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Archive for November, 2009

First I did chemo, that is pretty standard with ibc. I was on Taxol with Avastin as well as Zometa on a four week schedule.

  • Week 1 – all three
  • Week 2 – Taxol only
  • Week 3 – Taxol and Avastin
  • Week 4 – off

This was a schedule proposed by the oncologist I saw at IU in late May, she actually did the clinical trials of Taxol with Avastin. She explained that since the cancer had spread a mastectomy would be up to me but probably wouldn’t be necessary unless I wanted to. The idea behind having surgery is to keep it from spreading and it had already done that.  She also explained that their goal as doctors when you are stage IV, is to keep you alive as long as possible, as comfortably as possible – no timelines. Which is good because the only statistic that matters to me is mine.

I had scans at the end of June that were really good, everything had responded and was smaller! YEAH!

Continued treatment – had lost my hair by the beginning of June, my Mom had gotten me two really great wigs and lots of hats, my sister contributed to the hats as well. I had lost some weight but was holding steady at about 130.

In August I started developing some neuropathy, numbness and tingling in my toes mostly but a little in my fingers and by mid September had also developed skin sensitivity on the front of my shins and thighs and on my lower back. Mostly just sensation, not pain really. For example if my son wanted to sit on my lap I could pick him up and set him on my lap and take a deep breath or two and it would be gone but if he was fidgety or tried to climb up then it was more bothersome. Laying down in bed at night and rolling over or when I crouched down while wearing long pants and they tightened over my thighs are the other times I really noticed it.

I also started developing problems with my fingernails in September. That was more difficult than the hair thing for me. They can loosen in their nail beds due to the chemo and my middle, ring and pinky fingers on both hands as well as the toenails on my big toes were effected too. I ended up not losing any of them but it was close and I did get infections under two nails.

Despite that being tougher for me my mantra is… I can do whatever I need to do to stay with my babies. I’ll be bald and without fingernails forever if I stay with my kids.

End of September – next set of scans… LUNG – declared clear, LYMPH nodes – almost resolved themselves, BONE – stable to mildly improved, LIVER – additional mild response, BREAST – additional mild response. Not near as dramatic as the results in June but still, everything improving, not getting worse. Time to look at changes to treatment, we had “Maximum response for the amount of toxicity” I was getting.

Stopped Avastin September 30th, stopped Taxol October 16th, still go once a month approximately for the Zometa.

Had ovaries and fallopian tubes removed (oophorectomy) November 5th, laproscopic and am doing great. Next is a mastectomy. It turns out there have been some studies that show longer survival times and lower recurrance rates when you remove the original source of the cancer. Have had the BRCA testing done and am positive for BRCA 2. Sort of stinks but it is info I can do something with. Right now I am scheduled to have the mastectomy on December 8th but there is a snafu with my insurance and I may have to wait until the beginning of 2010. We’ll see but for now, I am on an estrogen inhibitor (the cancer in my body is positive for estrogen which is why we removed my ovaries – take out the estrogen factories) that I take once a day. My nails are recovering, I’m getting some hair back (eyelashes and eyebrows will be welcomed back!), the neuropathy is subsiding and I’m getting back some energy.

That has you pretty well up to date on what the long version of the story is. I’m sure other bits and pieces will be discussed as we move forward but there is the bulk of it.

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Monday and my mom’s friend has said she’ll see me that day. I go pick up my husband and off we go. News is still – inflammatory sucks – aggressive and nasty and will start with chemo on Thursday regardless of what the scans say. She keeps the scans that are scheduled and adds a port placement and MUGA scan. Dr. Bhd and her nurse Deanna are really good to me, they give me lots of information including a really good list of places to get hair prosthesis (wigs). I leave still scared to death but feeling a little better because I feel like we are starting to fight it.

So my week is shaping up as…

  • Monday – meet oncologist
  • Tuesday- CT scan and bone scan
  • Wednesday – port placement for easier admin of chemo and other drugs
  • Thursday – start chemo
  • Friday  – MUGA scan (Heart because chemo can be tough on your heart)

So we realize the family is going to be around a lot and there is going to be a lot happening so it is time to tell my daughter. She is 6 1/2. So not fair that she should have to hear this. We sit her down on Monday night and tell her, at least the basics, Mommy has breast cancer, she’s going to take strong medicine that will make her lose her hair and will probably have surgery at some point to take off the breast that is sick. I take her to school the next day and fill in her teacher, the principal and the school counselor. I had also heard that her teacher was going to move to the next grade with them so I asked them to keep her with the same teacher (and I am so grateful they did).

