Friday, November 30, 2012

Day 36 The Wound Whisperer?

Well at least that's what I feel like I need to be now, none of the signs that they tell you to watch for were evident on Lisa's first incision line, no drainage to speak of, nor redness, or puffiness, and no fever. One expects to see some minor bleeding if a scab gets knocked off by a towel.  The only thing I can figure now, is that, maybe, there should not have been any unhealed part of the incision after 30 days but, no one said to look for that.

So now we have a whole new type of incision to practice infection divination on, but damn it, I don't believe in divination, and have had a whole ONE experience to base my current skill level on.  It just seems ludicrous to me that such a critical observational task is left in the hands of complete rookies, and without a detailed, and exhaustive, list of every possible indicator that nasty little, malicious microbes have set up housekeeping.

 So now we watch again, this one is pretty much on the caregiver though, the patient can't really see their own head very well. So far it is a daily exercise in second, and third, and fourth.... guessing though, and it just seems to me it shouldn't be that way. There needs to be more definitive information available.

Lisa is still holding up remarkably well, the slowness of recovery is becoming an increasing frustration for her, but we talk about it, and hopefully we can find strategies for ameliorating it. She has actually been out to the workroom making some of the jewelry she made before the surgery. That is one hell of a feat considering she has no binocular depth perception. I just hope she doesn't barbeque a fingertip while soldering, perhaps it is a good thing she is still using small torches. She is still coming to terms with the constant fatigue, and this too is challenging to find successful coping strategies for, but she is an amazing lady. I can see the frustration, and hear it, in her sometimes, but she never externalizes it as unreasonableness with either Joey or I.  I'm a lucky guy.


(hopefully I'll catch up on these posts soon, if I'm not mistaken this is actually day 42 since the initial surgery.)

Saturday, November 24, 2012

Day 34 Happy Thanksgiving Everyone

Man, what a Fall, I don't think either of us has ever faced a more challenging time leading up to the holidays, and as I sit here on this day marked out by tradition, to keep us mindful of the privilege of, and the apropos  gratitude for our lives, and the things in them, by far and away, I must first say, that my Lady, and that she loves me, tops the list, overwhelming my mind and heart in unwordable wonder.

Okay, so after that, which sort of overrode what I had been about to say, (amazing how the mind works), as while the above is as true as truth gets, it was not what I was thinking of in relation to this blog. I had been thinking of how grateful I am for Dr. Al-Mefty and his team, Brigham's and Women's Hospital, and all the people involved in Lisa's treatment thus far.

Great news! Lisa is being released today, she looks great, even though  her incision line is more pronounced at this point, she does somehow look healthier, and she is reporting less pain in the area below her incision, pheeuu, that was close.
(Sorry this post is late an yet another unanticipated variable has entered the picture, only this one is a supposedly sentient being)


Wednesday, November 21, 2012

Day 33 Back in the Hospital

weird this should have posted 8 hours ago

Wow, I never even got a chance post what a nightmare the last 12 hours has been, ever since talking to Lisa before leaving home to come down here, and her telling me they thought the infection was under the bone, through the parade of doctors in and out of her room all with a different take on the situation, waiting for an open OR for them to use, into the afternoon, that horrific moment when they actually wheel her away, to just getting settled in the waiting area, and them coming over to tell me the OR had called and they had begun closing, to the surgeon telling my slack jaw amazed face that they found nothing. All the pus that was in there must have come out when the nurse first saw it in the clinic. They swabbed that area, and sent it to the labs to see what type of antibiotic to give her, but apparently every thing is good. Man, if this holds, my lady is better at dodging bullets than Keanu Reeves.


Tuesday, November 20, 2012

Day 32 Oops, off to Boston

Well we've passed one month since surgery, and Lisa is doing very well, even with dealing with frustration now and then. Any noticeable changes in her recovery path are now either so incremental, that they are below either of our conscious recognition levels, or are further apart than those of the first month. In other words, at this point she seems to have plateaued, and she doesn't like it, but she seldom complains, and in fact has to be encouraged not to push it.  There is no doubt about when she has because of how thoroughly it wipes her out afterwards. I'm trying to get her to write more here, and I hope that will help.

We had a bit of a scare two nights ago when  a scab on her incision line came loose, and exposed a small shallow, oval, hole about 1/8" long, and 3/32' deep, or as long as the tip of a pen when the button is fully depressed, and as deep as the point when it is ready to use. I called the local ER and they said we needed to talk to someone where the operation was done to see what they recommended. This marks our first disappointment with Brigham's, despite two calls to their switchboard, and two pages to the NS resident on call, we never got a call back. So after watching the site for over 2 1/2 hours, we decided it was not an emergency, and yesterday it looked fine. We'll be calling Brigham's today though to be sure, and probably going to see her primary care provider to be positive there is no chance of infection. We should have done this yesterday, however, I was pretty severely distracted by ridiculous levels of pain in my back all day. I feel pretty bad I allowed that to happen, but then, I hadn't anticipated such an event could occur.

