I don’t have cancer anymore

I don’t have cancer anymore.

Just got back from the oncologist’s about an hour ago, spent some time on the phone telling immediate family, and now to post the news on the town square.
I don’t have cancer anymore. The phrase the doctor used was “complete remission.” The PET scan came back clean and the next step is a CAT scan in three months to see if the cure is effected utterly. My emotional reaction to this news comes in two forms: first, the trickle-in; second, the trickle-out.

The trickle-in goes like this: the PET scan went down last Thursday and the resulting images were posted to my online medical records by Thursday night. They looked pretty clear, but that doesn’t count. I am a law student. I am not trained to interpret these images. For all I know the radiologist or oncologist will look at the scans and, pointing, say, “No, kid, that’s not your liver. It’s an after-market air conditioning condenser for a 1957 Studebaker Silver Hawk. Any explanation?”

So I have to wait.

Last Friday, the radiologist report is up. Says “complete response to treatment.” Says it in three different places. Susie calls the oncologist’s office and leaves a message with the head nurse. Because the radiologist isn’t enough either. The radiologist didn’t order the needles into my arms, the poisons into my body. No call back. It’s the weekend.

There isn’t going to be a callback at least until Monday.

Debbie, the wonder-nurse, a fair appellation because she is great, calls back on Tuesday. She says the PET scan results are pretty good. “Complete response!” she said.

But she wasn’t the source of my misery and deliverance. I have to find the oncologists, twist arms dangerously behind backs, screaming “Say it, MFer, say it! Say it’s over! Say I don’t have cancer! Or you can scratch your left armpit behind your back with your right arm! SAY IT!!!!”

Today’s appointment was at 11AM. I didn’t have to twist anything.

It’s over. I don’t have cancer.

I took a victory lap around the waiting room, trying to celebrate while giving a smile to those who aren’t done yet. One girl, about 12, looked pretty low, but I got a smile out of her when I, taking off my tweed cap, told her how cool her haircut looked: just like mine. I left on my pet parting line:

“It’s been fun, but I am going to leave anyways!”

And that’s the trickle-in.

The trickle-out comes like this: all I want to do is take a nap and clean the entire freaking house. I want to finish a half-dozen unfinished projects that were started before I got sick. I want to start new projects and clean out the old. “What about reflecting on what has just happened to you and your family?” some may ask. “Assholesezwhat?” I reply with a look of wry disapproval. I have no interest in sitting down and rehashing everything that happened over the last six months. A few times last week, I had a good weep in frustration and anger and confusion. But I am going to let that trickle-out and not try to void it all in one geyser of pain. First, I doubt that it works that way. Second, I imagine it would paralyze me for longer than I feel like being inanimate. I’ve been confined for long enough at this point: I would like to do something else for a while, thank you.

And the weather is just too nice to turn my back on it and mope longer. It will come in drips and drabs, on dark days and produced by near-random triggers. I get that. As I have said before, on the list of bad shit that has happened to me, cancer barely makes the top 5.

But I don’t have cancer anymore.

And, Lord, if you could arrange say four years of pretty smooth sailing with no miscarriages, lethal diseases, addictions, family fractures, fatalities of people very close to me, break-ups, house fires, mysterious disappearances….I would be most grateful, Lord. Not that I am not grateful for this, but I know you saved my ass because you have things you want me to do. Fine, only too glad to do them. But smooth the path for a while as I get back into shape.

I’m feeling better as the days go by and I hope all of you are as well. The night has passed, the dawn approacheth, and the morn is radiant with promise.

And I don’t have cancer anymore.

Round Six: The Prelude and Kick-Off

The results are in.  Chemo Round 5 has been the worst one yet.  Worse than the one in the hospital.  At least Victor felt a little better after that infusion.  Okay, that’s because he was so sick that only chemo could make him feel better, but still.  Round 5 sucked.  Maybe it felt that way because Victor was feeling so much better during Round 4, the weather was spring-like and warm, and we were able to be pretty social…and then Round 5 not only knocked him down the well, but repeatedly mocked him and then pushed him down as he tried to crawl back out.  The spring weather disappeared, windows were closed, wool coats had to be worn again and spirits plummeted.  For most of this ride, we’ve tried to be hopeful and bright as much as possible, but just couldn’t do it this time.  The cumulative effects of nearly six months of cancer, stress and confusion caught up with us, so we did our best to ride it out without collapsing.

I go into work 1-2 times a week, and came home in tears two Tuesdays in a row.  I was so exhausted and emotionally worn out that I couldn’t even finish the day.  My coworkers were, of course, absolutely incredible and I actually cried on my boss’s shoulder one afternoon.  I hadn’t been sleeping well for months.  I could sleep for 8-9 hours, but I’d wake up every 90 minutes, all night long.  Even though Victor had been feeling better for a while, I was still in caretaker mode, waking up at night if I heard him move around and feeling generally hyper-vigilant during the day, even though I didn’t need to worry about him as much.  I felt like I had way too much to do during the day and could never get it all done.  The smallest things (brushing my hair, microwaving frozen mac and cheese, feeding the cats) felt enormously draining.  Meanwhile, Victor was struggling with worsening neuropathy, constant acid reflux, headaches and an overall feeling of malaise and exhaustion.  We called the doctor three times between Round 5 and Round 6, which is a record.  When you have cancer, your doctor wants you to call about every tiny little symptom, just in case it is a sign of something bigger.  Usually, you call, talk to the nurse, she consults the doctor and he says everything sounds okay.  The first time, I thought I heard Victor wheezing and he was feeling short of breath, so we called the nurse and told her his symptoms.  Apparently, the doctor was concerned enough to schedule Victor an urgent care appointment for that afternoon and could we come in within the next hour?  I had to wake him from a nap to go to urgent care.  We arrive, find out he has to have his blood drawn (he was thrilled) and a chest x-ray, wait for about 30 minutes, see the urgent care nurse, she says he’s dehydrated (too much Coke and coffee and not enough water) and wants to give him IV fluids, which Victor refuses because he hates needles and feels like he can just go home and drink copious amounts of fluids.  Oh, and one of the chemo drugs might be causing heart damage, so the oncologist ordered an echocardiogram for the next day.  Amid dire warnings about the dangers of dehydration (fainting, heart problems, etc), we leave urgent care and go home.  We went back the next day to see the oncologist before the echocardiogram.  Everything is fine.  A few days later, Victor has the usual bone pain from his Neulasta shot, but Claritin didn’t make it go away.  He survived for a few days on ibuprofen and oxycodone, feeling spacey and cranky, but still in pain.  Then, about a week later, Victor’s right shoulder and both hip joints suddenly start hurting.  A lot.  We call the doctor again.  They said to use ibuprofen, ice and leftover oxycodone, and to call if it didn’t improve.  Two days later, we call them again.  He was scheduled to start Round 6 that Thursday (April 12), but that was hard to imagine.  He already felt like complete sh*t, and the prospect of feeling even worse was not appealing.

