I started keeping a journal in the fall but didn’t keep it up. Here are the entries.. (Names have been changed or omitted)
10/13/09 Just back from a glorious weekend away… time to relax and put my worries and troubles behind. It was great although coming home I was filled with a sense of dread and it all came to the surface. I’m stuck between a rock and a hard place in terms of my job. It’s not enjoyable this year with J’s behavior issues and the (state mandated portfolio student testing) hanging over my head. On one hand, I hate to have to go in this week knowing that I’ve got lots to do because of both of those things by Thursday and Wanting to be there because I don’t want to face what I have coming up. Part of me wants to throw myself into work and let that be the most demanding thing on my time and energy. The other part knows that I need to focus on my own health right now.
Before the saga started, (my co-teacher) and I had great plans to make this the best year yet. I’ll be so glad once Friday is over and I get a good report, then I can exhale and allow myself to even think about this school year. I know that I’ll still be out for the mastectomy surgery which will be a long haul but honestly, I’m petrified that they’re going to find something right now and I’ll have to face the monster of Ovarian Cancer.
I’ve decided to write down my journey and journal about what I’m feeling and what’s going on. Initially, I didn’t bother because I was optimistic that there wouldn’t be a “story”. I thought I would just get the appt with the specialist, he could hear my history and agree that an MRI was warranted and that would be that…. little did I know the can of worms that I would be opening that day. Knowledge is power, and it may save my life but let me tell you, knowledge is also scary.
Time to get ready to go to school to prepare my lessons for a week out. More later. ..
10/14 Another day closer to D-Day and things at school are still up in the air about J. Trying to plan an emergency meeting for today or tomorrow but we’ll see how that goes. I’ve heard that they may not approve funding for the pca and that sickens me! I’ve expressed my concern since the very first day of school about my ability to keep him and others around him safe and that extra adult is imperative to insure that I do. If they do deny it, I will have lost all faith in their “children first” and will view them as empty words. What it really would translate to is using the excuse of children first when it allows them to disregard a union contract but not when it was actually for the child’s best interest. We’ll see how that goes…
We have swim today but I’m not sure if my class will be going as I can’t bring J and the others may not have their slips in on time. I’ll see when I get there.
I had a decent night sleep last night for a change and for that I’m thankful. I didn’t really think much about Friday, just read until I was almost out, said my prayers and fell off into sleep. DH came home earlier than usual and I got up for my usual bathroom run then promptly fell back asleep. That’s usually one of my biggest problems. When I get awakened at 3:30 – 4:30 I have a hard time falling back asleep because I do nothing but think about what’s going on… wheels spinning and spinning…
Not sure if I’m going to end up with a final period… it’s due any time this week. I’ve been very gassy but that could just be my nerves or my paranoia because I know that bloating and gas is “one of the signs”.. Lately, every twinge has me nervous.
Time to get ready as I have a meeting before school, then dentist after.
10/16 It’s now the morning of my last day with my ovaries. This afternoon, my body will never be the same again. It’s 9:00 and I’m unable to drink anything before I go in for 11:00 to prep for the 1:00 surgery. The past few days have been stressful and busy with work things. We finally had an emergency meeting for J and I needed to stay at work until 5:30 to get my plans and materials in order for the sub. As of now, he’s scheduled for today and all of next week.
I’m scared. I’m scared of them finding something. I’m scared of the massive blowout to my hormones that is surgical menopause. I’m scared that I’ll become old. I’m so HEALTHY… I’m never sick, never take a pill, am physically active and still feel so young. It’s hard for me to accept that I have to do this when I feel so good. Most people who go in for this type of surgery have been having “women problems” so it comes as a relief. For me, nothing could be further from the truth. I know it’s NECESSARY because of my genetic makeup an it will be a relief when it’s over and I’m cancer free but it’s still scary and not something I want to do. I am doing it because I need to do it.
Right now, I’m not even thinking about the next phase of surgeries, I’m just focusing on this one and it’s enough for me to emotionally deal with at once. It’s not that I planned on having more children, but I could have and still feel young enough that it was possible. Just knowing that I Can’t is a loss. More than that though, I don’t want to lose a part of my body, especially healthy parts. I am in no way second guessing my decision to heed my doctors’ advice.. I know that I have to do this but it still hurts my heart. I’m scared.
10/17 I made it through and I’m home recovering. Thankfully, it was done laproscopically and I’m not in much pain at all. The most uncomfortable thing is the extreme dry mouth and throat and the trapped gas pains in my chest and shoulder area from the procedure. I still need to cough to clear my lungs but that hurts the incisions and one started to bleed when I did. I’m on the couch for a couple of days and DH has been taking care of me and hooked me up with all of my things to keep my happy; my laptop, books and knitting. Of course the TV is here but I rarely watch so it will likely only go on when he’s down here too and for the game. He always is the best about feeding me and taking care of me too… I ‘ve got a great nurse in him. He did the same when I fell down the stairs and was out of commission with a back injury a couple of years back so I’m not surprised.
