what thoughts rattle around in your brain when you're a mom of a toddler and a breast cancer patient?

Tuesday, December 21, 2004

Practicing Medicine

Ever wonder why your doctor's office calls itself a medical practice? It's because all doctors are still practicing medicine, because in a lot of situations, there is no one right answer.

My most recent example -- although I have many stories now -- is on the topic of reconstruction of the breast. Before I get started with my story, let's get everyone who is uncomfortable with the word "breast" more settled. Breast, breast, breast! I used to fidget when I had to say it out loud too, but I have to say it so many times each day that I don't even blink now.

Ok, so, we were talking about breast reconstruction. There are many ways to accomplish this, but there are reasons why a person might choose a particular method. The simplest and least invasive way of reconstructing a breast is to use something called a tissue expander. Basically, a plastic surgeon creates a pocket in the patient's sub-pectoral muscle and inserts this thing that is alot like a balloon, only it holds sterile saline solution and it can be filled slowly through these little holes in it called ports. The plastic surgeon slowly fills it up to the desired size of the breast cup (A, B, C etc) and then overfills it to create some extra skin. The fill-up process is called "expansion." When expansion is complete, there is a second surgery to swap the expander for an implant. Often during this surgery, the plastic surgeon will also make some alterations to the "good" breast to make it match the newly reconstructed breast which is full and perky. Alterations to the good breast might include adding an implant or giving it a "lift" which is called mammoplasty (or maybe it's mastoplexy, I forget).

Here's where we get into the area of medical practice versus medical science; if a patient is going to have to have radiation to the chest wall after her mastectomy and chemotherapy, then many plastic surgeons and radiation oncologists do not recommend that a patient uses a tissue expander/implant as her reconstructive method. Why not? Well, in some cases, scar tissue will form in an area where radiation has occurred and it can cause complications with an implant. Also, radiation tends to damage skin and makes it lose some of its ability to stretch the way it needs to in order to accomodate the tissue expander.

But...some doctors will tell you that if you get fully expanded and then get radiation, it can alleviate some of the problems. Today, that's what my radiation oncologist suggested when I told her I was hoping to have the simplest method of reconstruction. So now I'm heading back to see the plastic surgeon I liked back in April...we'll see what he has to say. The other thing for me (and the plastic surgeon) to consider is whether or not I have enough sub-pectoral muscle to create the "pocket" for the tissue expander to go in. This is because my oncological surgeon had to remove some of it in order to get clear margins, that is, get all the cancer along with a little bit of healthy tissue.

If the tissue expander method will not work for me, then I have a few other options but they are all fairly involved. The other methods are called "flap" procedures. Sounds gross doesn't it? A "flap" is just that, a flap of skin, fat, tissue and sometimes muscle that is moved from one place on the body -- called a donor site -- and then transplanted to the chest area to form the new breast. Flaps can come from the patient's lower abdomen, her latissimus dorsi (upper lateral back) or the gluteal area. The best donor site varies from patient to patient and mostly that has to do with body type and weight.

A patient like myself who does not much extra flab in the abdomen area can pretty much cross off that area as a donor site. When skin, muscle, tissue and fat is used, this method is called the TRAM flap. When no muscle is taken but skin and tissue are, that method is called DIEP flap. Both also result in a tummy tuck for the patient, which I guess some women love.

The lat flap takes skin, muscle and tissue-- and has its own good and bad points but mostly I don't see it as a good choice for me...I have a one year old baby I want to pick up and hold and it doesn't seem like a good idea to lose muscle strength there. Also, it will create a 6-7" scar across my back. I already have two new scars this year...one from the c-section and one from the mastectomy. I'm not really interested in having a new scar in such a highly visible area. The one good point about the lat flap is that is seems to be pretty reliable as far as its success rate.

The gluteal flap, called a GAP or S-GAP takes skin and fat from the butt and moves it up to the chest to create a breast. That sounds pretty good to me because it also results in liposculpture to the butt. However, the recovery is long and the fail rate is high. That means that in as much as 20% of the time, it results in flap death. This is because the artery that feeds the tissue in the glute area is a much different size than the place it will be transplanted to on the chest area.

The DIEP and the GAP are only done by a handful of doctors, too. The procedures are quite complex and involve delicate microsurgery. It would be important to choose a doctor who did my technique of choice very often and had a good track record for success. In all likelihood, I would have to travel out of town to find a doctor who had that kind of resume. That would mean a big hassle with my insurance company to make them pay for it. I'll do it if I have to but I would much rather do something easier!