On April 12, we haul our cranky selves over to the Cancer Center at 8am.  Blood draw was rough; he still has quite a bruise from that ordeal.  We see the oncologist, who diagnoses Victor with tendonitis, and prescribes steroids, several painkillers (Diclofenac gel and 20mg oxycodone) and a sling.  The tendonitis is likely due to near constant use of his laptop over the past 6 months.  One day, Victor’s already irritated shoulder was in a weird position for a few hours, and suddenly, he’s in a lot of pain.  Dr Maillard wanted to postpone chemo for a few days to give the shoulder a chance to heal, since Victor can’t take ibuprofen for a week after starting chemo.  We agree and go home to take a nap.  Victor wakes up feeling much better, thank goodness.  We were so relieved that the new drugs were working.

Over the next few days, we alternated between sleeping a lot and cleaning the house, which felt great.  It was one of those weekends when you sleep for 9 hours, wake up for breakfast, take an afternoon nap, wake up to watch a movie and eat dinner, and go to bed early.  We went to an antique shop on Saturday, and laughed a lot with dear friends and family on Sunday, which always helps lift our spirits.  Otherwise, we slept.  Sadly, we missed a few fun events, including the Detroit Free Legal Aid Clinic’s Spring Reception and a poker game with some of Victor’s law school friends, but we really needed to rest.

I recently heard about the concept of sleep debt, which is the cumulative effect of not getting enough sleep.  According to Scientific American, “Studies show that short-term sleep deprivation leads to a foggy brain, worsened vision, impaired driving, and trouble remembering. Long-term effects include obesity, insulin resistance, and heart disease. And most Americans suffer from chronic deprivation.”  By this point, we were deep in sleep debt, and needed to make a few large deposits to keep the creditors at bay.  It is amazing how much better we both felt after sleeping most of the weekend.  How simple, yet so difficult.  We spend much of our lives sleep-deprived and caffeinated, awake, but not really here.  I am learning that sleep is just as important as all the things I need to get done during the day.  Sleep is important work, crucial hours our bodies must have to repair and renew.  Personally, I had gotten to the point where coffee couldn’t keep me awake or allow me to concentrate.  Eventually, I found myself melting down emotionally if I drank any coffee at all.  Only sleep would work, and I gave in.

By Monday morning, everyone was feeling much better and the house was clean.  Even waking up at 6:30am for chemo wasn’t that bad.  Two more days of chemo, and we are (hopefully) done!

As usual, the past few weeks have been sprinkled with bright spots (connecting with old and new friends, sunny days, kitty antics, morning snuggles, hugs, cards, emails, etc) which have always bolstered us, offering a safe refuge from the storm of this long illness.  Honestly, we don’t know what we would have done without our truly astounding community of support, both far and near.  Each one of you is a bright spot, and you have saved us from despair many, many times.  We couldn’t be more grateful.

Chemo Round 5 and the space between

The past few weeks have had many ups and downs, but decidedly more ups than downs.  More living, less stress.  More fun, less arguing.  The weather has been absolutely beautiful, and our house in the spring is the loveliest place I have ever lived.  So wonderful to wear sandals and open all the windows, or lie back on the hammock on our porch, listening to the frogs singing.  Our cats, Phil and Arthur, get so excited at this time of year and it’s fun to watch them run around the house or laze in a patch of sunlight.  They are practically living on our screened-in porch, which they have free access to now that spring is here.  When they come in to one of our rooms for a nap, their fur smells like warm wind and new grass.  Cats help.  They really do.  Cats make cancer, fear, stress and confusion seem far, far away sometimes.   The most wonderful mornings are when Arthur wakes Victor up in his room so he’ll come into my room, and I briefly wake up to my sweet husband snuggling next to me while both cats groom each other and settle in for a nap at the foot of my bed.  The early morning sunlight is golden, the newly budding trees are tipped with green, and the world is warm and sweet and safe.  And we drift off to sleep again, all four of us.

We’ve been exploring the house a lot more instead of staying in Victor’s room all day.  Victor and his parents even started to explore the surrounding fields a little, and found a spring bubbling up just past the temporary pond that disappears in the heat of the summer.  Right now, though, that tiny, shallow pond (more like an enormous puddle) is home to at least one pair of mallard ducks, who will most likely be raising a family soon.  It’s a single-family pond.  On a whim, we saw The Artist with Erin and Earl at the Michigan Theater one Friday night, and started a trend of seeing them every Friday since.  We’ve had many visitors and spent time with many friends, both new and old.  Lily turned 20 on March 19, and we had a lovely chat with her that night.  Victor even attended his family’s annual St Patrick’s Day gathering.  Other days, we’ve worked on projects side-by-side, watched movies and listened to music during several peaceful spring evenings.  Victor’s restoring an antique fan.  I’ve been going through summer clothes and repairing what has been torn, replacing buttons, etc.  One night, we watched a fantastic documentary on The Runaways called Edgeplay, as well as The Runaways film, which was produced by Joan Jett, who was played by that girl from the Twilight movies and did such a good job that I barely recognized her.  A few days before, we’d stumbled across the 25th Anniversary Rock & Roll Hall of Fame concert, which was amazing, especially Gimme Shelter and The Ghost of Tom Joad.  Every visitor to our home since then has been shown both YouTube videos, almost upon arrival. It’s these evenings that help restore us, a bolster against early chemo mornings, emotional and physical exhaustion, Prednisone, constant sore throats (I had a cold for 4 weeks and Victor’s been dealing with acid reflux) and any number of other random worries.

Chemo Round 5 started on Thursday and ends today with the last dose of Prednisone.  The infusions weren’t too bad, but we are both ready to be done.  On Thursday, we arrived at the Cancer Center at 9:30am for his blood draw, and were ready for the oncologist by 10am.  Chemo was supposed to start at 11:30, but we waited in the lobby for nearly three hours before the infusion started.  We still have no idea why it took so long.  Victor’s oncologist agreed that we should reduce the vincristine in order to improve the neuropathy and apparently, Victor’s platelets are low, so maybe there was some confusion about dosage or something.  No need to worry about low platelets; his blood is clotting just fine.  The numbers are only slightly below normal, and will come back up soon.

