Craziest 5 weeks of my life

I’m sorry I haven’t updated sooner. Things got pretty wild very quickly after my last post. I had a stereotactic biopsy on both breasts. The following Tuesday we got the results back, I had widespread, high grade ductal carcinoma in situ all over my right breast. The microcalcifications on the left side were benign.

I had my first appointment with my oncologist the next day. She reviewed her findings and said that because I had an aggressive form of DCIS and because of my age (37), she recommended a mastectomy of the right breast. It was up to me if I wanted to keep my left breast, but she said my risk of recurrence on the other side was about 1/2 to 1% per year of life…meaning if I lived for 40 more years I had up to a 40% chance of recurrence on the left side. That made my decision pretty clear. I had to take them both off.

None of this was a surprise to me, after reading what I had online, but hearing it out loud was difficult. I was then referred to a plastic surgeon to decide on what sort of reconstruction I wanted. I had that appointment on my 38th birthday. Happy birthday to me. We decided on DIEP Flap reconstruction, which takes my belly fat and uses it to rebuild the breast, making a very natural looking and feeling breast and also giving a tummy tuck at the same time. It is a complicated surgery and my plastic surgeon also said that if my blood vessels didn’t match up then he would have to change to a different type of Flap surgery, called pedicled TRAM flap. With that one he would use my ab muscles to rebuild my breasts.

From there things moved very quickly. My plastic surgeon was taking a vacation at the end of June so I had to choose between having my surgery within the next 2 weeks or waiting until he got back. Given that waiting has never been my strong suit and it seemed easier to make arrangements for the kids in the summer, we went with the earlier option and my surgery was scheduled for June 15. A little over a month from mammogram to bilateral mastectomy.

And so here we are….3 weeks and 1 day since my surgery. He did end up having to do the pedicled TRAM flap surgery. The recovery is long, but my husband, my mom, my family and my friends have been BEYOND amazing. My children were sent on lots of adventures with other people so I could rest and heal.

I went through a period right before my surgery of deep, DEEP anger about having to lose my breasts. But when my oncologist called me 4 days after my surgery and told me that they confirmed the DCIS was non-invasive, that my lymph nodes were clear and it hadn’t spread, that I didn’t need chemo, radiation or any further treatment at all….that I was CANCER FREE……that all dissipated. One battle to win my war. Truly an amazing gift.

Tonight I am sitting on my electric recliner. It has been my home since I got back from the hospital. I sleep here now, laying back fully is still uncomfortable. Today was the first day I spent all day with all of my boys. We went to my parents house and I rested there while my boys played, brought me water, showered me with kisses and love. I felt so damn lucky. I know why I took off my breasts. I did it for them, for my husband, for my family and friends and, yes, for me. So that I get to have many, MANY more of these days, weeks and years ahead.

I feel like I have connected with my husband and my boys in new ways that I cannot even describe. My husband has been the most amazing caretaker, my boys have shown such tenderness and empathy. I have learned so much about them, I’m learning new things about myself. I still have a psychological journey to take. Physically I’m healing but the mental piece of this is muddy and cloudy for me right now. But I’m aware and working on it bit by bit. The biggest thing is I am HERE. I am getting stronger every single day. I will put up some more detailed posts on my journey in a special section here, but I have seen some of you guys checking back here to see what happened so I wanted to give you the update. It’s not the update I wanted to give, but I’m through the worst and have only positive things to look forward to.

Thank you for your support.


5 thoughts on “Craziest 5 weeks of my life

  1. Essence B says:

    I pray the Lord heals your body and mind in this time of need. I cant believe it been a couple of years since visiting you blog.
    You wrote this one my birthday surprisingly!!!
    I was in a very dark place that day, not getting the things I’ve wanted and pouting to say the least about it. While you were writing about having a life threatening changing procedure. With the possibility of an even longer journey if the results had come out differently. Thank you for sharing this with those of us who get side tracked by our fertility struggles and forget that you have to live to raise children….. I needed to see this, may the Lord Jesus smile upon you and pour out his love on your home.

  2. Emily Melnick says:

    I had found your blog after a few helical miscarriages and saw your post about BC. I’ve been checking periodically ever since. I’m so glad to read your doing well. Curious if your doctors think any of this chemical pregnancy or if breast feeding could be related. Not the cause, but maybe hormones played a part in both. Again, so thankful to her your doing well!!!

