;
– a fleece vest;
– an ultrasuede jacket;
– an exercise tank top;
– three blouses;
– two sun dresses;
– a black lace jacket;
– 2 pairs of sandals;
– a blue and black brocade jacket
– four baskets.
That’s just the stuff for me. I also found several tops, a belt, a pair of shorts, and a couple pairs of sandals for Lauren, a shirt for Tom, and some items for friends.

It was a hoot!

Susan

May 19, 2004 (update #8)

We had a “Bye Bye Boob” dinner this evening – candles, cloth napkins, some special snacks and desserts, and toasts to Susan. The presence of one of our wonderful neighbors helped us make the occasion even more festive. Zack drew a placecard for Susan with her name under a jeweled crown, along with the symbol for breast cancer.

Susan seems exceptionally upbeat – even now I hear her laughing as she talks with her sister on the phone. She’s in good shape physically, which will help to speed her recovery. She’s in a very positive mental and emotional state – went to work today, then couldn’t resist the urge to squeeze in just one more load of laundry tonight. And most importantly, she’s resting in God’s tender care, free from fear and worry, wrapped up in his love, and trusting that he will provide all that is needed in and beyond this procedure.

We check into the hospital at 7AM tomorrow. About 9:00 they will inject blue dye into her breast tissue for the lymph node biopsy. We understand this can be a painful procedure, so we’d appreciate prayer that it would cause her minimal discomfort. (A friend told Susan that for the next couple of days she would “pee Tidy Bowl blue,” so there’s a bit of bathroom humor in it for us.) Please also pray that Susan would be released from the sciatic nerve pain that has flared up the last few days.

Surgery is scheduled for 10:30. The surgeon is Darlene Barr, for those who would like to pray for her by name. I’m planning to bring Susan home tomorrow evening, as a mastectomy usually does not require an overnight stay – amazing.

Once again, we want to express our gratitude to those who have already provided meals, shared their stories, arranged to take the kids, offered to clean our house, and shown us so many other gestures of love and friendship. Thank you especially for your prayers – we feel as though we’re being carried on your shoulders. It would be cavalier for me to say it’s worth it to go through something like this in order to see so much love – but it’s close!

I’ll provide a post-op update as soon as I’m able.

Blessing you as we’ve been blessed,

Tom

May 20, 2004 (update #9)

All is well. Mastectomy “came off” as planned, and the initial lymph node biopsy was negative, meaning there’s no sign that cancer has spread. Surgery was delayed until the afternoon so Susan ended up staying overnight at the hospital but should be home by noon on Friday. It was a long day. I’ll provide more details in another update, but these are the pertinent facts.

Thanks again for the prayers, the emotional support, and the very thoughtful and practical assistance.

Gratefully,

Tom

May 21, 2004 (update #10)

As much as anything, the following notes are a data dump to help me record and/or unload my recollections of a very full day…

Susan and I were up early after going to bed late. At 6:25 our wonderful neighbor Monette showed up to stay with Lauren and Zack and get them off to school. She even started washing the dishes and cleaning up the kitchen as we said goodbye to the kids. L & Z were a little teary, but it looked to us like they were providing support and comfort to each other, and they appeared to have regained enough of their footing to wave at us out the dining room window as we drove away.

By 8:30 Susan was checked in and looking good in those sporty hospital pajamas. We were then taken to Nuclear Medicine, located somewhere deep in the bowels of the hospital. Radioactive dye was injected into her breast tissue so as to provide a marker during surgery showing which were the “sentinel” lymph nodes to biopsy. We had heard that this could be a painful procedure, but Susan experienced no discomfort. One more answered prayer.

Back at Same Day Surgery I was asked to write Susan’s initials above the breast to be removed. I had to check several times to make sure that “Tom loves S.L.” was written in the right location!

By this time, Susan’s Mom and two long-time friends of mine had arrived. We were told that it would be a while before Susan went into surgery, so she decided to take a little snooze. Her Mom headed home, and Tom B, Preston and I hit the cafeteria for the usual late-morning salad bar. These guys are a couple of my favorites, and it was a wonderful gift to laugh and trade stories with such good brothers.