Round 6 starts on April 12, which is less than three weeks away.  After chemo is over, Victor will have a PET or CT scan to make sure the cancer is gone, and then he will come back for scans every three months for a while.  If there’s any cancer left, he may get radiation, but we won’t know that for a few weeks. In early May, Victor will have surgery on his deviated septum, which will hopefully help him sleep better.  He has Obstructive Sleep Apnea and hasn’t been able to wear his CPAP since early December, after aspirating into it one night in the hospital, so his sleep quality sucks and he’s tired all the time.  He had an appointment with the Alternatives to CPAP program at UM two weeks ago, where he met with an oral surgeon, ear/nose/throat doctor, a neurologist and a sleep specialist.  During a series of tests, we found out that his airway is 90% blocked when he is lying down, and 75% blocked while sitting up.  They thought the septoplasty would be the least invasive way to help open his airway, but if that doesn’t work, they are considering a Uvulopalatopharyngoplasty (say that three times fast), which will remove his tonsils, adenoids and uvula.  The lymphoma is top priority right now, but we’re glad that there’s a plan in place to address his sleep issues once chemo is over.

Yes, there is light at the end of the tunnel, but we’re almost too tired to celebrate, or at least it feels that way today.  Maybe in a few days, after waking to morning snuggles, two cats curled up at our feet, with early sunlight streaming across the bed, it will be easier to think about the way going forward.  Or maybe we will simply live in that moment and savor its beauty for as long as we can, feeling peace in knowing that the future is composed of many such moments, strung together across time, and every one is beautiful.

Chemo Round 4: The Aftermath

Chemo Round 4 wrapped up on Saturday.  In several ways, this has definitely been the best one yet.  Side effects are minimal, and Victor’s had more energy, despite the usual moodiness from the Prednisone.  However, since he’s sleeping less, he’s more restless and bored, so we are trying to come up with interesting things to do.  He had great nurses, IV insertions weren’t awful, the emotional impact of getting spiked three days in a row was much less, and he felt good enough on Day 3 to run out to Wayne State to catch the end of the Mock Trial finals.  Oh, and to try to pull together a last-minute team to compete in Texas in three weeks.

Victor loves mock trial, which involves researching and presenting a fictional case, then playing it out in front of a judge.  He really misses it.  That class was the hardest to give up this term, and he considered staying enrolled in just that class while dropping the others, but ultimately decided to take the semester off entirely.  He was chosen to be on Wayne’s American Association of Justice’s National Mock Trial team last year, which competed in Philadelphia, and won “each of its trials at the competition, initially tying four other teams with the same record. The team made it through the first tie-breaking round before placing fifth in a close point comparison.” I got to play a witness (a widow who was suing her husband’s doctor for negligence) last year during the in-house competition, which was a blast.  Our friend Earl got to play a sleazy FBI agent.  It was awesome.   Victor chose to give up his spot on the national team this year because he didn’t feel it would be fair to his teammates if he was too sick to compete, not knowing what the chemo course would be like.  And then, another opportunity arose.  Before Victor got sick, he and another team member did some research on a new mock trial competition called the South Texas Shoot-Out, applied and were accepted.  In addition to the fun of competing, the winning team would be awarded $10,000 and a custom pair of cowboy boots for each team member.  Seriously.  To make a long story short, it turned out that competing in the South Texas event was still a possibility.  A team was mustered in a flurry of emails and meetings, and we went back to Wayne on Monday to run the idea past the Dean and figure out how to pay for it.   For a few days, Victor was caught up in the excitement of trying to make this happen.   He was planning on driving out to Wayne on Monday, but developed a delightful new side effect that made us both concerned about him driving alone.

On Chemo Day 2, Victor started feeling some numbness in his feet.  It’s called peripheral neuropathy, which means that the chemo is affecting the nerves in his extremities, making them tingle and feel numb.  As the days went by, the numbness crept up his legs and into his hands, making walking a bit more uncertain and typing a bit trickier.  He says it feels like “pins and needles” or when your foot “falls asleep”, but it just never goes away completely.  Exercise seems to make it worse, and massage or light scratching seems to help it, or at least it makes him feel better, which is somewhat odd since he usually doesn’t like massages.  It seems like his symptoms can be measured on two scales: physical and emotional.  When the symptoms are really bad, it’s due to both the physical sensation and the stressful/scary/angry feelings he’s having about them.  He says that rubbing his feet and hands may not change the physical sensations much, it comforts him and makes the stress/fear/anger meter go down.  I’m for whatever makes him feel better, so foot/hand/calf massages happen whenever he asks. After calling the doctor on Monday, we may decide to cut his dose of vincristine, one of the chemo drugs, in half for Rounds 5 and 6.  Neuropathy can completely resolve after chemo is over, but may take some time.  Or, it will never get better.  Reducing the dose may help, though.  Thankfully, he’s not in any pain, a very good thing, since pain usually means the neuropathy is damaging his nerves.

Keeping this in mind, we decided it would be best if I drove him to Detroit.  It was a beautiful sunny day, albeit cold, and we chose to park a few blocks away from the Law School so Victor could show me some of the beautiful Victorian houses nearby.  I really liked going into school with him that day, seeing everyone greet him and meeting people I’ve heard a lot about.  Despite getting turned down by the Dean due to funding and ultimately deciding not to compete in Texas, it was fun to get out of the house and work toward something, even if we didn’t win.  It was a day made up of lots of little sweet bits. It’s nice to realize that sweetness in the midst of illness and fatigue. Makes me feel lighter.

I’ve been battling a cold and nasty sore throat for about two weeks now, and it is finally starting to abate.  Even though Victor’s been feeling better lately, I’m still stuck in caretaker mode, and there’s nothing like being sick yourself to burn out a caregiver.  I’ve been sleeping as much as I can, but I have no appetite, keep forgetting to eat and then wonder why I am so hungry at 9pm.  Or, I’ll prepare a meal and then, not want to eat it after it’s prepared.  Weird.  On Saturday, I left the house for a few hours and tried to go to the gym, thinking it would be a good way to relieve some stress.  I actually sat in the parking lot with the car running for 20 minutes before giving up and leaving.  I didn’t need to burn any calories that day, despite the positive effects of exercise on my overall well-being.  I needed to go to Qdoba and eat beans, cheese, guacamole and chips.  They were f*cking delicious.  Then, I went to Meijer and bought a lot of easy to prep food, which has made it easier to eat 2-3 meals a day.  Not surprisingly, I started feeling less sick.  Yay immune system!