It was my daughter’s sharing day that day so she tells her class that her Mommy has cancer, she is going to have her breast cut off and lose her hair. Not how I would have phrased it but she is reasonably accurate.  She understood what we told her. So I get a call from the guidance counselor giving me a heads up about this which is fairly entertaining now but I was pretty concerned at the time. So the word is about to spread…

Have scans, praying the entire time. Have port placement, not too bad and while it was twilight sedation I’d bet I fell asleep given that I hadn’t really slept in days at that point. Go for chemo and to get scan results. They aren’t what we want. The bone scan shows mets to my right hip, two on my spine, one on my right shoulder and one on my skull. The CT shows mets to my right lung and my liver.  I start chemo – Taxol, Avastin (keeps new blood vessels from growing towards the cancer and giving it that fuel) and Zometa (to rebuild my bones as we kill the bad cells). I also get scheduled for a brain scan the following Tuesday.

MUGA scan on Friday goes well – now to wait and see if it is in my brain. I go for my next chemo on Wednesday.

I spend the weekend as a mess, if it is in my brain I’m in trouble. Not that things are going to be easy as they stand  but brain mets are scary. To add to it, one of the other parents on my daughter’s soccer team had been diagnosed the previous November with lung cancer that had metastasized to his brain – at age 35. Healthy, young, wonderful guy. We lost him four months later, he left a beautiful wife, 7 year old daughter, 4 year old son, was his mother’s only child and she adores him still and a ton of other friends and family. Brain mets terrify me.

Spend a tearful morning at church, praying that my brain is cancer free. Go for the brain scan, still praying. Go to get chemo and scan results the next day. MUGA was good, needed that mostly as a baseline. Brain scan results aren’t back quite yet. I tell my doctor that I can’t handle waiting – can she find out for me. That is when she realizes how scared I am and expains that “I don’t expect to find any in your brain, I just need a clear brain scan for the Avastin”. OMG. I am so relieved, she comes back 20 minutes later and says “Yes there is a brain, No there is no cancer in it” – the shelling has stopped as my husband phrases it.

Now to calm down and look at a second opinion and figure out what is happening.

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Dr. Bks tells me I need a CT and a bone scan ASAP to determine if it has spread and I need to get to an oncologist, like, yesterday and she gives me recommendations. I call my Mom and my Husband and somehow am managing to stay in control. At least I think I did.

I call Dr. Grn who tells me the same thing and gives me recommendations for an oncologist as well as someone to do my port as he is going out of town. I call my general practitioner and talk to the doctor I had seen on Tuesday who tells me the same thing and gives me some names.

I call the oncologist whose name popped up twice and of course he was double booked for the following week but they could get me in to see his associate on Thursday morning – keep in mind this is Friday afternoon and I’m in a panic. I agree and explain that I have had three doctors tell me I need a bone scan and a ct, could we get those scheduled so we can hit the ground running on Thursday. I don’t know how old this girl was but I’m not sure she’d be my first line to deal with oncology patients. Anyway she says she’ll check, calls me back in about 30 minutes and says the doctor okayed it, when was I available…. “My schedule just got clear. You tell me where and when to be.” – SERIOUSLY! She calls back again, I have them scheduled for Tuesday at (the hospital near to my house). Beautiful.

Now to wait and tell the people who love me. This sucks.

Not going to tell my kids until I know what I am dealing with. May 8th is my sister’s birthday… do I tell her? My Dad’s Mother died of breast cancer when he was 5, I can’t tell him on the phone, I have to go see him. Then there are my friends, and of course it is Mother’s Day weekend.

My Mom convinces me to tell my Sister. I’d want to know if it was her even if it was my birthday, and I asked her to come over the next day to go tell Dad with me.

Then I make my big mistake. I start looking online. Not only could I not eat because my stomach was a mess but looking at the numbers regarding ibc – the rarest and nastiest version of breast cancer, and numbers regarding stage IV cancer, then looking at all there is about your diet and cancer. I was afraid to eat. Every time I put something in my mouth I was thinking “Is this feeding it? Is it starving it?” Complete mess. I call my doctor Saturday because I’m nauseous and everything I eat goes straight through me. I get an operator who says that the nurses don’t usually take calls on Saturday. I explain what is going on and it turns out she is a survivor – in treatment – and she’ll get a message to my doctor who calls in a prescription for me. Wow. That was fortunate.

