Ken, Oliver and I will be taking a staycation for the rest of the summer. While I can’t quit social media cold turkey, I will be taking a break from blogging until we get back…unless something incredibly dramatic happens, of course. Enjoy the last days of summer! I know we will.
Here are some older posts to look back on in the meantime.
Oliver is at that incredible age where he wants to know everything. EVERYTHING! “Mommy, where does water come from?” “Daddy, what does ‘ummmm’ mean?” “Mommy, where do almonds come from?” “Mommy, do you have a big belly?”
Now, before you assume that Oliver is one cognitive leap away from, “your mama’s so fat” jokes, rest assured, he’s not commenting on the shape of my body. He is not judging my jean size or my belly size. A few weeks ago after tumbling class, we bumped into one of the little girls and her mother that were in the class at the splash pad. The mother was very, very pregnant (I say “was” because there’s no way in the world that baby is still inside her now…congratulations!) and Oliver went up to her and pointed and asked, “she has a big belly?” We answered honestly, letting him know that there was a baby in there. Of course, he wanted to see it and we had to explain to him that the baby was in her body and we couldn’t see the baby until it was born.
“Mommy, am I born?”
“Yes, baby, you are born. You have been born for 2 1/2 years.”
“Mommy, I’m not born yet?”
“Yes, you are born. You are not in my belly anymore. You came out of my belly a long time ago.”
“Mommy, I’m not tiny?”
“No, you’re a big boy now.”
“Mommy, I am born?”
And the conversation goes on repeat for a while. There’s something poetic about the way he asks these questions. Something innocent and pure. I love talking to him about it even though I know his little brain can’t comprehend how this all happens, how he got on this earth and how I grew him in my body and now he is out. But I try.
This morning, I was talking to him about our neighbor who is pregnant with her second child. Her son is one of Oliver’s best friends. Oliver is sick right now and can’t be around other children for a few days. He wanted to see his friend but I explained that we couldn’t get his friend sick or his mother sick because there is a baby in her belly. He lifted up my shirt, put his little finger in my belly button and asked, “Mommy, do you have a big belly?” He was asking if there was a baby in there.
“No. No, sweetheart. There’s no baby in there.” My voice was soft. I brushed his hair back with my hand. Kissed his head. “You don’t have a baby in your belly.” “No.” He left it at that, moving on to the next most interesting subject, granola.
There is going to come a time soon when he looks at a lot of his friends and he realizes that they have brothers and sisters. Not all of his friends will, of course, but many of them will and do. There’s going to be a day when he comes up to me and says, “Mommy, I want a sister.” Or, “Mommy, can you have another baby?” And I will have to explain to him why the answer is no.
I will have to explain that cancer took away our choice to grow our family and despite there being other ways to do just that, finances don’t really allow it. I will have to explain cancer. I will never tell him that one reason we will not grow our family is because the risk of trying could equate to suicide. I don’t want to get cancer again because I chose to stop medications or tempt fate with more estrogen pumping through my body.
I hope he will understand. Sometimes children want what they want and they can’t see past reason. I think it will break my heart if he is disappointed by not having a sibling.
I don’t claim to be in a unique situation. There are thousands, no, millions of people who can not grow their families for a variety of reasons that are beyond their control. Infertility, cancer or drug induced infertility, finances, career, space, etc… I am not special in that way.
But this does not take away from the fact that there is going to be a conversation that will happen sooner rather than later as to why other women can have babies in their belly and I can not. I will find a way to explain it to him. I always do. I just didn’t expect the questions to start so soon.
Before Oliver was born. While he was still in my belly.
As I’ve mentioned in the past, I have been dealing with axillary web syndrome (cording) and swelling, which is possibly lymphedema as a result of my breast cancer surgery and subsequent treatments (radiation, I’m looking at you here!). I have been in physical therapy for several months now to try to help. Unfortunately, there has been absolutely no relief with these side effects. They have persisted and even gotten worse.
The swelling has not gone down and, in one part of my arm has even gotten worse. The cords that I’ve had since the beginning are still there and won’t snap or dissolve. Bandaging doesn’t help, it makes it worse and has even spurred new cords to form. So does stretching, both by myself and manual (done by the therapist). New ones have formed as recently as last week, in my thumb, down my wrist and into my arm. This has been a source of extreme frustration for me and my physical therapist. We are literally at a loss for why this is happening. I am in some pain (I can still get on with my day) but the fact that this is getting worse again is scaring me. I don’t know why this is happening and no one can help!!!! Why does this happen? Why won’t it go away?
Last week, my physical therapist, who I love and has been working hard to try to figure out how to make these “moody” (her words) cords go away, told me that she feels like she has done all that she can do and that we should bring our meetings to a close. In light of the fact that things are getting worse, I was thrown for a loop. She was leaving me to fend for myself. I burst into tears. I couldn’t believe that we would be ending things when nothing had been resolved. She was giving up on me. She was giving up, period.
She said that she didn’t want to stop but she felt that she has done all that she knows how to do. I expressed my frustration at her decision. How can we stop now? What do I do next? I can’t do this alone!