The weather has been so nice lately.  It’s lovely to work in my room with sunlight streaming through the windows or sit on the porch swing for a few minutes listening to the wind.  However, I can’t help but think what’s it’s like in Palm Springs right now, where my feminist psychology sisters are gathering again for The Association for Women in Psychology‘s annual conference.  I have been going to AWP for 12 years, and I’ve only missed the conference twice.  For me and many of the people who attend the conference, AWP is like going home.  It is both a fascinating academic conference and hilariously fun.  I was supposed to present in two sessions, one about the amazing parenting/substance abuse psycho-educational group we ran at work last year with new moms in recovery and one about what’s like being a feminist in academia.  I really wrestled with the decision, but decided it was best both financially and psychologically if I stayed home.  When I made the decision over a month ago, I was worried about being too far away to get home quick if something happened to Victor, and who would care for him while I was gone, not to mention the expense of the plane ticket and hotel, which we definitely could not afford.  I know it was the best choice, but I am missing Jess, Leah, Cat, Rebecca, Patty, Nina and everyone else like crazy right now.  My dear friend Jess wanted to make sure I knew “that we all will be holding you and Victor in all of our healing circles when we gather in Palm Springs.”  She asked for my permission “to bring a request for healing support for you and Victor to the conference at large, when the format is right.”  It means so much to me to be held in this way, and makes me feel like I am there in spirit.  I am already looking forward to next year.

On a lighter note, one of the articles I helped write at work was published this month in Current Psychiatry.  The title is Psychiatric Illness during Pregnancy, and you can read it here: http://www.currentpsychiatry.com/article_pages.asp?aid=10234.  The journal arrived in the mail on Saturday and I was so excited!  It was a fun and interesting article to write and I am really proud of it.

Yesterday, in an effort to reduce Victor’s restlessness and boredom, we went to the Bentley Historical Library to find old obituaries and learn more about the people’s lives.  He loves this stuff.  A few years ago, he researched a girl he found in a yearbook from the early 1900s, tracing her all the way to her hometown and even meeting her son, who welcoming Victor into his home and talked about his mother for an hour.  So, I edited a paper for work while he looked through old books.  Then, we browsed through a young girl’s scrapbook and photo albums from 1910-1914, which was incredible.  I’m looking forward to going back soon.

More healings than one

The past two weeks have been a roller coaster, full of ups and downs, but has ultimately settled into a new kind of peacefulness.  Chemo Round 3, and its aftermath, has been the best yet, at least physically.  Victor has had very few side effects, and by Day 9 or 10 post-chemo, he was feeling almost normal.  He has more energy, spends less time in his pajamas and more time in his jeans and has been eating a wider variety of food with no trouble.  He’s moving around the house more and spending less time in his room.  He’s even ventured outside the house several times, for both Law School and social functions, which feels like a miracle.  It makes me so happy to see him feeling good and more like himself.

Emotionally, we’ve been unusually, and sometimes wildly, hormonal.  Once again, my premenstrual period overlapped with Victor’s Prednisone doses.  Add exhaustion and the cumulative stress of many weeks, and the stage was set for a breakdown.  I came across a research study that found spouses had a similar physical and emotional quality of life as cancer patients themselves.  Many spouses are hyper vigilant, have trouble sleeping and have lower immunity to illness.  Many spouses are confused and hurt when the person they would give their life for is moody, angry and dismissive, even though they know it’s related to the emotional side effects of chemo drugs.

Thank God that Lily arrived the Wednesday after Round 3.  Throughout this whole process, I have been balancing caring for Victor while working full time and handling all household and financial matters, as well as anything else that came up.  I keep everyone updated on our progress.  I plan Victor’s menus based on what he can eat that week, research his illness and ways to manage side effects, try to keep his spirits up, come up with creative ways to soothe him in whatever way I can, etc.  I have been bright and cheerful and full of hope, always looking for the gift of love in confusing and painful situations, buoyed by the amazing community of support all around us. And, I’ve been doing a pretty great job.

It was only after we left the hospital and Lily went back to Texas that I realized how much I was leaning on her support specifically.  To be honest, she is the only person I fully trust to take care of Victor the way that I would, both physically and psychologically.  While we were in the hospital, I learned that I could recharge almost completely as long as I had 4-5 hours alone at home every other day to process the many intense emotions that were rocketing through me, cry, talk to friends/family, snuggle my cats and watch fluffy but engaging television like Glee.  After we left the hospital, it was a lot harder to find that space to recharge, although I tried whenever I could and had more than enough wonderful friends and relatives more than willing to help.  When Lily came home, I essentially collapsed, because I knew she could take over for me.  All the stress, terror, pain, confusion, sadness and anger that I had been keeping at bay out of what felt like necessity came crashing down, and so I tried to ride the wave the best I could.

I am not superhuman.  One can only go at this pace for so long before burning out, at least a little.  In the middle of this marathon, I just wanted to lie down in the middle of the road and take a break from being strong, hopeful and learning.  I spent a lot of time in my room, petting the cats while I cried.  I called Genevieve the day after Lily arrived and the first five minutes of our conversation were nearly unintelligible because I was sobbing so hard.  We talked for over two hours, she had me laughing within 15 minutes and feeling a lot better by the end of the call.  Good friends hold up a mirror to you, and remind you of who you really are, especially when you have wandered off your path.  I didn’t need pity or platitudes or “Poor Susie!”; I needed someone to sympathize, soothe, and then get me back on track, ask me what I was learning here, lovingly help me find the other issues behind all this pain and explore ways I can take better care of myself. I still had a few mornings where I woke up crying and nights that I cried myself to sleep, but it needed to come out.  Since Victor was handling his own exhaustion and Prednisone emotions, I couldn’t ask him to help me, so it was Lily who held me while I cried.  It was Lily who found me sobbing in the downstairs guest room early in the morning and soothed me the best she could.  I am so very proud of her.

As some of you know, Victor and I lost a baby at 12 weeks gestation in August.  My due date was this week.  In the midst of everything, I hadn’t remembered, and when I did, it hit me like a ton of bricks.  It would be wonderful to be welcoming our new baby this week instead of mourning his or her loss while Victor endures cancer treatment.  However, as much as we wanted our baby, it was clear that God/dess/The Universe made the right call on this one.  Now was not the right time for a baby.  I couldn’t have slept on the floor next to Victor’s hospital bed for two weeks or been with him for his chemo treatments while 7-8 months pregnant.  Preparing for labor and caring for a newborn in the midst of Victor’s cancer treatment would have been incredibly difficult in the best of circumstances, i.e. a healthy baby and no pregnancy complications.