Physically, I don’t feel any different yet in terms of my hormones but it hasn’t even been 24 hours without ovaries. It did feel like my insides were dropping the first couple of times I stood up but that’s gone now. I’ll be out or work for the week and I see Dr. B for a follow-up and to get pathology results. I’m remaining optimistic that the prophylactic procedure was done in time and that I’ll get a clean bill of health. I was terrified that they were going to open me up and find something right away but just making it through the surgery put my mind at ease. (Of course I’m not stupid.. I realize something could show up in the path but my biggest fear that they would open me up and find that I was full of cancer and it was too late is gone.)
1:30 In lots of pain today from the CO2 rising to my neck and shoulders. The incisions only hurt if I cough. Hoping that it dissipates soon!
10/18 8:30AM Was in agony for most of the day and evening yesterday. There is extreme pain on my right side in my chest, shoulder and neck area from the CO2 gas that is trapped there. I tried using the heating bag of herbs but while it feels nice to have something warm on it , it doesn’t dissipate it at all. They say laying down is supposed to help but it hurts more that way so I can’t. I can just feel the throbbing and stabbing pain. I ended up sleeping sitting up last night so I’m not really rested. I’m going to try walking around a lot more today and maybe some upper body yoga stretches..
DH is taking great care of me of course and I’m not surprised. I’ve got plenty to eat and drink (although not that hungry) and he’s being my gopher when I need something from up stairs. The girlies are a bit confused and I can hear Sugar crying a bit because she knows I’m down here. They do jump up for kisses on their way in and out the door though. I’m thinking that once the pain subsides, I’d like to cuddle one at a time down here for a bit. I miss them.
I’m flowing from my last period of all time.. not too heavy yet and my incisions are looking decent. My stomach is more swollen today than the first day and it’s tender but not painful. Of course, nothing compares to the neck pain so everything is relative.
Finished an audio book yesterday and knit a few rows on my afghan but that’s all I could handle.
10/19 The pain in my neck and shoulders resided a bit today and I was finally able to lay down so I spent most of the day napping. I felt nauseous quite a bit and thought I was going to vomit but didn’t. I did sneeze quite a few times which hurt the incisions but it doesn’t look like they are bleeding.
A friend had a baby today and it’s weird to think that as that couple is bringing a new life into the world and nursing a new baby, I’m at the very end of my fertility. So far, I must still have some hormones in my system because I haven’t felt any different yet. I’ve been a bit sweaty but so has DH so I don’t think it’s just me. I’m experiencing my last period right now as I was actually due to start the morning of my surgery and was spotting when I went in.
Tonight, I can’t sleep… I’m not sure if it’s because I napped so much today or for another reason but I’ve just been through a whole series of breathing exercises with Dr. Weil and it hasn’t helped. I figured I should just log in and purge my thoughts here so I can let them go.
Tomorrow I need to call Dr. B’s office to schedule my follow-up for about two weeks. Of course I haven’t heard anything about pathology yet but I’m remaining optimistic. As soon as I get back to school, (co-teacher) and I have a lot of planning to do and I need to immerse myself in it while awaiting the next step of the journey.
I haven’t really given much thought to it right now because I was so focused on this initial surgery and only want to take one step at a time but as soon as it’s in the forefront and there is talk of a date, I will be speaking with my precious children about the “whys” behind all of this. I’ve avoided it so far because it’s not even REAL to me yet and I don’t really have answers for them yet. It’s not that I’m avoiding the truth, I just don’t feel ready to bring it up until it becomes reality. Not only that, if unfortunately there is any sign of ovarian cancer then it needs to be dealt with first. I will definitely “come clean” about everything all at once if god forbid, that’s the case.
10/20 I didn’t fall asleep until after 1:30 last night… could be because of all the sleep I got during the daytime naps or it could have been because my wheels were spinning with school stuff or a combination of both. This morning, I still can’t take a deep breath as that pocket is still there. It’s not as agonizing as over the weekend but it definitely is not completely gone. I went upstairs to get my clothes for a shower a little while ago and got winded and felt dizzy.. go figure. I’m going to have to make it up there tonight to sleep as DH is working tonight so I’ll need to be there to get the girls up in the morning. I still plan on camping out down here for most of the day because dogs jumping all over me (and fighting over me) is not something I’m ready for yet.
10/21 I slept upstairs for the first time last night..and took care of the girls. It’s amazing how tired and winded I get just doing the simplest things. I’m glad I took the full 10 days before having to go back to school. I can’t imagine making it past first period at this rate. The CO2 has dissipated much more but today I’m getting twinges in my abdomen and am flowing more. It’s like a full period right now. I’ve got my follow-up appointment for Dr. B scheduled for 11/4 and haven’t heard anything about pathology as of yet. I’m assuming that I won’t hear until that day if it’s negative but will get a call sooner if they found anything.
