Opening Up | My Partial Molar Pregnancy | 3

I didn’t lose any hair on my head, but my eyelashes completely fell out. Every week I went to the hairdresser, scared to wash my own hair and see it in the drain, because somehow that would be worse than what I was already going through. Was it vain? Yes. The thought of losing my hair – part of my identity – would have probably been the last straw; the last barrier between where I was emotionally and a complete meltdown. My hairdresser was so kind and accommodating. Every time, she would gently wash and comb my hair, showing me the empty comb to comfort my fears, and blow dry my hair carefully on low heat. I knew that if I had my hair done every week this way, maybe it would prevent me from washing my hair too frequently and losing hair. Losing my hair would have meant that it was really happening. Vain, but true.

But I had no idea that it would be my long eyelashes that were affected – I never appreciated them as one of my qualities until they were gone. I was always so critical of myself and my looks. I never appreciated my pretty eyes until I lost my eyelashes and had to see them falling out every day when I took my mascara off, until there were none left to apply mascara to anymore. This experience showed me that I was too hard on myself. My skin grew dry, cracked, and bruised on a dime, turning purple and green because of my clumsiness. I had horrible breakouts that turned into scabs for weeks. When cut or injured, my already-sensitive skin would bleed for two weeks and scar even worse when it finally healed. There was more, but I won’t list all that now. It weighed on me as I saw myself worsening in the mirror every day. It was a wake-up call, not only to my deteriorating health, but to my vanity, to how hard I was on myself, and to how I never appreciated myself in general.

I was undergoing chemotherapy treatment; specifically, Methotrexate injections. Methotrexate interferes with the growth of certain cells of the body, especially cells that reproduce quickly, such as cancer cells, bone marrow cells, and skin cells. It is used to treat certain types of cancer of the breast, skin, head and neck, or lung. It is also used to treat severe psoriasis and rheumatoid arthritis. In my case, it was the first step in treating my rising hCG levels and potential choriocarcinoma or placental site trophoblastic tumor. Methotrexate can lower blood cells that help your body fight infections and help your blood to clot. You may get an infection or bleed more easily: thus, my horrible bruising and never-healing skin. But it was far better than what I could be experiencing, so I just dealt with the issues I encountered. If the methotrexate didn’t work at bringing my hCG levels down, there would be worse things in store.

Three kinds of treatment are used for malignant GTD: surgery (removing the cancer), chemotherapy (using drugs to kill the cancer), and radiation therapy (uses high energy x-rays to kill cancer cells and shrink tumors). The most common operation used for malignant GTD is hysterectomy, an operation to take out the uterus. Surgery may also be used to remove cancer involving the lungs and other organs which have not gone away with drug therapy. Chemotherapy is the main treatment for malignant GTD and is generally highly effective. It may be taken by pill, or by a needle in vein or muscle. In my case, I was given a weekly dose injected directly into my gluteal muscles.

When I received my first phone call that my hCG levels had gone up, my heart sank. I went into survival mode when my nurse asked me when would be ‘convenient’ for me to come in and receive my first treatment. “Today, now,” I said firmly. She seemed taken aback and a bit surprised, but made room for me right away in the schedule and squeezed me in. I wasn’t going to wait one more day knowing that cancer could be spreading in my body – I wouldn’t be able to sleep or rest until I did something about it. I didn’t want a hysterectomy, I wanted babies. My mom, sister in-law, and I already had the surrogate conversation and, although it was a comforting offer, it was absolutely not what I wanted to happen. I left work right away and drove up to the doctor’s office like a deranged woman on a mission.

At the appointment for my first injection the nurses went through all the legalities, paperwork, and side effects of the medication. I would receive this treatment for the next three weeks (customary) and it should bring my hCG level down to zero. They saw me nodding my head, but I was just really determined to ‘just do this’ and get on the road to getting better once again. They had me lay on my side, and stuck me with a very large needle filled with a large dose of poison. Part of my brain knew that it hurt going deep into my muscle, but the other part didn’t care – I knew I needed it. They gently sat me up and asked me how I felt. They made me rest for a few minutes to make sure I didn’t feel sick or faint, but I have always had an extremely high tolerance for such things. Besides, at this point, I had already watched my blood being drawn for a few months, so this needle didn’t seem any different in the pain department. To make sure the methotrexate dissipated and that I didn’t bruise badly later on, they pressed on the injection site so hard that it hurt, and rubbed until I almost cramped. In all honesty, that part hurt worse than the injection itself.

