Update 8/17/2014

IMG_8841My most recent round of chemo almost three weeks ago fell on my 45th birthday. I didn’t reschedule the appointment; I got up at 5 A.M. as planned and spent the day going to Sloan-Kettering getting my 7th Carboplatin and 14th Gemzar infusions. It seemed a fitting way to spend the day, doing what I can to see as many more birthdays as possible.

Thank you to those who donated to my fund for research on metastatic breast cancer at Sloan-Kettering in honor of my birthday, I so greatly appreciate it.

My blood counts finally are having trouble rebounding between the constant hits. The blood draw that they do to check my counts before chemo showed that my white count and ANC were the lowest we’ve seen this year (this means the patient is dangerously susceptible to infection). Chemo is sometimes postponed under these conditions but we opted to proceed. Twenty-four hours after chemo I received a shot of Neulasta to spur my bone marrow to make more white cells.

This type of injection often causes intense bone pain for days afterward. A three day regimen of over-the-counter Claritin (night before injection, night of injection, and one more the night after) seems to help many people with this pain. I did the Claritin and did well after (though I tolerated them well when I had them 7 years ago). If you suffer from terrible bone pain after Neulasta shots it might be something to ask your oncologist about. I learned about it from the nurses on my team.

My red blood cell count also took a hit the following week after chemo. I needed to get another blood transfusion. I’ll need Neulasta and blood transfusions more frequently now as the cumulative toll of this chemotherapy is taking effect. Muscle pain increased significantly this cycle as well. For days I was unable to bend over to even pick something off the floor. I couldn’t walk more than a few steps or leave the house. I’ll be meeting with my palliative care doctor on Tuesday to try to get some ideas on the best things to do for this new development. I’ll take this opportunity to remind you that palliative care does not equal hospice care. It is NOT for end of life care only. Palliative care is supportive care. The specialists help with all side effects at any stage of diagnosis/treatment.

Every day brings something new. It’s definitely getting more challenging in some of these ways but the good days are so grand to have.

School is going to start in another week and on the good days I am busy taking the kids to buy all of the things they need to start the year. It’s nice to be able to do some of these traditional August things with them. I treasure the most mundane activities of buying a new baseball glove, picking up school supplies, getting the back-to-school haircuts.

On Tuesday I will be back again for cycle 8 of Carbo/Gemzar; there won’t be a family summer trip. It’s been tough to see all of the photos online of everyone’s trips and summer fun and adventures. Cancer is a thief, stealing the carefree week my family and I should have had.

I always think these medical updates must be rather boring to read, I confess I hesitate to write them. I will probably start sharing more frequent quick updates on my blog Facebook page for those who are interested.

I’ll leave you with a few photos that make me smile. One is a new one with my beloved medical oncologist, Dr. Chau Dang (on my birthday). I couldn’t do this without her leading the team that treats me. The next one is part of my front garden in bloom last week. One is of our corgi, Lucy, who keeps me company on these housebound days.

IMG_8768

IMG_8814

IMG_8751

 

 

 

 

 

 

And something I wrote a while ago that I read almost every morning:

Make the most of this day. Whatever that means to you, whatever you can do. No matter how small it seems to you. Don’t waste it.

 

I hope you all have a good week and I hope to have a post about resilience coming soon…

Curtain falling

IMG_8773They were already seated when we arrived, a sea of white sitting cramped.

Mostly couples, though some were in girl groups.

They didn’t rise when we needed to pass by.

Clearly that effort would be too much.

I know how that feels.

 

Almost all wore glasses, most eventually pulled out bags of snacks or sucking candies.

No one texted or emailed or checked the time on a phone.

They all had small watches on their wrists for that.

 

In front of me a man had a bandage on the top of his head, white gauze perched amidst his silver hair, a good head of it.

I decided a funny looking mole, irregular in shape, had lain there recently; his wife pressed him to go see the dermatologist to have it checked.

The two looked out for each other, you see, having been together so long.

 

The air was still and thick and choked me as the minutes wore on.

I could see the veins protruding on the back of their hands, the wrinkles, the hunched shoulders.

We were the youngest there.

And while I felt more like them in many ways, closer to the end than to the beginning, I realize I am an outsider in every group.

 

There are few like me.

 

My hair won’t get that white, you see,

My hands won’t be rewarded with that saggy skin.

I won’t be privileged enough to see him go bald.

It will always be “in sickness” now.

 

The lights finally went down and I tried to forget.

