Tonight’s post is of a really personal nature, feminine type of stuff, so men if you don’t want to hear about it, close out now or be prepared to skim. I really didn’t want to post about it at first, but as the week has gone on I felt like someone out there needs to hear about this part of my experience.
Back in August, Dr. Ari told me that my menstrual cycle would come back (it has been gone since March, due to chemo). At my last 6 week checkup in September, he was kind of surprised it wasn’t back yet, but assured me it would come back. Wishful thinking on my part let me kinda get used to the idea that it probably wouldn’t come back before my hysterectomy on Nov. 14th. Well, guess what? Friday, was the day! It came back, with a vengeance or for one last hoorah! Friday and Saturday weren’t too bad, just the normal cramps and flow. By Saturday night though, something was definitely different, and it scared me. I couldn’t stay away from a bathroom longer than 30 minutes, I was bleeding that much, it was deep red and I wasn’t cramping anymore. I barely made it through the church Halloween Party, trying not to bend or lift or move too quickly. Missing out on most of the activities, and oh so ready to head home as soon as the trunk or treating was over (we are usually one of the families that hangs out to help clean up, not that night!) We rushed home, as we drove I texted my mom to see if she thought I should call my doctors or just let it ride until morning. My body has never gone through the actual process of a miscarriage before, I’ve had to have 4 Dilation and Evacuation for Incomplete Miscarriages because of it. And all but one of my pregnancies have ended in C-section which in my case also takes care of most of that kind of thing. So, I had no idea if this was too much or about right. I knew I wasn’t pregnant, but it could have been about 6 months of uterine wall built up. I figured my mom would have a better idea on that kind of thing. She told me to go ahead and call Dr. Ari, and let her know if she needed me to come sit with the boys while Shawn took me to the ER.
I called Dr. Ari’s cell number, no answer, so I left one of the most embarrassing messages ever, especially because I figured he would probably just have me call my Gynecologist instead. After I left the message on his cell, I called the office phone to see if there was a Doctor on call, there was. I talked with that Doctor, can’t remember his name, but again for me a super embarrassing phone call. I felt like a girl having her first period in middle school all over again and the phrase “No, you cannot bleed to death from your period,” from in our Puberty lessons, came to mind. Ugh!
I was counseled to talk with my gynecologist. So, I called their after hours line, talked with a very friendly and understanding woman doctor (much more comfortable and less embarrassing). She asked me a few questions about my medical history and specific questions about my condition at that time. She explained that it was normal for me to have an extremely heavy flow, basically it was like having a miscarriage but with no actual pregnancy. She was kind of surprised that it came back while on Tamoxifen, but admitted that she wasn’t really familiar with how that specific medicine worked. She told me to just stay home and relax unless it got worse or I experienced pain or feeling extremely dizzy or faint. That phone call helped alot. I went to the store for some thicker “supplies”, I would have sent Shawn but I wasn’t really sure how to explain to him what I needed or where exactly to find it, I wasn’t even sure myself. I found what I thought would work and rushed home again. I then put on some comfy clothes and chilled on the couch watching movies with Shawn. Awhile later I received a return call from Dr. Ari, he agreed with the advice from the on-call doctor. I was able to relax a bit between trips to the bathroom, which was still every 30-40 minutes. I was so tired, but I didn’t want to go to bed yet, worried that I would make a mess of the sheets, the pads I got weren’t going to hold enough for that long. I finally gave in and grabbed a towel for underneath me, and one of my son’s night time pull-ups. It seemed to work out ok. But now I was gripped by the overwhelming fear of bleeding to death while I slept…in my mind these were such irrational fears, I kept apologizing to Shawn as he held me while I sobbed again for the second time in a week. I asked him to say a prayer for me, I’d been saying them in my head, but as at other times in this journey, I was seemingly beyond the ability to vocalize to my Heavenly Father. He prayed for me, reassuring me again that the worries I was having were NOT irrational. I was able to regain my calm. As I lay there finally feeling like I could sleep, I mentioned that if things didn’t change before morning I didn’t think I would be able to make it to church, he just said, “We’ll see how you feel about it in the morning”. I slept for about 4 hours, then had to get up to pee…I soaked through the pullup. It wasn’t slowing down, it had just pooled. I got myself cleaned up, put on another pull-up, and went back to bed. The alarm went off a couple hours later, and it happened all over again. There was no way I was going to make it through a ride to church, and I just couldn’t stand the idea of dealing with it AT church, anywhere away from home really. So, I went back to the bedroom, told Shawn, he had me go ahead and stay in bed, seems it didn’t seem to be as traumatic in that position. I was in bed until around 10, when I decided to see if lying down actually made any difference, plus I was fidgety. Being up and about or sitting on the couch didn’t really make much difference, I didn’t dare lift anything or stand too quickly or move around too fast at all, though. After about a half hour, a thought came to me, I needed to call my hysterectomy