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Places to Go:
Oh scan can you see?
Warning: Snork scan talk within
Last week the ultrasound tech told us that we could bring a VHS tape to today’s scan to record whatever antics the Snork was up to within. This created a mad search not only for a blank VHS tape but also an actual VHS tape player. A quick check of the house revealed that there was no longer a tape player but for some reason I felt like we had a blank tape. Last night Mother and I were gathered around my computer talking about how we would get a tape to convert to a VHS when I had an impulse to check my desk drawer- and lo and behold this drawer (that I honestly haven’t opened in probably 5 years) held not only one blank tape but also 2 tapes that I had made some 17 years ago.
Without even changing out of her work clothes Mother was off to tar-jay to fetch a VCR. And guess what? You can’t just buy a VCR anymore. What is available are the combos, which just seems like a space sucker, but you gotta buy what you gotta buy.
This morning I set off to the U/S on my own as Mother had the day off and she had offered to stay with GM who is still not bounding around at all. The wait was virtually nonexistent at the OB but the tech I was counting on was not there. Instead I had the tech from the original 18 week anatomy scan attempt. And as soon as I crossed the threshold of her room she stated, “Don’t touch me. I’m sick.” Great. Thanks for coming to work today!
I presented her with my blank tape and had visions of gathering the family around the TV and watching the images playback over and over. She put the tape in the machine with a, “I’m not so great at this. One of these days we will get a better machine.” oof.
She washed her hands twice and I laid back and prepared myself for the show. And there he was- in exactly the same position as he always is this time of day: head down, face out, and fast asleep. We could see him moving his lips and there would be an occasional jig in his feet, but the kid was asleep and loving it. The tech was able to get the 4 chambers of the heart and then I feel like she gave up.
She turned off the machine, helped me wipe the goo off my gut and told me that I had two options: I could either come back in another four weeks or she could fudge her report and send me to super fancy ultrasound land.
Of course NOT being able to get the scan is now a bit exhausting. I get that things weren’t greatly visible at 18 weeks, and sure maybe the tech for scan attempt #2 was in a rush and particular about her dates, but this scan felt like the tech was sick and wanted to pawn me off.
But that is just me having a bit of a pout. And really the source of the damn pout is that when the tech pulled the tape out of the recorder the entire thing pretty much broke. The ribbon was stretched and out of the tape case and pretty much useless. And as she is handing me the tape she is telling me how I will need to come back or go somewhere else and it just made me feel so defeated.
However the idea of going to a fancy place is nice and maybe this lady is doing me a favor. There is a rumor that fancy place can do recordable DVD’s. So. um. There is that.
The tech and I came to an agreement but I still I cringed a bit at her writing on my chart, “Chambers of heart not easily visible. Refer to ___________ for level II scan.” I made her swear that this was just us winking at the system (”the system” being my state funded insurance) and not really the truth. This was just what I needed to go along with in order to get fancified. Which I know for reals because the chambers I actually SAW.
By the time I got home I was deeply depressed that the tape we had tried to make was ruined. When I walked into the den I saw Mother stretched out on the sofa laughing at the tv. “You have GOT to see this!” Turns out she had started watching one of the tapes we had found in my desk drawer. These tapes were made when I was in the 9th grade and it was the start of my film-making itch. Somehow I had been trusted with a video camera and had been unleashed. The tape contained not only a tour of Mother’s and my house in Chattanooga, but also a documentary style take of my Grandfather’s 73rd birthday. Following the birthday was a class assignment interview of both GM and Grandfather discussing how they met, their marriage, and what it was like after the war. Utterly priceless.
At first it was almost painful to see my family like this. 17 years ago- long before Alzheimer’s, congestive heart failure, and any number of dramas that had unfolded since. It showed GM as sassy, plump and in control. My Grandfather looked and acted JUST as my memory had preserved him. But seeing Grandmother so changed was hard. I didn’t even recognize the southern lilt of her voice, how free and smart she sounded. It was, quite honestly, an entirely different person and it was incredible sad to see the authentic version of GM and know how she is now. How changed. How quiet and distant.
Halfway through the the interview on marriage I noticed GM stirring in her room so I helped her get on her robe and brought her out to the den. I wasn’t sure if seeing the tapes would be good, bad or sad/hard. Mother and I decided we would play it and if we saw signs of distress we could stop. So we got GM settled into her chair and pointed up at the television to see what her reaction was. At first I don’t think she recognized herself, but she knew Grandfather. We started the tape and the sound was difficult for her so we would pause every other sentence and repeat them loudly for her.