  3. Eli says:

    Dear Amy
    I am a late comes to your blog. I finally thought last night I need to sort this out I keep getting my faint positive pregnancy tests and then gone like a puff of smoke as if I made the test positive because I wanted it so much but it wasn’t real. So last night I googled recurrent chemical pregnancy and your blog came up. I was so sorry to read at the end of your blog of your diagnosis and treatment but delighted that all is well now. I am now 45 years old and have 3 children from my first marriage (7 girl, 9 girl and 10 boy). I was blessed to have no problems with my first three pregnancies with them apart from preeclampsia with my first son. we had quite a tricky time with my ex who suffered depression for years and finally committed suicide 4.5 years ago after we had been separated for 1.5 years. I never wished to meet anyone else and often used to say to friends at toddler group if circumstances had been different I would have loved another baby. Well just over two years ago, I met the most gorgeous man who has a 9 year old daughter too. We all moved in together this year. Last September I had my Iud removed, he Is keen for another, I could have been happy with my gorgeous three and his beautiful daughter but one between us would be wonderful. I’ve always fallen pregnant very quickly so felt no surprise to me when in October I got a positive test. however, as you said, it just didn’t feel right from the beginning. due to some spotting and a small fall on my stairs I went for early ultrasound which should have been 8.5 weeks. There was a sac measuring 6 weeks but no sign of baby. I went home and allowed a natural miscarriage as I was already spotting. it took me until April really to feel back to normal but unfortunately since then I’ve had 3 or possibly 4 chemical pregnancies and I think I had a 5th the month before I was pregnant in October. They just don’t seem to stick. I have a new partner so maybe our combined genetics is causing a problem I don’t know or my age as I am older now though my aunt had her last baby at 45. My most recent is two faint positives about 3 and 4 days ago followed by a day of negatives and then the next day negative with fmu. I had a lighter bleed over the weekend and got the faint positives after the bleed. I still feel pregnant with bloating and have winded feeling in the tummy so have asked oh to pick up another test for the morning. we talked last night and I said maybe we could have some tests run at the private clinic up the road. We’re in the UK. I just don’t know pardon the pun if I should be chasing rainbows at my age. Of course having jumped back on the bandwagon again I am now crazy lady and all consumed. I’ve done all the normal stuff, acupuncture, reflexology, diet, health supplements Maca Powder sugar balancing supplements in case I might beware bit pcos prone! The list is endless! Trying to follow a mostly vegan diet to help. . .I have a scientific background with my work so like you have read all the studies etc. I’ve never considered the recurrent chemical pregnancies as an issue in its own right though, though did feel I keep getting pregnant but it doesn’t stick. I have been overwhelmed reading your blog with your determination and belief that it would happen but I feel I am losing hope now and not sure what to do really. I would welcome any ideas from you.
    with very best wishes to you and your gorgeous family.
    Eli x

  4. Susan says:

    Found your blog because I’m experiencing recurrent chemical pregnancies and found this. Just wanted to wish you well and send you support

  5. solymar says:

    Amy, I am reading through parts of your blog trying to find out if you ever used progesterone when you ovulated to help support a pregnancy rather than the HCG shots and came across THIS CRAZY CANCER CRAP you’ve been dealing with. I am SO happy to read that you are cancer free. And your description of being angry about loosing your breasts but then letting that go once you found our you were cancer free made total sense. It’s okay to feel however you feel, but that does put loosing your breasts into perspective. Anytime they can cut out the problem and not have to use chemo or radiation is a blessing. It’s the only way to know there aren’t cells lurking somewhere that chemo/raditation didn’t get and you don’t have to deal with the side effects of those, which can be quite sever!! I study pediatric brain cancer and that is rarely the case (being able to just cut it out). I don’t work with patients directly, but we receive patient sample from the local children’s hospital at our lab and know details about the cases. It’s always hard for me knowing what those families are going through when their child is in surgery. Well, not knowing exactly, but somewhat, because we had a child at that children’s hospital as well who passed away…