Saturday my Sister comes over and we go to my Dad’s. I have tried to call a couple times and give my Stepmom a heads up but Dad answers the phone every time I call. My son was with us and as we walk in I send my Brother to go get Dad and quickly stun my Stepmother with the news. Dad comes down. ‘How do I tell him? I can’t do this. God I don’t want this to be happening.’ Dad sits, I tell him, he manages to find a reason to leave the table and my Sister follows him and we all cry.

I go to church and tell my Sunday School class, they are amazing and most of them have known me since I was a kid – seriously, like 2. I used to play with their kids. I spend the day scared to death that I’m going to die and trying to enjoy what I’m afraid could be my last Mother’s Day. I haven’t had enough of them yet! How am I going to wait until Thursday?

Monday – my Mom calls in the morning. She called her friend Dr. Bhd, an oncologist that she knows, and explained that she needed the name of an oncologist who specialized in breast cancer that she would go to or that she would send her daughter to and explains why. Dr. Bhd tells my Mom “I specialize in breast cancer and I’ll see her this afternoon”. God is putting the right people in my way.

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So it is the morning of May 7th. I’m convinced I have a nasty breast infection and am heading up to Good Sam for a mammogram. I drop my son off at my friend Ronda’s and call my mom on the way…

Mom: “Where are you going?

Ashley “I have a mammogram at Good Sam”

“Why”

“Looks like a breast infection.”

“Do you want me to come with you”

“No, I’m fine, no big deal” Boy was I wrong.

Go in for the mammogram, they decide to do an ultrasound (u/s). This is not surprising when there is something weird going on. At this point, the entire right side of my righ breast is kind of hard, it is tender to the touch and the nipple is retracting. Evidently the doctor on Tuesday had seen a red rash as well. ALL of these are classic signs of ibc. So I call Ronda, “Hey can you watch him longer.” Sure.

Having the u/s and the radiologist (Dr. Bks) actually comes in to take a look at it herself with the wand. She looks at me and says “I’m concerned about something called inflammatory breast cancer. I want to do a biopsy right now and I want you to see a surgeon this afternoon.”

ARE YOU KIDDING ME! I looked at her like she had three heads, agreed to the biopsy and am thinking, “Okay,  breast cancer… that sucks… but is pretty treatable… I’ll be fine” as I am trying to stay calm while they get ready to do the biopsy. They shoot anesthetic into my breast but evidently the mass kept it from circulating as well as it could so I am crushing this nurse’s hand while they take 5 samples of the mass in my breast and one of the skin (evidently the rash had gotten larger overnight – the anesthetic worked for this part). Dr. Bks  offered to stop but seeing as I didn’t want them to need to do it again, I told her to finish. She explains that ibc is aggressive and nasty but I am young. Yipee. So I remain relatively calm through all this, she hands me the info about the surgeon she has scheduled me with in about 2 hours and tells me I should know tomorrow.

I call Ronda, “Guess what, can you keep him longer still?” Fortunately she says yes. She gets online to our friends and asks for prayers and I call my Husband. That’s when I fall apart. I only remember two parts of the conversation. Him asking “WHO had a biopsy?”  and practically shouting “I DID! They are talking about cancer!” and me saying, “I need you to be available for about 15 minutes in about 15 minutes” and assuring him I could drive from Clifton to downtown and back again. There is no way I can call my mom at this point. I go downtown, he lets me freak out, gives me tissues, explains that I’ll be fine, it is just a breast infection and walks me to the car again and I go back to Clifton to meet the surgeon. My Husband doesn’t appear too crazed but he is good at that.

Meet Dr. Grn, general surgeon. Very nice, explains that if it is cancer then his next step would be to put in a port since with inflammatory they do chemo first. If it isn’t he’d do a larger biospsy so we can figure out what is going on. He tells me he’ll pray for me that night that it is only an infection. He also asks me to call him either way and let me know what they say, he seems interested even if he can’t help me (He’ll show up again in October). I leave his office still in a daze.
I called my mom at some point but I couldn’t tell you when. I don’t think I told really anyone else that evening but I can’t really remember anything about that evening except sheer terror and lots of praying and pleading with God. I spent a fair amount of time holding and hugging my kids too.

