Hopefully tomorrow when Dr Lawrence returns to round on me they'll decide that I either go home (hurray) or have surgery (okay). I'm going crazy here, all I think about is the cancer and how it is ruining my life. I think about my husband and son at home and I so want to be there with them and not here watching t.v. by myself.
Lately, I've gotten really annoyed with people that don't take care of themselves. People who eat poorly, are overweight, ignore doctor's orders, don't exercise and yet they don't get cancer! WTF, I took care of myself, I exercised, did everything right with my health- I told my doctor many times that the lump was there! Not that anyone deserves cancer, but seriously WHY ME? People you need to be responsible for your own health- if something does not seem right, do something! And please- don't complain to me about your problems.
Thanks for listening- sorry its not more positive.
Monday, May 30, 2011
Sunday, May 29, 2011
Antibiotics not cutting it
So I've been receiving i.v. antibiotics every 12 hours and they haven't really showed efficacy. The doctor's think that its 99% likely that the implant will need to come out. My plastic surgeon won't be back from Kansas until Tuesday, so sometime thereafter would be the soonest we could plan that surgery. Sadly, they won't be able to put a new implant in for a few months, so in the meantime- I maybe pretty deflated.
I found website for women who'd been 10+ years living with metastatic breast cancer, and there is a common theme for these women- they are usually young (like me), they have limited metastatic disease (I only have 2 bone mets) and they respond well to chemo drugs (I've never gotten sick from any of my drugs). So I'm really optimistic that I fit into that category and I can be around for some time before the disease progresses significantly.
On a side note, my thesis committee has decided to allow me to graduate without writing a lengthy thesis! I've met all the requirements- I passed comps, I have a primary research paper, and a review. That is such a relief, because I have about 1 month of work to do on my thesis and then I would need to prepare for the oral presentation. Although a month isn't very long, for me its an eternity and I can't afford to spend that time working on a degree I'll never use. I'm hoping that my science career isn't over, but it looks like it may be. Time will tell. Either way, family is my priority now.
I found website for women who'd been 10+ years living with metastatic breast cancer, and there is a common theme for these women- they are usually young (like me), they have limited metastatic disease (I only have 2 bone mets) and they respond well to chemo drugs (I've never gotten sick from any of my drugs). So I'm really optimistic that I fit into that category and I can be around for some time before the disease progresses significantly.
On a side note, my thesis committee has decided to allow me to graduate without writing a lengthy thesis! I've met all the requirements- I passed comps, I have a primary research paper, and a review. That is such a relief, because I have about 1 month of work to do on my thesis and then I would need to prepare for the oral presentation. Although a month isn't very long, for me its an eternity and I can't afford to spend that time working on a degree I'll never use. I'm hoping that my science career isn't over, but it looks like it may be. Time will tell. Either way, family is my priority now.
Saturday, May 28, 2011
Weekend in the hospital
Minor issue (relatively speaking), woke up this morning with pain in my breast implant. Wanted to brush it off, but the redness and warmth suggested it could be something serious. Made a visit to the ER this morning and they admitted me for an infection. So I'm on i.v. antibiotics for cellulitis, and hoping that I can keep the implant. How bad would it suck to have to get this implant (tissue expander) removed after all this and then to have to get another one later. It was super painful the first time around, I'm not sure I'd have the courage to go through that again.
So here I am on the cancer floor watching Sex and the City reruns. But at least this isn't life-threatening and the worst that could happen is I'd loose a boob. I still get pretty grumpy when people complain about their problems, I'd like them to know what I'm going through. I figure that if God can just help me get through this, that I'll listen to everyone else complain about their problems and not roll my eyes.
So here I am on the cancer floor watching Sex and the City reruns. But at least this isn't life-threatening and the worst that could happen is I'd loose a boob. I still get pretty grumpy when people complain about their problems, I'd like them to know what I'm going through. I figure that if God can just help me get through this, that I'll listen to everyone else complain about their problems and not roll my eyes.
Friday, May 27, 2011
Chemo is on the way!
Just got word that my first shipment of Tykerb is on its way and I should be able to start treatments before the weekend! The other drugs I will be taking are Xgeva (shot every month) and then Xeloda. The side effects are not supposed to be too bad, some rashes and sores on the palms of hands and feet.