As I sat, waiting to make sure I wasn’t going to be sick, they once again went over the side effects, as well as my strict dietary restrictions. Normally with methotrexate you must avoid all alcohol as well as UV rays. So for me, no sun and no fun (not that I was having fun anyway). In addition, because of my particular treatment, I had to cut folic acid out of my diet completely. As they told me this, the nurse asked “Do you understand? No folic acid; nothing with folic acid.” I responded positively, although I wasn’t sure exactly what it entailed, but I was an intelligent person and I knew that I could figure it out with some online research and label-reading.

As soon as I got in the car on the way home it hit me – the poison. I was already driving, and there was nowhere to pull over. I was starting to sweat, and gasp heavy breaths with a sickening feeling in my chest and stomach. Max called me to see how everything went but I told him I couldn’t talk, even on speaker phone. It took every ounce of my inner strength and concentration to get home safely, gripping the wheel like I was holding on for my life and doing [what I thought were] breathing exercises. When I finally made it home I went straight to bed and laid down in the dark until my stomach settled and heart rate went down. Luckily, that was the first and only time I had such a severe and immediate reaction to my methotrexate dose.

As I laid in bed I decided to go on my phone and do a little research on folic acid and what foods I was prohibited from eating. I had done some pretty strict diets in the past to lose weight, so I figured I could handle anything thrown my way in this case since it was doctor’s orders. I was wrong.

Folic. Acid. Is. In. Everything.

Folate and folic acid are forms of a water-soluble B vitamin. Folate occurs naturally in food, and folic acid is the synthetic form of this vitamin. Since 1998, folic acid has been added to cold cereals, flour, breads, pasta, bakery items, cookies, and crackers, as required by federal law.  The addition of folate to established tumors has previously been shown to cause an “acceleration phenomenon” in humans. Foods that are naturally high in folate include leafy vegetables (such as spinach, broccoli, and lettuce), okra, asparagus, fruits (such as bananas, melons, and lemons) beans, yeast, mushrooms, meat (such as beef liver and kidney), orange juice, and tomato juice. But I couldn’t have any folic acid at all, not just foods that were high in folic acid. So I was left with a very short list of actual foods that I could have. Here it is:

Meats/proteins (beef, chicken, pork, turkey, fish), candy, chocolate, syrup and honey, soda and non-juice drinks, milk, fats and oils, mustard, hot sauce, apples, potatoes, and yogurt.

That’s all I could have. No veggies or anything green, no beans or legumes, no breads or pastas (because it was all fortified according to the government), and no fruits and juices. Reading labels became so important. Even dressings, sauces, cakes, etc. contained folic acid. My daily diet was limited, and I quickly grew tired of the same things. I wanted to be healthy, so I didn’t indulge in the allowed candy, chocolate, and fats, plus I am not a soda drinker at all. My daily routine consisted of leftover protein for lunch (chicken or fish, usually), some potato chips as a snack, and another plain protein for dinner. I have never missed broccoli so much in my life, or a crisp Caesar salad.

My bad luck continued when the first three weeks of chemo were unsuccessful in bringing my hCG back to normal. The next step was to double my dose, and keep me on my weekly injections until it worked. If it didn’t, it was onto the next drug, and then surgery. Placental site trophoblastic tumors, unlike choriocarcinoma, are not very sensitive to chemotherapy. Since in most cases the tumor is localized to the uterus, hysterectomy is generally curative. When the disease spreads outside the uterus, high dose chemotherapy is used with some success.Radiation may infrequently be used in certain cases to treat cancer that has spread to other parts of the body, particularly the brain. In my case, since I was not responding fast enough to the methotrexate, it pointed to the fact that I may have a placental site trophoblastic tumor, and not choriocarcinoma.