Sometimes she would ask Mother to clarify things, and at one point she asked Mother if any of her Grandparents were still alive. But other than that she seemed fascinated.
I need to research a way to get these VHS tapes transferred to a DVD. I know there are machines but I bet they are very expensive and I can’t imagine it would be worth it for just a handful of tapes. (we have since found a few others) Ages ago we took old home movies that were on film to a place and they put them on tape for us so I wonder if such a company exists now that can put tapes on DVD. research, research…
New Snork image on his page, but it is pretty much the same face shot we got last week. Although I do think his lips are particularly adorable.
Life loves the liver of it.
Three goods, three bads, I’m sad. Long post ahead.
Goods:
1) GM is 100% cancer free. Her mohs surgery went very well and she has 9 stitches on her right forearm that already seem to be healing nicely. We are to leave the bandages on until her followup on Wednesday with the surgical oncologist. In order to keep the bandages in place I have put a cut up tube sock on her right arm and she really gets a kick out of that. This morning, as I helped her make her 3rd trip to the bathroom in under 2 hours, she asked me if she would soon start wearing a shoe on that hand. heh.
2) We are home. We were released late yesterday after a HORRIBLE hospital experience. But if I am focusing in the the good right now- I am just going to celebrate that we are HOME.
3) In an entirely separate issue, but equally perceived as good, I finally relayed news about Snork to some people that I worried about- in terms of their reaction. The news was met by one with complete happiness and joy, and by another with stunned confusion, but seemingly pleasant. Next up is GM’s 87 year old cousin.
BADS:
1) The hospital stay was awful. Usually we have amazing nurses that are fantastically helpful and kind. If we ever encounter an issue with a nurse it is in getting them to understand that GM cannot speak for herself and that Mother & I must speak for her. This hospital stay was beyond that. I can’t even get into all the ways that things went wrong. Nurses being snide with Mother, having to BEG, cry, demand medications, GM having not one, not two, but THREE psychotic breaks because her medication was not given to her in time. I’m talking it was 3-6 hours late in every instance.
All of GM’s Alzheimer’s symptoms are pretty much mental at this point. Agitation, depression, aggression, loss of reality. She is on a very powerful, but very effective and fine tuned cocktail of meds that have taken us three years to perfect. If she misses a dose- just one- we lose her. And by lose I mean she has no idea who she is, we are, where she is, how to speak and she begins to bite, scratch, kick, hit…you name it.
So imagine that hell is happening when a nurse finally comes in. The nurse not only gives the meds to Mother to give GM she actually LAUGHS when she sees GM trying to bite Mother’s fingers. She laughed and replied, “oh! She is mad at you!” ha ha. It was just bad and before we were checked out (after I raised the most GIANT scene you can imagine) we were sent some nurse liaison lady to try and smooth things over. Didn’t work. Now I will say that we did have two nurses that were amazing, kind, and loving towards GM. But the night nurses get no praise.
2) Diagnosis for GM: Primary biliary cirrhosis. FUCK. Basically it is an autoimmune disease that is causing her liver to attack itself. GM had an ultrasound and a CT scan and both showed not only a very, very bad liver, but also a very damaged spleen. Dr. Liver is going to take on GM’s case. Based on GM’s age and the advancement of the disease there is not much that can be done. She is on a new medication that will help prevent a massive bleed-out and that is all we can do. Thankfully she doesn’t currently have any of the symptoms associated with this disease- she just has the horrible blood work and horrible liver.
I’m sure I could go on about how shitty and fucked up this is, but I know you guys get it. I mean having the Alzheimer’s is horrible, then having to deal with the cancer was pretty crap, but now this? What the hell, Universe. Leave my Grandmother alone!
3) Guess who also has wonky blood in regards to liver function? Mother. There are some studies that show that this particular kind of cirrhosis is hereditary. Dr. Liver is also going to be doing a full workup on Mother and IF there is something going on we will hopefully have caught it in time. It freaks me out to no end to think that Mother could have this going on as well. She already has the autoimmune issues with her MS, having something else would suck infinity. (I don’t seem to have any liver issues, thank goodness. When I went through the horrible hepatitis C scare last year Dr. Liver did a massive blood workup on me and my levels are all fine.)
So right now I am sad. I am tired, I feel defeated, I feel crapped on.
GM was chatty every time she needed to get up and already she has forgotten that she was in the hospital. That is a VERY good thing. I am hoping that by going directly back to her normal routine she will be, well her version of normal.
