FYI: Background info is long....
I am a homeschool mama of one intense DD with anxiety. I have had multiple health problems in the past but in the last year I have been making huge strides in my health, both mental and physical. I turned 40 in December and I feel like I've been having a personal renaissance. Things were going very well until I had a bad headache on one side for 7 days straight.
My ND is very cautious and ordered a CT scan of my head. Good news, no aneurisms or clots or stroke, etc. Bad news, seems to be a tumor behind my left eye. Had an MRI. Not conclusive - sent to a neurosurgeon for a biopsy. Over the next few weeks, I endured a lot of ambiguity (which was very hard due to my anxiety/panic, depression and OCD stuff) but I feel like I have been enduring everything with much strength and grace - even surprising myself.
I had trouble with the health system a bit but I stood up for myself and straightened things out, taking control where I needed to do so. The neurosurgeon I ended up with was good and took a team approach to everything which I was impressed with. They decided it was too risky to do a CT-guided biopsy due to the location of the tumor - within the sphenoid bone between my left eye and the temporal lobe of my brain. So technically, it wasn't exactly a brain tumor, but rather a bone tumor in a very odd place.
I ended up having it removed last Friday (well, mostly removed - she couldn't get every cell due to the bone being structurally supportive of my eye). But she got most of it and the initial pathology suggests non-malignant (really hope it is) and may not be aggressive. There were reportedly not too many blood vessels feeding it so not much blood loss. A more complete report will be coming out soon and I will find out if they need to zap it with radiation or something to kill any remaining tumor cells. I just got released from the hospital on Monday. I am on a ton of meds and still off my naturopathic meds (including supplements in place of an SSRI) but I am doing mostly OK. I suspect I may break down a bit in the next week or two which I think would be normal for this abnormal situation I am in.
My DD is almost 8 and is in recovery from terrible anxiety and depression from 6 months ago. She's been doing so well; I've really been impressed. My mom is out here from out of state to help me and DD though she has trouble driving in the big city. DH has been able to use a lot of flexibility in his schedule and has attending the doctor appts with me with the surgeon to support me. I've done many scan appointments on my own. My homeschool friends have been taking DD and leaving me free to attend to my needs.
I was astranged from my Unitarian Universalist church but I have recently reconnected with them. I have general community support there. I have found it good to be scientific about dealing with this health issues rather than philosophical. I find science comforting and am an atheist who appreciates paganism. Though I have religious people in my life and I do really appreciate their energy and prayers even though their beliefs are very different from my own. It's interesting to observe how different people react to my situation. I like trying to view things as an observer, partially because otherwise I get overwhelmed with emotions. I am an INFP on the Meyers-Briggs.
So in addition to my general stuff, I am worried about my parents. My brother has multiple chronic pain and disability issues infused with a hefty amount of bipolar I and schitzophrenia. He was hospitalized 3 times around the holidays for suicidal behaviors. My dad has his own health issues right now and he feels like he can't even leave the house because they moved my brother back in to their place (he is 37). They have so much on their plate right now dealing with all that and my stuff now and my mom's parents whose health is failing. Maybe I'll start a different thread sometime about my brother's issues.
I guess I am mostly just wanting some support. I feel good about my medical options out here. I am not sure what to do for my parents. At this point, I am rather uninvolved, which is good. I like psychology so I like to be there for them and I really appreciate all the support I have been getting.
But I have trouble receiving compassion from people. I'm getting better about it, but it's hard to be OK with being sorry for myself. Not that I want to get in a rut that way, but I do need to grieve a bit for my own things sometimes, you know? And some days, it's just so surreal that I had a tumor in my head. Who the hell gets a tumor like that? It's one of those obscure things that happens to a friend of a friend at work or something, but in this case, it happened to me. It's just so weird.
My hair has been shaved a bit. I won't be belly dancing for awhile but now I have time to work on my new costume. I like to stay positive yet realistic whenever possible - I find it helps me to avoid unnecessary drama.