Just looked it over again and we're waiting for a call back from Brigham's, it seems to me that clear serum(plasma?) is pushing the scab off, as if not happy with that part of the wound still being denied air. It does not look like pus, nor is the area puffy, red, or warm. We'll just have to see what the hospital says.

I am so glad that the rest of life's possible complications took a break until we had been home for over a week, and now with this wake-up call, I know to be sure to be paying better attention.  There is nothing easy about being sure to do this right...

Well just got off the phone with Brigham's so now we're off to Boston, yippee, well I'm actually glad because I would been worried otherwise.


Saturday, November 10, 2012

what is it like to go through this ??

the reason I called this Our brain tumor Journey is it's never something that is done alone. Kevin is affected by it and so is my son Joey. They both cried with me through all this and worried just as much if not more about what was going on in my head. It was found in Aug. 2010 when I noticed while sitting at the local lake that I saw double when looking to the left. It was eye checking month at our home and I made a appointment with Joey's eye doctor to have my eyes checked. as I went in she met me half way in the office running to greet me. she said that isn't a eye problem but something neurological and I needed a neurologist. So we found one at the local hospital who did a MRI and then called the next day to say you have a large brain tumor in there- where do you want to go find a neurosurgeon ? so we went to see that doctor and he did his own MRI and we found out what I had. A Meningioma. He said most people who have one where mine was will leave them alone since they grow very slow and are Benign. so we went on watch and wait and he said it could even be 10 years before anything was done about it. we found all the fun things this was doing to me- It gave me some fun side effects. Lots of head pain, not your normal migrains either.My eyes started having big troubles like black spots and the vertigo from the double vision was horrible ! I got osterperosis, skipped menopause because it messed up my hormones and oh the best thing is it made me fat lol I used to be so skinny that people told me to eat more. so move on two years and then one day as I walked into a shipping store, My eye decided to go on vacation. it went balck on half of it. I'm trying to read the paper in the shop and the lady tells me in her oh so sarcastic voice, your glasses are on your head. I said yeah I know, problem is my eye isn't working at all and glasses won't help. we went back to the doctor the next day and they said it was time for surgery. we walked out of his office and started bawling in each others arms. we were all set for a surgery date of Aug. 10th and then for some uknown reason the doctor left the hospital two days before surgery never to return again. so after a couple of good fellow brain tumor survivors gave me a new doctor name, we went there. Boy were we glad we did !!!! he did all the tests the other place decided were un nessary. My major arterie in my brain was being crushed so they did a angiogram of that to make sure I wouldn't have a stroke during surgery. That was weird but interesting !! a hearing testfound that I've lost some hearing in one ear. plus many other tests. then surgery was done. I woke up feeling like I had been kicked in the head by a horse. I gues the pain meds kept putting me out like a light so we asked for less to go home with. didn't work, it had to be stonger again because the pain was unbearable ! it felt like I had a flat ball where my head used to be. My eye doesn't open now but they say in 6 months it should heal and they think they saved my vision which is great because otherwise I would have gone blind. so the head feels very weird, it's like I had novicane all on one side and the other side is fine. My right side of my head is sleeping lol I can't drive till they ok it too since you can have seziures till all the brain swelling goes down too so I'm on anti spaz meds like Kevin calls them. They also cut your jaw mussel to get in there so big or very hard foods are out till that heals. I was very glad to have my surgery because this doctor showed us just how bad it was. He called it huge and very rare because of how it grew. Most stay in one place, mine started behind one eye, then went to my pituitary, then the other eye, then up and then started dribbling down ward. People always say you have to be careful not to use up tomany brain bucks because not only does your brain run everything it's also like your battery. Boy they wern't kidding ! Someone drove me to my cancer group and then I slept the rest of the day. wow I was beat !! Kevin and Joey both have been taking such good care of me ! I did go out and make jewelry today, even though only one eye works, I can still do it thank goodness ! it's not as easy because my depth perception is gone and it's harder to see but that will come back in time ! I've had some very weird responces in this time of finding my tumor. it's benign so no worries. yeah I'd trade shoes with them any day and let them have a surgion remove a soft ball size piece of skull and see how they like it. that and all the other fun that goes on when you have something growing in your hard skull when your body motor is in there trying to make you work. I know many that have died from these things ! the cost is killer too. Insurance covers 80% of the surgery which leaves us with how much after all said and done from a 250,000 surgery ? Youch !! But I'm alive and that's all that matters to me. I can live in a camper for all I care just so I have Kevin and Joey with me ! Now in three months we go back for a follow up MRI and see what's going on in there- how much is left and if I shall have radiation for the rest or another surgery. Everyone cross their fingers and toes please for just radiation ! Once on the surgery was enough thank you very much !!! so that's all for now. my short little story turned into a looonnngggggg post- sorry about that. anyway, thats all for now- Lisa