I’ve worked with pregnant women for 8 years.  I knew that 30-40% of pregnancies end in miscarriage or stillbirth, and I was prepared for the possibility, but it was still very sad.  On the drive to the ER, I had many thoughts, ranging from “Please don’t let this happen to me!  I want this baby so much,” “Seriously, isn’t my life insane enough right now?  I can’t believe this is happening.” and “I don’t know what God’s plan is for me, but I have to trust that all will be well, even if I lose the baby”.  I had a talk with the baby: “I don’t want you to go, but it’s okay if you need to go.  We will all be okay.”  Strangely, there was a certain peace in knowing that there was very little I could do to alter the outcome of that day, and therefore acceptance of whatever happened felt like the right course of action.  Pregnancy loss happens to a lot of women, and this time, it happened to me.

When my grief was still fresh, I read this beautiful post about the experience of a babylost mom, imagining what it would have been like to have her future self guiding her though her loss. I lost my baby six months ago and there are very few things I would have done differently.  I feel like my future self, my best self, the self I am trying hard to be, was beside me throughout that whole day, on the way to the ER, in the ultrasound room, in the car on the way home, crying and laughing through my grief with Victor, who never left my side and was just incredible, despite his own grief.  She was there, reminding me of what is to come, how best to care for myself, loving me no matter what I am feeling or doing.  It was she who whispered in my ear, “Peace, acceptance. Try grieving differently.  Don’t let this tear you apart.  This loss will teach you so much, and open you up in ways you never expected that will be pivotal to your growth in the coming days, weeks, years.  You will be okay.  Let the baby go.”

I am so grateful for this.  It has made all the difference. I find myself approaching loss and strife very differently than in the past.  Acceptance, not fruitless, pointless grasping at what no longer is.  Peace, not everlasting grief and tears than make my eyes swollen for days at a time. Feeling what I need to feel when I need to feel it…and letting the emotion pass until the next time it wells up.  Being okay with my process.  Not berating myself for taking too long to recover, or feeling guilty about feeling guilty.  Finding ways to be joyful and have fun, not holding myself back by replaying the same old patterns over and over.  Over the past few weeks, I have strayed some from this pattern, and I’m finding my way back.

In the midst of this mini-breakdown, I went out to dinner, dancing and drinking with friends several times, enjoyed both getting out of the house to go to work and getting lost in writing/editing while home and had many soul-filling conversations with friends and relatives.  Lily planned and prepared an incredible meal for our friends Caroline and Jordan last Sunday night, and Victor and I had a thoroughly lovely evening catching up with them.  They brought an enormous basket of gifts for us from the entire staff of the Detroit Free Legal Aid Clinic, including two very generous gift cards and quite a collection of books and DVDs for Victor.  We were both pretty overwhelmed by their kindness, thoughtfulness and generosity.  Thank you so much to everyone who contributed and planned this amazing gift!  We also hosted several visitors on Monday from Black River, which is the high school Victor taught at from 2005-2007.

By Tuesday night, I was feeling much better and far more centered, and I can see that breaking down was a good thing overall, mostly because it allowed me to find much more peace and laughter in the aftermath.  Sometimes, you need to break a little to get back up again, and you find you are stronger for taking the fall, as well as more prepared against falling again.  Maybe it’s about having faith that you will not stay down there forever.

In other news, we all caught a cold this week.  It hit Lily hardest (102 temp).  I’m still congested and coughing a bit.  Ironically, Victor only had a stuffy nose for a few days before his symptoms were completely gone.  This week, cancer feels far away for some reason.  Maybe it’s that Victor feels good enough to prepare his own meals and take care of the house.  He and Lily even picked up packzkis for his parents on Fat Tuesday.  Since then, he has eaten nearly 25 packzkis.  Seriously.  Maybe it’s that we had more visitors than usual lately and many interesting conversations.  Maybe it’s that we both got out of the house a lot more and had some fun.  Aside from being sick, I feel more balanced and calm than I have in weeks.

Round 4 starts on Thursday.  Here’s hoping that it’s the best one yet.

The “fight” continues, with moments of joy

Victor felt almost normal this past week, which was awesome.  Still tired all the time, but the sore throat was much better and the mouth sores were non-existent.  To Victor, “fighting” cancer is mostly about walking into the Cancer Center and letting someone insert an IV so they can put toxins into his body every three weeks.  The rest of the time, he’s dealing with side effects and exhaustion, and eating a lot of high-protein, high-calorie meals, that normally, doctors would caution against.   So, after a week of feeling pretty good, it’s incredibly brave to show up for the next chemo appointment knowing that he’s going to feel like crap for two weeks.  And he’s halfway done after tomorrow, thank goodness.  Three more rounds of chemo and this sh*t is over.  And spring will be here.  Victor’s hoping for a few more snowstorms before April.

Yesterday was Day One of Chemo Round 3. We are learning more about what to expect and how to prepare.  He’s gaining weight and feeling less lightheaded, which means he’s getting around the house a bit more, and we’re not as worried about falls.  He’s even driven the truck a few times.  Last night, for example, we attended a fundraiser for the Free Legal Aid Clinic in Detroit and he drove all the way there after a day of doctor’s appointments and three hours of chemo.  We had a lovely evening, and Victor really enjoyed seeing many of his friends from law school.  It was fun for me to meet people he’s told me about, and to talk to those I’d met before.  Our very busy day started with a 10am blood draw, oncologist at 11:30, chemo from 1-4ish, home for quick showers and dressing up, and on the road to Detroit by 6pm.  We stayed until 9 or so, and were home by 10pm.  I crashed out early, but he was up for a while.  It was fantastic to see him feeling better, especially wearing a suit and fedora walking around the fundraiser talking to friends, even if it was just for a few days and we knew that the after-effects of Round 3 were coming soon.  It’s about enjoying moments in the sun, even if clouds are on the horizon.  “Gather ye rosebuds while ye may…” so to speak, although Herrick’s poem is more about how youth and beauty are fleeting, and that’s not what I mean.  I want to cherish and celebrate while we can, having faith that the wheel will turn, the seasons change, and in two weeks, my husband will feel good for a few days again.  He can eat a steak that actually tastes like a steak.  He can be his usual convivial self for a few hours at a social event and it doesn’t obliterate him.  Truly miraculous, and I am so grateful to be his witness.

In other news, it was really fun telling the oncologist about the Neulasta/Claritin connection and the clinical trial at the University of Vermont.  Direct quotes: “That is so cool!” and “It’s great working with you.”  They were pretty impressed.  I hope that other patients can benefit from this, too.  We’ve started telling every cancer patient we meet about it.

