One Year Ago Today........

I know it has been a long time since I have written. I couldn't let this one go, though. One year ago this very night(almost to the minute), my husband took me to the ER. I had been experiencing pelvic pain for a few months. {I had already seen my gynecologist(Dr JVT) in regards to the pain and he basically said that it was in my head and that the miscarriage I knew I had suffered in January was just a late heavy period because I can't possibly get pregnant because I have too much scarred tissue inside my body.} And on this particular night, it was at an all time level of pain. I was doubled over in pain in tears and my husband begged me to let him take me to the hospital. Truthfully, had it been anyone else, I don't think I would have gone. But, as I looked into his eyes, I could see his concern and fear for me. We arrived to the ER on this night one year ago at about 9 pm. To our shock, when I described my pain level and location, I was whisked away to a room IMMEDIATELY....NO WAITING AT ALL! Almost just as quickly, I was given morphine for the pain. It helped get rid of the pain instantly. I was poked...prodded...examined from every orifice of my body that you can imagine. Finally, at some point during the night(I stayed overnight for observation), we were told that I have a pelvic mass. I didn't know what that meant at all. Then we were told that they didn't know if it was benign or malignant. I don't know if it was the morphine or if I was in shock. Or maybe it's my medical background that allowed me to sit there and calmly listen as Dr Jackson explained everything. But then he said the words that really shocked us. I was pregnant. I told him that he was mistaking and that he should run the test again because my gyno that I have seen for 5 years says I can't get pregnant due to all of this scarred tissue. Dr Jackson said he ran the test 3 times and that "scarred tissue" is the mass. I'm pregnant? WOW! I was elated! Until he told me that due to the mass, the pregnancy wasn't viable. I could have gone ahead and had an abortion knowing that. I always believed myself to be pro-choice. But faced with that decision, we decided there was no decision to make. If the pregnancy wasn't going to last, it wasn't going to be our decision. So, we did NOT have an abortion. But we would not be able to treat or remove the mass unless I was in my 2nd trimester. We had numerous ultrasounds to check the fetus, and for a time, all was well. We even got to hear the heartbeat. For the record, that has got to be the most amazing sound in the world. At one time, there was even twins! Can you imagine me with TWINS? I can't!!! But, it was not to be. On July 3rd, during my 8th week of pregnancy, I started bleeding. We went to the ER once more and learned that I was having a miscarriage. There was nothing that could be done. I knew it was inevitable. We expected it. Still, you just cannot prepare yourself for this outcome. Learning about the miscarriage...experiencing it, is something I don't think I will ever get over.

We left the ER shortly after that and I commented on how swollen my left leg was all of the sudden. We thought nothing of it and figured my body was just going through the motions of dealing with so much trauma at one time....pelvic mass, pregnancy, miscarriage. That IS a lot for one body to deal with in a short period of time. Then factor in that I have Spina Bifida and I am paralyzed from my knees down, it just seemed likely to work itself out in time. Throughout the weekend, the swelling never went down and my leg hurt so much....well....from the knees up where I'm not paralyzed anyway. Luckily, I had an appointment with my surgeon at Moffitt Cancer Center(the surgeon scheduled to remove the pelvic mass, Dr Chon) the following Monday (July 6th) when we were suppose to discuss more options for the mass. My surgeon is at a cancer clinic because we do not know if the mass is malignant or benign at this time. We informed her of the miscarriage and I casually mentioned the swelling in my leg and showed her. The look on her face told me this was serious. I was immediately whisked away to ultrasound....this time to be checked for a blood clot. Even then I'm in denial. I'm a paraplegic and I'm nearly 40. I have never had a blood clot. I'm pretty active. Why would I have a blood clot? The ultrasound is clear. It's a blood clot. DAMMIT! I cried right then and there on the exam table. People die from blood clots! Then I remembered...I don't know if this pelvic mass is cancer...I could die either way. I felt so hopeless. I have had more than 50 operations in my life due to SB and THIS is what made me feel hopeless...Like THIS is what was going to do me in. 

Sometimes, blood clots still allow blood to travel through the vein. However, mine is so bad that no blood can travel through the one vein at all. And it's the entire vein that is clotted. I was put on 18000 units of a daily injection called Fragmin. It's a blood thinner.

I had an appointment with my primary care physician on July 15th. It was suppose to be an appointment for her to clear me for surgery to remove the mass. But in order to get clearance, I had to receive chest x-rays, a stress test, and an EKG. All of these were scheduled through August 17th. So, I knew surgery would not be within the next month or so. Also, she wanted me to see a vascular surgeon to check the status of my blood clot. I'm all for that! My primary informed me that the Fragmin will not dissolve the clot. It will only keep it from spreading further. So, basically, Fragmin is keeping me alive because it is keeping the clot from travelling to my lungs. Alrighty....I did NOT know that! I thought the injection was suppose to get rid of the clot. Dr Soto (My primary) informed me that clots usually dissolve on their own. But it can take MONTHS for that to happen. And sometimes, they don't dissolve at all. The person just stays on blood thinners forever to keep it from travelling. And then sometimes, the clot is removed surgically. Dr Soto wanted me to see a vascular surgeon to be assessed to get his opinion on what should be done, if anything. 