The doctor made a bit deal about cutting me hair early on. I had just gotten my hair grown out long but I will have to decide how to let it be after I get the staples out of my head. Right now DD says I look like Frankenstein's bride and it scares her. But hair will grow and I can buy a scarf or two. Maybe I'll do a punk color just for fun for awhile after I am cleared to dye my hair. We'll see. The doctor said to wait until the surgery healed to determine what to do with my hair. Frankly, I'd be OK with being bald and using a wig if means I am here on this planet for DD.
I am so grateful and happy that my mom is here; it's so helpful. We've had some issues on and off since I've had DD, but when we talk about her childhood, it helps me find more of who she is. (She lost her mom at age 4 when her brother was born.) My mom still has that little scared, lost child inside her. And she has body issues which I feel like I am actually helping her a bit with. Mom puts herself down constantly; it is so sad. But I am helping her see it and trying to stop the pattern a bit. We are all trying to break out of a cycle of abuse which stems from long ago. Anyway, I am really glad she's here for DD and me. And I'm a bit scared for when she leaves but she'll be here until at least the 7th. I should improve a lot by then. Maybe even be able to drive though right now that seems so far away. And then I'll need to activate my other more general support system.
Anyway, I know this is long. I may post a blog link in my siggy or however they do that here. Thanks for reading.
Oh, gosh, mama, that's major surgery. The great thing about compassion is that you don't have to let others feel compassion towards you; they can do it all on their own. And if there's ever a time to allow yourself to feel all that compassion, it's now. I'm glad that you've reconnected with your church -- hopefully they can provide you with support during this time.
I'm also glad to hear your daughter is doing ok through all of this. She must be very strong to be dealing with her own anxiety while watching her mama go through surgery and recovery. I'm not sure what else to say about the rest of your family -- we all have to help each other out as we can, when we can. Don't feel bad about focusing on your own healing or receiving the care that they give you. You're family, too.
I wish you a speedy, speedy recovery! Take care of yourself, and let us know how you're getting on.
Thanks for the replies. I'm doing mostly OK. I will probably make an appointment with my therapist soon to discuss some of the family issues and to hash over my own recovery stuff. I've also advised my mom and dad to see a therapist to help them sort through the stuff with my brother. I am aware that I can't fix it. I hope they can find some realistic boundaries for themselves because they are suffering. I think they could use some outside help.
For my own stuff, I am doing pretty well all things considered. I've found a lot of support within family and friends both old and new. I feel very supported. Part of this, I go alone and that's OK. I may do some journaling, too.
Wow, that is amazing that you just had surgery and already are having coherent thoughts. What a big heart you have, worrying about others in your condition. I'm also wishing you a fast recovery and good things to come :)
I am lucky that my tumor was within an inner skull bone rather than in my actual brain. The tumor was just starting break through the bone to touch my brain, I think, but was not yet putting pressure on it. So that was really good. My surgeon didn't even have to open up the cover to the brain so my surgery was a bit less complex than many she has to do. I think this might help me think clearly and will make my recovery easier than others. I didn't need occupational therapy or anything. My health team has been good, too. I find out Tuesday if I need to have radiation or any other treatments at this point. I will need more scans in 5-6 weeks too. It's so amazing what they can see without even opening you up these days.
I have been able to play the piano OK, which was nice. I was looping out on pain meds at the time so it was a bit weird to be playing like that, but at least I was playing. I haven't tried drawing yet, and of course, I cannot exercise, dance or even drive yet. But I have a good support system in place. I'm a little nervous for when Mom leaves, but she's still here at least another week and I should improve a lot in that time. The docs are weaning me off some steroids right now. I have to take anti-seizure meds for 6 weeks. I have not had any seizures but it's good to avoid starting, you know?
I am in a bit of pain today but not overwhelming. I will take a nap soon. Still trying to get my meds figured out so that they don't make me sick but I think I just wasn't eating enough when I was taking them. I am hoping to have some company soon or just go with my mom to the grocery for a few minutes to get out of the house. And in reality, I may not be ready to go anywhere yet, but it's nice to at least think about getting out.