But my body and mind do not ever let me.

 

How jealous I was of those elderly people crowded into a movie theater on an August Sunday afternoon.

Summer camp and update 7/9/2014

IMG_8583Now that all three of our children are at sleep away camp I get asked a lot “what I’m doing with all of my free time” and “what fun things I have planned.” Clearly what people think life is like for me are a bit skewed. I have nothing planned. I can’t travel and haven’t been able to take a trip for over a year. I’ve missed family celebrations, holidays, and get-togethers. I’ve eschewed visits from family and friends because I’m not well enough. What others consider “free time” is recovery from chemotherapy and struggling to do day-to-day functioning including the many medical appointments. Being able to make it out for a coffee date is a thrill and isn’t possible many days. Most of the rest of the time my “free time” is spent in bed fighting nausea or fatigue or pain or other side effects.

For the last few weeks my blood counts were sliding and I couldn’t do anything without huffing and puffing in a much more severe way than usual. I struggled to bend over to pick something off the floor without needing to sit down to catch my breath. My hemoglobin levels had been hovering around 8.2 for months and I pushed through but they dropped to 7.2 and by then it seemed I needed a boost to be functional. Ten days ago I received two units of red cells in a transfusion that because of some problems with the samples and testing and a five hour infusion ended up being a ten hour marathon day. It was so worth it. Red counts came up within days and I felt better starting about 24 hours after receiving the cells and that continued to increase within two to three days. My platelets were also very low at 24 but regenerated on their own (low platelets are a predictable result of this chemo regimen) and I was able to avoid a transfusion of those. This was, by the way, the first time I had ever had a blood transfusion in my life.

I had chemo yesterday: Carboplatin and Gemzar cycle #6 (that means I’ve had 6 infusions of Carboplatin and 11 of Gemzar so far). Starting now, but especially with cycle 7 and every time after that, there is a risk (reported at 27% for round 7, here is an article for anyone interested) of an anaphylactic reaction to the Carboplatin (and the other platinum-based chemotherapies like it). We are being conservative and premedicating with drugs that will hopefully help blunt or avoid this type of reaction altogether. There isn’t any reliable way to predict if it will happen to any individual patient. I did have a reaction to Taxol when I received it in the metastatic setting (after not having a reaction the first time I had 4 cycles of it seven years ago) but that is not a reliable indicator of a reaction to platinum-baed drugs.

It will be time for a scan soon I think, we are watching my tumor markers which have dropped consistently in the last few months which is fantastic but on yesterday’s test just stabilized without a drop. We’ll have to see if this is just stabilization (fine) or if this is the start of the chemo losing its effect. It is unsettling to think about losing another chemo combination that has been working, even though it’s a tough regimen to tolerate.

My voice has returned to almost normal unless I use it on the phone or talk a lot. With the kids gone I really am not talking much. I had an extra five days off chemo because my oncologist was on vacation and that allowed me to get things done I usually don’t have enough rebound time to do. The transfusion timing helped too.

IMG_8515I haven’t been outside much, the humidity and heat have been too oppressive for me, but I am hopeful it will break soon. I do try to make it to the beach once a week to get a change of scenery.

We will get to see the kids this weekend and I can’t wait to hug them and hear all of their stories before they go back. They love camp, always have. They look forward to it year-round and now that they all go it’s great they can share these stories and experiences (they are 15, 12, and 8. Last year the youngest begged to go for a week to try it out. We said yes, knowing his siblings would be there and he would have a blast. Five days in he called in tears, begging to stay. That repeated every week until after a month we said it was time to come home!).

Some may wonder why, at this time, I let them go instead of keeping them home with me. I do it because it’s not about me. It’s about them. It’s something they love. It’s an important routine, tradition (this is the sixth year for the oldest). In my eyes, it’s important that they have a change of scenery, freedom to be kids, get away from the ways my cancer and its chronic treatment limit what I can do, and therefore what they can do. It’s a gift I can give them and I also feel it reassures them that I am doing better than I was a few months ago. This is important.

IMG_8614I love having them away from electronics, away from wondering if asking me to take them somewhere or do something with them will be “too much” or “bothering me” which I know the older ones are always concerned with. I want them to be with friends old and new, having fun with young and energetic counselors, trying new things. There are so many (most/all) physical activities  I cannot do with them that they can do there. So many new games to play, achievements, laughs, experiences. I never hesitated when they were ready to sign up last October for this summer. I knew that no matter what, they needed and deserved it. On the left is my favorite photo from camp so far: Tristan getting hooked in to try rock wall climbing for the first time. It makes me laugh every time I look at that facial expression!