Today was Day 2 of Round 3.  We spent about three hours at the infusion center for a 60 minute infusion.  Friday afternoons are busy, I guess.  We’ve been watching classic rock documentaries on Netflix, thanks to the awesome headphone splitter Dave gave us a few weeks ago.  We’ve watched Queen’s A Night at the Opera and U2′s The Joshua Tree.  Both fantastic, although I liked the Queen one better.  I’m not as into music as most people, but have a soft spot for a few albums, including A Night at the Opera.  My friends Ryan and Joe introduced me to Queen when I was 17.  Lots of good memories happened with Queen playing in the background in the mid-90s.  At high school dances, Ryan and Joe always cleared the dance floor for Bohemian Rhapsody, dancing and singing the entire song at the top of their lungs, making often boring dances much more fun.  I can’t help but think of them whenever I hear it.  As much as I love Glee, I hate watching Vocal Adrenaline perform Bohemian Rhapsody.  Joe and Ryan were much better, and I got to see them perform several times.

Sadly, Victor’s laptop lost its ability to charge yesterday due to a disconnection or broken circuit in the charging port where the power cable connects.  He’s using my laptop for now, but we’re looking for advice on how to fix it.  He’s online most of the day and it’s his main source of entertainment, social connection, etc.  Any ideas would be greatly appreciated.

Tomorrow is Day 3 of Round 3, and the last infusion day for three weeks.  Lily is coming home for a week on Wednesday, and we are very much looking forward to seeing her.  It will be wonderful having our little family back together for a little while.  Can’t wait to hug our girl in just a few days!

Claritin and Neulasta

Apparently, there is a clinical trial (Evaluation of Loratadine for Prevention of Pegfilgrastim-Induced Pain) at the University of Vermont currently enrolling subjects to study whether Claritin significantly reduces bone pain in cancer patients taking Neulasta. The bone pain could be due to “histamine-related inflammation”, which is why the doctor suggested ibuprofen.  However, many cancer patients cannot take nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen because they act as blood thinners, which can be dangerous if platelets are low (blood may not clot if you start bleeding for some reason).  Many cancer patients say that the bone pain from the Neulasta is worse than the chemotherapy.  Neulasta reduces neutropenia-related infections significantly and most doctors prescribe it to keep patients on a regular chemo schedule, since an infection can, at best, force you to take more time between chemo cycles or, at worst, be life-threatening.

The Claritin worked immediately for Victor, but since his platelet count is normal, the doctor said it was okay to use NSAIDS as well if needed. After reading many patient accounts, I am really glad that the drug interaction is being studied, since Claritin seems much safer than NSAIDS for most cancer patients.

From the clinical trial description:

“Neulasta (Pegfilgrastim) is a myeloid growth factor that stimulates neutrophil precursors and can be used to decrease infection risk associated with neutropenia. However pegfilgrastim may induce back and leg pain in 20-50% of patients. No intervention has been consistently successful in treating or preventing this pain. The exact mechanism of pegfilgrastim-induced pain is unknown but may be related to histamine-mediated inflammation. Several case reports and anecdotal reports have suggested efficacy of antihistamines for this indication.”

“War over soon,” says General Patton, on Victor’s PET scan results

There have been lots of visitors this past week, and no shortage of good conversation, hugs and help with housecleaning.  Aunt Eileen actually stopped by yesterday to clean the litter box and drop off the cat litter containers that she refilled for us at Petco without even asking first.  Our friends Jeff, Nicole, Erin and Earl spent some time with Victor on Wednesday night while I went out to dinner and drinks with Sarah at Red Hawk in Ann Arbor, which was so nice.

Last Saturday night, Victor started having terrible side effects from the Neulasta, which helps protect against neutropenia-related infections and stays in the system for about 10 days.  We’d heard about the painful side effects from my sister and brother-in-law.  For some people, the Neulasta side effects are worse than the chemo.  Apparently, the “mild bone pain” caused by the Neulasta actually feels like fireworks going off in your bones.  Since it works by increasing white blood cells in your bone marrow, this makes senses, but it didn’t hurt nearly as much last time and we weren’t sure what to do about it.  Victor had a blood draw that morning which he literally described as “fluffy” and we asked the phlebotomist if we could bring her with us to every future blood draw.  His blood counts were higher than last time, which indicated that the Neulasta was working better, but it was odd that the side effects didn’t start until almost a week after he injected the drug.  Anyway, I was in my room editing a paper for work while Victor was hanging out with his friend Emily, and every ten minutes or so, I hear him say, “F*ck, that hurts!” or “G*ddamnit!”  By this point, he had taken 30 mg of Oxcodone with no relief.  As you can imagine, cries of pain from my beloved do not sit well with me, and I immediately switched to from paper editing to research about Neulasta.  After 10 minutes or so of searching, I stumbled across a few blogs that said Claritin helps reduce bone pain related to Neulasta.  Several cancer patients who had been prescribed Allegra before the cancer diagnosis were told to continue taking it, partly because it helps with bone pain.  We happened to have one Claritin tablet left in the house, so he took it.  Twenty minutes later, the pain was reduced by 80%.  Amazing.  Emily stayed with Victor while I ran to CVS to buy more Claritin, just in case he needed more the next day.  It lasts for 24 hours, and by Sunday at the same time, the bone pain was gone.  Never before have a Yahoo Answers-like post or patient message board done anything but drive me crazy with grammar mistakes and ridiculous answers.  Most of the time, reading comments on an online article or random blog post makes me feel like my IQ has been reduced.  This time, it actually offered helpful information that was immediately useful.  That gives me hope.

We spent Thursday at the hospital.  PET scan at 10:30 and oncology at 1pm to check on a weird rash that Victor developed a few days after chemo. We told the doctor about the Claritin, and he had never heard using it for this purpose before, but was glad it helped.  He asked me to send him any journal articles I found so he could share with colleagues.  He was not concerned about the rash and was pleased that the Prilosec was working so well for Victor’s mouth sores and throat pain.  He promised to call us with the PET scan results as soon as they were ready, which was around 4pm.  The chemo is working very well!!!  The pain Victor was having last week was likely due to inflammation, not progression.  He still has to complete 4 more cycles of chemo because, as the doctor said, we don’t want to stop a winning horse.  The details are below.  When you look at the pictures, imagine Victor standing in front of you.  Before a PET scan, a nurse injects a radiotracer into your veins.  Areas of high metabolic activity light up on the scan, so the brain, heart and other organs always light up.  The first scan shows a lot of activity on his right side, in the throat, chest, lung and near the kidney.  The second scan only shows mild activity in the neck, so little that they had to do a close-up to see the tumor in his neck.  This is very good news, and means we’re definitely on the right track.

