October 27th-7 weeks after my D&C surgery
I was looking up how long after a miscarriage should a pregnancy test show up as negative. Meaning the hcg is out of your system. It said 3-4 weeks usually. I wanted to see if it showed up as negative as there was no way I could be pregnant. And with PCOS, it’s completely normal to be irregular and have 3 months in between each cycle. When I saw it said positive 3+ weeks, I knew something was wrong. Little did I know just how wrong it was going to be. I called my OB and asked for an hcg test.
They called back and said my hcg was abnormally high and that it was comparable to someone who was 6 weeks pregnant. They said to get an ultrasound. They thought a possibility was that I could be pregnant, but I knew that I wasn’t.
I was able to be seen at a new perinatologist’s office later that day. As the ultrasound technician was looking around she was measuring different things. I thought maybe it was extra tissue that was left over that was missed. She said, “there’s something in there.” When she left the room I called Adam. The appointment was so last minute and I didn’t think to tell Adam to leave work when I did. I told him something is wrong. They are going to tell me something really bad. That it’s not just tissue left over.
When they took me into the perinatologist’s office, I sat down and directly in front of me was a tissue box. Oh no… This can’t be good. I heard the doctor outside the room and tried to make out the words he was saying. I heard the word “urgent” and I was starting to panic. This is not good. What’s taking so long. After 25 minutes of waiting, he finally came in. He sat down and was exchanging pleasantries. I asked him abruptly, “do I need to get a hysterectomy?” He said, “we’ll get to that.”
My heart sank. Panic began to set in. My hands were cold and clammy as he told me that I have Gestational Trophoblastic Disease. He went on to say how rare it is and just because you have a Triploidy pregnancy, doesn’t mean you will automatically have this. It’s caused from a partial molar pregnancy, my second pregnancy-which was not diagnosed. The Triploidy is evidence that there is an abnormal pregnancy. From what I understand is that Triploidy happens in all partial molar pregnancies, but not all Triploidy cases are partial molar pregnancies. Basically what all of this means is that I have tumors growing in my uterus, that could be cancer and could spread to other areas, such as your lungs or even your brain. The largest tumor was about 4.5 centimeters and almost touching my uterine wall. If it touches the uterine wall, it is much worse.
The perinatologist told me it’s very urgent that I get this treated ASAP and that it is fast spreading. He said the treatment plan would be most likely another D&C with chemo or a hysterectomy with chemo. I was in shock. I felt as though I needed to cry but my brain was so busy trying to process everything that there were no tears. Hearing the words cancer, chemo, and hysterectomy is scary. I thought we had reached our limit of how many devastating things that could happen in a short period of time and now this? We have had far too many of the most difficult days of our life. With the unexpected death of our son Gavin in January, to the loss of Skyler in September, to tumors, cancer and chemo. Now this doctor was telling me that there is a chance I could never carry a baby again? That there is a chance that whatever ounce of hope we had left will be taken away permanently. That there is a chance I have cancer.
As Adam was driving up I called him again with the awful news. The doctor told me to wait in the waiting room so he could come up with a plan of which hospital I was going to go to after leaving his office. I was sitting there surrounded by happy pregnant women, trying to hold back tears. I decided to step out into the hallway, let the tears flow and wait for Adam.
When Adam and I went back into the doctor’s office, he told us that he could get us in to see a gynecological oncologist on Tuesday, November 3rd. I told him, I thought you said it was urgent and fast spreading and I needed to go to a hospital after leaving here. He said he spoke with the oncologist and said that unless I had extreme symptoms, that Tuesday would still be ok. But in my mind it’s 6 days. Six days of waiting-sitting with knowing what I know. Knowing there are tumors in my uterus that are almost touching the wall and it’s fast growing. Knowing that I could have cancer. Those next 6 days were brutal and torture and all we could do was wait. Wait while I thought of all the possibilities that could happen. But most of all fearing the worst, that I would never be given the chance to carry a baby again and that I have cancer. Those 6 days were of waiting were extremely difficult, and that was only the beginning.