While we were still in the cafeteria (on the other side of the hospital campus), Susan called to report that she was on her way to the OR. I prayed for her briefly on the phone, and she was off.

On our way back to Same Day Surgery after lunch, Susan’s younger sister appeared while Tom and I were wandering around the hospital’s conference center in search of a restroom. Got a call from a nurse about 12:30 saying that Susan was going “back” into the OR. I thought she had already been in surgery, so I had to reset my waiting meter.

We were also joined by a friend from church whose work as a nurse gives her extra sympathy for those in the waiting rooms. Having these dear folks to talk with made the day much more manageable for me, and the time passed more quickly then it might have otherwise. Those of you who have spent time in hospital waiting rooms know that they can be sad and lonely places.

At 4:00 I had not heard anything about Susan, so I headed to the nearest nurses’ station and was relieved to learn that she was “already” in recovery. I was directed to a room in another part of the hospital where she was due to arrive shortly. What a treat to see her gurney being wheeled down the hall! She was still pretty sleepy, but it wasn’t long before her color started to return. After a while Susan could no longer resist the tempting entrees on the “Clear Liquid Diet” menu, and she started wolfing down ice chips, slurping up broth and tea, and digging into a bowl of yummy red Jell-o. Not all of it agreed with her tummy, however, so let’s just say she was able to take a couple of big steps toward clearing residual anesthetics out of her system.

Susan’s Mom came back to the hospital, and we decided I would go and get the kids. Friends in West Seattle had taken L & Z home with them after school. I showed up at their house and was treated to a wonderful dinner. The kids and I then returned to the hospital so they could see that Susan was OK. Dr Barr came by while we were there, confirmed that all went well, and that the initial lymph node biopsy showed no presence of cancer – that’s the BIG answered prayer! She also wanted Susan to stay overnight because of the later surgery and to be sure that pain was under control before she came home.

The kids and I got home about 8:30, greeted by flowers and balloons on the front porch and a plate of really good chocolate chip cookies. I high-fived Lauren and Zack again for being so brave in the face of difficult circumstances, showing so much love and support for Mom, and being able to adjust when things didn’t go as we thought they would. They have been awesome. By 9:00 they were both sacked out in sleeping bags on the floor in our bedroom.

If you have read this far, you deserve some kind of award. We’re glad this day is over, and look forward to helping Susan recuperate here at home where she belongs.

One more time, thank you for carrying all of us through this episode in your prayers. We have seen the evidence of God’s presence and handiwork at practically every turn, and we are blessed beyond measure to have so many loving family members and friends.

With a thankful heart,

Tom

May 21, 2004 (update #11)

We are G-L-A-D to have Susan home! Turns out to have been a good thing that she stayed over in the hospital; I don’t know if I would have been able to give the assistance she needed last night without requiring some care myself… In any event, she got a good rest and woke up with an appetite that even the liquid diet couldn’t satisfy. An hour after placing a special order with Dietary Services, the cart arrived with a huge covered platter. Wow – oh look! It’s one piece of wheat toast!

Dr Barr gave Susan an honorable discharge, and she was ready to ship out by 0900. By the time paperwork was completed and prescriptions were filled, it was 11:30. The first order of business when Susan’s Mom brought her home was to sit down with a nice bowl of our neighbor Margie’s beef stew.

I should note that getting the kids out the door to school in the morning is always a little dicey when Susan’s not involved. It was a zoo this morning. A refrigerator repairman showed up at 7:30 to replace the compressor – the second major surgery for a member of our household in as many days (he was here for three hours). My sister took Lauren and Zack to school, then accompanied Zack’s team on a field trip to the real zoo.

It was nice to have a little nap in the afternoon while the kids were still at school. Susan only had to kick me once for snoring. Some friends and neighbors came by, a couple of wonderful meals were tucked into the freezer, and our neighbor Chris brought over a bottle of wine and the following poem he wrote, titled “Susan Apres:”

“Your flowers will continue to bloom,
Your tomatoes will taste just as great.
The assumptions you made are still safe to assume;
The only thing to worry about is your mate.