I’ve had a few episodes of sweating but it could just be the fact that it was a gorgeous near 70 degree day. Did some more knitting, read up on reconstruction options in the paperwork from Dr. M and online and finished another audio book. Don’t even want to think about going back to school yet… zzzzzzzzzz
10/22 Finally able to sleep on my side last night which was heaven! I’m feeling emotional today and it’s a little unnerving… I guess it’s because I’m still not feeling great, am getting winded and tired easily and it’s already Thursday. I don’t want to take too much time out of school but don’t want to go back until I’m ready either. Things have been nutty at school according to the girls there and I’m not sure I can handle it right now.
Physically, I’ve beginning to feel like I need to urinate when I stand up and there is pressure in my abdomen. It’s not a painful feeling but it’s a little uncomfortable. I also started with the sniffles and am hoping I’m not coming down with anything.
Emotionally, I’m holding it together but have had some waves where I just need a good cry. Friends online are having babies and my fertility and youth have come to a crashing halt. I’ve been thinking a lot about the reconstruction options over the past couple of days and while I can speak about it clinically, inside, it hasn’t really hit me yet and it feels like I’m talking about someone else’s life.
10/23 I had a hard time sleeping last night… read until 11:15 and fell asleep until waking at 1:00 with a bad dream. Couldn’t get back to sleep thinking about work so I turned on the light and read until 2:30.. Fell back asleep until DH got home around 3:30 then took me another 1/2 hour or so to fall back. I woke up at 6:00 and rolled over then dragged myself out of bed with Chloe’s scratching at 7:15.
I’m really torn.. and scared about going back to school on Monday. There’s lots of stress there and I don’t feel well physically yet. I don’t want to go to in too soon and not be able to make it. Once I’m back it will be harder to leave than if I just take longer out to recover. I’m very petrified of “not being able to handle” the stress and demands of this job. I’m worried that I won’t have the patience to deal with it and will crumble into a heap of teary mess that I am right now. Life and dealing with this long battle would be so much easier without the burden of responsibilities that is my job… But, it is my job and my life. I’m so torn between putting myself first which I really NEED to do and taking care of my responsibilities there. I don’t want to let anyone down.
I called the doctor today and she had me go it to do a urine culture. I’m glad I did because the pressure is getting worse as the evening is going on. At this point, I already put in for Monday but if this is an infection, then I’m Definitely calling out for the entire week. I’m actually 90% certain I will anyway as I don’t want to make the mistake of going back too soon, finding that i”m not able to handle it then have to take more time out. It will be worse for the kids and for me. Time to finish my book and hope that I crash all night. I’m going to try some melatonin tonight too.
10/24 Lazy day spent reading, knitting, etc. Still having the pressure to urinate but doesn’t seem worse, but not better either. Quite a few hot flashes while watching movies at night. I already don’t like this surgical menopause thing. 
10/25 Cried myself to sleep last night.. tears just came. And while DH takes great care of me in terms of food and pitching in around the house, I’m in this one on my own. He’s not the type to ask what’s wrong, give me a hug or even hold my hand when I’m down. That in itself makes me nervous about the emotional effects/mood swings/ etc that may come with this. Is he going to be able to handle it and better question is, will I?
10/26 Talked to Dr. B this morning and she was surprised at my slow progress.. now I feel guilty about taking the whole week out.
I’m starting to have hot flashes pretty consistently and will be looking online for natural relief remedies.
Convo which sums it up: and had some wavering of decision to stay out the week this morning
[10/26/09 7:42:47 PM] me: talked to dr… she was surprised that I had such a hard time and don’t feel ready
[10/26/09 7:42:56 PM] me: so I felt guilty today
[10/26/09 7:43:12 PM] me: sigh.. you know me with my struggles to do the right thing all the way around
[10/26/09 7:43:14 PM] me: but….
[10/26/09 7:43:20 PM] me: talked to someone at work today
[10/26/09 7:43:24 PM] T: i know….
[10/26/09 7:43:25 PM] T: and?
[10/26/09 7:43:29 PM] me: it’s nutty and a zoo but my class is in good hands
[10/26/09 7:43:38 PM] me: so, I know that I did make the right choice
[10/26/09 7:43:46 PM] me: I don’t need that added stress right now
[10/26/09 7:43:46 PM] T: i agree
[10/26/09 7:43:52 PM] T: correct
[10/26/09 7:43:57 PM] me: so now I feel good
[10/26/09 7:44:01 PM] T: does the doctor know your job?