That doesn’t mean it’s easy for us to be apart. We are very close. Especially the older kids worry about me I am sure. But I stay in touch by email, will see them on visiting days, and I send them weekly care packages.

But the truth is that separation is good. It’s a selfless act for me to teach them how to to be without me. One of the most important things, in my mind. Coddling them and making them stay home is not what I feel is best for them right now. It is part of our job as parents to teach our children how to be independent, how to solve problems on their own, how to go off in the world without us for whatever reason. I will always want more time with them. It will never be enough for me. But this is my old age. I must teach them as many lessons as I can, while I can, for as long as I can. And that is true for everyone, but of course I have not only the urgency to do it NOW but also I have no idea how long I have and will likely be debilitated in some form until that time comes.

Yes, it’s true no one knows how long they have to live. But those diagnosed with a terminal disease know what is most likely to kill them. And that their time is not just going to be shortened, but consumed daily with the treatment and effects of that disease. It’s not having a normal, healthy life that is relatively good and healthy until a sudden accident happens. It’s just not the same as the general worries of growing older or aches and pains. It’s never-ending. I don’t get to count down how many chemotherapy (or other treatment) sessions until I’m done this time. Being done will mean there is nothing left for me to try. Anyone who has had chemo or radiation or some other type of therapy knows how important it is to have an endpoint, a countdown. Knowing that will never happen (and in fact what you’re really hoping for is a lot of them, because that means you still have options) is one of the mental struggles each week, since it isn’t just spending one day a week getting chemo, it’s how it makes you feel each day after that.

My hair is growing slowly back on this current combo. I know many people mistakenly think this means I’m “better.” I do like that soon I won’t be covering my head and that means I can be more invisible in public. But I also know how many comments I get on the occasions I have done it that people think I am done with chemo or all better. Not all chemotherapies cause hair to come out. My hair will come and go numerous times by the time we are done with this. Its presence or absence only indicates something about which chemo I’m on, not its success or failure.

Someone on Twitter asked for my piece on what to say and how to be a friend to someone who has cancer/serious illness. Here is a link for anyone that missed it and is interested (it’s too long to include the text in this post).

Also, I am including two posts from last year at this time. One on the eve of the kids’ departure for camp and one written while they were away. Of course I was doing even better than I am now, my thoughts were similar, but not as urgent, strong, painful as they have been the last seven months.

I’ll post again with an update if there is anything to report on change in treatment, scan results, etc. For now we stay the course which is not easy, but is the best possible choice of the options I have right now. And that’s the best I can do.

I appreciate the support, as always!

…………………………………………….

In these last remaining hours (Camp) original post here

In these last remaining hours
Before my children disappear

One,
Two,
Three…

In these last remaining hours before they go and spread their wings again,
Leave this nest,
I miss them already.

I put the dinner pots and pans away.
Wipe the crumbs from the table,
Load the dishwasher,
Play fetch with the dog.

I sit in the garden,
Listen to the wind in the trees,
The birds settling down before nightfall,
As we settle, too.

I tuck them in one last time,
Hear their doors click shut.

One,
Two,
Three.

Tomorrow night there will be no mess to clean,
No yelling upstairs that the TV has been left on again,
No trunks piled high with carefully labeled belongings in the dining room.

I will cry, I know.
Not because I am sad that they are going– no, that gives me great joy.
Children being children.
Forgetting stress at home and doing new and varied things.
I cheer their independence.

I will cry because I know they will always need me somehow and I just wish I could be there for them to outgrow
by choice,
by time,
by age.

I hear the mother bird in the tree calling out.
I don’t know to whom.
I will be like that tomorrow,
calling out,
with no child to hear.

……………………………………………………….

Like dollhouse rooms left abandoned (original post here)

Like dollhouse rooms left abandoned,
The rooms stay tidy:
Beds made tight,
Pillows square,
Hampers empty.

It’s been one week since the children left for camp.
Littlest Tristan was due back yesterday but a few days ago he said he was having so much fun he wanted to stay another week.

I realized this week that after being sick for the previous two that I needed this time to catch up, to rest, to regroup.

I miss them but am so glad they are having fun doing what they love.

I pack up care packages,
write letters,
wake in the middle of the night and mentally picture our children sleeping in cabin beds.