I've gotten in touch with Imerman Angels and was introduced to a gal in a very similar situation as me, but she's 4 years into it. What a relief to know that I'm not alone. She's given me alot of hope that I will be able to stay at home and take care of Parker despite treatments and side effects. She made the comment that fighting metastatic cancer is like a chess game- cancer makes a move, then our doctors re-evaluate their strategy and make their move. Can't wait till we get this cancer in check or better yet check-mate!
My doctor said that a few individuals with a similar diagnosis have responded so well to treatments, that they zapped their residual bone spots with radiation and then eventually stopped treatment altogether! He referred to that response as a home-run, very cautious to use the word cure. But call it what you want, wouldn't that be amazing! Those individuals are still monitored very heavily and the cancer could pop back up at anytime, but what a thought!
Looking forward to doing some lite traveling this summer, we are going to Omaha in a few weeks, Pittsburgh in July, and in August we'll spend some time in Wisconsin Dells (only 20 minutes from where I grew up). Don't want to travel too far yet, as Parker isn't keen on being cooped up in a car or plan for that long.
I've gotten in touch with Imerman Angels and was introduced to a gal in a very similar situation as me, but she's 4 years into it. What a relief to know that I'm not alone. She's given me alot of hope that I will be able to stay at home and take care of Parker despite treatments and side effects. She made the comment that fighting metastatic cancer is like a chess game- cancer makes a move, then our doctors re-evaluate their strategy and make their move. Can't wait till we get this cancer in check or better yet check-mate!
My doctor said that a few individuals with a similar diagnosis have responded so well to treatments, that they zapped their residual bone spots with radiation and then eventually stopped treatment altogether! He referred to that response as a home-run, very cautious to use the word cure. But call it what you want, wouldn't that be amazing! Those individuals are still monitored very heavily and the cancer could pop back up at anytime, but what a thought!
Looking forward to doing some lite traveling this summer, we are going to Omaha in a few weeks, Pittsburgh in July, and in August we'll spend some time in Wisconsin Dells (only 20 minutes from where I grew up). Don't want to travel too far yet, as Parker isn't keen on being cooped up in a car or plan for that long.
Thursday, May 26, 2011
Long story short
So to make a long story short-6 weeks after Parker was born- I discovered I had a lump in my breast. Told doc many times, but she brushed it off as I had an ultrasound on
that breast during pregnancy (thought there was something then too). My doctor told me it was probably a plugged milk duct, so massage it and use a hot pack for 15 min several times a day. Plus I have no family history, no cancer in the family at all, I don't smoke and I exercise regularly- so cancer was NOT on my radar. Well, nothing I tried caused the lump to shrink. The doctor said, if it doesn't get better by the weekend, take these antibiotics. Well it didn't progress to mastitis and the lump didn't go away by that weekend. It continued to get larger and I continued to mention it at all doctor's appointments, even at Parker's well child visits. Finally fed up with a lump the size of A LEMON- I insisted that I have more imaging done. Granted I had a clean ultrasound on that breast only 6 months earlier. For those of you without experience with breast tumors, it was only noticeable by feeling the breast- it was a hard area in the corner. Despite the size of the lump, my breast was still totally normal sized and producing plenty of milk for my little one.
August 29th, I went to University Hospitals and Clinics Breast Clinic and had ultrasound and mammogram. The ultrasound saw NOTHING, they almost sent me home! I suggested that they do more imaging as I really wanted to have some answers that day. Having a mammo while lactating is NOT fun- and it was very uncomfortable. The mammogram saw lots and lots of calcifications all throughout the breast but no obvious tumor or mass where the lump was. Little did I know that calcifications are a red flag for cancer. They took me into a little office, handed me a box of tissues and said, it's not good. They said that it was probably cancer and they would need to move fast to determine the type and extent of disease. I called Patrick and he joined me at the hospital where I spent several more hours getting core biopsies and needle aspirat
es of the mass and an enlarged lymph node. My world fell apart, I was terrified and had to wait an agonizing 3 days to get the pathology report and decide our plan of action.
The very next week I found myself in an oncologist's office with my father, sister, husband, son and my very sick mother (in a wheelchair nonetheless) waiting to get any shred of good news we could. Turned out it was not responsive to female hormones (ER/PR-), it was of the very aggressive Her-2 subtype, and it was present in the enlarged lymph node. Doctor felt confident that it would not be elsewhere in my body, so we did not do whole body imaging to look for metastatic spread. In sum, I was stage IIIb or IIIc. There is only one stage beyond III, and that is IV.