specialist, he may need to know what’s going on and might have more insight that I need, afterall he is more familiar with special female circumstances and cancer stuff, too. I called the office line, got ahold of the on-call doctor there, Dr. Apia. She was very informative as well. She was also a bit concerned about how long this had been going on now. The doctor I spoke to the previous night had given me the right advice, but now the longevity of the issue was becoming a concern. She said typically they don’t like to have anyone bleeding in that manner for longer than 6 hours, but in my case the timing was a bit different. I was then told that I should wait until around 3 o’clock, if it didn’t let up by then I needed to call her back, I would need to go on over to the ER. At that time, she would go ahead and send orders over to the Good Samaritan ER, for bloodwork to check my hemoglobin and an ultrasound to be sure there wasn’t anything abnormal causing me to bleed more. She then explained that even if it all turned out to be “normal”, I still needed to have my hemoglobin checked, because of my already compromised immune system and my already lowered blood counts from chemo and radiation. Monday morning would be fine for that, but if the condition persisted tonight would be better. I sent my parents a couple of quick texts (they were at church) to let them know I would probably be needing to head to the ER in awhile, and asked if they could call me as soon as church let out, “no rush”. It was around 11:30 at that point. When they called me, I explained the whole thing to my mom, and then asked if they could do me a couple of favors. One, I wanted my mom to take me to the ER, it’s just kind of a mom and daughter thing…Shawn would have gone if I wanted him too, and I usually do, but this was going to be embarrassing enough…having to re-explain this whole thing over and over again, and then there was the boys. I needed him to be home with them. Two, I needed some Depends style pads, I was almost out of the kids pull-ups. I broke down crying again, when I had to say the words, “no, thick pads won’t work, I’m soaking through Chris’ pull-ups at this point”. Saying things out loud, totally makes them more real! Shawn, who was sitting on the couch next to me, squeezed my leg lovingly as I continued to explain to my mom what I needed. I felt horrible having to ask for these two favors…it meant “breaking the Sabbath” to go to the store (sort of) and also meant causing my mom to miss my nephew’s birthday party that evening, so she could drive me to the ER. She was totally understanding and willing to do both. Love you, Mom! After I got off the phone, Shawn pulled me to him…and I bawled again! I was able to calm back down, and realized I probably ought to ask for a Healing Blessing. So I asked Shawn if he could do that, and if it was okay if I asked my Dad to assist when they came with the supplies. Both were more than willing. When my parents brought the stuff over we chatted for a bit then I got my blessing, which was full of reminders “the thoughts you are having are not irrational” and “listen to your doctors”. I knew I was going to be okay, but nothing in the blessing said that this issue was going to be taken away. In fact, I felt that I knew at that point I was going to have to make that phone call at 3 and I was going to be making a trip to the ER. I felt better about it all, and even less nervous about having to explain this whole “embarrassing stuff” to each new person along the way. I even felt like I had enough clarity of thought to explain it well and with confidence.
Well, we still hadn’t done our annual family pumpkin carving, so I mentioned to Shawn that I would really like to do that now so I had something else to think about while waiting for 3 to roll around, and the next day was Halloween after all…Another Holiday or family tradition messed up by my stupid Cancer! I wonder if I’ll even get to GO trick or treating with my boys! Shake it off, we’ll just see what happens and work it out.
Really long story shorter, ha, I did end up at the ER. It was just like any ER visit is, a lot of waiting and such. But the staff was very attentive and helpful, never once did they make me feel like I had wasted my time coming. The ER doctor had the orders from my On-Call Gynecologist. They measured blood pressure, drew blood, performed the ultrasound, looked at labs and images, then measured blood pressure again. My hemoglobin was lower than it should have been, back to a 9.7, like it had been in early September during Radiation Treatments, but not low enough to admit me to the hospital for fluids or transfusion. My ultrasound was normal, just thicker uterine lining as expected, no other reasons for the heavy bleeding. The suggestion was to go back home and rest, based on the ultrasound the bleeding should let up within the next couple hours, and if I wasn’t already light headed or having other signs of severe blood loss I would be better at home than in the hospital. My hemoglobin was low enough to cause concern though and the ER doctor insisted that I contact my Gynecologist the next morning to get another set of blood work drawn within 48 hours, my numbers could still be going down and they needed to keep on top of that. So we were set loose, with the another assurance that this wasn’t a wasted trip. My bleeding had eased up by the time we headed home, and by 8pm it was almost back to what it should have been for 3 days out. Around 9pm I received a call from Dr. Apia, following up with me to see if I had received any relief and to tell me more details from the ultrasound scans. The thickest part of the lining was mostly gone by the time they did the ultrasound, so that was the main reason they felt sure that I would be okay to be sent home. She repeated the need to get additional blood work drawn in the next 48 hours.