If he makes it, you’ll be OK;
Heck, it was all done in a day.
Your life is now a little brighter,
And – hey – you are just a little bit lighter.”

Are you getting to love our neighbors as much as we do??

Lauren’s good friend Helen came to give Lauren a ride to church for the kids’ choir practice, and dear friend Marilyn brought and cooked a delicious dinner and waited on us hand and foot. We could get used to this! Shawn brought Lauren home just in time for a rhubarb dessert, and now we’re about ready for bed. Enjoying the company of wonderful people and eating delicious food prepared by others can take a lot out of you.

Susan’s doing surprisingly well. Strange to realize this afternoon that only 24 hours earlier she was on the operating table. She describes the pain she’s experienced as like the stinging of a skinned knee. Her system has flushed out the anesthetics, and she’s able to do several of the exercises recommended for recovery.

To our surprise and delight, both kids wanted to look at the scar; the stitches are all internal, which makes it less scary to see.

One final note: Susan weighed herself at home the morning before surgery. We asked the kids if they had a guess about how much less Mommy would weigh after the mastectomy. Zack’s first guess was ten pounds. When we expressed surprise, he said, “Okay, 30 pounds!” We haven’t done the post-op weigh-in yet, but my guess is that we’ll come in a little under both of those estimates.

Blessings to all.

Tom

May 27, 2004 (update #12)

It’s been a pretty good week since Susan came home from the hospital on May 21. She felt great for the first few days. We were all surprised by her mobility: waking up with both hands behind her head, and reaching up the wall to within 3-4″ of a mark we made before surgery. She was out for walks, emptying the dishwasher, dressing herself…

BAM! Susan seemed to hit a wall on Wednesday. She was dizzy and nauseated, had a major headache, and felt a lot of pain around the incision. Thankfully we already had an appointment with her surgeon. Symptoms notwithstanding, we learned that all of this was “routine” and that Susan is recuperating nicely. We also received the final pathology report with the very good news that all six lymph nodes sampled are negative for cancer. Thank you, God!

The pathology report further revealed that the location of the tumor was right next to the chest wall. Best practice calls for removal of a “margin” of 1-2cm around a tumor to ensure that surrounding tissue is not affected. Because the margin in this case was as small as 0.1cm, Dr Barr would like us to consider follow-up radiation treatment. She could not do anything more surgically; as she pointed out – and we agree – we do not want to leave any doors open for recurrence after we just took such dramatic steps to remove cancerous tissue.

This was discouraging news. We had hoped to avoid radiation, and we’ve decided not to think – much – about it until we meet with a radiation oncologist on June 14 to get more information.

Lauren and I were riding home together the next evening and I told her about this latest news. I figured she’d probably pick it up by intuition very soon anyway! She was understandably upset that Mom may have to go through yet another medical intervention. One more time, however, a couple of good cries mixed with comfort+assurance helped her to recover. I marvel at how effective tears can be in helping to wash out those places where we hold sadness, fear, uncertainty, and their host of cousins. Lauren is a courageous young lady, wonderfully able to “rule her spirit.” She sets a compelling example for many of us who are several times her age! We will talk with Zack this weekend.

We continue to find humor in odd places. Reading the pathology report, I was grinding through stuff like “…labeled ‘Lane, Susan’ designated C, sentinel lymph node #3, right axilla, count 2658, is a 1.2 x 0.6 x 0.6 cm lymph node with surrounding adipose tissue.” Then I read “…labeled ‘Lane, Susan’ designated G, right breast…” and it dawned on me that the lab actually has The Breast! When I was a kid, I got to keep my tonsils in a little jar. I wonder…

Meanwhile, Susan felt much better on Thursday than she did on Wednesday. With only minimal threats from loved ones, she’s wisely throttling back on her activity level and taking advantage of this time to rest. It has been an enormous help to have different friends bring meals. And what meals – we have been eating like royalty!

