Updates 17 Updates
January 5, 2014
New Year, New Life
I haven't wanted to come back to this site, as I don't want to be reminded of chemo, which was truly awful by the time I finished. But, it's been on my mind for a while now that I owe all of you an update. So, 2014 begins on a strange note. Many strange notes.
As mentioned previously, I lost my home, though I do have a sort-of permanent place to stay. It's not ideal, but at least I'm not homeless, which could easily have been a real possibility. (Still could be, in fact.) I had radiation over the summer, and my three-month scan just a few weeks ago. The scan looks fairly clean, so I'm considered still in remission. That made for a fantastic Christmas, though knowing I'll be going back every three months for the next five years puts a tiny damper on the joy. My oncologist retired, which was shocking and distressing, but I met my new one just before Christmas, and she seems ok. I don't have the love for her that I did for the man that saved my life, but I feel much more comfortable now that I have met her. My other doctors - so many, in so many different specialties - remain consistently awesome.
On the negative side, I've been besieged by strange health problems. There was an entire month lost to sleep, which seemed to be related to quitting smoking. I'm in constant pain due to the large amount of scar tissue in my leg. I think my memory is just fine, but my friends and family say, though it is better, it is not as good as it was before chemo. And, now, I have some disturbing internal bleeding which will be addressed on Monday. Not sure what's causing it, but it's been rather painful and stressful. Chances are it's nothing serious, but it'll be nice to have answers. But really, I don't have cancer right now, and that's all that matters. None of these other things have been great, but they are a joke compared to how I used to feel.
On the general-life front, I had a job interview the other day, and I'm waiting to hear back. It seemed to go well, despite my horrid short hair. (Being bald was so much better.) It's rather a pity that I have to look for work that will keep me below the poverty level. But unfortunately, I need to stay on Medicaid. Follow-up cancer care is expensive, and unless I found work that paid an insane salary, premiums, deductibles and co-pays would quickly eat up most of my income. So, it is a bit sad to have to intentionally remain impoverished, but I'm happy to have found a line of work I think will be satisfying. I've developed closer relationships with the friends that stuck around when I was sick, and found that I don't really miss the ones who disappeared during treatment. I feel as though this update is coming across as negative, but in all honesty, I couldn't be more thankful. I got my late boss' family out of my life completely, I'm in remission, I have great relationships with friends and family, and I have found a way out of the legal profession. Certainly, I wish none of this had happened. And I won't breathe easy until the two-year anniversary of finishing chemo, at which point the chances of it returning become minuscule. But the good that came from this far outweighs the bad. For that, I am deeply thankful.
April 7, 2013
This fourth round hasn't been quite as bad as the last one was. At least I'm conscious for a good part of each day. Perhaps it's because I'm in good spirits. I saw my oncologist, and he thinks I may be in remission. I have a PET scan scheduled in two weeks to confirm his belief, but for the moment I'm pretty excited. Even if there is no evidence of cancer, I still have to have two more rounds of chemo, and then radiation, but it's nice to think all this torture is working!
It seemed like I never really recovered from the third round. The neuropathy is constant, which is annoying, though it's not yet at a level to cause serious concern. I had my first filling ever, thanks to chemo side effects, and that caused me to lose a whole day to nervousness. And just as I was feeling better, I came down with a bug. It was kind of like the flu, with all the accompanying aches and exhaustion, but no fever. According to the triage nurse, something is going around, and I was lucky enough to catch it. I recovered with less than a day to go before this fourth round. Not so fun.
But, as I said, this round has so far been tolerable. I'm only 48 hours in, but I feel generally well except for hiccups and awful heartburn. Maybe it's because I'm in better spirits. I've come to terms with the loss of my house. I'm sad, but it's a weight off my shoulders. I'll still have to find a place to live, but that doesn't seem terrible. And my future seems scary - how will I ever earn enough money to recover from all this? But cancer has made me stronger and I think I can make it work.
I suppose my most exciting news really isn't a big deal, but it gives me something to look forward to. A while back, I wrote to Senator Blumenthal requesting a copy of the Affordable Care Act so I can use it to finish my LLM thesis. In my request, I explained why I couldn't afford to print it, and gave a very brief overview of my situation. While I was in the infusion room, I got a call from one of his staff. Apparently my letter made it to the Senator's desk, and he wants to hear my story, my experience with Medicaid, my problems with SSI. I have admired him since I interned at the AG's office when I was in law school, so I'm rather excited about calling the staffer on Monday. I don't expect anything to come of it, except hopefully a copy of the Act, but the more people that know about the struggles young cancer patients face, the better. It feels like we are ignored sometimes, so I'm happy to talk.
March 22, 2013
Losing my home
So today, after meeting with my lawyer, it sank in that I am losing my home. It was obviously going to happen, as I am too sick to work. But the reality is painful. I love my house, I'm so proud of it. But with no job, and no way to raise money to save it, I'm out of luck. I'll probably be moving out before chemotherapy even ends, and I'm just heartbroken. I don't know how I am going to manage the move, or where exactly I will go.