Tuesday finally arrived, and the gynecological oncologist first suggested another D&C and then chemo. But after looking at the ultrasounds, he said that the risk of a hysterectomy is very high due to a thin part of my uterine wall. He recommended to start chemo injections and see if my hcg levels go down and if it works, continue on that treatment. If it doesn’t work, I would have to get the D&C and chemo after. He said he would consult with his partners and get back to me that afternoon, as my case was so “unusual.” He said there should have been a pathology done and most patients know they have a partial molar pregnancy and gestational trophoblastic disease before the first D&C. He said to get a ct scan and I asked if I could get one now since I was purposely fasting just in case they could squeeze me in that day. I was able to get in to do the ct scan and left to wait for a call that afternoon.
After waiting anxiously for a call that afternoon, I ended up getting that call the next morning. He said that he and his colleagues agree and recommend to start chemo but he wants to see my hcg and ct results. He called later with the hcg results. A week before they were 10,313. Now they were 5,708. He didn’t know why there was a significant drop, but that it was good it didn’t go up. He said to do a blood draw on Friday to recheck my hcg so the results would be ready by Monday to see where I was at before starting treatment. My ct scan came back as negative for spreading to other areas. They saw a hypervascular mass in my uterus which was basically already known from the ultrasound.
On Monday, I called to find out an hcg was not done. There was a blood test done to check to see if I was able to start treatment, but not an hcg which was the reason the doctor told me to get my blood drawn on Friday. The doctor called and apologized many times and said he knows this probably doesn’t make me feel confident in everything. He was right but I was glad they were able to add it onto the order and have a stat reading. My hcg was 5,402 so it wasn’t a significant drop and it was recommended to start treatment later that day. The treatment plan is a chemo injection Monday-Friday every other week. With blood draws every Monday to check my blood count and HCG. The cycle will be repeated until my HCG is less than 5 and then there will be one more month of treatment. The chemo injections I’m getting are not as strong as the IV kind. There are less side effects. You are will not lose your hair. The main side effects are nausea and vomiting, and mouth sores from low blood count. Bleeding and cramping would most likely happen.
The reason they treat everyone who has Gestational Trophoblastic Disease with chemo is because there is abnormal tissue that grew into tumors and will continue to grow. Chemo is what stops it from growing and gets rid of it, no matter if it is cancer or not. The only way to know for sure if I have cancer is to start out with a D&C. And since I had one recently and with the high risk of a hysterectomy, it was something I did not want to do, as well as the doctors.
On Monday November 9th, as I walked into the room where chemo was given, and saw the patients sitting by their IV bags the first thought I had was, “shit just got real. This is really happening.” And although I was getting an injection of chemo and not IV, I was still scared to start treatment and thought that if this treatment for some reason doesn’t work, that could be me. They told me to find a seat. I looked around and noticed some women talking to each other and some were sleeping. I was the youngest one there. It broke my heart to see so many people going through cancer treatments. The doctor came over and asked, is this your first time? It was probably written all over my face. I felt like a lost puppy. I was given all the necessary paperwork… sign here, here are the possible side effects, here’s the estimated cost and what you are responsible for. The end date all depends on when my hcg levels are below 5, then it’s a month longer of treatment. Most likely it will be a few months, possibly the end of February. The gynecological oncologist also said I would most likely have another D&C after treatment with it being a much lower risk of a hysterectomy. For me though, it isn’t over until it’s over and I don’t feel I can have complete relief until everything is done. My first chemo shot didn’t hurt at all. It got sore as the night went on and I would soon realize the injections were going to hurt more as the week progressed. Switching arms helped but then I noticed my blood pressure being taken would start to hurt as both arms were given injections with the squeeze from it being taken.