And if I sit here and dwell on my own stuff, I'll go bonkers. My daughter is insisting that I wear a hat or something to cover my incision which gets uncomfortable after awhile, but we're working around it. I let her know when my head is uncovered and she asks me to cover it up before she comes too close. This makes me a little frustrated, but I understand. I'm sure it's pretty freaky for her; I told her I can go as the bride of Frankenstein for Halloween this year. Hopefully it will look better after I get the staples out next Tuesday. And I will get some scarves to wear and maybe do something crazy with my hair just for fun, though I can't dye it for 6 weeks. I had just grown it out so I still have a lot of length but they shaved my head in the front and across the left side to behind my ear. They say it will grow in quickly. I'll decide what to do for my hairstyle later as the doctor advised. I've had it short many times, but it just finally got long so I was hoping to keep it long for belly dancing. Oh well. I can go with the flow. It's just hair.
Thanks for the hugs and well wishes.
I am getting my pain meds sorted out OK now so I don't feel sick anymore. However, this weekend, I was rather depressed. Mom is still here and a friend stopped by yesterday but I have been feeling very isolated. I am used to being very independent so I am feeling stuck right now. I know this is fairly normal but I still don't like it.
DD is still dealing with things fairly well. I go tomorrow to get the staples out and to find out what kind of tumor we have been dealing with. DH will come to my appointment with me. Once I find out if I need further treatments, then I guess I can at least start making some tentative plans for the summer. Everything has been on hold for the past two months and I think that holding pattern has been making things hard for me. I have trouble with ambiguity in genergal due to anxiety, but it's been really hard lately.
That and I am just kind of lonely. So I am trying to find some ways to get back into the swing of life while I can't belly dance or drive or work out. I used to participate on an artists' website scavenger hunt where we "collect" hunt items by drawing things on a weekly list. I decided to participate this week and see how it goes.
And I am going to get back to work on my next dance costume while my mom is here to help me out a bit. I already started it, but I am not very good at sewing. I am going to ask Mom to help me with determining the best way to piece the base part together, then I can decorate it. I'd love to have my new costume ready to wear when I am able to start performing again.
So basically after two days of being depressed and crabby I am trying to pull my attitude out of the toilet and get back to life again. In baby steps. As directed by the doctors.
I went for staple removal and pathology report today. I got some of the staples out but not all them. The incision still healing on part of it. I go back Friday to hopefully get the rest of the staples removed.
I saw the doctor too, and had expected to have results on the pathology report, but apparently I have a difficult case because the pathology is coming back as inconclusive at this point and they have sent everything to the Mayo Clinic for further analysis.
So I am still waiting. It's hard not to know what is going on. I could end up with watching and waiting on things, or I could end up with radiation or even another surgery depending on how things turn up on the reports at the Mayo Clinic. There is also a possibility that this tumor was inflamed because part of it may have been dying when they took it out. Everything is up in the air at this point and it's all just weird.
Now I am tired and loopy and I still feel lopsided and in a state of slight disorientation. This is normal from having this type of surgery and from getting off the steroids they prescribed for right after. Hopefully I will start feeling more normal soon, but at this point, I can't drive yet and I am forgetting things if I don't write them down. My DH does this naturally, but usually remember everything about everyone's schedule, so while this is normal for my situation, I do not like it at all. My mom is still in town and is willing to stay longer to help me. We may ask her to stay if I still can't drive by the weekend. However, we've been getting on each others' nerves a bit so I'm not sure if I want to ask her or not.
I guess at the very least, I am learning a lot about living with ambiguity though, which has never been easy for me.
Sending you good thoughts and wishing you a speedy recovery! Ambiguity is really hard, and I can't imagine what you must be feeling right now with so much up in the air.
As a side note - if you ever wanted to compare notes on your brother, my mother has schizophrenia (schizo affective disorder) too. It's always nice to find someone to relate to on that. I only know 2 other people who have relatives that have this disorder.