We’ve all been more tired than usual, so it’s been a welcome change to get to bed a little earlier most nights. Friday evening we’re going out to the theatre to see two plays: “Green Eggs and Ham” and “Gertrude McFuzz.” We don’t want to fall too far behind on cultural events…

We are very, very grateful for your love, for your interest, and for your help in this journey. Please continue to keep us in your prayers, and thanks for doing that hard work on our behalf.

With much love,

Tom

Jun 5, 2004 (update #13)

It’s been a quiet week at our place…

Not much news to report on the medical front. Susan is eager to get rid of the drain that’s been in since surgery on May 20. Since she’s been active (going for walks, doing recommended exercises), her body produces more fluids. This appears to have slowed her progress in getting under the required threshold for removing the drain, but seemed preferable to a lower level of activity.

Susan anticipates returning to work for at least part of the day on Monday, and we’d like to send her with pillows and a blankie. In the meantime, a friend who’s a nurse suggested that Susan lay off putting away dishes and washing clothes. We may have to put a lock on the laundry room door to keep her out of there…

When we told Zack about the possibility of radiation treatment he was very matter-of-fact about it. Unlike Lauren, who lives in the world of possibilities and immediately senses the emotional impact of a possibility, Zack lives in the world of logic and facts. Apparently he recognized that there was no new data to which he could respond, so he told us he had no questions at the moment and continued eating his breakfast.

Tomorrow morning we will be among the 15,000-17,000 people expected to participate in this year’s Susan B. Komen “Race for the Cure.” We’ll walk a 5K on the venerable (and vulnerable) Alaskan Way viaduct as part of this fund-raiser for breast cancer research and prevention. The race ends with a parade of survivors at Qwest Field. I’m excited about my first foray into the stadium, and glad to know that this $440 million facility can be used for even more than eight football games a year…

Zack and I are on our way down to the beach to see what some of the lowest tides in 19 years will bring to light. Thanks again to all of you who continue to hold us in your prayers and make it so abundantly clear that you love us. We must be among the most blessed people on earth!

Much love,

Tom

Jun 15, 2004 (update #14)

The big news last week was The Removal of The Drain. Susan was very happy to be rid of that little appendage after nearly three weeks, and we treated ourselves to a visit to the new Ben & Jerry’s ice cream parlor in West Seattle. We’ll stick with Husky Deli – it’s a local biz, they make their own ice cream, and the cones are twice the size and half the price.

This week is full of medical appointments. Yesterday (Monday) we met with a radiation oncologist at Providence in the morning. We liked this guy – Stephen Eulau – very much. He was extremely warm, attentive, and professional, and helped us understand more about how radiation works. He explained that without it, a recurrence would most likely be in the chest and lung and therefore much more serious. We were ready to give him the green light before we went in, but that sealed the deal.

Susan went for a 2.5 hour appointment this morning at Swedish Radiation Oncology, where she’ll go for treatments. They did a CT scan to measure body contours and calculate the angle and depth of radiation, and made some preliminary markings – like she had been surveyed. She has more appointments on Friday morning for the radiation treatment plan simulation, on Monday (6/21) for plan verification, on Tuesday for a mock treatment, and then actual treatment begins on Wednesday, June 23. The regimen consists of ten-minute treatments at 9:50 am, five days a week, for 6-1/2 weeks.

Susan is relieved to get this process going, and glad to have an end date in view. We have already been impressed with Dr Eulau’s communication and thoroughness, and with his willingness to help us get things rolling right away.

Oh – one more appointment with Dr Erin Ellis, an oncologist, yesterday afternoon. She did a thorough exam and went through a complete personal health and family health history. She does not recommend Tamoxifin for Susan; while the drug would decrease the risk of another incidence of breast cancer, it could also increase the risk of endometriosis, which has been an issue. This sounds like good news – don’t have to be concerned about some unpleasant side effects, and don’t have to keep track of more pills!