11/12/15- Night 4 of my first week of chemo
I started to notice a pattern which made sense. My injections were at 3pm and I saw my symptoms were understandably worse in the evenings and at night. During the day I didn’t feel as bad. At night, my heating pad became my best friend…a close second to Adam. As Adam was there to help in anyway possible, his lower back rubs really helped. Along with cramping, there was also bleeding. I’ll spare you the details but what happened that night was a big scare as we were contemplating needing to go to the ER for massive clots and a lot of bleeding. We ended up going to the doctor the next day. My blood count and hemoglobin was checked and the doctor saw everything was in normal range and an exam was done and everything looked ok. It still didn’t make what we experienced any less scary, but she gave us information about when you should go to the ER as soon as possible. We are now constantly on high alert for something to indicate we would need to go.
By the end of my first week of chemo, the exhaustion had set in. The mouth sores had started from my lower blood count. The side effects were scary. In the beginning of the week, I thought, “first round of chemo, let’s do this! Bring it on!” And towards the end it turned into, “ok I’m ready for this to be over. I know there is still much more to go, but please I just want it to be done.” I knew those feelings would come back around again when another treatment week would start.
On Monday, November 16th I returned to work after being off for 3 weeks. My return was short-lived with needing Tuesday and Wednesday off from a 101 fever I had Monday afternoon that extended until Tuesday. I was put on a z-pack on Monday. I had a chest x-ray done because I was coughing a lot and it showed fluid in my lungs, so a stronger antibiotic was prescribed. Three days later after taking this antibiotic, I broke out in hives all over my legs from an allergic reaction. I stopped taking that, and finished the z-pack. So it has been a rough journey so far. I returned to work Thursday and was nervous going back with a coughing sneezing preschooler at every turn. With chemo, your immune system is not as strong.
I was called with my hcg results from Friday and then again from Monday and they were lower. To recap, I started at 10,313 on 10/27. It went down to 5,708 on it’s own on 11/3. On 11/6 it was 5,402. That number is the last hcg check before treatment. After 4 days of treatment and a week later on 11/13 it was at 2,880. And on Monday, a week after treatment it was at 1,742. On 11/23 my hcg was 383. They are going down, which means treatment is working. There could be a point where it plateaus and takes awhile for it to get to less than 5. I need that to not be the case, because every time it is not less than 5 from here on out, it adds another 2 weeks to treatment. So now, it’s continuing on and getting through the chemo treatment plan, managing the side effects, and waiting. Waiting for my hcg to be less than 5. Waiting to see if I will need another D&C. Waiting to see if I will end up with a hysterectomy.
We are upset and frustrated that this was missed. It has been told to us by many doctors that a pathology should have been done and that it’s standard practice. We said do any and all testing the day of the D&C. Had a pathology been done, we would have known a month and a half earlier that something was wrong and I would have already been on treatment. This happened with Gavin with the pathology not being done on the placenta when it should have been.
I asked the perinatologist why and he said there was a “miscommunication and the pathologist said he would take care of it but didn’t. The pathologist said it wasn’t done because they didn’t get an order.” He said ultimately it falls back on the surgeon. I talked to the surgeon and he said he always gives verbal orders to the nurse on what happens as far as testing. It is standard procedure to have a pathology done, but the nurse didn’t fill out the form for the pathology. The nurse just filled out the form for the genetics testing. He apologized many times and said this has never happened in the 15 years he has been doing D&C’s. This of course didn’t make me feel any better that of all the D&C’s that were done correctly in 15 years, mine was the one that wasn’t. He said if the pathology was done like it should have been, I could have started treatment much earlier. He also said he was trying to get policy changed in his department so that a pathology will be done regardless of if there is a form or not to prevent this from happening again. It turned out the hospital still had everything to do a pathology now. On 11/9 I was called with the results and of course, the vital information that was needed almost 2 months ago came back as positive for partial molar pregnancy. This information didn’t help me now, but proved it would have been extremely important to know when we should have known.