That same day, I started the first of my 4 rounds of neoaduvant chemotherapy regimen, 5' Fluorouracil, Epirubicin and Cyclophosphamide (FEC), with herceptin. After those 4, 3 week cycles, I would have 10 cycles of Paclitaxol and continue herceptin. Chemo wasn't that bad for me. The first night I was so hyper because of the pre-meds (prednisone) that I couldn't sleep, and it wasn't uncommon in the weeks to follow for me to go jogging the same day as chemo. Never suffered nausea or neuropathies (loss of feeling in extremities), although had my fair share of GI issues.
In Feb, 2010 I had my surgery- which included a left masectomy and complete lymph no
de dissection followed by immediate reconstruction. The plastic surgeon used a skin sparing technique so that I would have minimal future surgeries. All the while I was still on herceptin. After surgery, the pathology report came back and I had 4/12+ lymph nodes, ie. the cancer was still there, but thankfully they'd removed all lymph nodes they could see. The primary breast tumor however had a complete response and all remaining cancer there was DCIS (a non invasive stage I form of cancer).
Because I had several + lymph nodes I still needed radiation to increase my chances of a recurrence free future. I had radiation to my reconstructed breast, the arm pit as well as the chest wall. It was very uncomfortable- and was much more painful that I expected. Radiation burns feel like a sun burn that goes all the way through your body. I pealed several times and my scar never fully healed up. I had noticed on my last treatment day that my back was really starting to hurt, but chalked it up to stress, picking up Parker and lack of exercise. While all this was going on, my own mother lost her battle with amyloidosis and was laid to rest the day before mother's day in 2010. I was heart broken but knew she'd suffered long enough.
On a follow-up visit with the Rad. Oncologist I mentioned the back pain (it was now so bad that I limped) and she suggested we get a bone scan- just in case. I had tried to massage it out, heat, ice, I even tried jogging (which hurt so bad I almost cried). While in the lab, working on scheduling my PhD defense date, I got a call from the Rad. Oncologist and she said it wasn't good news. There were two spots of metastatic disease in my bones (a vertebra and my pelvis) right over where I had the terrible back pain. Holy Crap, I was still on Herceptin for 3 more months! How could it come back before I'd even finished therapy! I had read such wonderful things about Herceptin, how could it fail me?
PET and CT scans revealed that (thankfully) my lungs, liver and brain were cancer-free. That minor victory gave me hope. Although such imaging can't detect micro-metastases which could be everywhere and anywhere in my body. So I am very cautious. I have started monthly Xgeva (a antibody to RANKL) to strengthen my bones, and hopefully Tuesday next week I will get to start the new chemo cocktail my doctor selected. The pain is worst in the morning and night, but it responds well to advil.
I am taking a medical leave of absence from graduate school, to spend time raising Parker. Unfortunately, we will not be able to expand our family due to my health, so I want to cherish every moment I have with our little man. He is 1 year old now.
I have no idea what I will do career-wise, at this point- I just don't care. The irony is painful. During undergrad. I worked alongside a graduate student studying skin cancer and the initiation, promotion and progression of cancer. Then when I came to Iowa, I always thought I'd end up studying cancer, not be fighting it.