I still try to be positive. A lot of good things have happened to me. But cancer takes so much away. I'll never fully have my health back. I'll never get good insurance rates, and even getting a job seems iffy when I have to explain why I haven't been working. And I'll never get my home back. Right now, my mind is too full to think much about this. But it's a really unfair situation. I keep wondering what I did to deserve everything, and I haven't come up with the smoking gun yet. I really don't like cancer.
March 18, 2013
Round 3 and More Doctors!
This round of chemo has been all about sleep. It started in the infusion room, where I slept through about 5 of the 7 hours I was there. Saturday and Sunday were a loss, too. Sadly, I don't feel this has been a cure for my insomnia. The sleep isn't restful, and I wake up as fatigued as always. But the steroids must finally be doing something this morning, as I've been awake for two solid hours now.
I've picked up a couple more doctors since the second round. First I have to see a gastroenterologist because something is wrong with my stomach. The oncologist couldn't do much, because I was unable to properly describe what is happening. I'm hoping a specialist will be able to decipher my vague complaints of pressure, discomfort and overall weirdness. Oh, and apparently my liver hurts, too. Second, I have a new dentist. Chemo caused me to get my first cavity ever (booooo!) and that needs a filling. It also caused the roots on one of my teeth to become exposed and very sensitive. The dentist was going to bond that tooth, but the Biotene she recommended seems to have solved the problem. Hopefully I'll just need a filling when I go back in a couple of weeks.
Aside from that, all is the same. I'm queasy and achy, and nothing tastes good. Neuropathy has returned with a vengeance and I keep dropping things. I've been trying to make a plan for the future when I'm better, but my fuzzy brain is getting in the way. Overall, cancer is not fun. But, my trip to the conference in Boston is coming up, and I'm very excited for that! I wish nobody else was sick, but it'll be amazing to be surrounded by people in my age group who understand what this is like.
March 3, 2013
Autocorrect rears its ugly head
Unfortunately, I'm stuck without a way to edit. So I just had to point out that "self actual inaction" should, in fact be "self actualization". The mistake was, for a change, not due to chemo brain. Autocorrect usually doesn't cause me too many problems, but that one was bad!!
March 3, 2013
I've been doing a lot of thinking lately. It's part of an effort to keep from feeling like a prisoner as chemo tries to destroy me, though I haven't reached any real conclusions. One of the big questions I have is, "why did I get cancer?" My oncologist told me it was just bad luck, but statistics seem to show that an increasing percentage of people have the same bad luck every year. Without any easy answers, I've decided it must be due to my diet. So, since getting sick, I've been making an effort to eat only natural foods. If I can't pronounce the ingredients, I won't eat it. I have no idea if this will keep me safe, but it seems like a good place to start. Last night I made a great dish with gnocchi, Brussels sprouts, onions and cheese. It was delicious, fast, cheap and easy. And it'll be simple to add even more vegetables next time. I'm hoping my diet changes will prevent recurrence once I'm better, because I never want to go through this again!
The other big subject of thought has been kindness. It's not appropriate to go into details, but over the past 10 months or so, I've seen an incredibly ugly side of humanity. Recent life was challenging even before cancer, and I learned a lot about greed, jealousy, deceit, and a number of other undesirable qualities, all of which started to erode my belief that humans are generally good. However, cancer created an explosion of kindness that took over my life, and it's very heartening.
My doctors and nurses are on the front lines of the "good people" in my life. They are so compassionate and understanding, and do everything to make sure I get through this with as little trauma as possible. It can be hard to find a good doctor, so I am thankful the people at Middlesex Hospital are so good. And my friends and family, of course, have been amazing, though I never questioned their nature.
More surprising is the love I feel from complete strangers, most of whom I will never meet. People have sent me money on here. I have no idea who they are, and I can't properly tell them how much it means to me. Sashka, too, (the founder of this site) is an amazing person I was lucky to connect with. A girl in North Carolina sends cards to cheer me up, and she is so generous with her time and words for me, a complete stranger. A woman who sold me my first head wrap has become a bit of a penpal, and she always has lovely words of encouragement. The people at Salon David are just amazing. The patients and social workers who attend the support group I go to are kind and empathetic. And people whose names I will never know have donated wonderful handmade hats, blankets, quilts and sleep caps. All of this had made me feel so loved and accepted, and has reaffirmed my belief in the goodness of humanity. It's also put me all over the place on Maslow's hierarchy. I'm scrambling to meet basic needs like food and shelter, but the kindness and compassion I've experienced makes me feel closer to self-actual inaction than ever before. And for that reason, I'm almost glad I got sick.
February 26, 2013
While I'm going to try to make this something other than a list of complaints, chemo is really kicking my butt this round. The Prednisone has been destroying my stomach, and I have been incredibly exhausted. Doing almost anything makes me feel weak and nauseated, and I would sleep all the time if my stomach let me. But in a way, that's ok. Without the Claritin in my system, what rest I do get is good. And no signs of bone pain so far.