So, every week I received my doubled methotrexate injections, drew blood for testing, and every day I ate the same things. Over time my portions decreased because, out of boredom and monotony, I developed food aversions to everything I could actually eat. It came to the point where I was eating so little that I was dropping weight very quickly. I was a bit overweight anyways, so I tried to see it as a positive “side effect”, but this wasn’t the way I wanted to lose weight or get in shape. I knew it wasn’t healthy because I knew I flat out wasn’t eating. I was too tired to exercise, too, so I’m sure that my body wasn’t working at all like a fine-tuned machine – it was barely sputtering on to function.

It didn’t stop the compliments from coming, though. Only those closest to us knew the full details of what I was going through. Otherwise, extended family, friends, and coworkers just thought I had experienced a miscarriage and had moved on. They had no idea I was going through chemo. People would see me and tell me how much thinner I looked, how I was losing weight, and asked “How are you doing it? Whatever it is, I need it!” I smiled, said thank you and took the compliment, but what was I supposed to answer? “Well, I’m losing all this weight because I can hardly eat anything due to my chemo and horribly restrictive diet.” I couldn’t say that, so I just secretly thought to myself how ridiculous the whole thing was. I was so conflicted. I was completely miserable.

For 14 weeks (three and a half months) I wasted away, losing 40 pounds, receiving double methotrexate, and suffering the unpleasant side effects. We didn’t go out, not even to eat – what could I eat? We weren’t enjoying our lives at all and found little enjoyment in our daily routines, in addition to the cloud of doubt and fear that hung over our heads. I was losing hope and began to fall in a deep depression. I couldn’t even console myself with pizza or my usual comfort foods. So, I began to cheat with a glass of wine here, and a beer or two there. Over several weeks, however, it turned into more than that. I had hit rock bottom: I was drinking and hiding it.

When I finally fessed up and told Max what I had been doing I cried. I was so ashamed, and he was upset, too. Even though I was disappointed in myself, it hurt even more to disappoint him. I could have caused serious liver damage with my actions. It is recommended that those on Methotrexate do not consume any alcohol because of the risk of liver damage. I didn’t even want to tell him, but something inside me knew that once he found out he wouldn’t let me continue; he would make me stop, and take care of me when I couldn’t take care of myself. I needed him to know because I needed his intervention. I had given up so close to the finish line and needed his help to complete the race.

Thankfully, at this point, I was nearing the end of my treatment.

My hCG levels were getting closer and closer to zero (<2) and I was regaining some hope. Maybe I wouldn’t have to have surgery, or a hysterectomy, or do radiation therapy. I had hope again that I would be able to have a baby, live a normal life again, and regain the time and happiness that I had lost. Max and I traveled to Toronto, Canada, for a little summer vacation before I returned to work at a new school. It was our getaway to repair what we had lost between us over the last year of struggle. We were (are are still) in the early stages of our marriage, and suffered huge setbacks in the development of our personal relationship. This trip was the light at the end of the tunnel and a chance for us to finally believe that it was all going to be alright. We wined and dined, toured the city, and felt as invigorated as we did on our honeymoon. It was exactly what we needed.

This whole ordeal was truly a blessing when it ended. A bit anticlimactic, but I didn’t care. It was over, in a sense. After I reached hCG levels of less than 2, I received 3 more weeks of Methotrexate to be sure that any Choriocarcinoma or Trophoblastic Tumor that MAY have been there was surely gone for good now. Once that was done, I started going in every month for blood tests, which was a great relief to me as opposed to my weekly visits. I also was able to do a full panel to check my liver, and amazingly there was no damage, and it is functioning extremely well. As two, three, and four months passed, my blood results continued to return with hCG levels below 2, and now I am quickly approaching my 6-month post-chemo milestone. I have put some weight back on again, about 10 lbs, but I am comfortable and happy with myself as I am. Most importantly, I feel healthy.

After the past year, so much has changed between Max and myself. We are a completely different couple than we were before, and I think that is for the better. We have seen each other at our best and worst, and have bonded over this experience on a deeper level than I ever thought was possible. I don’t see him any differently; I had always seen him as my hero, but now it was just increased tenfold. In my mind, he basically wore knight’s armor and brandished a sword, protecting me and helping me conquer my obstacles. I don’t know, though, if he sees me differently after all of this. After all, now that I look back, I could have been stronger – I could have done better. There are a million different ways I could have dealt with and handled all of this, and I know I made mistakes. But there was no way to prepare myself for this, so I hope that he can forgive me for my missteps and difficult times.

