Happy Birthday to me

I had a birthday earlier this month. Not a big affair for me ever, and even less of an event since Kevin died.  A nice dinner, lots of well wishes and an early night.  The day passed and I went in to work as usual the next day.

Always my day begins with a trip to the cafeteria for my cup of tea.  That day, as I stood at the cash to pay for my tea, the cashier said to me, “You know there’s something written on your shoulder.  You’ve got chalk on your shoulder.”   I had on a royal blue sweater and I glanced at my shoulder but I couldn’t  quite read the word there.  “It says ‘love’.  Someone wrote love on your shirt.”  She’s a sweet girl that I see everyday, so with familiarity she pulled me over and tried to brush off my shirt.  Finally satisfied, she let me go, laughing that someone would do such a thing.

i walked back to my desk where I was stopped along the way by yet another co-worker who said, “You know you have the word love written on your shoulder, don’t you.”  She, too, tried to brush it off but I stopped her, saying “Don’t bother, Liz already tried to get it off, that’s as good as it gets.”  Frankly, I didn’t want it brushed off at that point, I felt like it was a message for me.  You see I had originally planned on wearing that top on my birthday but opted at the last minute for a heavier sweater since the day was so darn cold.

Who has chalk around the house?  That’s what it was written in, nice white teacher-type chalk.  Kevin was a teacher.  So in my crazy world, to me, that message in chalk was a gift from my husband, from Kevin, for me on my birthday.  Love that I can wear everywhere and anywhere.  It was a visible mark, a written word for the world to see, and a reminder to me that I carry his love with me for ever and always; love that is there whether I see it or not.

Crazy story, puzzling coincidence, and absolutely true. The best birthday gift ever.

Breaking bread not breaking down

Dinner out with the grief group ladies again last night.  Nice meal and no shortage of conversation.  It ended with us all reflecting on where we were in life through no choice we had individually made.  The reality is that we have started to come out the other side.  Friends and family around each of us has too.  But, and that word was accompanied by a heavy sigh, those around us, particularly those in our circle of friends, have yet to travel this path.

i was pretty much the first in my social group to have a spouse die.  Oh sure, we all have lost parents by now, but spouses – no.  Likewise for my lady friends.  We talked about that, and how arbitrary life is.  Then one in the group made the observation that once you can wrap your mind around the fact that you are really and truly alone, then there are occasions when you are okay with not having to consult, worry or limit your actions or activities because of other commitments.  But more bluntly – if I wanted to go to bingo every night there is no one to stop me.  This can be a good thing and a bad thing, no?  (And, for the record, I don’t go to bingo every night!)

Let’s face it, it is hard to find an upside when you have lost the love of your life, but you have to look for something.  For us, the four of us that met for dinner, we all appreciate the fact that we had good relationships that endured.  We had spouses that left us in a position to have a decent quality of life.  We have family and friends that stepped up to the plate and helped fill the void. Things that are important and that many others will never have.

We booked our next meal out for mid-September and I think we even identified a theme:  what difficulties we faced and how we coped, and can that information benefit others.  We could talk about that, or we may just talk about the Olympics.  It’s something to look forward to.

Radiation Pain

This radiation treatment has resulted in side effects much similar to the last one.  The pain is quite significant, to the point where I wonder if my husband wouldn’t be better off in the hospital.  The treatment was on Friday so we are now four days out and have to hope that the “spike” associated with the treatment is now on the downswing.  This process is incredibly hard to watch.  There were three spots on his spine radiated that included vertebra in his cervical, thoracic and lumbar spine.  The lumbar spine has some minor swelling especially after he has been seated for a period of time.  Lying down aggravates his cervical spine and breathing hurts his thoracic spine, consequently he is breathing quite shallow.  Its frightening to observe and obviously horrible to experience.

As a result of the radiation, chemotherapy has been delayed for one week until he has rebounded somewhat and the pain is more controlled.  This next treatment will be his third with this particular chemotherapy drug, Docetaxel.  Our Oncologist has asked for a CT Scan for mid-March to determine if the treatment is having any success.  The treatments are certainly starting to wear him down and we’ve talked generally about his options if the chemo isn’t working it’s magic.  These are hard conversations, but not as hard as watching him suffer, especially if it is needlessly.  We will wait until the scan.

We also continue to wait for our third grandchild.  Our daughter is having her first baby and the due date has now passed.  We know she is having a little boy who, no matter what, will be saddled with the nickname Chip.  For now, again, we wait.

As for my sister-in-law, she’s had a very tough week between her water pipes bursting,her furnace being shut down as unsafe (in minus 30 degrees Celsius weather) and the uncertainly surrounding her chemotherapy treatment.  Today was her visit with her Oncologist to find out what and how they wanted to proceed with her treatment.  Things did go her way which is a good thing.  The visit to Oncology netted a positive outcome – no more chemo but they will monitor her closely through tests and scans conducted every three months for perpetuity.   She also was able to line up technicians to replace her furnace in the morning and finally have some warmth back in her house.