My vascular surgeon is Dr Citrin...an amazing man. He admitted me to the hospital on 2-3 different occasions to try and get rid of the clot. He couldn't because the clot is so thick it cannot safely be removed due to my paralysis. So I still have the clot to this day. 1 year later. Dr Citrin believes that I had the clot for a long time and because of everything my body was going through, it showed itself. He ended up putting in a temporary IVC Filter to catch the clot if it tried to move during surgery. Don't believe those IVC Filter commercials you see on TV. If they are administered correctly, and temporarily, they are literally life savers. 

Throughout the month of August, I had all of the testing to get clearance for the surgery. That involved a series of tests, appointments, more doctors, and exams. I sort of somehow bypassed getting clearance by Dr Soto and I think she was kinda miffed at at that. When I saw Dr Applebaum (a cardiologist) to do the stress tests, he contacted Dr Chon himself and cleared me. So I was set! I saw Dr Chon one last time and scheduled my surgery for September 10th.....ONE WEEK before my 40th birthday. The birthday that we were suppose to celebrate in Vegas would now be spent either in the hospital or recovering at home. At this point, I didn't care as long as I actually made it TO 40! I didn't care where it was spent. I just knew that Mom was coming to be with me and I had my husband. I was fine with them. 

The day of the surgery I was pretty calm. I could TELL my husband was nervous, or scared, or whatever. He wasn't himself, that's for sure. Mom was mom. She appeared to take it all in stride. Then I remembered. She'd been through this with me 50 times before. She was kind of use to this. I was calm. I didn't shed a tear. Neither did they that I saw. I guess we were all being strong for each other and just wanted it to be over. I was kind of excited, actually. I know, that's kind of cray cray. But I was seriously excited. I knew that I was going to either wake up no longer having a mass and either dealing with a cancer diagnosis or a benign one. Or I was going to die on the operating table. I was at a strange peace with either of those. Either way the pain I had been experiencing for 9 months now, would be over. I was happy about that. Damn near giddy over it. 

Obviously I woke up...in fact, that was my first words! "I WOKE UP!" I remember the anesthesiologist waking me up after surgery, pulling out the tube in my nose(I don't recall it ever going IN my nose!) and telling me that I am okay and being wheeled to recovery where I would stay for at least an hour.

I wanted to know so bad....do I have cancer? I was going to ask the recovery nurse. But, I didn't want a stranger telling me if I did have it. I waited. I asked for water, which I could have. I waited a whole hour...just watching the clock. Finally I was moved to my room. My cousin, David, surprised me. He had been there the entire time waiting with my husband and my Mom. The surgery was more than 5 hours. They all greeted me. I took a deep breath and asked, "Do I have cancer?" They all said "NO! You're gonna be fine!" And I knew I would be. No matter what happened with the clot, I would be okay. 

Recovery WAS. A. BITCH!! I was in so much pain! Abdominal/pelvic surgery has got to be the most painful. September 28th, I saw Dr Chon for the final time for my last appointment with her for a follow-up. We hugged and said our goodbyes. She hugged my husband. I cried. This woman, that I don't know, has paid a pivotal role in my life for 3 solid months, often on a weekly basis. It had been nearly 3 weeks since my surgery and I was fine. Mom was still here and we left the doctor's office and went straight to the airport for her to catch her flight back home. I think that was my most emotional day that I have ever experienced on a personal level. Saying bye to the woman that gave me life...and saying goodbye to the woman that I equated with giving me that life back. 

We saw Dr Citrin the following month to remove the filter. He tried unsuccessfully to remove the clot again. It just isn't to be. I will have it for the rest of my life. I am currently on Xarelto pills because I was actually allergic to the Fragmin shots I was on. I went to the ER one last time that month because I had cellulitis. That wasn't fun either. AT ALL. The worst part (other than it being deadly) was the antibiotics I was on. Keflex is HORRIBLE. It smells horrible. It's huge and it made me feel like ASS. And I had to take 40 of them over a 10 day period of time. But they worked. Again, I am grateful for that. 

One year to the day after my very first hospital stay and 8 months after my last ER visit, I am well. I'm healed. Tristen and I don't know if we can have children now. We've seen doctors that say we can and doctors that say we shouldn't. I'm 41 and I now only have 1 ovary and Fallopian tube due to the surgery. Having children at this late stage seems unlikely and that makes me sad. I wanted us to be parents. I wanted to give him the girl he's always wanted. Surrogacy and adoption are too expensive. To be clear, we aren't doing anything to prevent a pregnancy. But we aren't actively seeking assistance either. In some ways, I am traumatized and don't want to go through anymore medical situations that pregnancy would present for me. After all, through everything last year, I was in 3 hospitals almost 10 times. But, we've also just decided to leave it up to God and the Fates. 

I know whatever happens, we both got this - together. 

M