Susan was impressed with the Swedish Cancer Institute. Staff makes sure they know patients and call them by name, aesthetics are beautiful, and it sounds like a lot of thought and care has gone into designing their approach to patients. We understand that this place is a leader in cancer research and cutting edge treatments.

Lauren and Zack continue to show their resilience and their senses of humor. We want the kids to meet Dr Eulau, as he would help put a friendly and encouraging face on this process. In the meantime, Zack has decided he “likes” Susan’s newest scar, though he’s not sure why – and neither are we! Lauren was upset about the necessity for radiation. She expressed something to the effect that it feels like Susan still has cancer, and she just wants all of this to be over. We agree! It did help Lauren to know that we’ll be able to go to Lake Chelan after the treatments. This was particularly welcome news for her because the lake is warmer in August than in July, when we originally planned to go.

Maybe the fatigue associated with radiation treatment is the result of driving to so many medical appointments! We’re thankful that Susan’s work is very quiet right now, and that she’s scheduled to work just ten days in the office this summer. We’re also grateful to have access to such wonderful medical care and facilities, and to have such a solid and loving base of support underneath us and all around us.

If this is more disjointed than usual, it’s because I can barely keep my eyes open and my head keeps dropping down on the keyboard. Thank you again and again for your prayers and your love. This would be a lot more difficult without all of you!

Joyfully,

Tom et al

Jun 26, 2004 (update #15)

Susan started radiation treatments on Tuesday, June 22, one day earlier than anticipated. Now we know that Friday, Aug 6, is the last one, and we’re counting down the days.

The 9:50 AM appointments are pretty simple – she’s in and out in 15 minutes. Parking is free and convenient, and it’s just enough time to be greeted by staff, change into a robe, get positioned and zapped, and get dressed again. The procedure itself takes only about two minutes, and most of that is getting the equipment lined up with the little tattoos that “mark the spot(s).”

A common side effect of radiation is fatigue, but we decided this past week didn’t give us a good baseline. After a very full weekend, some evening meetings, Lauren performing and touring with the church kids’ choir, and a heavy workweek for hubby, it’s small wonder Susan was exhausted. This was also the week we decided to start a morning routine of twice climbing the LONG stairway near our house that runs up a very steep hillside. My legs tell me that the elevation gain must be about 3,000 feet. We understand that regular exercise can help minimize radiation-related fatigue – maybe by making one too tired to notice?

A dear lady who’s been through radiation sent over three squirt guns that look like ray guns so the kids and I can speed up the treatments. That will help, especially on warmer days. Zack’s trying to see if he can fire all three of them at once.

On the kid front, Lauren wanted to sleep in while Susan went for treatment on Thursday morning. Since the kids have stayed home by themselves for short periods, it seemed reasonable to leave them. Susan returned about an hour later to Lord of the Flies. No blood was spilled, but there had been some punching and screaming (not necessarily in that order). We realized that Lauren and Zack still feel a little anxious and worried for Mom, so we’re arranging for them to be with friends or family during the appointments. They will go with Susan to an appointment July 8 to get a better idea of what the process looks like. The radiation oncologist is extremely kind and loves kids, so we expect L & Z will enjoy meeting and hearing from him. I wonder if they’ll want to push the button from the control booth.

Please continue to keep us in your prayers, especially: 1) that God would keep Susan healthy and sustain her energy; 2) for comfort, reassurance, and freedom from worry for the kids; and 3) for extra energy and focus for me as I assume additional duties around The Manor. Susan leaves enormous shoes to fill when it comes to getting things done! We continue to be thankful for God’s peace and presence, for abundant provisions, and for the underlying hope and trust that we sense on a daily basis. Thanks especially for loving us in such practical ways.

Tom

Jul 1, 2004 (update #16)

Lauren and my friend Karen liked seeing the Swedish Cancer Institute and meeting some of the staff there. Lauren commented multiple times after meeting people, “She’s nice,” and Karen liked the waterfall, paintings, glass mobiles and other artistic and aesthetic details of the place.