It sounds like you are doing better than expected and continuing to improve. I'm really glad. Keep writing. :)
My advice may not be appropriate for you. That's ok. You are just fine how you are and I am the right kind of me.
I got out of the house today and helped address some fliers for a belly dance retreat my teacher/friend runs in August. And tomorrow (Friday), I go back to the nurse to hopefully get the rest of the staples out. I am looking forward to it now that I know it's not so scary or painful to have them taken out. Plus they're driving me up the wall. I'd really like to be able to lay on my left side for at least a little bit.
This morning when I got up, I had about 5 minutes of clarity of thought and not feeling like I am reeling or sliding off to one side. Then I started feeling off again. But I think part of it could be all the meds they have me on right now. I know at least two of them mention dizziness as a side effect, and that's not even including the pain pills. And I only needed one of those today. I am trying to get down to just tylenol and ibuprofen.
MamaofLiam - I may take you up on your offer to compare notes on relatives with schitzo affective disorder. My mom thinks my brother is getting really paranoid lately.
Anytime! I'm here. It would be good for me too. My mom recently decided to experiment going off her meds. That was fun.
Hugs to you.
I am healing up slowly but surely from the surgery, but I still haven't found out what it is yet. Hopefully, Monday we'll have some answers from Mayo. I'm scared about what they may find and also about what if they don't figure anything out. I've been rather depressed the past couple days but have been better today.
My mom went home today, but I am really glad she stayed the extra week. I have been able to drive a couple times now. I wouldn't want to go a long distance at this point, but if I'm not taking the pain meds at the time, I feel OK to drive. I seem to not feel too lopsided anymore. That's a relief; it was getting really annoying.
The doctor verbally opened the door about the possibility of another surgery to take out the rest of the tumor which was left behind, depending on what is found. That would be a more complicated surgery, with reconstruction required as the bone it's in is kind of necessary for the structure of the eye. She also mentioned the possibility of seeing an inflammation specialist or something. I was pretty out of it at the appointment since it was only one week out. Now I am out 3 weeks. I saw the nurse on Friday. She checked my incision and it looks good. All sealed up and no staples anymore. Yay! And after next week, I can even go swimming and use real shampoo instead of baby shampoo. My hair is curly and has been rather frizzy lately. And that's aside from the weird shaved part which is growing pretty fast. I can still comb it over and no one can tell I had surgery at first glance, but as the shaved part gets longer, it could start to look a bit weird.
The nurse also said I could wear makeup. Normally I only wear it for belly dance performances but I am thinking about starting to wear makeup again just so I don't look so dreary and so I feel a little better (prettier maybe?). Besides, my DD is very interested in makeup and I'd like her to see normal daytime makeup for a change instead of only stage makeup.
Today DD has been a complete pill. I think she's had about enough of Grandma. Plus I think this whole thing has been very hard on her but she refuses to talk about it. She has missed having her regular therapy sessions the past two weeks and her behavior is looking very familiar. She has anxiety and depression issues, so I'm glad we have therapy back on the schedule for Tuesday. I see the same therapist sometimes, but it's been awhile. But I think I will book some appts for myself now that I've met my deductible. This has been hard for me as well. I also worry about DH sometimes, but he seems to be handling things well. We'll see how things go after the Mayo's pathology reports come in. He may flip out a bit depending how that goes.
And at our last visit, we learned that my neurosurgeon is pregnant. I'm not sure when she is due but I suppose I may end up with a different doc for some follow up stuff depending how far out I have to have appointments. When I was pregnant with DD I could hardly do anything. I felt sick 24/7 and had no energy what-so-ever. I know everyone is different but it's hard to imagine that she was able to do brain surgery on me while pregnant, when I could barely do my 10-hour a week part-time job caring for senior citizens.