Unfortunately, in addition to greatly-increased nausea, I've also developed neuropathy in both hands. It's not too bad now, but it will require monitoring. Neuropathy is a side-effect of the Vincristine, and that dose may need to be adjusted. But that worries me, as the chemotherapy is doing a great job of destroying cancer. So I'm hoping the issue will resolve itself. From what I understand, it's not necessarily a permanent side-effect - even if it gets bad, it may go away after chemo.
Fortunately, not all is doom and gloom in my world. I got permission to delay my fourth round of chemo so I can go to a young adult cancer conference at Dana Farber. I am probably more excited than I should be, but it's nice to have something to look forward to. And what could be better than a room full of people my age without cancer? In all honesty, this had been a very isolating experience, so going to the conference will be a good experience. Plus I'm going to spend two nights in Boston with an old friend, and will hopefully see two girls I went to high school with. So, while a vacation does seem a bit extravagant while I'm waiting for the results of my Social Security Disability application, I will say that I'm not paying for a hotel, and I'm getting a ride, so I'm not living large.
February 13, 2013
Wigs and side effects
I got my wig today - was a great experience and I am so happy to have hair again. But, I'm sitting here with a scarf on, because I quickly learned that wigs really are itchy and uncomfortable. Also, even though it's a good quality wig, it doesn't have a long life span. If I wore it every day, it would only last about three months. So for comfort and financial reasons, I won't wear it unless I'm going to see someone other than my parents, Jimm or Lori. Still, it's such a relief to know I can go out without drawing unwanted attention to myself.
Went back to the oncologist today. Some more chemo side effects popped up - surprising, as I thought I was done with feeling unwell until the next infusion on the 22nd. But, I developed mucositis in my mouth and entire GI system. It sounds benign, but it's quite painful and I'm not very happy. In fact, from what I've seen on google, it is apparently the most painful side effect of chemotherapy. It doesn't seem like a lot can be done except to wait it out, although I may raise a fuss and ask for some kind of analgesic if it gets worse. Also, my ear infection, unbeknownst to me, became very bad, so I have to go pick up some antibiotics soon. It's not too painful, so I was surprised to hear it had gotten a lot worse rather than better. It might explain the brief dizzy spells I've had over the past day or two. But, on a good note, I've been sleeping better since I stopped taking Claritin, and the bone pain hasn't been bad.
February 11, 2013
Bald and Bored
We had a heck of a storm this weekend! On Friday morning, I went back to the oncologist for a post-chemo checkup. It went well, and my white blood counts are in the normal range. My tumors are slightly smaller, and it's expected that I will respond well to further rounds of chemotherapy. So, I can go about my daily life now without too much worry until the next infusion. The only issue was that I seem to have picked up an ear infection. But even the ear infection didn't cause my doctor any great concern.
As we drove home from the appointment, the storm began. We were hoping the forecasts were wrong, but it was definitely the worst I can remember seeing. I was unable to leave the house until Sunday! We were completely, literally snowed in. I was getting worried that my ear infection would worsen and I would be stuck without access to medical care. But the roads are finally (sort of) plowed, and my ear feels a bit better. We got about 40" of snow, and poor sick me was forbidden from helping to clear the driveway! Honestly, I would rather have done the driveway by myself if it meant I wasn't sick, but at least having cancer comes with a few benefits.
Chemo seems to have released its grip on me for now. As I was going through it last week, I was surprised at how decent I felt. But now that I'm feeling better, I realize it wasn't a lot of fun, and I have no desire to go through it again. I can't describe the feeling - just a general sense of overwhelming, unpleasant malaise. The prednisone was miserable, and the few days after prednisone were even worse. I have developed some food aversions already, though I had been warned that would happen, so I was careful with what I ate, and am happy to report that my aversions are only to things I didn't love to begin with. Now, I'm essentially ok, although insomnia is driving me crazy. I suspect my sleep issues might be caused by Claritin, which was prescribed to counteract bone pain caused by the Neulasta shot. I have a high pain tolerance, and I'm starting to think some discomfort might be preferable to getting only an hour or two of sleep a night. I'm going to try not taking it for a few days, to see if I can get some rest. Lack of sleep is making me slow and stupid, and it's hard to speak,or write.
On Saturday morning, my hair suddenly changed texture and started falling out. It happened a bit ahead of schedule, and was quite unwelcome, as I had irrationally hoped I might avoid that side effect. Despite the awful roads throughout the state, Jimm managed to make it over here last night to shave my head. I hadn't been too worried about losing my hair, but actually shaving it was fairly traumatic. I am not thrilled to be bald, but at least Jimm had me laughing as he did it. First we did the obligatory mohawk, and then he made me look like Andy from Bella Morte. Then he got rid of the rest of it, and I'm avoiding mirrors for the time being.
February 5, 2013
Day Four Post-Chemo From a Carers Perspective
This update was sent to friends by my mother. My prednisone brain can barely form sentences so I thought this would make an interesting post from the point of the caregiver. - Kris
Well, we are now on our fourth day after chemo and I will have to say it has been much less dramatic than I had feared. I actually got 10 hours sleep last night - something that hasn't happened since we got the first inkling of the problem just before Christmas. You'd think I'd be happy about that, but I feel like I have a zombie brain (well, zombier than usual) and my back is killing me - no bed, however comfortable, is good for my back for that length of time...but I am not looking a gift horse in the mouth, and I am very grateful for the sleep!