At this point I was sobbing. I was scared. Scared for my future. Scared for the unknown of what life will look like without support for this problem. I’m not sure but I think she was tearing up too. It was not a great moment.
I think one of the things that struck me so deeply was that this is the first time in a full year of treatment that I’ve heard, “we’ve done everything we can do.” That is a frightening statement to hear when you are dealing with cancer or any serious illness. It’s scary when the experts decide to give up the fight when I still have fight left in me. Then it becomes a game of persuasion, pleading for just a little more time. A little more effort.
Hope is one of the only things we have when fighting cancer. Without it, it’s hard to get through each day, each treatment, each setback. And these can come in droves. I may be pretty freakin’ knocked down lately but I haven’t given up the fight, not by a long shot. I believe that there is a solution to this problem and we just haven’t figured it out yet.
Yesterday I met with my physical therapist again and she said that she emailed my doctor for guidance on what to do next. So as of right now, physical therapy isn’t ending for sure. But it might be. Either way, I decided to go to another hospital for a second opinion. I’m not sure that they’ll find anything new or try anything different. There’s just not a lot of information out there about cording. But I have to try. I have to! I have to be my own advocate. I have to keep pushing to make sure I have as happy and pain free a life as possible. Because I plan on living for a very, very long time. I don’t plan on ever, ever giving up.
AAN3PY 1950 1950s WOMAN SITTING IN FRONT OF FAN WIPING FOREHEAD VERY HOT
I thought I’ve done it all. Said yes to everything I could possibly agree to. That there was nothing left to do. I’d done my job and now I get to live a cancer free life. But no. It’s not that easy.
Three weeks ago, I met my new oncologist, Dr. Marlene Meyers at NYU. She’s wonderful, caring and open to listening to me and my needs. But, she suggested that, in addition to the Tamoxifen I’m taking, I also start on a regimen of Zoladex.
Zoladex, a form of hormone therapy is an ovarian suppressor. The drug stops the ovaries from producing estrogen or as some doctors call it, “medical ovarian shutdown”, and can be used by women with ER+ breast cancer who are pre-menopausal. It is given as a monthly injection. So, what is the difference between Tamoxifen, and aromatase inhibitor and and ovarian suppressor?
Tamoxifen is a type of hormone therapy known as a SERM (selective oestrogen receptor modulator) and its job is to block the effect that estrogen has on tissue receptors. Aromatase inhibitors reduces hormone levels but does not block estrogen from being produced by the ovaries. Because of this, aromatase inhibitors will only work on women who are post-menopausal or who have had ovaries removed. Zoladex literally shuts the ovaries down so that they are unable to produce estrogen. The only other way to prevent the ovaries from doing this would be to remove them altogether.
While Zoladex, in addition to Tamoxifen (according to my oncologist) prevents recurrence by only a few statistical points, she said that it did very well in trials for women age 35 and younger with ER+ and node negative tumors. While I do not “have to” take this drug, she is strongly recommending it.
I have done some basic research, and maybe I’m not finding the latest papers that have been released but, according to the results of the ZIPP trial, “although the effect of goserelin was smaller (and not statistically significant) among women who took tamoxifen, a difference in risk of 2-3 percentage points in absolute risk at 15 years might be important, given the high incidence of early breast cancer. This would correspond to treating 33-50 women with tamoxifen and goserelin to avoid one woman having a recurrence, new tumor, or death. Indeed, the number needed to treat at 15 years was 18 in women younger than 40 years who also took tamoxifen.”
As I think I have mentioned before, my aunt Vickie works in medical publishing so she has been asking around for second opinions for me. One has come back so far stating that she is in agreement with my oncologist and that Zoladex would be beneficial for me.
So here’s the thing. When I started on Tamoxifen, the side effects were pretty harsh: terrible night sweats (I’d wake up several times during the night completely soaked through. My side of the bed felt like an overactive heating pad), constant insomnia (I was a walking zombie, with the moodiness to match) and hot flashes, which I still suffer from on a daily basis. I am terrified by the side effects that will be accompanied by Zoladex. While they are not permanent, because the injection is given monthly, I would have to live with any negative effects for at least a month. This could mean more night sweats, more insomnia, more hot flashes, loss of sex drive (what sex drive?)…this doesn’t include the osteoporosis, bone pain and depression.
This all sounds awful and it might be (it also might not be that bad) but there is also the psychological issues that have come with receiving this information. I was once again thrown for a loop with information I was not expecting. I knew I was going to have to take Tamoxifen for 10 years but now I need to (should) be on yet something else? When does it end? When is enough, enough? When can I say, “I’ve done six months of chemotherapy, fifteen sessions of radiation, a year of herceptin and 10 years of Tamoxifen, changed my diet, got back into exercising…and that’s enough!!!!” I will never get to say that because there is always more. More. More. More!!! And I’m done! I don’t want to do anymore!!!
But…I swore on day one that I would do everything in my power to make sure that I beat this thing. What if I decided not to take the Zoladex and the cancer returns? Will I always wonder if I had just done one more thing, if that would have been the thing that saved me? Am I willing to do this, suffer all of the side effects to ensure I will be here to watch Oliver have his own children? Isn’t that the definition of a mother? To do anything and everything necessary, to sacrifice the self for her child?