Scan #1--baseline
STUDY: FDG PET TUMOR CLINICAL 12/14/2011
INDICATION FOR STUDY: Hilar mass
PROCEDURE:
Sixty minutes following intravenous administration of approximately 300
MBq (8 mCi) of 2-deoxy-2-(F-18) fluoro-D-glucose (FDG), sequential non
contrast enhanced CT and PET imaging was performed from the vertex of
the skull to the mid thigh.  Helical CT was performed with 5 mm
collimation followed immediately by positron emission tomography at
multiple overlapping bed positions.  Registered non contrast CT and
attenuation corrected FDG PET, and attenuation corrected FDG PET
images, were reviewed for interpretation.  Please note that the whole
body CT portion of the present study did not employ diagnostic
collimation, breathhold technique, or intravenous contrast.  The CT is
performed only for attenuation correction and for localization of the
findings in the PET images.
Blood glucose level 118

FINDINGS:
Head and Neck: Intense FDG uptake* involving right 
supraclavicular lymph nodes.
Thorax: Intense FDG uptake* involving large right 
infrahilar mass, bilateral hilar, subcarinal, precarinal, pretracheal, 
and right paratracheal lymph nodes, suspicious for neoplasm.
Abdomen and Pelvis:  Intense FDG uptake* in a right 
suprarenal mass which may be an adrenal mass, suspicious for neoplasm

IMPRESSION(S):
1.   Intense FDG uptake* involving right infrahilar mass, 
mediastinal lymph nodes, right supraclavicular lymph nodes, and right 
suprarenal mass, suspicious for metastatic disease.

*FDG is glucose, widely used to study tumor 
metabolism by means of positron emission tomography(PET).
 
***************************************************** 
Scan #2--after two rounds of chemo
STUDY: FDG PET TUMOR CLINICAL 2/2/2012
INDICATION FOR STUDY: 39-year-old with lymphoma, status post 2 cycles
of chemotherapy. Increased odynophagia and pain and back/subclavicular
area and under right rib.
PRIOR FDG PET STUDIES: 12/14/2012
CORRELATIVE ANATOMIC IMAGING: CT from 1/1/2012

PROCEDURE:
Sixty minutes following intravenous administration of approximately 300
MBq (8 mCi) of 2-deoxy-2-(F-18) fluoro-D-glucose (FDG), sequential non
contrast enhanced CT and PET imaging was performed from the vertex of
the skull to the mid thigh. Helical CT was performed with 5 mm
collimation followed immediately by positron emission tomography at
multiple overlapping bed positions. Registered non contrast CT and
attenuation corrected FDG PET, and attenuation corrected FDG PET
images, were reviewed for interpretation. Please note that the whole
body CT portion of the present study did not employ diagnostic
collimation, breathhold technique, or intravenous contrast. The CT is
performed only for attenuation correction and for localization of the
findings in the PET images.
Blood glucose level 108

FINDINGS:
Background mediastinal blood pool SUV : 0.4
Head and Neck: Of note, the head and neck portion of this exam is
misregistered secondary to patient motion, which limits evaluation.
There has been a marked partial response to therapy, with 
a significant decrease in the size of previously described 
right supraclavicular hypermetabolic lymph node enlargement. A 
small amount of mildly hypermetabolic soft tissue remains 
in the right supraclavicular region which demonstrates FDG uptake 
slightly above background (maximal SUV values ranging from 0.5-0.9 ).
Thorax: There has been interval resolution of the 
hypermetabolic activity associated with the previously described 
mediastinal lymph nodes, which have significantly decreased 
in size. The FDG uptake within the chest is now physiologic.
Abdomen and Pelvis: The previously described hypermetabolic right upper
quadrant/right suprarenal mass has significantly decreased 
in size, now with FDG uptake in the area at/below background levels. There 
are no new suspicious areas of FDG uptake within the 
abdomen and pelvis.

IMPRESSION(S):
1. There has been a marked partial response to therapy as detailed
above. There remains only mild hypermetabolic activity present within
the right supraclavicular region as detailed above.

Work, Tuesday visitors and hormones

The past week has been a blur.  Things are finally starting to settle into a predictable schedule at home and at work, which is nice.  I typically go into the office on Tuesdays from 9-5pm, and work from home the rest of the time.  Occasionally, I will go in for a meeting.  When I am at work, I enjoy seeing my coworkers and learning about new projects, like the brain imaging study that will be scanning new mothers at 2-4 weeks postpartum to catch what areas of their brains light up when they see their baby’s photo and hear their cries.  These moms are all struggling with opiate addiction, which brings special challenges to recruiting and keeping them interested in the study.  I am looking forward to working with these ladies again.  When I am at home, I am editing/preparing manuscripts for publication from one of our many projects, which has been really fun.  There are so many papers to edit/write!  It’s exciting to be part of this final stage of research after helping collect data from participants for much of my time as a study coordinator.

Every Tuesday, my Aunt Eileen comes to stay with Victor from 9-1pm.  I get to see her in the morning before I leave, and when I come home, I get to see Victor’s parents, since they stay with him from 1-5pm.  Around 5:30, our friend Dave stops by, usually with dinner.  It has been wonderful to see everyone regularly, and we look forward to their visits.  Our other friend Dave came by to see Victor on Monday night, and was kind enough to spend several hours with him so I could finish editing a paper and run a few errands.  Last week, I arrived home after work to find my microwave oven cleaner than it has been in months.  Michael, Victor’s dad, said that Aunt Eileen had cleaned the whole kitchen and only left him the microwave.  The previous week, Margaret, Victor’s mom, scrubbed our toaster oven and stove top to sparkling.  On Tuesday, my friend Amanda brought wild mushroom pizza from Whole Foods for my dinner and took me to Meijer to buy groceries for us and two new hats for Victor. After we arrived home around 11pm, she said I looked exhausted and sent me upstairs while she made ravioli and cream sauce for Victor’s dinner and washed our dishes.  Next Tuesday, we may do yoga in the living room.  Last Saturday night, I emailed several of Victor’s close friends to see if anyone could stop by for a few hours on Sunday while I ran some errands.  Within three hours, Jeff and Dave had emailed back to say they could come over.  By the next morning, I had four more volunteers.  Love and support abound.  If I need help, all I have to do is ask.  Just having this knowledge is such a comfort to us both.