Day 18 Back to Work, Posted Day 22

 (Started on Tuesday the 6th, sorry things got a wee bit hectic here due to plumbing and heating problems)
Practicality trumps desire, or to put it another way, you do what you have to do, before you do what you want to do. All I wanted to do was to stay with Lis, but I've been away from work for three weeks so, I had to go back. Not easy, but we talked about it over the weekend, Lis assured me she'd be okay, and that someone would be with her, and that besides she'd probably just sleep at least during my morning runs. Besides all that it is nearly three weeks since surgery, the likelihood of any radical post-op complications arising at this point should be relatively small.
Lisa continues to do remarkably well, we have determined though, that the only adaptive place for her to even approach laying down is in the recliner. When I got back from work this morning she was once again at the top of her post-op pain levels. Even with max dosages of her pain medications, and applications of ice packs as well, she still had to endure a number of hours of unreasonable discomfort. The couch is out for the foreseeable future. In relation to surgery and recovery, things are going very well.


Monday, November 5, 2012

Day 14 posted on Day 17, Oops

 [Sorry for the delay folks, this post got away from me, I've got to remember to post updates and not dissertations]

Two full weeks from OR, one full week since our return from Boston, and it is hard to say how things are going, at least it is not possible with any one simple sentence. Considering what Lis actually went through, her recovery is proceeding extremely well; however, that by no means, means she is well.
It is now 5 days since the end of the steroid taper, and the buoying effect they had on her activity level, and their analgesic effect, are now quite evident.

(Caregiver Alert;  items mentioned in the following 3 paragraphs are really easy to miss, the person you are caring for may not be a reliable source of information.)
Lisa's pain levels have been going up. I have had to discover that even though I know Lis is notorious for under reporting pain, that does not mean I will recognize when she is. We went to see her primary care provider today, and when she asked what Lisa's pain level was she said 7! This elicited an immediate, involuntary, rather loud exclamation from me of, "What? You didn't tell me that!" I have to learn how to pay closer attention, and to read more subtle signs. Or I suppose she could just buck up, and tell me. ;) I think I'll stick with looking more closely, I think it is a pretty engrained pattern of behavior.

We also discovered that I have  been under-medicating her.  This is partially my fault, and partially the fault of inadequate post-op instructions to the patient and caregiver (another topic). When Lis was in the hospital they had her on 60mg of codeine for pain but, every time they gave her that much, it would pretty much knock her out, decrease her rousability, and make her pretty loopy for a while. So when they released her we asked that they make the prescription for 30mg tablets. With all the other concerns at the time, do you think either of us remembered this for longer than it took to make the request? Also another point I completely failed to take into account was that, every one of those hospital doses was administered within 2 days of her having been anesthetized for over 12 hours. What it seems to me we were seeing was the codeine combined with the residual effects of the anesthesia. This seems to be supported by the fact that after the PCP appointment, the next time her pain spiked, she took 60mg. and it did significantly reduce her pain, while not having the effect it did in the hospital. I could slap myself for that one.

Another thing to watch out for is sleeping posture. Unless you have a hospital style bed at home, this can be tricky. Lisa was not at all comfortable with the big, foam wedge so, we put her on the couch, and probably the first time we did that, we were careful to be sure that the elevation of her head was accomplished gradually from the waist up. Be sure to continue to watch this, if the one you care for begins complaining of markedly worse pain upon waking up in the morning, check this, it could very well be contributing to the problem.

So, "How is Lisa doing", "How are we doing?" Like I said, no simple answer presents its self. This is not to say we aren't doing reasonably good, thus far I think we are; however, to continue doing so, I think, is going to be a significant challenge, one that must be faced consciously, and then confronted actively. I'll take this up later, this post has gotten away from me, and been delayed by too many days already, as what I was saying above led to considerations of what might be more successful strategies for maintaining optimum recovery. Sorry folks that's just the way I think, and sometimes it gets away from me.

Lisa is doing very well, I just want to be sure that we do everything we can, that she may be doing as well as possible.