There! Now you're a specialist in the techniques of breast reconstruction.

Tuesday, December 14, 2004

Perspective

An important part of maintaining a good attitude during what has turned out to be a difficult year is perspective. It's been easy for me to do this because life has illustrated to me lots of times that I really don't have it too bad.

I remember going to the surgeon's office for my post-op visit back in early October...and I have to say, I hate going into any sort of medical office these days. It's an automatic stressor. Even when I know I'm not there to get test results or news of any kind, my blood pressure and pulse just shoot through the roof. No amount of breathing or attempts at self-consolation do any good. So anyway, my husband and I are in the surgeon's waiting room and in walks this woman and her little boy. She and her son sit right next to us and I see that this woman clearly has a more difficult time ahead of her than I do. I couldn't really tell what her medical issue was but she had recently had some sort of surgery on her face. There was a very obvious growth of some kind and I'll just assume it was a tumor since we were in an oncological surgeon's office. She had a long line of stitches running down the middle of her face, too. I thought to myself, wow, at least I can sort of disguise my cancer by wearing a wig and a prosthesis. There's no way for this woman to blend in and get her anonyminity back.

She was the picture of courage under fire. With pure grace, she did the simplest thing in the world that I will guess was not at all simple or easy for her. She sat down, smiled at me, cuddled her little boy onto her lap and proceeded to read him a story.

Even though her face was hard to look at, I made sure I met her eyes and looked right at her, even though my human instinct was to look away. Why? Well, I've noticed that when I go out in public with my baby and am only wearing a cap or a hat (and not a wig), people will either not look me directly in the eye or if they do, I get the sympathy look which I hate. The sympathy look is even worse than the look that says I wonder what's wrong with her?

Another rather recent event is one that I didn't experience directly but heard about through friends. There was a woman on my ovusoft.com forum who was pregnant through IVF. Evidently this was her miracle baby, she and her husband had tried a number of times to get pregnant with and without technology and they had finally succeeded. Her baby, a girl, was due to be born any day. Actually I think maybe her baby was overdue? Anyhow, as the story goes, the mother noticed that she could no longer feel her baby moving and so she called her ob/gyn's office in a panic. Upon arrival and exam, the doctor ascertained that her baby had died. Just like that. And here's the worse part...she was going to have to deliver her stillborn baby through labor. Frankly I can't imagine the emotional and physical pain of her ordeal. After the baby was delivered, an autopsy revealed that the mother had an undiagnosed clotting disorder which somehow effected the umbilical cord and that the baby's death could have easily been prevented with some medication and careful observation on the part of the doctor.

I'm no martyr, I'm not pleased with my situation. But like I said, it could be a lot worse for me. My baby is healthy. I seem to be handling treatment pretty well. To the best of my knowledge, my cancer has not spread and is still considered curable (not that a doctor would ever say those words out loud.). If I want, I can look "normal" so that I can avoid uncomfortable looks from strangers. I have met some absolutely amazing people during this year as I fight cancer.

Monday, December 13, 2004

Maggie

This weekend I'm driving to LA to see my friend Maggie. I'll be taking the baby with me, and Dan will get to have some sleep; blissful, uninterrupted sleep.

I haven't seen Maggie for a long time. I think the last time was when I was in the hospital after Jennifer's delivery, so we're coming up on one year. Alot has happened to the both of us since last we saw eachother. Maggie is pregnant (EDD 2/25/05) with twins: one boy, one girl. If anyone on this green planet deserves to be pregnant, it's Maggie. The road to this pregnancy hasn't been easy for her and her husband. They had many difficult decisions along the way and much sorrow.

Maggie is one of those people you meet and just sort of automatically feel comfortable around. She has a kind generous heart, a good sense of humor and a wonderful sense of loyalty for her friends and family. She has been there to listen to me 110% since my cancer diagnosis.


I met Maggie while I was trying to get pregnant back in 2002. I had purchased a book, Taking Charge of Your Fertility and there was a website associated with it, www.ovusoft.com/forum. I went online, joined a forum for those trying to conceive (ttc) and found myself posting daily. Along with Maggie, I met a bunch of other truly fabulous women, some who were trying to get pregnant, some who were pregnant, and some who were already moms.