Young and competent Emily, the prosthesis specialist at Nordstrom, again amazed us. Emily brought in several comfortable, attractive and well-fitting bras, smoothly assisted me to put them on, and examined and checked to ensure the best fit. As I stood there in my 52 year old, one boob body receiving such helpful consultation, I asked myself why I had never done this before! I walked out of there with two fully-insurance- paid bras and a natural looking and very comfortable silicone prosthesis that can either adhere to my chest with sticky silicone nubbies on the back or slip into a pocket in a bra or camisole.

Lauren picked out and bought a tank top with her own money, so she had her own Nordstrom shopping bag. It was very special to have her want to participate in this shopping expedition.

We finished with lunch at which time the sun shone through the overcast sky.

It was a good day to be a breast cancer survivor.

Susan (aka Uno Boobius Momoobius)

Jul 20, 2004 (update #17)

Tom and I are without kids this week! Lauren and Zack went out to Hood Canal with my extended family this past Saturday and will be coming home on Thursday. It’s been fun doing things like going out to dinner at 10:00 pm and not so fun to get started on our long- delayed (six years) kitchen painting project.

I wanted the kids to understand a bit more about my daily radiation treatments so they came with me a couple weeks ago. Zack’s comments: “It was boring. Your doctor was funny. They didn’t have any candy I could eat.” (Braces mean no chewy candy.) Lauren’s comments: “The people were really nice, but I was underwhelmed.” I figured it was better for them to be bored and underwhelmed than terrified. My guess is that their vivid imaginations had me going into a dark room with a gigantic ray gun with lots of laser beams and zapping. They were impressed with the big door that seals off the treatment room.

As of this Thursday, July 22, I will be 2/3rds of the way through radiation treatment. So far, I have not experienced any fatigue, but the skin on part of my incision is sensitive and starting to crack. Please pray that this won’t become any worse because if it starts weeping and becomes infected, they may have to take a break from the radiation treatments. I have my heart set on being done on August 6th.

I went to a wonderful conference on July 17, “Cancer as a Turning Point: From Surviving to Thriving” (www.healingjourneys.org) with a 70+ year old neighbor who had breast cancer four years ago. The speakers encouraged us to identify what is life-giving and to take baby steps to incorporate more of that into our lives. Although it would be easy for me to dive right back into the rat race of life, I would like to take the rest of this summer and fall to reflect on this. I’ll be off work all of August and hope to work only two (instead of four) days per week fall quarter.

Thank you for all of your prayers. The image that has come into my mind is of being a rock star who has leaped off the stage into a sea of arms (another take on the “footprints in the sand” metaphor and NOT like “School of Rock” for those of you who have seen it!).

Joyfully,

Susan

Aug 2, 2004 (update #18)

After today’s treatment, Susan is on “four” of the 5-4-3-2-1 countdown. This week she’s receiving a “boost,” a narrower field of radiation concentrated just on the incision, since that’s where cancer would be most likely to recur.

The radiation side effects hit Susan pretty hard this last weekend. The skin along the incision has held up (thank you for your prayers!), but the skin under her arm is burned, blistered, peeling and very sensitive. Zack said he likes the square tan; we think it’s pretty weird. Thankfully the majority of the most painful area is out of the current treatment field. Meanwhile, we’re praying that Susan’s recovery from this phase would be speedy and that she’d find relief right away. We eagerly anticipate the end of these treatments, but that is tempered by the fact that her body is pretty worn down. Please keep her in your prayers as these nasty side effects of radiation take a couple weeks to show up completely, then another month to dissipate.

Fatigue, the other common side effect of radiation, also hit big time so Susan feels like she has severe jet lag. We’re grateful that the summer schedule allows for both morning and afternoon naps, a pattern she’s been out of for about fifty years!

We have a camping trip with some other families scheduled for this weekend in Eastern Washington (H-O-T). Given the heat, dust, smoke, lack of access to showers, etc., we decided that Susan could take advantage of a quiet weekend at home while the kids and I enjoy the heat, dust, smoke, and lack of access to showers. The following weekend we head off for a totally relaxed week in a wonderful condo on Lake Chelan. That will be our first celebration of the end of all of this, and we’re practically counting the minutes.