Huge accomplishment this morning - Kris was able to put on her new Christmas Uggs from Granny Pat without help!! To this point, her abdomen has been so swollen and her leg so stiff because of the swelling and tumors that even with Jim's help in trying to put them on, wearing her beloved Uggs has been impossible. The joy suffusing her face at this accomplishment was heart-warming, and she was almost bouncing with excitement waiting for Jim to come back so he could see the boots on BOTH feet!
It was also a joy, when I came down stairs, to hear Kris talking to Jim and laughing a full-throated laugh and talking animatedly in a strong voice. It gave me such a feeling of hope and trust in the inner strength that Kris has to get through this.
Tonight she goes back to the Salon where the proprietor has found a wig for her. He will cut and style it, and teach Kris to style it too. David is part of a group of hairdressers around the country who donate their services to cancer victims who will lose their hair due to chemo. He is going to provide the wig at cost and then give Kris all the extras needed to work with it - the "head" to store it on, the tape to stick it to her head! The cleaners etc etc. This is a wonderful gift as the hair loss is, I think, perhaps one of the most psychologically difficult things to anticipate and experience. Kris says she can already feel her hair dying - I cannot quite comprehend what she is going through but she says she can feel a tightness and tingling on her scalp - I have promised to decorate her skull with my new-found Zentangle skills - she will look like a Mighty Maori Warrior!!! Probably a good thing that she will have a wig and she already has a mountain of hats. I have to try to find a non-permanent marker to do this artistic masterpiece - she isn't too keen on me using my permanent markers despite being a fan of my zentangles...poor mixed up child!
To our surprise, because we really didn't know what to expect from her, Kris has two business meetings this week, between the doctor visits and the hospital social worker appointment to help her complete mounds of paperwork for disability benefits (I remember when I worked at WIDE in England, Angela used to spend her days helping clients with this sort of paperwork - I honestly think the government makes it impossible to fill in correctly so they can deny most of the claims because of faulty paperwork!).
The steroid she has to take is making her very agitated - though thankfully no roid-rage - I am not prepared to re-enact "Fight Club" with my daughter! I think it must be very difficult for someone who lives in and with their brain to the extent Kris does to find that instead of being able to alight on a subject and stay for however long it takes to research, the brain can only flit from topic to topic, bouncing around with no real aim in sight. Chemo brain is a real phenomenon, no one really knows why it happens, but it is something Kris will have to learn to adjust to - we have got all new inserts for her Filofax (DayTimer) and she will have to learn to rely on that to keep her thoughts in order and indeed, keep them period. They seem to flit in and out of her mind at will.
So far, the effects of the chemo have been more sleep and behavior oriented - thankfully no nausea - who knows what the next round will bring us - will it be the same, better, or worse, or just plain different - I don't think you can predict it, you just have to roll with whatever comes. Reading blogs has some value, but for the most part they just cause nervous anticipation. Everyone reacts to the chemo differently, everyone copes with the hair loss in their own way, some people have almost instant reduction in tumor size like Kris, others don't. But we are prepared to so everything we can to help get Kris get through this. And Kristen's friends have been amazing - she has found much strength in the support of her friends, and she is relishing the opportunity to interact with her far-away relatives (mind you, some of her uncle's references have been a bit of a puzzle!! Even my weird brain does not come close to the unusual aspects of my brother's brain - "meeting" through iMessage, though very super, really concentrates his way of thinking. How I wish we'd all had the opportunity to meet face-to-face and know each other better - I know that both Kris and Dan would love Jeremy and his interests and his way of thinking about the world - life isn't always the way we want though! Their opportunity to know Leta was very special and both have fantastic memories of adventures in New York City).
Despite 10 hours sleep last night, I know that this update is devoid of commas, other important points of punctuation and good grammar - more so than usual. Sorry about that - Leta, I hope you can recover from the wincing and twitching reading my rambles must bring on - I can imagine you desperate to wield a red pencil!
Kris has a very special bracelet made for patients undergoing chemo - it has cubes with the numbers 1 to 6 and between each cube is a big bead for chemo day, then a bead for the day you have the Nulasta (which helps white blood cells to grow) and 3 beads for the prednisone tablets. There is a charm you move between the beads when you have completed each of those chemo treatment days - she has moved her Hope charm to the left hand side of cubic bead #2 and it will stay there till February 22nd - so it's 1 down, 5 to go!! This is a high point! And one we are so very grateful for as the week before Kristen's first chemo, her cancer was growing so fast and she was feeling so terrible that she was almost afraid to sleep because she thought she would die during the night. This morning she said that despite the chemo effects, she feels way better than she did last week. You have no idea how much courage that gave me to carry on this journey.
I just love Kris so much and I am cheering on the Mohawk Warrior who is inside her beating this cancer to oblivion! He's an ugly bugger, but it seems he is effective!!! Send him your power thoughts so he can keep up the good work!