At our last doctor visit, she mentioned possible inflammation within the tumor. My ND has tested me several times for an inflammation marker for cardio-vascular stuff. She's been baffled because it's been jumping around between acceptable numbers and higher risk numbers. She even consulted a cardiologist and I had some heart tests after I had palpitations (which ended up being because I was very anemic). All my heart stuff has checked out fine, so I'm wondering if it's possible the inflammation marker test was reacting to the tumor in some way, because it was connected with a few blood vessels inside the bone.
Anyway, it's late. I'm tired and I tend to write too much. So I'll post another update sometime after the appt Monday depending on how I feel.
Oh, and I may start another thread about the issues with my parents and brother. It's just not a good situation any way around it.
I had another post-op visit with the doctor yesterday. The results from Mayo and everywhere else have come back negative. No sign of tumors, benign or cancerous, no current evidence of infection, no blood work indicating any auto-immune diseases. No answers what-so-ever. The neurosurgeon said at this point, we may never know what it is. She said there is a tiny possibility that if she took out the rest of the lesion that they could find something, but she doubts they would get different results because she feels she sent in enough of a sample. And she doesn't think it's worth putting me through another surgery unless the remaining lesion begin growing again. Fine with me. I am still slowly recovering from this surgery.
Now the plan is to have another MRI in a couple weeks. If the scan shows growth of the remaining lesion (very near where the eye muscles attach to the bone), it would likely mean another surgery, which would be more complex and include reconstruction of the eye orbit. Hopefully, this won't happen.
But if it looks stable as compared to the post-op CT scan, then I will be scanned every 3 months for a year, then every 6 months, then every year. If the next scan shows things looking shrunk down to nothing, then I may be able to have fewer scans.
If any of the scans show growth, we'll deal with it as it comes. For now, I am focusing on recovery from the surgery and trying to get my almost 8 year old's b-day party planned. (We're doing a Harry Potter theme.) Then I'll get my new MRI and go from there.
I am getting used to the ambiguity, but this whole situation has really turned our family's life upside down. In addition to my physical side effects, I have been experiencing a lot of depression and anxiety. My daughter is as well, just when she was doing really well after a bout of depression and anxiety last summer. But we knew the signs and I saw them early enough to intervene before it got as bad as last year. It's just hard dealing with her depression and fears while dealing with my own. We are both seeing a therapist right now. I am not sure how my DH is doing. He says he's OK though I know he's been stressed out.
The doctor thinks I will remember 2011 a very difficult year in my life, because on top of everything else that has happened, the headaches will likely continue for a few more months. (Normal for this procedure.) But I am glad I had it done since it was actively growing according to the bone scan, and I was beginning to notice symptoms. I still am having some phantom smells going on, which is a bit worrisome, but we'll know more after my next scan. And for now the doc is keeping me on the anti-seizure meds (though a reduced dose) just in case the phantom smells may be a type of mini-seizure. She thinks the smells may be in response to my temporal lobe being irritated by whatever-it-was breaking through the bone in that area.
Last night was the first night DD was able to verbalize that she was afraid she might not have a mom anymore. I thought it was pretty huge for her to talk about it. She has become quite clingy, but I think it's a normal reaction to what she has been going through. And she's pretty intense in the first place.
I know this rambles a bit, but I am still pretty addle-brained from the surgery. Thanks for reading.
Thank you. :-)
I am still in waiting mode. And planning a b-day party. Hopefully I won't get too freaked out when I have the scan, though I suspect I will get nervous while waiting for results.
UPDATE: The scans showed that the lesion had regrown where it was removed and also it grew further into my eye area, affecting my vision. July 21st, I had a second surgery to completely remove it. There is some hope of identifying it this time since they found some cells which looked different than last time. It has presented in multiple ways and completely baffled the medical community so far.
I am about 2-1/2 weeks out from the second surgery. My vision is improved since before the surgery. I have a follow-up with my doctor this Thursday (unless she goes into labor). I do not have any expectations as I have become fairly comfortable with ambiguity.