I also talked to the perinatologist who had ordered the D&C. He was the one who called to give us the results from the genetics test. What is hard to understand is that if a pathology was not done and it is a standard practice, the perinatologist who received the genetics report should have noticed the pathology was not there. After asking him why it was not noticed there was no pathology, he was trying not to answer the question. He kept referring back to why the pathology was not done. So after explaining to him again the question I was asking, he passed it off on his colleagues saying, “I’m in and out of the office and when I’m out of the office, my colleagues make calls for me when reports come in. So I assumed that it was done by them.” I told him gently, “the word I have heard recently the most is ‘assume’ and I feel that shouldn’t be done when it comes to someone’s health. It is very scary to hear a doctor assumed that things were taken care of, especially when they were not. It can’t just be assumed. It needs to be checked on and made sure it was done, especially if you are the doctor who oversaw everything about my D&C. It’s very hard to trust doctors when things are not done when they should have been and they don’t take responsibility for what has been done and pass it off on someone else.” He said, “I don’t know what to say. I feel bad that this happened and that it delayed treatment, although the treatment would most likely still be the same.” I said, “we don’t know that. If we would have known earlier there may not have been a high risk of a hysterectomy because the tumors wouldn’t be as big.”
Had the pathology been done, I would have been monitored as soon as those results came back, which is typically 3 days after surgery. My hcg levels would have been monitored. I would have started treatment right away. The fact that there was Triploidy meant that it was an abnormal pregnancy. No one told me to follow up. The perinatologist I saw 3 weeks after my D&C just told me to come back when I’m pregnant again. When the perinatologist called us with results of the genetics testing, he just told us and that was it. It frustrates me beyond belief that doctors are not doing what they are supposed to do. Their “miscommunication” and “assumption” (as they put it) is my health. It sounds so wrong and terrifying to refer to the fate of someone’s health as a miscommunication and assumption. We trust these doctors with our health, practically handing our life over to them, and things like this happen. And there are no consequences. It was only because I took the initiative because I was curious about if I would have a negative pregnancy test that I found out any of this. And that is really scary.
Some days I feel like I can conquer this and others, I just don’t feel that strong. Not to say we won’t get through this. But trying to adjust to the treatment plan until this is completely done, and going through the treatments is exhausting. It’s really taking everything I have to get through this. We will get through this and we will adjust. One day at a time, one hour at a time, one minute at a time. That’s all we can do.
It has been extremely difficult during the holiday season that should have been Gavin’s first, but instead it’s our first holiday season without Gavin.
This Thanksgiving, we should have had Gavin in our laps telling him, “You are 10 months old today. We are so thankful for you.” This type of loss is not just a one time event that you “move on” from. This type of loss stays with you for the rest of your life. To lose your child or children is to lose your future and what should be. I still have trouble with the word “hope.” I still feel I don’t really have it, because I feel I can’t really leave it all up to hoping it will all “work out”. Because it hasn’t. And it doesn’t. And sometimes…or many times, horrible things happen to good people. I may not feel strong because I don’t feel I have a choice. But I am a fighter. My husband is a fighter. We are fighters, just like our son.
If we have gained any sort of knowledge though all of the pain, utter heartbreak, and devastation of what we have been through this year and are continuing to go through, it is to not take life for granted. Though I would much rather not have any of this knowledge if it meant Gavin was here with us today. We know that anyone in our life can be taken from us at any moment. We know loss. And not just any loss. The death of our child. Our 3 day old baby. Our second baby that would have been due this April.
Let me clarify that I am not saying we are forcing ourselves to have gratitude. Because gratitude does not erase grief. And telling people who have faced tragedy and the death of a child to have gratitude is another platitude that does not help. That is not what I’m saying. This is not directed at those who are grieving.
Since Gavin died, when we see people with their babies or kids, we think just how lucky they are. Some may not even know it. Hug, love, and appreciate your children. Let them know you are there for them. Because there are many people who are unable to do that. Be thankful that you have a baby that will not stop crying, because your baby is still there with you and there are many who would give anything to hear the sound of their baby’s cry. There are many who would give anything to be up all night with their crying baby but instead are up all night because their baby is not with them. Please do not let the small things in your daily life turn into complaints. Because some only wish those small things could be their biggest complaint. Please appreciate your health, because you never know when it will be compromised.
Please, appreciate what you have, because there is someone, somewhere who would give anything to have it.