Since being diagnosed with cancer, I've received phenomenal support from my Ovusoft gals. They have sent me emails, cards, gifts, flowers, food and more. You'd never believe that I had not met most of these women in person because they treat me like family. I've only met three of them in person so far, and will be meeting one more, Denise, this weekend while I'm in LA.

Jennifer and I have never spent the night away from home together so it'll be a little adventure for us. I don't know how she'll do sleeping in a new place but hopefully, as long as I'm there with her, she'll feel comfortable. We're bringing Maggie a bunch of baby gear that Jennifer doesn't need anymore. At first I thought maybe Dan and I should keep it all in case we have another baby in the future but that future is sort of a long way off, and if another baby comes, we'll deal with the idea of baby gear again then.

Sometimes I feel cheated because I lost most of Jennifer's time as a newborn dealing with cancer. It's those times when I think most about having another baby so I can savor that time and focus only on the baby and not on my health. But then I think about chasing around two really small children when I'm in my early 40s and it sounds exhausting.


Friday, December 10, 2004

Compassion for the Enemy

Thanks to guidance from a new friend at work, I've been reading up on and watching documentaries about the Yogis of Tibet. These are peaceful-minded men and women (yes, women, I didn't realize that there were Yogi women) who have devoted their lives to knowledge, spirituality and an intense desire to look within for answers to the larger human questions.

One of the things I noticed most was that the Yogis--all of them--talked about having compassion for your enemy. This is no small thing coming from them since their country has been in a reluctant and culturely devasting war with China for years.

It made me think about my own life and who my enemies are, and if I could find compassion for those enemies.

I'm happy to report that after some soul searching, I really feel that there are only two true enemies in my life. One is my husband's ex-wife. I don't like saying or even writing her name so I'll use one of her stage names...Bianca.

Bianca is my enemy for many reasons:

  • She is a thoughtless, meanhearted and dishonest person who regularly pushes the envelope for lying, cheating and stealing
  • She neglects her daughter, who is a precious, tender soul
  • She sought to destroy my husband emotionally and financially due to her incredibly strong vindictive streak
  • She still calls herself Mrs._____. What the hell is that about?
  • She has outright wished me dead and would gloat with cheerful abandon at my bout with cancer. Even her own daughter recognizes this nastiness in her mom and so has decided not to tell her of my illness.

Will a day come where I can feel compassion for this woman? A resounding NO. She is just too much of a monster and she continues to this day to hurt the people I love. However, I do feel sorry for her. She has wasted her life holding onto anger and hatred, and will never look inward to heal herself and move on. She will never take any responsibility for the destruction she created with her substance abuse, physical abuse and emotional turmoil. The one question I have most often when it comes to her is, why me and not her as the person with cancer?

The other enemy is not a person or even a creature...it's the ultimate intruder...cancer. Compassion for it? If I take a really wide stance on this one... maybe. Really, cancer cells are good cells gone wrong. If only they understood that their widespread reproduction was harming their "host", then maybe they would go back to being good cells. Or maybe they would agree to just die off and stop their evil ways. When I close my eyes at night, I think to myself, go to sleep cancer cells. Leave my body harmlessly. Do not make more of yourself.

Thursday, December 09, 2004

Christmas Already?

Here it is, almost Christmas already. This time last year I was hugely pregnant and thinking only of the giant job ahead of somehow swallowing my fear of child birth and delivering a healthy baby. The doctor said my baby was due around January 3, 2004 but I had this feeling she was going to come sooner. I was right. I went into labor on December 23 and delivered at 2:43 pm on December 24. Welcome to the world, Jennifer.

By the way, that ob/gyn I used? I've started calling him Dr. Assface now because he completely botched my cancer diagnosis. He was so arrogant about it too. Actually he was always arrogant when I asked him questions about the pregnancy. I showed him the lump in my breast when I was about 5 months pregnant. He told me it was a milk duct cyst and not to worry. I never even gave it a second thought but looking back I wonder, why the heck would I have milk in a duct when I'm only 5 months pregnant? You know that dumb expression about hindsight being 20/20. Well. there is it.

Well anyway, I was supposed to be writing about Christmas. As a kid of divorce, I came to despise Christmas. It wasn't fun, it was stressful and sad. One Christmas, as a freshman in high school, I got myself good and drunk at an outdoor keg party. I came home completely obliterated. My mom took me in the house and didn't know what to do with me. She called some neighbors who were active in AA and they told her to take me to the hospital. Let's just say it was a long night.