 

Thank you all for those of you who have followed this account from the beginning, and I hope that it can shed some light on this rare condition to those who are going through the same thing. Do not give up hope, continue to be strong, don’t lose it, don’t fall so far into a dark hole that you can’t get out, surround yourself with genuine people who love you, who can be strong for you, and who understand that the most important thing you need is support. Be selfish: take care of yourself, put yourself first, focus on your life, health, and happiness. That is my advice, and I hope you don’t feel guilty for following any of it. There is hope that everything will be alright – look at my case. I had (almost) all of the worst-case scenarios actually happen to me, and I’m still here, still standing at the end of it, still able to have children one day, loving my stronger-than-ever marriage, and emotionally stronger than the day this all began.

After this experience, I have been moved to create a Free Mini e-Course addressing Pregnancy Loss Recovery and the steps involved in navigating positive personal growth. If you’d be interested in this enriching workshop, please enter your info below and I will notify you when it launches!


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I have posted my initial beta-hCG blood results below for anyone who is going through this same thing to view. When this was happening to me, I searched and searched to no avail for firsthand results of others who were experiencing this to compare my progress to. Although every case is different, this is the course that my journey took.

1/8/2015 -bHCG 290,000
1/15/2015 – D&C
1/24/2015 -bHCG 32,000 (9 days post D&C)
2/4/2015 -bHCG 39,000 (increase)
2/10/2015 -bHCG 35,202 (-9.7%)
2/16/2015 -bHCG 29,527 (-16.1%)
2/23/2015 -bHCG 16,900 (-42.7%)
3/2/2015 -bHCG 9,259 (-45.2%)
3/9/2015 -bHCG 4,298 (-53.5%)
3/16/2015 -bHCG 2,306 (-46.3%)
3/24/2015 -bHCG 832 (-63.9%)
3/31/2015 -bHCG 389 (-53.2%)
4/6/2015 -bHCG 238 (-38.8%)
4/13/2015 -bHCG 148 (-37.8%)

4/20/2015 -bHCG 169 (increase)
4/21/2015 – Round 1 Methotrexate
4/27/2015 -bHCG 67
4/28/2015 – Round 2 Methotraxate
5/4/2015 -bHCG 61
5/5/2015 – Round 3 Methotrexate
5/11/2015 -bHCG 39, break from Methotrexate

5/18/2015 -bHCG 78 (increase), Round 4 Methotrexate (begin double dose)
5/25/2015 -bHCG 49, Round 5 Methotrexate
6/2/2015 -bHCG 30, Round 6 Methotrexate
6/9/2015 -bHCG 21, Round 7 Methotrexate
6/16/2015 -bHCG 18, Round 8 Methotrexate
6/23/2015 -bHCG 7
6/24/2015 – Round 9 Methotrexate
6/30/2015 -bHCG 8
7/1/2015 – Round 10 Methotrexate
7/7/2015 -bHCG 3
7/8/2015 -Round 11 Methotrexate
7/14/2015 -bHCG <2
7/15/2015 -Round 12 Methotrexate
7/27/2015 -bHCG <2, Round 13 Methotrexate
8/3/2015 -bHCG <2, Final Round 14 Methotrexate

 

19 thoughts on “Opening Up | My Partial Molar Pregnancy | 3

  1. Jaime

    Thank you for taking the time to share your story. I didn’t even know all of this could happen from a molar pregnancy. I pray that your marriage will continue to strengthen and your love grow stronger with each passing day. I am glad you had such a supportive husband at your side as you both went through that difficult time.

  2. Dreaming

    Browsing the net for some information with true feelings, lying in bed the day after my D&C with no energy to move after significant blood loss. I am so happy to have found your story. It’s so lonely being here and it’s such an usual loss that finding any information you can actually relate to is hard. Thank you x

    • Dreaming,

      I am so sorry to hear about what you are going through. Writing this piece was a sort of therapy for myself, but I am glad that a side result of it is that people have more information out there, and I can give some sort of comfort that everything will be OK – because it will. You are stronger than you know, and you will come out of this as a warrior. Thinking of you,

      Jess

  3. Katie

    Just found out yesterday that I have a molar pregnancy. First hcg draw is today and then again on Friday to confirm its not a viable pregnancy. Guessing the d&c will be next week. So nice to have a real life look at the potential path ahead. Thanks for sharing! Also, did you find any good resources or online support through this?