Tomorrow is another day and who knows what it will bring.  For me, I hope it brings some relief to my husband, some warmth for my sister-in-law and a new grandchild into our little family.

 

The Ileostomy

My sister-in-law’s experience with cancer continues to be quite challenging.  After the initial nightmare of surgery and associated complications, she was released home with an high output ileostomy.  This in itself is quite challenging for the obvious reasons.  She never ever anticipated having an ileostomy, the lifestyle change that it has required is quite significant.  The care and maintenance required are very demanding and she has had more than her fair share of challenges in managing this device.  The ileostomy is reversible but only after she finalizes her chemotherapy treatment.

The chemotherapy treatment has been hard on her over and above the anticipated side effects. With her first treatment my sister-in-law had quite a reaction to the chemo cocktail even before leaving the hospital.  Her hands as well as her neck had turned a bright red – luckily a nurse spotted the reaction and she was whisked back into the Cancer Treatment area and provided with intravenous medication to counteract the allergic reaction she was having. This was her first experience with chemotherapy and it wasn’t even a full dosage, it was a reduced dosage of  75% of the normal amount administered, so likely a good thing she didn’t get the full dose.

She has her chemo treatment every other week.  Shortly after receiving her first round my sister-in-law was experiencing another issue related to her stoma – the opening for her ileostomy.  It was quite swollen and painful, and the fluids passing had diminished significantly consequently she was worried about a blockage.  Prior to getting the next infusion of chemo, she wanted to make sure that there would be no more adverse effects on her stoma as well as ensure that all her medical team was aware of what she was experiencing or if there was cause for concern.  Her GP and surgeon advised her that she should be able to have the chemo on schedule and that she should inform the staff at the oncology suite prior to commencing her chemotherapy.

Once at the hospital for her second round of chemo she duly informed the staff about the issues with her stoma.  No one was overly familiar with what she was experiencing; after consultations with three oncologists on roster that day, a decision was made to reduce the chemo dose to 50% as well as provide the preventive meds prior to administering the chemo.  After the treatment my sister-in-law went home, again with the baby bottle attached to administer more chemo over the course of 48 hours.  Thursday past was when she went to the local hospital to have the baby bottle device removed.  By this time her stoma was quite painful with sores as well as extremely swollen.  When the baby bottle came off there was a fair bit of blood in the ileostomy which was quite worrisome.  A quick visit to the surgeon eased her mind somewhat but not entirely.  He was satisfied that her ileostomy was not blocked since some fluid was still coming out, but thought that she may have developed a condition known as mucositis in the gastro-intestinal tract.  There was also a suggestion that they may have to drop her chemo down to 25% dose since she is so sensitive to the meds. This is where she is at now, trying to get a definitive about the mucositis and a prescribed treatment.  Today seems to be a better day, and in speaking to her she sounds a bit more optimistic and the swelling seems to be lessening.  It’s hard to keep spirits up since every day there seems to be a new challenge but she certainly is trying to look forward and ahead and just get through this.

 

Cervicogenic Headaches

With cancer and cancer treatments there are more than enough challenges that can crop up in the patient’s life.  For my husband, he has definitely had his fair share.  When a new problem presents itself inevitably the mind goes right to the darkest place – fear that the cancer has spread.  This is not always the case.  The problem may be related to the cancer, but not necessarily mean that the cancer has spread.  Take for example the headache.  In my husband’s case his headaches have consistently increased over the last couple of weeks.  At the same time his mobility has been challenged due to his physical limitations and consequently his body has started to show the outcome of persistent pain.  His posture has changed dramatically.  His shoulders have rounded, his spine curved, his head droops forward.  He’s lost a good two, maybe three inches off of his height.  Throughout the last couple of months all of the family have commented on it, or more appropriately stated, nagged him about it.

So is there a correlation between the posture issue and the headaches?  I really do believe there is.  His headaches are textbook cervicogenic.  He has a rotator cuff injury which has been exacerbated by the use of a trapeze device over the bed to facilitate movement when lying down (mobility issues).  He has deteriorated discs in his thoracic spine that have contributed to his increased slouching (posture issues).  Add the two separate ailments together and it is bound to have a cumulative effect on his overall health – enter the headache.  So we have made a couple of positive responses to this.  First, in addition to a CT scan on Tuesday of this week to get an update on how his cancer is behaving, he is also going for a shoulder x-ray to see the exact issue with his shoulder – could be a corticosteroid injection will fix him up.  Second, he has started a series of small physio based exercises to release some of the tension in his neck.  He is far more mindful of his posture and this is the most important part of the response, to ensure he is aware of his posture so he can make those minor adjustments throughout the day.

The main thing we have to do is continue to stay focussed and positive.  Not every ache and pain means chemotherapy or radiation is required.  I write this in advance of the appointment on Tuesday, not knowing the outcome.  We won’t know the outcome until the 13th of January.  However, regardless of what the CT scan finds a little gentle exercise is not going to do any harm, and his increased awareness can do him a whole lot of good.