When I woke up the next morning from my drinking fiesta, my mom told me "you ruined Christmas!" In my mind, Christmas had already been ruined for years. By the way, I didn't even have a hangover. I could see that my mom had been hoping I'd wake up feeling really crappy. It makes me smile even now that she didn't get that to enjoy.

I hated Christmas for years after that. In fact, I don't think I came to like it until I got married. After that it became fun again. I'm not really into it the way some people get, but I do like the special holiday feeling that comes around this time of year.

I used to also hate having a birthday each year. I used to just dread it, even feel resentful of it. Another year older. Ugh. Since being diagnosed with cancer, I just want to be around! I don't care if that means I have to get older too. I want to be here for my husband, stepdaughter and baby daughter. Anytime I let myself think about my baby daughter growing up without me, it's an instant crying jag. There's no way to describe the power and resolution it takes to push away thoughts like that.

One more thing. I survived another chemo. I'm officially halfway done with this treatment regimen. Only 4 more infusions and I'm done. Then a 3 week break to give my body a rest and then 6 weeks of radiation. And then the cancer treatment is over unless something else comes up.

Once cancer treatment is over, I can start concentrating on the cosmetic part of the recovery. It's both scary and exciting. I don't exactly look forward to the idea of a couple of more surgeries but I am so looking forward to having a body I don't feel so weird about.

Over and out.

Saturday, December 04, 2004

Miles to go before I sleep

The woods are lovely, dark, and deep, But I have promises to keep, And miles to go before I sleep, And miles to go before I sleep.

I had an infusion on Wednesday December 1: Number 2, part one. I have number 2, part two on Wednesday December 8 and after that, I'll be halfway through my chemo.

Originally Dan was going to go with me, but our baby had a very high fever that day and so he ended up taking her to Children's Hospital to be seen, and then the two of them stayed home so the baby could rest. As always, Angela pulled through in a pinch and she was able to go along to infusion with me even though I couldn't give her much notice.

This chemo started like most of them do: blood work and then the pre-meds, then the chemo. We were sitting next to a woman (the patient) and her husband. The two of them were sitting silently watching tv as the woman got her infusion. They both looked really tense and scared, especially the woman. I recognized that look from when I was first starting the diagnostic process--it is pure, undiluted fear with no attempt to hide it.

Angela and I were sitting there chatting away but each of us would occasionally sneak a look at the woman patient next to us. Both of us wanted to talk to her--I think we both instinctively knew she needed to talk to a couple of cancer patient survivors who were doing ok. Finally I found a way to break the ice--this patient was receiving one of the same chemo drugs as me--cisplatin, and one of the nurses had just handed her a sample pack of the same antiemetic medicine I now use--Emend.

I asked her, does cisplatin make you sick? I had trouble with it the first time but the Emend worked and now its not so bad. She said in a quiet voice, yes, I was very sick the first time. It was awful. Angela introduced us and the woman replied that her name was Molly. Molly's husband told us Molly was being treated with neo-adjuvant chemo for her cervical cancer. Evidently Molly had a large tumor that her oncologist was hoping to shrink with chemo prior to surgery. Molly and her husband were soft spoken and seemed shy, but there was something about the way Molly looked at Angela and I that made us want to try to keep the conversation going. Angela told Molly that the two of us both had breast cancer and that she (Angela) had recently completed her treatment. I told Molly that I had also completed one kind of chemo regimen and was doing a second kind to try to wipe out any remaining cancer cells since my lymph nodes had not converted 100%. Then Angela and I both joked a little about only having peach fuzz for hair thanks to that chemo. Molly's eyes filled with tears and she asked, do you think I'll lose my hair? Molly is of Asian descent and had very long hair that was straight, thick and beautiful. I told her that I had read about cisplatin, and it didn't make hair fall out so she would probably be keeping hers unless there was another chemo drug in her regimen. There wasn't. She smiled for the first time, even though her eyes were still brimming with tears.