Morning of the 8th. My daughter has a Mother’s Day program at school “Muffins with Mom”, she made me the most precious book, we ate muffins and had orange juice and then all head to the gymnatorium (who thought those up?) and I managed to get through the songs and outside before I fell apart. My friend Mimi saw me and was trying to comfort me, my neighbor walked by looking puzzled, and I went home to wait.

By lunchtime I can’t handle it anymore and I call, Dr. Bks says she hasn’t gotten the report yet but she’ll call me as soon as she does. 2:50 – phone rings. Dr. Bks, it’s cancer.

“This isn’t happening”

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Many of you have heard this before but for those who haven’t – here goes. I’m going to do this in stages so I can get it all in.

Early April – Opening Day, April 6th actually – I wake up with really bad back pain. I figured that it was related to sleeping funny the night before, one kid had slept on one side of me and the other on the other side and I couldn’t move. We walked all over downtown that day and it was all I could do, and this was after taking Tylenol or Motrin or something which may not seem like a big deal but I never was one to take much medication. It wasn’t better within a day or so and I then attributed it to picking up my children and working in the yard etc., all the things we attribute back pain to.

Around that same time, neither my Husband nor I remember when, I noticed some changes in my right breast. It may have been a week or two before the pain in my back but it wasn’t long. I thought I had a clogged milk duct, my son had been weaning. I knew how to handle those but I couldn’t get it to clear, the hard spot was getting bigger and my breast was getting painful to the touch, not fun when a child rolls into you in the middle of the night.

Then I lost my appetite. Came down to breakfast one morning and nothing, nothing, was appealing. I started to lose weight, had lost about 5 pounds and went to do the MS walk with my friend Trish on Saturday April 25. As we were walking my right shoulder got more and more sore. I actually was in tears and stopped at the ‘medics’ at the water stop. Nothing wrong, just shoulder pain. So that week I called my doctor. I hadn’t been in awhile and they could see me Tuesday May 5th. Cool. I tell the doctor I have these three wonky things going on and that is my limit so I need to figure it out. He checks me out, says “Let’s get a mammogram, a lot of times a breast infection can cause back pain and upset your stomach”, no sense of urgency so he wasn’t worried either. Go to scheduling, I’d had a mammogram at Good Sam 5 years ago so we decided to stay consistent and go back there, they could see me in two days on the 7th.

Now we know the breast pain was really cansur, the back pain and shoulder pain was from metastasis to my bones and we know the appetite and weight loss was from mets to my liver. Inflammatory bc often gets mistaken for a breast infection. If you or someone you love is diagnosed with a breast infection, that is probably all it is, BUT if there is not improvement after one round of antibiotics, insist they look further before agreeing to more. There are women who use up valuable time with this aggressive type of bc taking antibiotics that aren’t going to help.

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Support System

Yesterday was officially six months since diagnosis, at least 20 more years to go. I couldn’t have gotten even this far without all the wonderful people who support me.

  • My children – the reason I get up and my primary motivation for kicking this thing to the curb.
  • My family – my mom, my dad, sister, stepmom, sister-in-law, even my 12 year old brother, have all been amazing. I am sure I’ll mention much more about each of them as this continues. My mom’s boyfriend has been great too. Then there are my aunts, uncles, and cousins, most of whom aren’t nearby but who keep tabs on me and help as they can.
  • My husband – has a lot to handle as daddy, husband, sole breadwinner and trying to balance the job situation and the home situation with other commitments he made before this…
  • My friends. The people who have stepped up and helped out… with meals, babysitting, phone calls, cards, prayers, more meals, gift certificates, rides to chemo… there are people who I didn’t even realize cared about me this much. Some of them are from my church, some from my daughter’s school, some I have met online. New friends, old friends, just an amazing group.

Several have been just amazing, one of them is Kelli.

Kelli lives three doors down. She is married to a firefighter named Dave and they have three kids. Their oldest daughter is three weeks younger than my daughter and the two of them are fast friends. They have another daughter who is two days older than my son and they have a son in between the girls. They moved in six years ago when the older girls were about a year old and I was so excited, Kelli is kind, generous, beautiful, funny and friendly. We were pregnant together with our youngest ones. One day when we were both really pregnant she busted out the double stuff Oreos and milk. Dave walked in the room, took one look and decided he wasn’t getting between pregnant women and Oreos and turned and walked back out of the room. I think we ate the whole bag, maybe it was just most of it though.