We are once again enjoying the great gift of meals being brought in by family and friends, and one dear lady is driving Susan to and from this week’s appointments. Many, many thanks for the help with arranging play days for the kids, and for the persistent prayer coverage for Susan and our family.

In other family news: Not having to prepare meals has meant that I was able to dismantle much of the kitchen to get it painted. After putting off this project for about seven years, it now looks wonderful. More specifics? It’s a peach/melon color that changes with the light. It was one of those rare occasions on which we picked the right color the first time. A couple of heroic friends helped us get the project going, and I may be able to finish it up tonight.

On a much more fun note, Lauren and Zack are going to “Pirate Camp” on Vashon Island this week. This is as much fun as kids can have – daggers, swords, ripped-up clothes, buried treasure, lookouts, and much more. On your next visit ask them to sing you the Pirate song.

In spite of some of the challenges of this summer, we are very aware of God’s mercies and provision. If you don’t count an unusually high level of chaos (even for our house), I’ve been surprised by how normal many things seem. This is in large part because of the help and support so generously provided by many of you, and it’s made a huge difference for us. Thank you, thank you!

With love from all of us,

Tom

Aug 14, 2004 (update #19)

Susan finished radiation treatments August 6. We are grateful and relieved to have come to the end of that road – it seemed a longer one than we anticipated. Now her body can heal and recuperate without the disruptions caused by radiation.

I went with her to the last treatment, met the friendly and attentive staff, saw The Machine – and the 18″ thick door full of lead shielding going into it. Swedish Cancer Institute struck me as a place where people come day after day in a fight for their lives. I won’t soon forget my impressions of hope, courage, and grit mixing with the best that science and technology has to offer.

Susan’s wanted to work in the garden but hasn’t had the “oomph” to get out there much the last few weeks. This morning she’s clomping around in her red garden clogs staking up our gigantic and heavy-laden tomato plants with rebar and picking beans. How great to see her energy returning.

We trust Susan will be able to swim while we’re at Lake Chelan. The mastectomy scar has healed nicely, but patches around it still need new skin before she can be in the water – not even baths (showers are OK). The square “tan” is fading – good riddance!

Some neighbors asked Lauren this week how she’s felt about her Mom having had breast cancer. She told them at the beginning she didn’t know what was going on and felt like blocks had been pulled out from the base of a tower she built, but that more information was one thing that helped her rebuild. When we asked about the tower now, she said it’s almost as tall as it was before, but she wants to build it much higher. As you can see, conversations with neighbors have been one of the real gifts to her this summer.

We rejoice in Lauren’s strength and resilience, and we see more depth in her kindness and willingness to encourage others having a hard time. She’s made great strides in learning how to ask for support when she needs it, and has gained more confidence in her ability to give support to others.

Zack has been a primary recipient of Lauren’s support. She’s helped him stay on his feet and on track until issues get sorted out. The two of them spend endless hours playing, swimming, reading and hanging out together. Other families have included Zack in many, many fun activities; these familiar people and settings have provided him with additional safety and comfort – and he hasn’t had to talk about things unless he wanted to. Given that cancer was running in the background, it’s been a great joy to see Zack running around shirtless, tan, and skinny as a rail, the very picture of summer.

We are emerging from all of this as a healthier, stronger family. We are even more grateful than before for our families and friends, and for God’s abundant gifts of love and mercy and provision. We look forward to offering hope and strength like we’ve been given to others who will need it in days ahead. Once again, many, many thanks for the love and support which have made this load a much lighter one for us.

Blessings to you,

Tom

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One response to “A family’s journey through breast cancer

  1. This is a really wonderful chronicle–not just of a difficult time and the ins-and-outs of breast cancer treatment, but also of life ongoing during all of that. I really hope others who are struggling with this diagnosis come across your blog and have the time to digest all the moving parts that made this experience not just successful but in fact enriching and life-affirming. Thanks for sharing Tom!

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