To an person who isn't a cancer patient, you might think that losing your hair is a small trade to be cured of cancer. While that's true, knowing that you'll lose your hair is what I'd describe as adding insult to injury. I've had lots of well-menaing people say "it's only hair and it will grow back." Yes, it's only hair. But it's just one more thing about the cancer patient's self-image that will need to be readjusted. After awhile that self-image list gets so long it becomes unmanageable. Allow me to illustrate:

  • I have one breast and it will be like that forever. I can get reconstruction but the breast is gone for good.
  • I had no hair for at least 6 months (now I have peachfuzz)
  • I gained a little weight during my first chemo regimen. With this second kind of chemo, I've lost weight and have a weird, bony rib cage.
  • I am in some weird state of menopause that may or may not revert
  • I have scars from surgery and there are more to come
  • I'm out of shape from lack of exercise
  • My romantic life is suffering because I'm tired and my body is out of sync

When Molly and her husband got up to leave, Angela stood up and gave her a big hug. I don't think Molly is usually the kind of person who would be comfortable hugging a stranger -- but I could see that she really needed the hug and she sort of leaned on Angela as they hugged, maybe drawing out a little of Angela's strength and borrowing it. I could hear Molly crying softly and I thought, I bet she's thinking "I'm so scared. I'm afraid I might die." At least that was what echoed in my head in the beginning part of treatment when I was having trouble getting an appointment scheduled promptly with a busy doctor, or when I saw other cancer patients.

After Molly and Angela finished their goodbyes, I took both of Molly's hands in mine and told her I thought she looked great (it was true--she really did). I told her she looked healthy, with beautiful hair and skin, and that when all of this was over, she was going to be ok. I don't really know if she's going to be ok but that was what I felt in my heart so I said it. And it's what she needs to believe, in order to get through the ordeal ahead of her.

Without hope we have nothing.

Thursday, December 02, 2004

Feeling Helpless

For the last couple of days, my baby Jennifer has been really sick. She spiked a fever of 104.7 on Wednesday morning but had no other outward signs of being sick: no cough, stomach problems, runny nose, nothing. It was very scary. Tylenol and Ibuprophen were not reducing her fever. She was getting worse. She would sleep but was in a very delirious state where she was sort of chattering to herself, waving, smiling, but clearly she was asleep and not awake.

My husband has a real mistrust of doctors. I don't know if this is because of my recent health problems where I was misdiagnosed for at least 7 months, or if this is something he always had trouble with. Dan decided he didn't like the pediatrician we'd been using for the last 8 months or so and he insisted we switch. I found one that sounded ok and switched to him but it was only active as of December 1 so this new guy hadn't ever seen our daughter before and he didn't have any of her medical records so it was not really a good time to have an emergency that he could help with.

Dan is not good in stressful situations that involve people he loves that need help in some way. He has no patience and loses his temper easily. We come from different places on how to get good results when we want people, particularly medical people, to help us quickly. He yells and is sort of a jerk...and I try to stay calm and elicit support. I feel that my way works much better and he thinks his way is the only way to get results.

Anyway, Dan decided to take the baby to Children's Hospital to get her checked out. They were there from about 9am - 1pm. She was seen by several doctors and finally they decided to take blood and urine samples. These samples revealed that Jennifer was fighting some sort of infection, so they gave her a shot of some strong antibiotics. By this morning, she seemed to be feeling much better. Her temperature is back to normal and she is bright eyed and alert.

Having a sick baby gives me such a feeling of helplessness. All I want is to know how to make her feel better and to give her comfort. Since she is pre-speech, she can't easily tell me what is wrong but she does a good job of letting me know she feels sick. The worst part about this is I know we have years of it...she is in daycare and is always exposed to lots of other little babies. One is always coughing, sneezing and with a runny nose. I am unable to breast feed my baby so I can't boost her immune system with breast milk. It's a real sore point with me, that part about having to give up our breast feeding. I didn't think I would love it as much as I did, and we were just getting good at it when I had to quit because of diagnostic cancer tests and then chemo.

I just love having a baby. I'm still up in the air about the possibility of having another. First, I don't know if I can have another. Chemo may have ruined that for me and it will be a while before I know whether it did or not. Cancer makes it so that I ought to wait at least two years before trying to get pregnant and by then I'll be 40 or 41. I would like Jennifer to have a sibling that is closer in age to her--she loves her big sister but Veronica is ten years older than Jennifer. And after all that about whether or not we can even physiologically have another, we will have to figure out if we can afford another. And what if my cancer returns after another baby is born? That might leave Dan with three children to raise all on his own. So many things to think about. The times of having a relatively simple life seem to be behind me now. I try not to look back and miss things the way they were because I can't change how things are. I'll just need to try harder to be grateful for the days in front of me and the fact that there are still decisions I can make because I"m here to make them.