After the MRI, it was clear that I needed to have surgery right away. They gave me a few days to get the blood work and paperwork done and surgery was on Friday. The largest mass was under my uterus and larger than a grapefruit. The pictures, yes there are pictures - eww), show that it was larger than my uterus itself. The doctor said he stopped counting the other masses at 19 or 20. Many of them were adhered to my organs and intestines. So the surgery consisted of removing them, repairing adhesions,removing the uterus, and removing the left ovary (which was found encased in fibroids and endometriosis). They keep saying that I have something rare, a non-cancer that is acting like a cancer. The pathology showed abnormal cells, but it looks okay. I don't really understand it all. It feel like the doctors really don't either. My outer incision is about 6 inches and similar to a c-section cut, but the inner incisions go upwards and up to my breastbone. I have been very uncomfortable, but adjusting. I tried to do a little too much at first and was sent back to bed. I seem to be moving around a lot better now.
Getting out for some fresh air a few days after surgery
My attempt at humor on my first out of bed outing
My brother showed up in full pirate regalia to see me
Beautiful flowers sent by framily that arrived when I got to recovery
I re-started the Lyme infusions Wednesday after surgery. I can definitely feel the effects of that. Both positive and negative. I've been having insane episodes of sweats and chills. The other morning in a matter of several hours, I had to change my pajamas twice and my sheets three times. I think it's from the Lyme dying off. I suppose it could also be hormonal. I have one ovary now trying to balance all my body's hormones. The hope is that it will be able to do that. I have my fingers crossed. I have noticed a lot of positive changes when it comes to the Lyme disease. I'm not dealing with the cognitive stuff hardly at all anymore, I feel stronger, the pain in my joints and muscles has eased up a little bit, and I'm not falling down like I was. I think the Rocephin by IV is actually really helping. I am still herxing some, the fatigue comes and goes, the headaches are lingering and I just generally have a flu like feeling. I feel hope though. Despite the challenges, there is finally some tangible progress that brings a possible end to all of this in sight. I know that after the iv infusions stop, the symptoms could return, but I'm choosing not to dwell on that possibility. I think one of the hardest things is having a day that feels almost normal and getting excited and then that day being followed by a day I have to stay in bed. I'm tying to stay in the now and just be present with whatever shows it's face that day.
My attempts to stay positive are at least not totally futile. However, I am dealing with some major emotions around the hysterectomy. I felt so powerless around the surgery. I can't believe my body would be growing these things so rapidly no matter what I've done to try and stop it. I had hoped so intensely that the Lyme treatment might repair my immune system issues and stop whatever imbalances were causing all the 'disease'. When that wasn't the case, it was so disappointing. I know that not being able to have children isn't the end of the world, but it is painful. I knew that this was coming and still it felt like such a shock when it actually arrived. I was hanging onto the idea that there was still a miracle possible as long as my uterus was still in my body. The miracle will have to come in another form. I know that adoption is an option. I am living proof that blood and biology do not determine family. I still can't shake the sadness that comes around the subject and I also know that I haven't begun to feel the emotions surrounding it. I feel them coming. As silly as it may sound, I feel like the surgery has, in a sense, threatened my femininity. I worry about all kinds of crazy things. I think it will just take time. Time and healing will hopefully transmute the pain of all of this into something empowering and positive. For now, I have to hang on for the ride and do so with the strength I can muster. In the meantime, I am sorry to my friends and family for the distance, mood swings, impatience with you and myself, and anything else that's less than ideal. Some days I see this illness, these illnesses as an opportunity or a calling. Other days, I feel sad that I'm not the one posting pictures of my adventures, of meeting people, of my pregnancy, my wedding, my children... Some days I feel a little gipped. I am so tired of feeling sick, of being poked with needles, of being cut open, of taking pills, of just not feeling good. I had not imagined my thirties this way. I know there is a light scattered throughout the tunnel and waiting at the end. But, the dark parts are inevitable too. Life never looks the way we thought it would.
About a year ago I did some very intense work around the childhood abuse stuff and had let go of some things I had been holding onto so tightly for so long. I felt so much relief, but there were these places inside myself that had been filled with them for so long. A very wise woman told me that it would do me good to think of those empty places and start to fill them with color and beauty before something else grew there. I see that need now too. My uterus is gone. Parts of my life are gone or irreversibly changed. I feel sorrow. It's important to grieve and honor that. I feel it is also time to put some color there, to birth other things, ideas, projects, art, gardens.... I'm trying.