In other news, we shaved Victor’s head almost a week ago, using his 19th century porcelain pitcher/basin and shaving brush, while watching Warren Zevon’s last performance on David Letterman, as well as Bill Hicks’ mom’s appearance. I’d never shaved anyone’s head before, and it was intense, but sweet to do it together, in our own way.  His hair had been falling out in his hands, which had become increasingly annoying to him, and it felt good to take control in some small way.

Not Victor’s, but similar

It’s definitely different, but I like it!

Chemo Round Two was relatively uneventful, with three days of infusion and five days of Prednisone, which he finished on Monday.  Steroids can have some interesting emotional side effects, ranging from unexplained anger to random weepiness, and there have been more during this round than Round One, probably because he was on a lot of oxycodone back then.  Mouth sores are much better, but his throat has been very sore.  On Monday night, he started feeling some pain near his tumors, very similar to the symptoms that brought us to the doctor in the first place.  Hoping to avoid a trip to the ER, I called Dr Maillard’s office on Tuesday morning.  They were a bit concerned, but said it could wait until Thursday.  After a very strange night’s sleep, we woke up way too early to attend the first of two scheduled appointments at the hospital: 8:45am at thoracic surgery and 12:30pm at oncology.  I should probably note that we were not at all excited about waking up early to spend the day at the hospital.  Between my PMS and Victor feeling somewhat premenstrual himself, we are some cranky people, especially before 8am.  There has been much ranting and waving of arms, cursing the dishes for not having the decency to wash themselves and crying because the sun is going down too damn early.  Hilarious, in retrospect.  It’s been nice that we have not been upset with each other, just everything else, and we can laugh at ourselves.  We laugh to keep from crying, and sometimes we do both.

Anyway, I drop Victor off at the hospital before parking the car because we are running late (who gets up this early!?).  On my way in, I see him and his new University of Michigan fur-lined muffler (pictures forthcoming) walking into Radiology.  Apparently, he was supposed to get a chest x-ray.  Of course, no one told us that.  Why would they do that?  They won’t let me go with him, so I wait in the lobby.  After he’s done, we head to the Thoracic Surgery waiting room, where Victor finds an issue of Guideposts and starts reading out loud.  With just the tone of his voice, he manages to make an “inspirational” story about an ex-Marine who gets cancer both inappropriate and hilarious.  I think they called us back just to get him to stop reading.  We see the doctor, who looks at the incision and says it’s healing well and we will likely never have to see him again.  We cheer.  By this point, Victor is really tired and unsteady on his feet, and we have to get to the Cancer Center, which is quite a walk.  I find a wheelchair, and we head to the cafeteria for lunch, where we run into our friend Vanessa, who is a clerk at the Cancer Center.  We have about an hour to kill before the oncology appointment, and having lunch with Vanessa was perfect.  We check in a little early, and see the very kind resident we saw last week in the waiting room.  He was working with another doctor that day, but was able to see Victor anyway, which was lovely.  The doctors say that the pain could either be inflammation related to the chemo or a progression of the lymphoma.  Victor has a PET scan scheduled for next Thursday to find out what’s going on.  He was also given a prescription for Nystatin to treat a likely fungal infection in his throat.  We arrive home around 4pm.  It was a long day, and our 3 hour nap was almost involuntary.

After looking at his chest x-rays, our completely uneducated opinion is that lymphoma progression is unlikely, particularly since his pain is less today.  What do you think?

From 12.29.11, two days before chemo started.  Note the bulges in his neck and near his esophagus.

Thursday’s x-ray.  Way better.  His esophagus is much straighter and his lungs are clearer.

Poison, vanity, and phobias…

OK, I am going to lay out the good and bad.  Expect the whining toward the end, but, as there is bright in the dark and sarcasm and irony in the light, it all works out.

Not doing too bad, all things considered. Tired, easily winded, good prognosis, feeling generally decent most days, just had my last whack of chemo for this cycle yesterday afternoon. I slept through a lot of it. The spike wasn’t too bad and I still have an appetite.  Eating well, gaining weight, and experimenting with staving off side effects with some success. My throat isn’t anywhere near as bad as it was the first trip. I am sticking with cold smoothies and very soft, bland foods like ravioli in white sauce. Generally, I am just very tired.  So, refreshingly filled up with poisons that literally have suffixes like “-toxin” and “-cide” I am off for another exciting three weeks.  Now on just the oral Prednisone, a steroid with interesting emotional side-effects like weepiness and ‘roid rage.  I am listening to ballads of the 1980s and songs played by musical heroes whose deaths I remember.

I shaved the head because it was getting ridiculous.  So much had fallen out there was nothing for it but to cry fuck it and move on. I have already gotten a few questions on the Telly Sevalas/Captain Picard transformation. Mirrors now have a different effect, it’s a little hard to recognize me as me. I mean it’s smooth. The beard is still a little on, but only for a day or so until I can take some strange pictures. I suspect I can pull off John Locke (Terry O’Quinn) from “Lost” if I wear the right clothes and have a enormous horking knife. I have to admit I’ve been a bit weepy the last 24 hours, the drugs, the shaved head, the blow to the vanity. I am sure I will adjust, but this is my first hairstyle change in a long time, since 2000. Before that it was about 1988, when I grew it long.  But my comb is now suspended for the duration.  Quite a blow to the vanity.  And I am vain, boys and girls, a somewhat well-kept fact.  I like me and I sure as hell like looking like me.  I make it work for me.  I seem to have an attractive skull, but that’s a minor comfort.  Susie says she is liking, but getting used to it.  May take me a bit longer.

Let’s talk spikes.  I SUCK at needles.  It’s one thing to be in pain and have to deal with it.  You get hurt; you contend.  It’s the “Hey, sit really still and lemme put some sharp metal in your veins.”  There’s just an evolutionary click there: if you allow that, you don’t get to pass on your DNA, it’s pretty much that simple.  And the longer it goes on, the worse I get at it.  First day, I hate it.  Second day, I loathe and despise it.  The third day, I am musing, “Is this really worth it?”  I’m serious.  I love telling the story of the day I was 12 and a doctor wanted to spike me to take a biopsy.  I got to the scalpel faster than he did and explained that there was gonna be no needles or cutting that day.  I won that argument.  Nurses love that story and the way it makes them laugh very nervously.  Still warms my heart too.  This isn’t about rationality, it’s about pure, good old-fashioned, primal “Aw, hell no!.”

I am trying to behave, but the parts that mess with me may not be the parts that mess with others.  Each faces his craps table with one set of dice, their own.  Me, too.   I am doing good, really, I am.  But it’s the stuff in the baggage car that trips you, not the hurdles you have assigned to your route.  At least that’s what I am finding.