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!
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