I wasn’t able to get ahold of Dr. Tovar on Monday, he was in surgery all day, but I did get the okay from his staff to use my standing orders from Dr. Ari to get my bloodwork done on Tuesday morning, and just have them fax a copy to Dr. Tovar as well. I also already had an appointment with Dr. Ari scheduled for Wednesday morning and Dr. Tovar for Thursday morning. So, it would all be taken care of, we would all chat about it and see if anything else needed to be done.
When I went to my 6 week checkup with Dr. Ari, I made a point of telling the ladies at the front desk that I had blood work done the day before that Dr. Ari would probably need to see before speaking to me. They thanked me and agreed that he would want to see them, they hadn’t seen it come across the fax yet, so they called Labcorp right away. As I sat in the exam room waiting for Dr. Ari to come in, I heard him coming up the hall and I knew he was talking about me, “Oh wow, she’s really anemic!” He came in and we chatted about what all had happened since the phone call on Saturday night. He said that I was very anemic at this point and we would need to watch that. I am at a 7.9. I should still be okay to have my surgery in two weeks, but if my levels don’t increase before next week they would “need to give me blood”. I don’t know why, but that kinda struck me as funny, almost as if they were just going to hand me a cup of blood to drink. Weird sense of humor, sorry, but it did sound oh so much better the way Dr. Ari said it, versus the way Dr. Murdock bluntly approached it back at the beginning of September when I was at a 9.6. In fact, it was just kind of a passing comment. He told me that I needed to start taking two iron and one vitamin C pills a day, and increase the iron rich foods I eat as well, and stop taking my multivitamin for now (it could make pinpointing the cause of improvements/decline harder). I would need to take the time to go over to the lab at Central Baptist on the 9th to get a new set of blood work drawn (I’ll be there with Shawn for a procedure he’s having done). The lab there will be able to send the results directly to Dr. Ari that day. From those, he would decide if he needed to schedule me for a transfusion before the week is out. So…I have a week to get my levels back around a 9.
We then went through my list of questions in my notebook:
Am I considered in remission, a friend asked? That term is not really used in Breast Cancer, technically as soon as I had surgery I was in remission, all cancer was removed from my body…but that doesn’t indicate treatments are over.
Will I still be taking Tamoxifen after my hysterectomy or do I need to switch to the other daily Estrogen blocker? I need to request Dr. Tovar remove my ovaries too, and with that being done I can be switched to aromatase inhibitors the less risky estrogen blocker, the one typically given to women after menopause to stop estrogen production, not just block it. Dr. Ari is sending an official counsel to Dr. Tovar as well. Stop taking the Tamoxifen 7 days before surgery, and then in December we’ll discuss when the new prescription will be given.
Do I need to have my 4 still discolored nails checked, or are they okay? He looked at them and they are fine, just discolored, no infection or fungus (shudder).
What is my normal hemoglobin level, so I know next time someone asks me? 10.3 ish
Bug Bites? He is pretty sure they aren’t bug bites, they’re hives. Pay attention and avoid “new things” on your skin.
He then put in orders for blood work to be done before my 11/23 infusion and my 12/13 infusion as well. And then I was off to the Infusion room.
I am continuing to improve, but I have been worn out and tired the last few days, and have been working on this post off and on…sorry it’s not my usual caliber. But, I did feel I needed to get something out, and boy did I spill it all on “page”. I hope this has helped someone. If nothing else it has been therapeutic for me to get it out.
Things I learned with during this trial:
I’m still looking up, although, it was awfully hard for a couple days there.
I did get to go trick or treating with my family and some close friends, which was more relaxing than in years past…I think because I made myself walk slowly and be okay with a late bedtime for the boys….but I think it was also the company we had and the fact that I “almost didn’t get to”.
I am continuously in awe of my husband!
I have also been trying really hard lately to take in the moments of good with my kiddos too, to savor them.
I will have some small needs the week of my surgery, and maybe the week after. I will get those posted as soon as I can. But, I’m being told it will be much “easier” on me than the mastectomy/reconstruction surgery was. Hopefully…I could use “easier” again 🙂
Oh, and I have a new friend who has just started this journey this past week. I know now that I can still manage to get in some helping moments here and there for her too, which kept me sane, looking back on my own stuff while chatting with her reminds me of how far I’ve come and that it was and still is worth it!
Dalynn's Road to Recovery 