February 4, 2013
Chemotherapy continues to kick my butt, but I had great success this morning. The oncologist said my tumors should respond rapidly to the R-CHOP, and I guess he was right. This morning, for the first time in over a month, I was able to get my shoe on by myself! I felt so proud of myself. I can't wait for my father to wake up so I can show him - he's the only one that's been able to help me get them on!
February 3, 2013
Coping with Chemo - Day 1
So it's been more than 24 hours since my first chemotherapy session. Yesterday was not fun at all - the allergic reaction in particular was terrifying. And I was disappointed in myself for not being able to handle the whole bag of Rituxan. But mostly it was one long, unpleasant blur. The highlight: having my port accessed was not painful at all. Someone had described it as having a sewing needle jammed into one's chest. It was nothing like that! I didn't watch the process, and I wouldn't have known it was done if the nurse hadn't said so. The low point: coming home so exhausted I didn't think I'd make it to bed. (A short nap took care of that.)
Today, I woke up at 04:00 (my usual waking hour since all this started), had a small breakfast and took my prednisone. Overall, this first day out wasn't bad. A few moments of nausea, some unpleasant restlessness from the steroids, and a lot of naps. Oh, and lots of saltines, as I haven't been in the mood to eat most things I usually like. I KNOW I should stay away from online info, but I keep sneaking on to forums and reading the first day is tolerable, but it goes downhill from there. So I'm a bit hesitant to go to sleep, as if staying awake could prolong the inevitable.
Through all this, I still don't really feel like I have cancer. Sure, I have scars, and ports, tumors so big you can see them through my skin, and ten hours of chemo under my belt. I'm even planning to shave my head next weekend. But I am not walking around feeling or acting like a cancer patient. At least not what I think a cancer patient should be like. It's more like an extra-tired version of me. In some ways, that's become a problem. I've downplayed this because I don't want people to pity me. But some people who are very important to me have been painfully uninterested in the situation. It turns out I've done such a good job of telling them I'm fine that they really didn't think this has been a big deal. I don't know how to remedy that, as I don't want this to be all about me. I don't want to scare people, or see anyone else suffer. Bt the perfection of the balancing act will hopefully come later. For now, I'm just thankful my parents have been so great about helping out.
February 3, 2013
First R-CHOP Infusion Day
Begin forwarded message:
From: Jakki Garlans
Date: February 2, 2013, 15:27:13 EST
To: Kris Garlans
Subject: At Kristen's request, I am guest blogger today, her first day of chemo. The fear of the unknown is overwhelming, I don't think we are going to come to the next sessions with a spring in our steps, but at least we will know what to expect!
At Kristen's request, I am guest blogger today, her first day of chemo. The fear of the unknown is overwhelming, I don't think we are going to come to the next sessions with a spring in our steps, but at least we will know what to expect!
Early start this morning; Eeva let Kris cuddle her all night. How do dogs have such an unerring knowledge of just what we need? She is most definitely aware there is something wrong. Still on the bright side, this is the first day of the route to Kristen's cure and future good health. This is a blip, a bloody big blip to be sure, and it is already apparent that that cliche of rethinking ones life is not in fact so far from the truth.
We got here early and had to wait about 5 minutes for Kristen's fast track blood draw. She was not that impressed by my suggestion for thinking of me as her rock, specifically her rock of Gibraltar, the English rock with monkeys on top that has withstood all sorts of assaults by natural and enemy forces. I thought it was an inspired analogy but in true form she rolled her eyes.
Actually I am getting quite used to the eye rolls! This morning there weren't any adult flu masks when I came in so I was forced to use the Mickey Mouse version. Personally I think it looks stunning with my purple highlights and my multi-coloured coat. Kris apparently doesn't agree 100% but we have a photo to prove it!
Well good news! Her cancer has been staged at 2B that means it is only below the abdomen but the B means she has other symptoms like night sweats. Also the tumors are bulky (over 10cm) which will most likely mean a round of radiation at the end of chemo. The top of the leg is the easiest and most successful to give it.
One thing we did find out is that it is NOT A GOOD THING to read the Internet for information! Apparently the toxins are not excreted through the skin so Eeva is safe if she licks Kris and we can hug her without risking Chernobyl- type burns. This is a huge relief as I was imagining her eating through our new bed overnight. A Kris-shaped hole in the mattress could void
Kristen's nurse, Robyn, is very nice, compassionate and answers Kristen's questions with respect and brevity. The saline is going in now; in about 45 minutes the Rituxan starts. Kris is very nervous but Robyn is already mixing an extra dose of Ativan anti-anxiety meds to go in just prior to the Rituxan. Lovely lady!!
Lethargy is overtaking us both - be back later.
I have, apparently, taken to periods of deep sleep from which I suddenly wake and make gnomic comments like, "Kris are you ready for your eye patch?" or "I don't think this chemo would work quite as well if i had to stuff you in a single sleeping bag." My reputation as a capable carer is heading into the toilet! There was the other notable time when I woke up from a brief nod off with jaw paralysis! OMG! But I realize the ginger candy I'd been sucking before I nodded off had stuck my teeth together. Without a doubt an eventful day!