Wednesday we have the followup on GM’s arm and then the next week both GM & Mother have appointments with Dr. Liver. I will probably hunker down for a few days and be quiet on the internets. I can’t even find the words to explain how upset I am about all of this.
Getting a room
Pre-surgery (as in 5 minutes before) we were notified that GM’s blood tests were wonky. Nothing that would delay the surgery, but serious enough that she has been admitted. I am so out of it that I can’t remember all of the problems or numbers, but I know that they said extremely low platelet count, very high bilirubin, and decreased white cells. She will be meeting with an hematology oncologist this afternoon and a liver specialist (Dr. Liver- who I LOVE) tomorrow. Mother and I feel a bit blindsided and confused and hate that GM had to be admitted but felt that this was serious enough to just do what the doctor said. Mother is with GM now and I am home to take a nap and gather a few things. I will stay the night with GM and Mother will come back early in the morning.
sigh. So much for routine…
Surgery day
Leaving in less than an hour to take GM to the hospital for her arm surgery. We hope to be home just after lunch. Hoping it is all just as simple as it has been presented to us. Crazy to think that in just a few hours GM will be totally cancer free. Crazy in a HUGELY good way. Would like this day to be dull, drab, and normal. No excitement necessary. Please, Universe, take care of my family.
Happy Feet
Time for thicker socks in our neck of the woods. GM picked these out herself and every time I see them I smile.
A Plan B for the C word
Can I just say that waiting for a doctor, any kind of doctor, sucks ass. It seems like it is a standard joke that doctors are never on time and I wonder why patients don’t revolt and trash the waiting room in disgust: back issues of germ infested magazines shredded and tossed about like confetti. GM’s appointment with the surgical oncologist was scheduled for 10:00am. We did not see the doctor until after 11:30am. Over an hour and a half of waiting in a crowded room with Fox news blaring and elderly people shouting conversations and at least two people with insanely productive coughs. What a morning of fun!
When we finally got to see the doctor he relayed the FANTASTIC, cartwheel worthy news, that GM’s PET scan was absolutely clear. As in there is no detectable cancer anywhere inside her. And the only cancer she has left is just a small bit of the melanoma in her arm. I could feel Mother’s shoulder’s drop in relief as she sat next to me.
The Doctor asks, “And you guys say no to surgery, right?” I explained that at this point we would not be proceeding with any kind of surgery that would require general anesthesia. And he says, “so we do the other options.” Other options is a different kind of anesthesia. This would be either a local where just the incision site would be numb or a block where her entire arm would be.
This, this new option, is something that I feel ok about. It would basically be as tame on GM as the previous surgery and GM handled that wonderfully. We will still need to meet with a cardiologist, but more as a just in case not as a requirement before surgery.
Finding out that the PET was all clear was huge and great. Lots and lots of sighs of relief there. Surgery could be as early as a week from now we are just waiting to find out. Still hate that we need to do this, but being able to know that afterwards GM will be totally cancer free is something I was praying for.
It’s all about Wednesday
Yesterday morning I called the oncologist’s office to find out where we were with the PET scan results. I was told that we needed to come in so that the Doctor could go over his findings. Of course just hearing that made me think it was bad, bad, bad. So I whimpered a bit and then just asked, “is it horrible?” The nurse dropped her voice and explained that what she was about to say was not actually being said…but…it didn’t seem to be anything to be alarmed by. So Mother and I can sort of untie the knots in our guts and not walk into the appointment with dread.
The appointment, by the way, is tomorrow morning.
This now makes our sort of dull week leading up to a BIG DEAL day a bit more interesting. Usually I try to break the week up for GM with silly little things to look forward to. This week it was all about looking forward to Wednesday when our new coffee maker would arrive. Woo hoo! Then it was going to be looking forward to Friday for the anatomy scan of Snork.
Now I feel like a cannon ball has been aimed at tomorrow.
The really great news is that it is TOTAL sweater weather. As in I am absolutely rocking a wonderful grey cardigan and had to dress GM in long sleeves and layers. Oh so so giddy does this cold weather make me! We are not to have a day above 74 degrees for a week. Today the high is 60 degrees. I bet tonight, when I take Charlie out, I can see my breath. That will fill my happy jar for a while.
Sweet in her sleep
Last night I heard GM stirring in her room a little after seven pm. I slipped in figuring we were about to have a trip to the bathroom. Instead she bounced around on her bed and squealed for me to sit down next to her. We then had the following conversation:
GM: I know it isn’t until tomorrow, but I couldn’t wait to give you your present!