These are the questions I’ve been battling lately. There is no right answer. There is no good answer. I just need to choose. Have I done enough? Can I do more?
Have you been offered a treatment that you weren’t sure you were going to take part in? What was the struggle for you?
There has been a lot written lately in the blogosphere about the relationship between cancer survivorship and gratitude. It seems that cancer is supposed to teach us some great lesson about life. It is supposed to make us better people. We are expected to create bucket lists and begin fulfilling them. The roses should be smelling sweeter. The summer breeze should be more refreshing.
There are many people who survive cancer or live with cancer for the long term due to metastasis who begin having this new perspective on life after or during the cancer experience. Then there are those, like me, who have not changed for the better, at least in the way that is expected of us.
Last Monday it was about 90 degrees here in NYC. An old college friend who is starting a photography business asked if she could take my headshot for her portfolio. I was excited for the chance to have professional pictures taken of me so I could start seeing the new beauty that others have been saying they see in me but haven’t been seeing in myself. We decided to meet at Grand Army Plaza in Prospect Park here in Brooklyn. There isn’t really any direct public transportation to that spot from my house but it’s only about 2.5 miles away so I decided to take my bicycle.
I love riding my bicycle and I got a pretty new one last year right before my cancer diagnosis. This was the perfect bike for me. It was lightweight and a size XS so I could touch the ground and hop on without tipping over like I do with some other bikes. The plan was to begin riding everywhere to save on gas money and for physical fitness. So despite the heat, in my cute little dress and with a full face of makeup, I mounted my bike and headed for the park.
My ride was perfect. I was in the shade the whole time and I felt good I was slowly made my way though the park. I parked my bicycle at one of the many bike racks provided by the park and spent the next hour and a half taking pictures throughout the neighborhood. But when I came back, my bicycle was gone. My beloved bike had been stolen.
At first I thought it was my chemo brain. Maybe I had parked it in another spot and didn’t remember. I went to the other bike racks in the area and my bike wasn’t there. I went back to the spot where I knew I left it and someone else was taking their bike out of the spot where I was sure I had put it. “Did you see a bike here or someone taking one out?” He hadn’t and said he parked his bike there because it was empty.
Gone. Disappeared. Vanished.
I called the police, sat on the grass and waited for an hour for them to show up. In that time, I threw myself a pity party. I thought to myself, “First I get cancer! Then I go through surgery, chemo, radiation and lymphedema. And now I get my bike stolen? What the fuck? When do I catch a fucking break?” And I cried. A lot.
After the police came and I filed a police report and was told I wouldn’t get my bike back even on the off chance they found my it because I never registered it (I’m supposed to register my bike?), I caught a bus to meet up with some local moms in my area who had just formed a cancer group. I had been looking forward to meeting them so I didn’t let my bad experience take my plans away.
We met at a lovely restaurant with a backyard. We were all talking and I don’t remember how we got on the subject but one of the women started talking about how cancer had changed her. She no longer lets the little things in life get her down. “If my air conditioner breaks down, who cares? I’ve been through worse.” (I’m paraphrasing here. These were not her exact words.) Others started to agree saying that the small inconveniences or setbacks didn’t get them down. But that’s not the case for me. I said, “I just had my bike stolen and I’m really upset about it. I know I’ve been through worse but cancer hasn’t changed my reaction to things. In fact, it’s made it worse.” They seemed genuinely sad for my circumstances. I was not judged for my point of view but I felt ashamed that I was freaking out about a bicycle, a replaceable item when I have experienced much, much worse.
But here’s the thing. I do sweat the small stuff. I always have. Cancer hasn’t changed that. I actually feel that the details in life now have more weight. If something small but wonderful happens to me, like someone saying hi to me on the street for no reason, it makes my day. But if something doesn’t go my way, like I miss the train or my bike gets stolen, it can be devastating. I think the joys and pain of life are not necessarily in the grandiose, life changing moments but rather, in the details. Like the smile of your loved one on your wedding day that only you noticed. The restaurant that closed five minutes before you got there on your last day of vacation, and you’ll never be back there again. The perfect breeze as you sit in the park and read a book.
I think that people expect that those who have cancer should be changed. That we should reach this state of enlightenment where we are so grateful to be alive that nothing gets us down. For some people this happens. And that’s great! It really is. I hope to learn from these people and gain some perspective when life gets me down.
But maybe my way of thinking isn’t so bad either. In fact, I think those like me should be celebrated equally as our “glass half full” counterparts. So, hurrah for crying over spilled milk, because it costs more than $3 per gallon and you just paid two co-payments this week and refilled your drugs and money is tight! Cheers, for pouting because your husband threw out the Ikea catalogue before you got to read it on the couch with a bag of cookies like you were so looking forward to! Hurray, for crying in the park because my beautiful, beloved bicycle got stolen and I felt victimized and it’s wrong and it sucks!!!!
Because life is about the little moments. The details. The small stuff. At least it is for me.
P.S. There is a happy end to this story. To be continued…
My Little Bs Have the Big C 