I am still unable to drive and am very tired. My DD is dealing with things more in "real time" this go around instead of stuffing all of her feelings and waiting for them to pop. She told me a couple nights ago she is scared that I might not be around. While it was sad and scary to hear this, I was proud of her that she was able to express this fear as directly as she did. I have the same fears. DD has also been dealing with my incision better this time. Last time, it scared her to look at me for a long time. This time, she's been pretty cool about it.
My mom came out again this time, but left after two weeks. I am trying to lean more on my local community this time, partly because I want to show Mom that while I am happy she came to help and I appreciate her help, I do not wish to be rescued.
I had a conversation about how I felt about how she and my dad deal with my brother. I have never seen such a co-dependent group of people. My dad came out for a weekend to pick her up. They also take two days to drive here so my brother was on his own for almost a week. Bro hardly called this time and seems to be doing well. (Normally he calls my mom 10-20 times a day and expects her to listen to him pontificate for 6 hours at a time, which she resentfully does.) I think they'd all do better to stop trying to keep him in a victim position and let him sort out his own life. When the three of them are together, it's just a sick combination of weirdness.
My dad looked awful, has extremely low energy and hasn't been able to do much for the past two years, which I suspect is partially due to depression and the stress of their living situation. The way my dad speaks of things often shows much anger toward my brother (not because of his disabilities but more because the way he treats my dad). They are all constantly struggling to control each other.
Yet, my parents continue to try to be responsible for my brother (he is 37). I think this undermines all of them. Yes, he needs help due to his disabilities and his mental instability, but I think it would be more appropriate for him to find it in other ways. But instead of helping as facilitators so he can become more independent, they are choosing to build on to their house since he can no longer go up and down the stairs and keep things in the status quo. This frustrates me because Mom always seem to think that once this one thing is done, everything will be OK. I think my dad has basically just given up. The truth is that they are all three waiting for him to die while trying to make him as comfortable as possible. This might be OK if my parents were not sacrificing their own lives 24/7 to do this. They refuse to ask for or seek outside help and then they complain about their situation. They also usually refuse to leave bro alone even for a few hours because of what he might do, then they complain about him causing all these woes. And none of them are happy, not even my brother.
I told Mom that as long as my bro was living with them, we would not stay with them because I do not feel safe around him and I would not let DD stay with them either. She didn't like it but she kind of seemed to understand. I promised not to bring up their choices again but at least she listened to me. It is their business and DH and I have chosen our boundaries.
So now I am just trying to slowly get back to regular life at home post-surgery. I'm planning a low-key day with DD today. Friends are coming over tomorrow, then my doc appt is Thursday. Wish me luck.
Starflower, how are you feeling? Thanks for posting the new update. You seem to be a strong woman, despite this situation. My mother has a pituitary tumor, and she refuses surgery. I don't know how you managed to go through TWO surgeries, but it must have taken incredible strength. And, even though your family has issues, at least they are there to help you. What a blessing!
Thanks for sharing with us, and please keep us updated if you can!
"This is the sickest species the world has ever known."
Dr.John Bergman, speaking about the human species.
Today was my one-month anniversary of my second surgery. I am doing relatively well, though I realized today that I have had a headache in some form or other for the past six months straight. Bleah. Today my pain was pretty good and we had some friends come over. They brought dinner and grilled it here so we could all eat together while the kids played and I mostly sat on my butt. It was weird doing this, but I still tire very easily and I get headaches anytime I overdo it.
Yesterday I didn't sleep well the night before and I had terrible headaches all day long.
My scar is looking OK. Only a couple of scabs left and they are very small. And today, I drove the car for the first time since the surgery. It was fine. I rather enjoyed it. The neurological symptoms such as feeling lop-sidedness or dizziness have all disappeared. Yay! Now it's mostly a matter of do I have enough energy to drive from A to B and do whatever activity is there and still be able to drive back? That and if my headaches are bad enough to need a larger dose of pain meds then I can't drive because of the side effects. So I am planning things as best I can predict my energy levels to be.
It was really nice being able to drive and be out somewhere that wasn't a hospital or doctor's office though. :-)
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