    • Katie,
      I am so sorry to hear about your pending diagnosis. Be strong – I know from experience that this part is shocking, and you will be on a roller coaster for a while. But you will pull through it, be confident in your strength, and focus on getting better. Unfortunately, I found next to nothing in the realm of support and I do online, which is why I wrote this for others. I feel like it’s so painful and drawn out that people just don’t want to share those private details, and just want to put it behind them. My own doctors proved to be a great resource, and my own immediate family as a support system. And as always, I am here for any advice, questions, or support that you ever need. I am a well of information, so feel free to reach out at any time. My thoughts are with you.
      Jess

  4. Richelle

    Hi Jess, I had a partial molar and a D&C on Oct 27,15. Luckily, my levels went down naturally in 8 weeks. I noticed you said you were unable to find HCG levels of others who have had molar pregnancies. When I was diagnosed, I looked as well. I found a message board on BabyCenter that has HCG drops dating back to 2008. There are also 2 support groups on Facebook that I can link to if you’d like that have been very helpful in my healing process as these women also know what we’ve been through and the struggle it can be on your health, relationships and mind. I wish you further health and happiness.

    • Richelle,

      I would be happy if you would post this info here so that others who are experiencing this can find help, too! Thank you for reading, and I appreciate your kind words. We must all begin to support one another instead of tearing each other down (the internet tends to be a cruel place sometimes) so that we can all be more aware of the fact that things like this can happen to anyone, and it is no one’s fault.

      Jess

  5. Smiling

    Thank you for writing and sharing your story with us. I was just recently diagnosed with PMP this past January. Even though my story is different than yours and have had two normal pregnancies prior to this, I know what you are going through. The loss is like none other I have ever felt. Best wishes to you and your future. We will all have our rainbows come to us one day. Until then, I feel the love and support of others going through this and it has helped in so many ways.

    • Smiling,

      I am sad to hear that you experienced a partial molar pregnancy, but happy that you were able to avoid heavy treatment. We must always try to find the silver lining in these situations, no matter how bad it gets. Everyone has a different story, and I am sure that you are continuing your road to recovery (physically and emotionally) with every day that passes. Sometimes deep wounds take a long time to heal, but we are always stronger for it in the end if we take the proper steps in self improvement.

      Jess

      • Lei

        Hi! I read your story and I just cried. I have just been informed today that I may possibly have a molar pregnancy and that they needed to perform a D&C asap to avoid further complications to the rest of my body. I was deeply saddened by this news as I have fought for this pregnancy since I was first told it wasn’t a viable pregnancy on 4/8/16. After several blood test and ultrasounds they are still unsure why my ultrasound looked irregular which made them suspect the pregnancy is abnormal and that I miscarried. They really didn’t have any explanation as to what it is they see and I was told the only way to find out was to perform the D&C so they can send it off to a pathologist to figure it out. When I looked up what molar pregnancy is it scared me to death and most especially if it turns out to be malignant and I would need to have chemo treatment. I have no family support whatsoever except from my loving husband so I’m deeply sad I don’t know who I can talk to about this. All of my friends, family and colleagues disagree with my yearning to have a big family. And I’ve heard so many unwanted and rude comments especially coming from my boss who is against me having more kids that I am unsure if I should even mention to her my situation. I have finally decided to have this D&C done under general anesthesia this Thursday coz I can’t bare the fact of being awake for this procedure and I am so scared and nervous.
        Thank you for sharing your story and I wish you and your husband the best of luck!

        • First, I am sorry to hear you are experiencing this situation. Secondly, do not let anyone discourage you from feeling saddened by this loss – it is a loss, and you need to grieve. Plus, since there are other health complications that can come with a molar or partial molar diagnosis, it is scary. Please educate your friends and family about what you may be going through, stressing the seriousness that you are actually dealing with, and perhaps they will begin to better understand. Feel free to share my story with them if it is hard for you to explain in medical terms. Lastly, you are strong. We are all made strong, and this is something that you can get through. Feel free to email me if you need to reach out for support. And finally, do whatever your doctor recommends – trust them in their profession, because that is the best chance of recovery. Stay educated, and do as your doctor recommends.