I am getting coffee as the Rituxan will be going in soon and I need to be awake for that as Kris is very worried. Kris was asking about the possible reaction and Robyn was clearly listing them for her. It is going to take about 4 hours for this first infusion so the body can acclimate to this stuff and they can observe reactions. So anyway after about 5 minutes Kris asked me, with great insistence to tell Robyn her lips were tingling. In a pride deflating check it appeared that the drug had not reached her body yet - it was just saline in the drip. Medical diagnosis: mind reaction to the slice of chocolate banana bread she just had!
Well Kris has just had a reaction to the drugs - itching and swelling of the nose and throat. The nurses jumped into action dripping stuff through the port and injecting it through little valves in the multitudes of tubes Kris seems to be able to wrap in glorious knots merely by looking at the IV pole. I won't even try to describe what she has achieved after one of her frequent trips to the bathroom! :)
The strange feelings in her body brought on quite a severe panic attack but Robyn complimented Kris on how well she handled the allergic reaction and how well she'd controlled the panic.
Jim is coming to take over soon; I feel like I should be here for the whole time. Definitely a full scale attack of Protective Mothering going on here!:)
Jim/dad takes over for the second half. Well, coming over I expected to view this shriveled prune, but was told to stop at D&D to get a toasted bagel with cream cheese, Boston Cream donuts and large iced coffee, all of which the patient devoured. Sat around watching the IV drip so slowly, Kristen nodding off or heading off to the rest rooms. TG for my Kindle and a plethora of inexpensive space operas on Amazon. The coffee was OK but they turned off and cleaned the pot with a couple of hours left to go in the day. I get annoyed with people who believe the last cup of coffee should be NLT 2PM. So much for the afternoon shift. The most exciting few moments came when the nurse used a syringe to push one of the drugs into the tube into Kris. Extreme excitement came when they cleaned up and told us we could head home. I am not sure if I pushed Kris out the office door in my excitement to get moving. Anyway, just as we got into the car a heavy snow squall blew through making the roads slick. Love AWD and all the anti-skid software. Kris couldn't wait to open the car door, get into the house and climb into our new Tempurpedic bed. Lights out!
January 30, 2013
PET Scans and Preparation
So far, it seems like cancer involves a lot of going to the bathroom. I had a PET scan yesterday, and it was mostly uneventful. We arrived at the radiologist's office, and I was taken right back. The doctor injected me with radioactive sugar, and I was to sit relaxing in a dark room for 90 minutes while the sugar traveled through my system. Unfortunately, the nurse who set up the appointment told me to drink a lot before arriving, so I had about 40oz of water just after waking up. That led to me pressing furiously on the intercom every 30 minutes, desperate to use the bathroom. And the radiologist himself had to let me out of my waiting room between scans, which was obviously annoying for him. There was some muttering about how the scheduling team needs to stop telling people to drink water before arriving.
Once I was ready to be scanned (and after the radiologist strongly suggested I go to the bathroom for a fourth time "just in case"), I hopped on the table. There was a brief moment of panic about 3 minutes in, when the radiologist shut the machine down and ran into the room, thinking I was having an allergic reaction and dying on his table. As it turned out, he had the wrong paperwork in front of him, and had not been expecting to see such a swollen leg. That was sorted out after about 5 minutes, and the scan resumed. I fell asleep in the tube, and was a bit sad when it ended.
The only really interesting part came at the end, when I was given a card to carry around. Apparently the radiation in my body could set off "terrorist detectors", and the card explains to authorities why I am glowing. I was slightly tempted to go hang out by the Federal courthouse, but the thought of a takedown with my newly-implanted port made me cringe.
Since the scan, I've been sleeping and preparing for chemo. I have a two-page list of things to do, and I'm not thrilled about it. I had lunch with one of my favorite clients today, and it was nice to get out. But I only have one or two good hours in a day, where I'm not exhausted and in pain. So I've mostly kept busy with phone calls and paperwork, and my parents are running the errands that require leaving the house. Walgreens is their new home, as I've had so many prescriptions to pick up recently. I feel like this is a countdown to a vacation I don't want to take.
January 26, 2013
What it's Like to Get a Port
In what seems to be becoming a post-surgery ritual, I only dozed for about two hours last night. So I question my eloquence right now, but what better way to pass the early morning hours than by writing? I don't know why I'm awake, as I wasn't too uncomfortable during the night, but sleep was hard to come by. It's ok though, as it means I'll sleep well tonight.
Once again, I am truly impressed with the service at Middlesex Hospital. I'm sure it won't always be the case, but so far I have never had to wait a long time to be seen. In fact, things went so well yesterday morning that I thought I screwed up. When surgery was scheduled, I was told I couldn't eat after midnight, but I could drink clear liquids up to 2 hours before arrival at the hospital. So of course I cut it to the wire, and finished my black coffee at 10:30 on the dot. At 10:35, I received a call that my surgeon was running early (!) and was asked to come in at 11:45. Great! Less time to wait around! But when I got to registration, the woman who checked me in told me I was supposed to stop drinking 4 hours before arriving. Fortunately, and after a few minutes of worry and trying to listen to some hushed conversation in the back room, I was told that my beverage consumption wasn't a big deal.