Our dog Lucy follows me, sleeps in my room now, not Paige’s.
She doesn’t want to be alone and stays within feet of me every moment.

I tell her it’s okay:
The kids will come back.
The rooms will get messy again.
There will be crumbs dropped at the dinner table and car rides galore.

Paige and Colin and Tristan will come back tired and dirty and happy.
They will come back.
They will.

That is the key.

I think of absence like a hole:
How different it is when it’s temporary and filled with happiness,
Rather than when that hole is a pit of grief. Of ache. Of loss.
The way it will someday be for them.

 

Update 6/12/2014

IMG_8412You have all been so patient with me, understanding why I haven’t been able to update as often as I was doing previously. I’m hoping my report will be worth the wait.

Let’s cut to the chase with some good news: there is no doubt about it, I am on my 5th cycle of Carboplatin and Gemzar and these chemo agents are effectively reducing the overall amount of cancer in my body (my recent previous chemos were not).

So, the cautionary notes are that the chemo will eventually fail; the cancer will either become resistant or I will lose tolerance for it because of side effects or hypersensitivity as the doses go on and the cumulative totals of the drug I’ve been exposed to rise over time. This is a problem that happens with only some chemo drugs; Carboplatin happens to be one. As you may remember, I am trying to ride carbo’s work as long as I can, it’s not for a finite number of sessions. With metastatic breast cancer you must be on some form of chemo/targeted therapy for the rest of your life if you choose to treat it. So this isn’t a permanent fix.

Additionally, I am right on the cusp (my next cycle) of when I will be most at risk for reactions to the Carboplatin. The other drug, Gemzar, is easier to tolerate in general and doesn’t have this same hypersensitivity issue. Of course we don’t know for sure which chemo is doing the bulk of the work here. Ideally we keep them both.

My tumor markers have all consistently been dropping for last 6 weeks and in my particular case, these markers have always been closely correlated with what scans and clinical signs show (many with breast cancer do not have this correlation, you must know your own case; this is one reason why these blood tests cannot be used as tools to screen for breast cancer or metastases reliably).

What does it mean that my markers are dropping? The numbers are going down significantly, indicating that the chemo is working, something I anticipated because I have been feeling much better in last month. “Better” is relative of course. What is “good” or even “great” for me might be someone healthy saying it was one of their worst days I bet! But what is important is that it’s moving in the right direction. My issues now are more chemo-related (fatigue, weakness, blood counts, infections, shortness of breath, etc.) than cancer-related.

My voice has improved! There is no doubt. I am still raspy and if I talk for a while or have to strain to use it, it deteriorates rapidly. But it is such a change. I can swallow more easily which makes getting needed fluid and swallowing pills easier. I no longer need to go for added IV hydration, I am able now to do it in conjunction with chemo.

IMG_8414I can get out more for limited times on certain days. Some days this is impossible because of chemo. And I institute a “no hugging” policy for friends during times I know I’m especially susceptible to infection. I’ve made it to the beach a few times, to more special events for the kids, and for the first time this week could stand long enough to fold some laundry. I am still very weak and incapacitated on many days. But now my “off week” from chemo is better.

Just because people see me in public they shouldn’t assume that I’m “back to normal” or “feeling great.” It is hard to explain that it might have taken me all day to get the energy up to do that one errand or have that one coffee date with a friend, that I’ll need a nap and to rest for the rest of the day after doing it. They might not understand that I was in bed for days leading up to it or will get chemo the next day and not be well for a while. I still have metastatic breast cancer throughout my body, and it takes a hefty toll. Hopefully explaining some of these details can help people to understand a bit what daily life is like for me.

I’m enjoying my garden in bloom and have been taking photos and posting this month on Twitter/Instagram. I’ll be using them with my posts all summer. Every one is taken by me of something in my yard. Today’s are of my beloved Japanese peony, a single petal peony I planted from barefoot years ago. This year it only had three flowers but they were so gorgeous. It’s hard to believe the closeup is of a flower! I think it looks like a sea anemone (some have said it looks like french fries).

So, the takeaway: I’m moving in the right direction for now, for what my particular case of metastatic breast cancer is. Despite many headlines about advances in breast cancer treatments lately, there was NOTHING relevant to me coming out of the big national ASCO conference last month and a good source tells me there really won’t be anything coming out of the San Antonio breast conference for me, either (the few relevant trials just haven’t been going on long enough to have any preliminary results yet). I’m keeping on top of new trials, as is my team, and if there is something that comes up that looks good, we’ll be investigating. For now, for as long as I can, I stay the course on this chemo regimen whether it’s for one month more or eight.