    He was our first and we thought everything was great. I remember looking at my husband on the way to the hospital to deliver and saying, “we’re actually going to be parents and bring home a baby!” He looked beautiful when he was born, but I guess wasn’t looking pink enough for the NICU nurses that are always there to check over the baby. After just 10min with him they took him to the NICU. My brother was in the NICU and almost died at/after birth. I was not concerned because our son looked great and maybe just had little fluid in his lungs. 24hrs later he was off oxygen and breast-feeding but had to stay to complete 7 days of antibiotics they started him on just in case. The next day we got the news that something might be wrong with him based on a geneticists evaluation. He could still live a fairly normal life but he would probably deal with some health issues. 2 days later he was back on oxygen and almost died transporting him to the children’s hospital. The next 3.5 weeks gradually gave us worse and worse news. I remember breast-feeding him and the cardiologists came and in and told me his heart was failing. I stared crying, of course, and couldn’t even keep feeding him. He was put on some difficult meds that helped his heart deal with his lungs, but nothing was helping his lungs – the real problem. When he was 4 weeks old we got an official diagnosis (genetically speaking) and he was only the 7th documented case in the world with this condition. 4 of them were much less severe. One died at 7mo gestation and one was a 12 year old that started having kidney failure at the age of 4. None of them had the lung issues he did. As we watched him struggle to breath and got the test results that nothing was helping we moved him to hospice a week later. He lived for 38 days. Situations like this, cancer, etc. put life in perspective in a totally new way. Mostly I was in the black trenches of grieving though for a really long time.

    We got pregnant our first try with both of our girls after that. E was born almost exactly a year after our son died. I was induced to make sure her birthday was not on the anniversary of his death as that was such a horrific and dark day for us. It was not peaceful or beautiful. Our second daughter was born 20 months later, again on our first try. We have been trying for a 3rd healthy child for 5months now, only to have each time I’ve gotten pregnant this time turn into a chemical. Every time I’ve been pregnant in the past we have had a living child in the end. We needed clomid or letrazole, but never have I have a miscarriage of any kind.

    I’m struggling with what to try next. I had to stop running to get pregnant (like I can’t even go 1/2 mile). That’s all it took with letrazole to get me pregnant again and I thought we were on our way to hopefully having a another baby, hopefully healthy… So far that’s not the case. We just tried progesterone for the second 1/2 of my cycle with the 3rd chemical, and although I got the highest HCG level yet on 13 DPO of 60, 2 days later, yesterday, it was only 55. I still haven’t started my period though I’ve started cramping.

    We are thinking we will go on to another cycle, but the fear that my eggs aren’t healthy anymore is very very scary. What our son had is not highly unlikely something another child of ours would have though we’ve done amniocentesis with our girls when I was ~15 weeks along. But we know what it’s like to have an unhealthy baby. We both don’t want to go through that again. We don’t want to watch another child suffer. And if it’s not clear, we feel extremely fortunate. EVERY. SINGLE. DAY. We have 2 healthy girls. I feel sorry for ourselves and what we’ve gone through what we carry around with us since the grief and the longing for him will never go away. But I feel extremely luck for what we DO have as well. It’s possible to feel both at the same time, which some people don’t understand and feel the need to tell us/remind us that we should focus on our two beautiful girls. I could add and relate to one of your “Crazy” posts on all the stupid things people say to you/comment on in relationship to your life!!

    Reading about what you went through with cancer is not the same of course… but reminded me again that we are currently in a good situation and it’s okay if we can’t have another child. We are not sick. We have our health. If someone could just promise me we’d all have that until each of us are really, really old, in exchange for another baby, I’d give that up. But these things are never up to us. I didn’t get to choose to have a son that went to the NICU and that died. I didn’t get to choose to have him followed by 2 amazingly adorable sisters, but I hoped for something along those lines once we had lost him. So much of life is not about what we can control but how we choose to move forward with what we are giving….

    If you check back here at all and get through this really long comment, please let me know if you ever tried progesterone to prevent chemicals before you went onto Dr. Dessy’s protocol. I’m seeing a Dr. that co-authored his paper on that protocol and she’s willing to try that with me I believer. I’m just not sure if it’s worth trying over repeating the progesterone suppositories or not. I’m 37 so maybe I’m just having a lot of bad eggs… :(.

    I hope you’ve recovered by now and are just getting to enjoy your boys and husband!!


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