I changed into one of the nifty hospital gowns my hospital is testing (they are disposable, big enough to satisfy the most modest of patients, attach to a tube and have air blown inside, which can be adjusted via a dial to just the perfect temperature), had an IV inserted, got weighed, took my blood pressure, adjusted my gown temperature, etc. Then I hopped on a gurney to have the nurse help me get compression socks on, as the swelling in my leg still prevents me from reaching my feet. My parents were brought back, and I settled down for what I was told would be a wait of at least an hour. But, not five minutes later, the surgeon and anesthesiologist came out to discuss the procedure, answer questions, and have me wheeled into the OR.
After I arrived at the OR and transferred to the table for surgery, I realized with great embarrassment that I had to pee. One minute I was fine, and the next, I was worried I wouldn't make it through surgery without having an accident. The nurses agreed that it was ok for me to go, so I dashed out of the OR, toting my IV bag. The looks on the faces of the surgeon, anesthesiologist, and nice intern from a med school in the Bahamas were priceless, and with great shame I yelled back to them that I REALLY HAD TO PEE AND I'D BE RIGHT BACK. I'm guessing they don't see patients running away too often, particularly ones that had been as calm as me 5 minutes earlier.
After the trip to the restroom, I returned to the OR and got settled. I don't remember anything after the Versed went through my IV. I woke up in the recovery room, coughing pitifully and begging for a popsicle. The cough was as bad as it was the time I had a breathing tube removed, but I was reassured that there had been no tube. I'm pretty sure I believe that, as I don't have a sore throat now. The popsicle took care of the coughing nicely, and after an x-ray to make sure the port was in properly, I got dressed and my parents came back to sit with me. I don't know how long I was unconscious in recovery (the surgery itself was, I was told, about 40 minutes) but I went home about half an hour after waking up. There really isn't a whole lot more to say about the surgery itself. I got a nifty rubber bracelet to wear, both to remind me what brand of port I have (a Bard Power Port, if you're curious) and to alert any emergency personnel should I happen to fall unconscious or something. The two incisions themselves, now skillfully glued closed, are about 1 inch and 1/2 inch. I wish I could make the procedure sound exciting, but it was too uneventful, even after giving it my best attempt at exaggeration.
I was nervous about this surgery, as the last one was so horrible. But so far so good. It feels no worse than getting smashed in the chest with a lacrosse ball. The surgery drugs, or something, put me in a fantastic mood after I arrived home. I wandered around aimlessly, apparently did a lot of stupid things as the anesthesia slowly wore off, had delicious pizza for dinner and had lovely FaceTime chats with my brother and his wife in Korea and my grandmother in Australia. Then I sat with my mom and talked about how thankful I have been recently. I'm still amazed by the kindness of strangers, and the compassion of my friends. It feels like my relationship with both my parents has taken on a new dimension, too. Despite all the fears about dying etc, so many things that used to worry me are now just background noise. I have bad moments, sure, but for the first time in years, I also feel true happiness. I probably would never realized how blessed I am if I hadn't gotten cancer. Apparently this feeling is common to a lot of people who have near-death experiences or life-threatening illnesses. It's so wonderful that I'm almost glad I got sick. Almost.
January 24, 2013
My Diagnosis Story
I try not to frequent cancer support boards. The posts there tend to be scary and depressing, and that's not what I want to see right now. But, I've noticed a lot of people sign up to ask whether it is possible that they have lymphoma. There really isn't a way to diagnose someone over the internet. For those who have been diagnosed, our stories are all so different. There isn't one path to travel. However, I wanted to share my "diagnosis story" in case someone out there wants some information or reassurance.
My diagnosis was quick. Unlike many people, I didn't have to go from doctor to doctor looking for an answer. Instead, it seemed like one day I was healthy and the next I had cancer. In retrospect, I had become increasingly tired, but I wasn't concerned, as I had a very stressful year. (Actually, I just assumed I had become pathologically lazy, so lymphoma was almost good news!) I had also been having horrible night sweats for at least four or five months, but it never crossed my mind that something could be wrong.
For a few months, I noticed that my leg was sore, though for the most part it only really bothered me when I was walking along the sidewalk in high heels. Everyone knows heels are bad, and I figured I was paying the price for looking "professional". But, one night, I was visiting my parents and decided to shower. As I was getting undressed, I looked down and was shocked at how fat I had become. My right leg was HUGE. I had a serious cankle going on, and no muscle definition to speak of. I spent a moment or two cursing my poor diet, until I looked at my left leg and realized it was the same, normal-looking leg I'd always had.
My initial fear was a blood clot. After a bit of debate about whether or not I could wait to call a doctor, I decided to drive myself to the emergency room rather than worry all night. I was admitted and seen quickly by a physician. He, too, was worried about a blood clot, so he ordered an ultrasound. Thankfully, that test revealed my veins were fine. But it also showed enlarged lymph nodes in my groin. I was then, still blissfully unaware of what was going through the doctor's mind, sent for a CAT scan with radioactive iodine. That scan was sent off to a doctor in Australia (outsourcing never ceases to amaze me) and I settled back in my cozy hospital bed to wait for the results.