I will try to write more often. I know it’s a bit concerning when long times go by and someone with a serious illness doesn’t post. That only goes to show you how utterly rotten I have felt for a very long time. It has taken seven months (seven months!) to get to this point. I don’t take that for granted. Some with my diagnosis are dead within that time.

It’s so nice to be able to report some good news. It sure does feel like an awfully long time since I’ve been able to do that.

Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.

Update 4/27/2014

IMG_8374It’s been a long time since my last update. The weeks have been very tough and I haven’t had the energy to do much of anything, much less update the blog. I have switched chemotherapy agents to Carboplatin and Gemzar. These are given in a bit of an unusual schedule: both drugs the first week, just Gemzar the second week, and then a week off to allow blood counts to rise back to (hopefully) normal levels. I will be starting my third cycle this week.

I’ve had tremendous fatigue and the palliative team is trying some medication to hopefully help with this. There still may be effects from radiation weakening me (fatigue from high doses of radiation like I received to my spine and pelvis can last up to six months they say) and of course when certain blood counts drop it makes you feel just tired and rotten. I fervently hope that the medication will help and I will be gaining some strength and energy soon. It’s been such a long few months. Good news is that radiation did such a great job on the two areas that I’ve been able to completely wean off of pain medication. The pain I have from the current tumors throughout my body does not require medication right now. I know that will change as those tumors grow, but the gradual weaning process I have been doing for the past 3 months has been a huge success and I’m so glad to see the vertigo and other side effects from the pain meds disappear.

On the flip side, while the pain component has been a success, the last few weeks have been fraught with some unexpected problems. For the last month I’ve been seeing specialists and having tests to figure out why my voice has completely deteriorated and I also developed a varying left eye droop and lack of dilation in the left eye.

After a brain MRI to rule out a brain metastasis the doctors have determined that it is actually a malignant lesion in my left chest causing Horner’s Syndrome in my eye. The lesion is also pressing on the nerve cluster that controls my left vocal chord. It’s not totally paralyzed yet, but they say that it is on its way. My voice is almost completely unusable in any situation with noise (ordering in a restaurant is impossible, being heard on the phone is difficult, etc.). I can get out a strong whisper to a quiet raspy voice for about ten to twenty minutes in the morning sometimes but communication outside the quiet house or after twenty minutes is very, very hard.

I already do know there are things like voice magnifiers or computer generated voices. I know they are out there but I am not ready to use them. The damage will almost certainly be permanent they tell me. Swallowing will become more difficult and dangerous as the chord deteriorates. There is an injection they can do to stiffen the chord but at this point they are not ready to do that because I won’t get any additional improvement over where I am now.

The lack of voice limits further the amount of social contact I can have these days and the energy it takes to communicate is magnified because breath control is reduced so much. I will go back in three months and we will re-evaluate. Even my voice isn’t off limits to cancer it seems. I really just feel a period of stability would be so welcomed.

The rest of my family went to Florida for Spring Break two weeks ago while I had my tough week of chemo and some appointments with specialists. I was so glad they could go get some sunshine and  respite from the stress that I know my situation brings. It is so important to me to try to always look at things from their point of view and know what this situation asks from them. I wish I could be a better wife and mother right now, but wishes don’t count for much I know. It was hard to miss yet another family trip, there have been a few this year.

I try to get out once a day but I tire easily and usually am not able to get out on chemo weeks (more than 2/3 of days). Walking and standing are still my challenges. I continue to be very isolated. My daily life of exhaustion, immunosuppression, chemotherapy, and treatment effects keep me chained to cancer, much as I hate to be.  I try to be as independent as I can, not ask for help often, and keep my thoughts to myself about what is happening and what is yet to come.

For now, I keep plugging away, hoping the new chemo is continuing to work and doing the best I can even when things seem stacked against me. My medical team continues to be warm, caring, and helpful and I am so grateful to them and to you.

Things are very hard right now. It takes all of the strength I have to get through each day doing things I otherwise would be giving little thought to. I miss that part, the carefree, energetic part of me I had.

For now, I just keep going, doing my best. It just is going to have to be good enough. Spring has been lagging, the garden isn’t flowering as it usually is. The days have been chilly and nights sometimes still have freeze warnings. Let’s hope by my next update the flowers and I are both blooming a bit more.