that breast during pregnancy (thought there was something then too). My doctor told me it was probably a plugged milk duct, so massage it and use a hot pack for 15 min several times a day. Plus I have no family history, no cancer in the family at all, I don't smoke and I exercise regularly- so cancer was NOT on my radar. Well, nothing I tried caused the lump to shrink. The doctor said, if it doesn't get better by the weekend, take these antibiotics. Well it didn't progress to mastitis and the lump didn't go away by that weekend. It continued to get larger and I continued to mention it at all doctor's appointments, even at Parker's well child visits. Finally fed up with a lump the size of A LEMON- I insisted that I have more imaging done. Granted I had a clean ultrasound on that breast only 6 months earlier. For those of you without experience with breast tumors, it was only noticeable by feeling the breast- it was a hard area in the corner. Despite the size of the lump, my breast was still totally normal sized and producing plenty of milk for my little one.August 29th, I went to University Hospitals and Clinics Breast Clinic and had ultrasound and mammogram. The ultrasound saw NOTHING, they almost sent me home! I suggested that they do more imaging as I really wanted to have some answers that day. Having a mammo while lactating is NOT fun- and it was very uncomfortable. The mammogram saw lots and lots of calcifications all throughout the breast but no obvious tumor or mass where the lump was. Little did I know that calcifications are a red flag for cancer. They took me into a little office, handed me a box of tissues and said, it's not good. They said that it was probably cancer and they would need to move fast to determine the type and extent of disease. I called Patrick and he joined me at the hospital where I spent several more hours getting core biopsies and needle aspirat
es of the mass and an enlarged lymph node. My world fell apart, I was terrified and had to wait an agonizing 3 days to get the pathology report and decide our plan of action. The very next week I found myself in an oncologist's office with my father, sister, husband, son and my very sick mother (in a wheelchair nonetheless) waiting to get any shred of good news we could. Turned out it was not responsive to female hormones (ER/PR-), it was of the very aggressive Her-2 subtype, and it was present in the enlarged lymph node. Doctor felt confident that it would not be elsewhere in my body, so we did not do whole body imaging to look for metastatic spread. In sum, I was stage IIIb or IIIc. There is only one stage beyond III, and that is IV.
That same day, I started the first of my 4 rounds of neoaduvant chemotherapy regimen, 5' Fluorouracil, Epirubicin and Cyclophosphamide (FEC), with herceptin. After those 4, 3 week cycles, I would have 10 cycles of Paclitaxol and continue herceptin. Chemo wasn't that bad for me. The first night I was so hyper because of the pre-meds (prednisone) that I couldn't sleep, and it wasn't uncommon in the weeks to follow for me to go jogging the same day as chemo. Never suffered nausea or neuropathies (loss of feeling in extremities), although had my fair share of GI issues.
In Feb, 2010 I had my surgery- which included a left masectomy and complete lymph no
de dissection followed by immediate reconstruction. The plastic surgeon used a skin sparing technique so that I would have minimal future surgeries. All the while I was still on herceptin. After surgery, the pathology report came back and I had 4/12+ lymph nodes, ie. the cancer was still there, but thankfully they'd removed all lymph nodes they could see. The primary breast tumor however had a complete response and all remaining cancer there was DCIS (a non invasive stage I form of cancer).Because I had several + lymph nodes I still needed radiation to increase my chances of a recurrence free future. I had radiation to my reconstructed breast, the arm pit as well as the chest wall. It was very uncomfortable- and was much more painful that I expected. Radiation burns feel like a sun burn that goes all the way through your body. I pealed several times and my scar never fully healed up. I had noticed on my last treatment day that my back was really starting to hurt, but chalked it up to stress, picking up Parker and lack of exercise. While all this was going on, my own mother lost her battle with amyloidosis and was laid to rest the day before mother's day in 2010. I was heart broken but knew she'd suffered long enough.
On a follow-up visit with the Rad. Oncologist I mentioned the back pain (it was now so bad that I limped) and she suggested we get a bone scan- just in case. I had tried to massage it out, heat, ice, I even tried jogging (which hurt so bad I almost cried). While in the lab, working on scheduling my PhD defense date, I got a call from the Rad. Oncologist and she said it wasn't good news. There were two spots of metastatic disease in my bones (a vertebra and my pelvis) right over where I had the terrible back pain. Holy Crap, I was still on Herceptin for 3 more months! How could it come back before I'd even finished therapy! I had read such wonderful things about Herceptin, how could it fail me?
PET and CT scans revealed that (thankfully) my lungs, liver and brain were cancer-free. That minor victory gave me hope. Although such imaging can't detect micro-metastases which could be everywhere and anywhere in my body. So I am very cautious. I have started monthly Xgeva (a antibody to RANKL) to strengthen my bones, and hopefully Tuesday next week I will get to start the new chemo cocktail my doctor selected. The pain is worst in the morning and night, but it responds well to advil.
I am taking a medical leave of absence from graduate school, to spend time raising Parker. Unfortunately, we will not be able to expand our family due to my health, so I want to cherish every moment I have with our little man. He is 1 year old now.
I have no idea what I will do career-wise, at this point- I just don't care. The irony is painful. During undergrad. I worked alongside a graduate student studying skin cancer and the initiation, promotion and progression of cancer. Then when I came to Iowa, I always thought I'd end up studying cancer, not be fighting it.
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