About an hour after my CAT scan, the ER doctor came in and bluntly told me that he thought I had cancer. Good news: it wasn't in my ovaries. Bad news: pretty much everything else. His bedside manner was questionable, but he was very clear when providing information. He referred me to an oncologist, who was able to see me two days later. After a few minutes of crying and freaking out, I spent those two days convinced I was fine. But, the moment the oncologist walked in and felt my lymph nodes, he said there was no doubt I had lymphoma. One of my nodes was 8cm in diameter, and others were getting close to that size. (How I missed those, I'll never know!)
A few days after my first oncology appointment, I went to a surgeon for a consult. Several days after that, I had a surgical biopsy. The surgeon removed a thumb-sized piece of one of my lymph nodes, split it up, and sent the pieces off to two pathology labs. I spent about three hours in the hospital, and happily went home.
I expected the surgery to be a breeze. After all, I had emergency surgery to have my gallbladder removed a few months earlier, and I didn't miss a day of work for it, or for any of the gallbladder attacks I had experienced before realizing something was wrong. But, the recovery from the biopsy was dreadful. My lymph nodes seemed to blow up so it felt and looked like I was carrying around several baseballs in my upper leg. And overnight, I gained 20 pounds - all in my leg! The glue holding my incision together busted open, and I was "leaking". I was in agony, couldn't bend my leg, couldn't walk, couldn't dress myself or shower properly, could barely get to the toilet. I went to my PCP the next day, and he gasped in horror/sympathy before regaining his professional demeanor. I was sent home with a prescription for dilaudid and compression stockings, and spent more than a week on the couch before I was able to start getting around again.
The pathology report was expected to take about two weeks. Fortunately, the difficult recovery made the time fly by. I saw the surgeon again nine days after the biopsy, and was told I was healing nicely despite the pain and swelling. He also gave me a preliminary diagnosis - some form of B-cell Non-Hodgkins Lymphoma. The final results weren't in, though, and I'd have to wait to see my oncologist. He also said I probably knew more abut cancer than he did, so he was unable to answer any questions. But, he did schedule me to have a port put in to my chest, as there was no question that I would be having chemotherapy.
Finally, one month and three days after I first went to the ER, I saw the oncologist again. I had done some reading on my own, so I wasn't surprised to hear I had Diffuse Large B-Cell Non-Hodgkin's Lymphoma, and that it was growing very fast. The science of my disease isn't particularly important to me, so we spent the meeting discussing the next steps.
The next steps ended up being ok. Lots of blood tests, and echocardiogram, a PET scan and several more consultations. Fortunately, my staging process does not involve the dreaded bone marrow biopsy, although I will have to face that at some point in the future. I've been put on a medicine to reduce uric acid in an attempt to prevent tumor lysis, and I start chemotherapy in a week. It feels like a full-time job, but it hasn't been bad. Chemo may be a different story, but I haven't crossed that bridge yet.
Honestly, I consider myself lucky. I rarely go to the doctor, and usually come up with simple explanations for how I feel. If I hadn't had swelling in my leg, I probably would have continued to assume I was stressed or lazy. If I hadn't lost my job, I would have been too afraid to ask for time off to go to the doctor even if I wanted to. Right now, I feel quite ill. I'm so tired and achy that it's hard to do anything, and it's disturbing to realize I would have ignored it without visible symptoms. It's going to be tough to "retrain" myself to speak up when something doesn't feel right. But the stars aligned for me, and I have a great team of doctors working to keep me alive, and, hopefully, to cure me.
If you are worried that you might have cancer, the only thing I can suggest is that you go to the doctor, even if you don't have health insurance. So many things can cause the same symptoms, and there is no way to tell what is wrong over the internet. My swollen leg is caused by cancer. Yours might be caused by an infection, a blood clot, gout, or any number of other things. My cancer presents itself differently in different people, and you might have it even though you are cankle-free. Stay away from medical sites as much as possible, because they aren't helpful without a doctor's guidance and appropriate tests. Don't ignore things. Make a list of symptoms to bring to the doctor. And don't be offended if people on cancer forums aren't interested in diagnosing you. We just know from sad experience that nothing is a good substitute for proper medical advice.
January 24, 2013
It's 7:30 in the morning, and I've already been up for several hours. As the countdown to chemotherapy day starts in earnest, sleep has become more elusive. It's hard to know what to say. I am generally upbeat about this, but when I try to write or talk about it, all my negative feelings come pouring out. And as I doubt anyone wants to hear me complain, I just keep quiet. I truly am thankful for a lot of things. I might be better someday, I caught my cancer early enough, I have a great family, my friends are amazing, and I have experienced the kindness of many strangers, both here and elsewhere. But, the pain, the exhaustion and malaise, the fear of chemotherapy and the future - those are the things that come to mind as I'm lying here waiting for the time to pass.