  6. Rose

    I just found out I had a partial molar pregnancy on Feb 22. I have been fortunate so far that my levels are dropping quickly already since my D&C a month ago. Because it’s relatively rare I am thankful for stories like this of other women whose experiences I can somewhat relate to. Thank you for sharing your story.

  7. Desiree

    Thank you so much for posting your experience. I am sorry for your loss, and those also that commented. I was pregnant in Jan. and by the end of the month they said it was not viable.(They thought I had twins.) I ended up having the D&C in early Feb and after testing, today they told me I miscarried because I had partial molar pregnancy. I have lower HCGs but I’m still not to <2. My journey continues. I looked all over the internet to see why I was so high in the first place and found nothing. Now that I know what I had, and I see your results, mine make sense. I am so grateful for some guidance on what is to expect next. I have miscarried before and had to take methotrexate.(NOT FUN) But I also have two beautiful girls. I can't wait to see a continuation about a successful pregnancy for you. It's hopeful for those still wanting more children.

  8. Nikki

    This came at the right time for me, like the others who have posted. I found out yesterday, a week after my D&C, that my miscarriage at 9 weeks (2/24) was a partial molar pregnancy. You’re right that there is very little in the way of support or understanding of a path for women who experience this type of pregnancy and loss. The medical articles are good, but they don’t articulate what’s really next for everyday life. Just started the weekly HCG checks today. If anyone has suggestions on other groups to follow, it helps to hear about other women’s journeys.

    Thank you for sharing your story. Seeing how recent it was, and the comments by others, made me feel less alone. Please continue to share!

  9. Shantell

    Thank you for sharing! I was diagnosed today with an invasive molar with gestational trophoblastic disease. My OB/oncologist has suggested to skip D&C and go straight to the methotrexate. I’m doing one treatment a week for 10 weeks. If that doesn’t work I will most likely need a hysterectomy. This is by far the scariest thing if have encountered. Your story really shows that there is like at the end of the tunnel.

  10. Shantell

    Thank you for sharing! I was diagnosed today with an invasive molar with gestational trophoblastic disease. My OB/oncologist has suggested to skip D&C and go straight to the methotrexate. I’m doing one treatment a week for 10 weeks. If that doesn’t work I will most likely need a hysterectomy. This is by far the scariest thing if have encountered. Your story really shows that there is like at the end of the tunnel.

  11. Alanna

    Thank you for sharing your story. I found out at 12 weeks (2/24/17) that we had miscarried. It was a missed miscarriage, as I had no signs or symptoms that we had lost the baby. They just couldn’t find the heartbeat at our 12 week appointment.

    I had a D&C on 2/27 and on 3/6 at my follow up appointment, we were told we had a partial molar pregnancy. As if losing a baby wasn’t hard enough, now we have to deal with the potential risks of this terrible diagnosis. I had my hcg levels tested on 3/6 and they were at 8351.9 – Back at my 6 week appointment when I was pregnant they were at 70,000. I hope and I pray that they continue to drop naturally (and quickly) because I so desperately want to try again. However, my doctor has advised that once I hit negative, we then need to wait 3 months to make sure they stay negative before we can even think about trying again.

    I’m so heartbroken because I so desperately wanted that baby. It was our first pregnancy and at 12 weeks we thought we were ‘in the clear’ to tell people. We had just told our parents and started telling close friends. Everything reminds me of our lost baby, everything. I want to get pregnant again, but am also terrified that this will happen again. I also hate waiting – waiting to try again, waiting to see what my hcg levels are each week, waiting to see how long it takes for my levels to be back to negative, waiting to see if I’m going to be okay.

    Again, thank you for sharing this. Since partial molars are so rare, I’ve had a hard time finding any helpful information on them. It helps to know others are in the same boat. Has anyone had successful pregnancies after having partial molars?

    • Alanna,
      I am always sorry to hear when others go through this, but I’m glad you found my information useful or comforting. I myself recently had our first child, a baby girl, and my pregnancy was completely without any complication. It was the most perfect pregnancy anyone could hope for, and we did not struggle to conceive either (once the doctor said it was ok to try again after 6 months off of methotrexate). There is hope! I promise!

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