Kelli was one of the first to find out when I was diagnosed, one of the first to hear the news of the good scan results in June – I actually played the message my oncologist left for me and we cried tears of joy together as we hugged out on the sidewalk in front of the neighbor’s house. She and Dave watched my son for every chemo, and added my daughter to the mix once school was out. They took my kids to the zoo, the park, out to lunch and just let them play. I can’t tell you how many evenings this summer she brought home my son already bathed and fed. It has been such a blessing to know that my kids were safe and happy when I was at treatment. Her husband makes me laugh telling me stories about my son and the things he says and does. My son loves it at their house, so does my daughter. I enjoy it there too. There has been a lot of time spent on their front porch and in their back yard.

I had a dream one night in August and I woke up thinking “I have got to tell Kelli about this dream”. In my dream they had put their house up for sale. I didn’t mention the dream to her until three days later when she sat me down and told me they were going to put their house up for sale. I’ll  be frank, I wanted them to be successful selling their house but I would have had no problem if it had taken longer.

They are moving this week. My daughter cried last night because she is going to miss her friend. I did too. They aren’t going far, we will stay friends, so will our daughters and we’ll still see each other but it isn’t the same as walking three doors down with your mug and hanging out with your friend. The move is the best choice for their family and I want them to be happy but I want them to know that I have no idea how I would have gotten through the last six months without them.

She is one of my many friends who has stepped up and shown me how much she cares, way more than I had thought before this journey. So this is one of the ‘good things’ that comes from this disease and I’m grateful for Kelli, for her friendship and for her love, I’m grateful for her husband Dave and their children and even their parents as well. Thank you for being so wonderful and for loving my kids too.

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Recovering well

The oophorectomy was Thursday. It’s Sunday now. Doing okay. I got home from the hospital sooner than expected. Surgery was scheduled for 7:30am and we were at Good Sam at 5! I was home by lunch, I evidently woke up more quickly than expected, I took the percoset for the first 24 hours but didn’t like it so I’ve just been taking 4 Motrin at a time. Seems to be working to take the edge off so far. The left side incision is a little bigger but both will allow me to wear a bikini (not that I have much the last few years). The left one is also bruising some and is the more painful of the three, especially if I try to roll over at night. Don’t feel the one in the bellybutton at all.

Took the kids to church and hit the grocery store, need to go to bed. But I’ve been thinking…

My cousins walked in a walk to raise money for Pancreatic cansur research this weekend. We lost their mother, my aunt (Daddy’s sister) to this several years ago. cansir sucks. I did one (with a bunch of people who love me) for breast cansur here in Cincinnati, there are leukemia walks, lung cansir walks and on and on. With all the walks and all the people impacted by this disease I’m left wondering… when will we find a cure, for any of them, will we find a cure and why haven’t we yet? It seems like we would have to but each type of this disease has so many versions, and it is such an industry now, will there be multiple cures, different ones for different kinds and then for the subtypes within each. As an example, breast canser is tested for estrogen receptors, progesterone receptors and Her2nu. All things from which it can get fuel. The version I have is inflammatory and is estrogen positive, but negative for the other two. My friend Diane also has inflammatory but it is triple negative. A more common type for example is invasive ductal but it can also have any combination of the three. There are even those who are triple positive, do we all need a different cure or is one going to get all the breast cansirs, or even better will one just get rid of all cansir? That would certainly be a miracle drug wouldn’t it.

Okay, and a little off topic, do people who smoke while they are on these walks see the contradiction in what they are doing? Seriously, you are surrounded by people who either have cansir or love someone who does, at what point does smoking seem like a good idea in this setting? And then to get offended when someone calls you on it (seriously I watched this scenario play out). Yes, we are outside but when you are blowing smoke two feet in front of someone, outside doesn’t matter unless the wind is howling through. Don’t get me wrong, some of the people I love smoke, I wish they didn’t, I don’t get it and I don’t love them any less but regardless, I don’t want them smoking around me either and they don’t. How about helping us keep our list of challenges as small as possible.

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