[10/26/09 7:44:09 PM] me: yes
[10/26/09 7:44:22 PM] me: I think she was thinking more physically
[10/26/09 7:44:23 PM] T: how can anyone really know what it’s like though
[10/26/09 7:44:29 PM] me: I kno
[10/26/09 7:44:44 PM] me: she said it does happen to some ppl that the gas lasts that long
[10/26/09 7:44:47 PM] me: but not typical
[10/26/09 7:44:58 PM] T: ok
[10/26/09 7:45:03 PM] T: and so it is
[10/26/09 7:45:06 PM] me: I’m ok with it now
10/28 Getting stronger each day but had some diahreah yesterday. L came by to see me and stayed awhile. I’m still awaiting pathology results but thinking positively. I’m getting physically closer to getting ready to go back to work but emotionally don’t think I could have dealt with it yet. I made some pasta and heated up some garden sauce that I had frozen from the summer and just sauteing up some vegetables and putting that together exhausted me. Today they go swimmng anyway and I couldn’t have gone in so it’s just as well. We’ll see what today brings.
I know I don’t have a UTI because they never called me back but I can’t stand this pressure! It feels like I have to pee and my bladder is not full. grrrrrr I’m having lots of pain in lower abdomen around incisions.. it feels like the nerves are waking up since surgery… skin is sensitive to the touch and feels funny.
I spent a lot of today looking up the two types of reconstruction. I really wanted the TRAM flap but I’m nervous about losing the core muscles and today I’m 146.. may not have enough tissue. F’s office called and offered two dates 1/8 or 2/17. The January one works for both doctors but neither “owns” the operating room time and would have to wait to see if it’s available. 2/17 is theirs but it’s further away and I’m not sure if I I should wait that long. It would kill me to wait and just miss the safe time by a little bit… Today was very emotional… I’m so confused. I have to make decisions about dates and types of surgery. In both cases I need to choose between A and B. I choose C: None of the Above…. ;-(
10/29 Ugh….. I woke up sweating at least a dozen times last night. I don’t think I got two solid hours in before waking up, getting drenched, having to throw off the covers then put them back on when I got chilled. I tried the sublingual menatonin but I don’t know if it will help me sleep through it. I’ve got so much to think about ….. I’m expecting a call back from M’s office today since they didn’t call yesterday. Tomorrow is B.
Difficult day today.. spent lots of time googling TRAM procedures and the ability to exercise post op and it seems that the majority of ppl who have posted have had horror stories. I’m so nervous now about the side effects of muscle loss. I talked to Dr. M’s office and they can see me on 11/5 to reexamine me to see if I even still have enough tissue and to consider it. I want to talk to him about the long term exercise effects for both procedures. In the mean time I’m sticking to the FORCE website message boards to have discussions with other women. It seems though that most ppl on there have DIEP instead of TRAM for the self tissue procedures. I don’t think he does that procedure. It’s another thing to ask when I go. Then.. there is the issue of the timing and scheduling of the procedure. So many questions and my head is spinning. Been doing some crying too… Cleansing… of my mind and body…
10/30 Had my appointment with B this morning and got the best news… all pathology is negative!! I talked to her about the hot flashes and she suggested increasing my soy products initially to begin. If I don’t get any relief I need to call her in about a month.
I spent more time thinking about the long term effects of both surgeries and am feeling that the loss of Abs and what it might mean in terms of exercise might be too great a sacrifice. If the doctors here did the Free Tram then I would be much more for it but none here do. I’ve decided to talk to D next door about her experiences with patients who have undergone either procedure since she is a PT.
10/31 Went for a walk at (the state park) and went to the market which was mobbed. Either activity would have been OK but doing both was too much. Nap time…
11/1 quiet day at home then out for dinner with DH.. very good night
11/2 Back to work today. Tired by 9:30 but JR was very OFF and was out of control. Actually elbowed me in the abdomen trying to run out of the room for the second time. Buckled over … stomach was hard and gaseous all day. Not sure if it is just because of being on feet all day and moving around more than I had in two weeks. Bed at 7:30 and asleep at 8:30 but up all night.
11/3 Still hard stomach and gassy. Hurts to sit down. Sharp pains… still waking all night. Took some melatonin but not sure if it helped. M called and was disappointed that they never contacted me for the support group. We talked for awhile about my struggle with deciding on which procedure for me. Will keep in touch.
11/4 Still painful to the touch and bloated. Walked to swimming today and I was at the back of the pack… how times change! In bed early and hoping to be able to pass some gas.
11/5 Stomach is still hard and very bloated. It’s hard to breathe and my pants are so tight. Up at least a dozen times with a wet pillow, sheets and pajamas. Worse than the sweats though are the chills that come from being so wet and cold. I’m not experiencing any REM sleep at this time as I only never sleep more than an hour at a stretch… sigh….
Next Up: Where I’ve been, Where I’m going…
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