Me: Oh?
GM: (reaching over and hugging me tight) Happy Birthday!
Me: Oh! Thank you.
GM: I know I have your present in here somewhere. It’s hidden so we will have to hunt for it. You can open it now or in the morning.
Me: Wow. That is exciting. How about we look for it together in the morning and you can help me unwrap it.
GM: Goody!
I then tucked GM back into bed and she grabbed my face and pulled it down close to hers and she whispered, “You are so good to me.” And then she rolled over and was asleep before I had even left her room.
I called Mother to share the moment with her and it made us both get a little weepy. In all these years GM hasn’t recalled a birthday for anyone, not even herself. And while it is not my actual birthday it does feel very special that her mind went somewhere in her sleep and brought her to a celebration.
It reminds me of the unbirthday scenes from Alice in Wonderland. And it makes me feel loved. Must remember to cherish this and put the moment in my pocket for safe keeping.
And while I am at it- a very merry unbirthday to you! How shall we celebrate?
Suspended animation strikes again
You know how when you are waiting for an important phone call everything else in your life seems to slow down and become muted? It’s as if your body and all your surroundings know that once the phone call happens your life will suddenly be divided into markers of time: before the call (BC) or after the call (AC).
Today Mother left for a business trip out of town. This leaving happened BC. I am typing this post BC. That moment where I let the dog back in? BC. And everything just feels so fucking caramel: slow, sticky, overly sweet. It will all change once the PET scan results are in. Even if the results are a much prayed for “all clear” things will be changed. It will always be a realized moment of fear that we met face to face.
I helped GM get dressed this morning and I found myself looking at her pale and pink skin. What is underneath this skin? Is it cancer? It can’t be.
Earlier, before GM had woken up, I found myself in a total brat mood. I was utterly poutful about Mother leaving and “getting to go stay in a hotel”. I also became very afraid- what if something happens and I NEED help? Can I make it through several days on my own? What if GM is having a super aggressive day and I can’t get Mother on the phone? What if I have to answer the phone and deal with News all by myself?
I am trying my best to not dwell on the mights and maybes. I really think that is one of the life lessons that I am forever working on. It’s almost like I have a version of myself that loves to quit and throw herself down an elevator shaft. Knowing that I have this version I have to work hard to either run out ahead of her or be quick enough to reach forward and pull that version back.
Right now GM is napping after watching back to back episodes of Little People, Big World. (anybody else watch this great show? That new heating system is cool.) GM is curled up on her bed, a decades old family blanket is covering her, and a fluffy black cat is tucked into her side purring away. And when I look at her I see my whole life. SO much of myself is connected to this woman. Entire life paths. And with a yank I pull myself back from…
A Tale of Two Appointments
Warning: OB appointment talk is mixed in with GM talk
Yesterday morning I woke GM up early so that I would have plenty of time to get her dressed before we left for my appointment at the OB’s. This morning I woke up GM early so that she would have plenty of time to have something to eat before the “no food after 8:30am” bell struck.
Yesterday morning I was upbeat and chipper. I merrily pulled her sucks on and winked at her as I buttoned her pink oxford shirt. This morning I held back tears of anxiety as I performed the same tasks.
Yesterday morning GM and I arrived right on time to our appointment and tried to amuse ourselves in the lobby waiting for my name to be called. This morning GM was full of anxiety as she could not remember how to urinate. We were almost late to the appointment today as she was so afraid to leave the house as she worried she would have an accident. She didn’t understand what was happening, why it was happening or where it was happening.
Yesterday GM squeezed my toe as the OB pulled out the doppler and we all happily listened to Snork’s heartbeat. This afternoon I squeezed GM’s hand as the tech pushed the radiotracer into her vein at the delicate inner bend of her elbow.
Yesterday was upbeat and happy. Hopeful and intoxicating with relief. Today was tedious and hard. Today I went into overdrive to push the fear out of my body and yet I know it is still squatting.
It is utterly chaotic in my head to have thoughts of Snork, seemingly thriving, and then thoughts of GM maybe not doing so well. I feel lucky and yet unlucky.
This afternoon, as GM was up on a table being slowly pulled through an imaging device, I sat in a dark room waiting, praying. And I can’t say for sure, but in the middle of my sending my hopes and thoughts out into the universe I felt Snork deep within me. And the duality of life right now slays me.
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