Hmmmm

It’s taken a few days for me to process the results of my husband’s bone scan.  It was, and still is, a devastating result.

At the meeting with the Oncologist and prior to having his most recent chemotherapy session, my husband complained about the persistent pain in his left shoulder.  In early January he had been for an x-ray and CT scan to access his progress.  The Oncologist had reviewed the two scans and in our meeting stated that it appeared that the issue in the shoulder was arthritis.  As the conversation continued the Oncologist stated that although nothing had “popped” on the CT scan he could, with the simple click of a button, order a Bone Scan – if that was what my husband wanted.  This is how the Bone Scan came to be.

We had met with the Oncologist on a Tuesday, and a Bone Scan was set for the following Tuesday.  Two days after our Tuesday meeting with the Oncologist my husband had his chemotherapy treatment using a new chemo drug, Docetaxel.  This chemo drug can act as a bone marrow suppressant (http://www.cancernetwork.com/oncology-journal/radium-223-vs-ebrt-multiple-painful-bone-metastases-data-favor-radium-223). “Because docetaxel is a cell cycle specific agent, it is cytotoxic to all dividing cells in the body. This includes tumour cells as well as hair follicles, bone marrow and other germ cells.”  (ref: Wikipedia)  Four days later he went for his Bone Scan freshly juiced with Docetaxel.  I can’t help but wonder if this influenced the results.

At our meeting with the Radiologist she showed us pictures comparing my husband’s first Bone Scan (in July) with his second Bone Scan (in January).  Prior to viewing the pics I asked the Radiologist if I would be shocked – her simple reply was “yes”.  I was, we were, the image highlights (hotspots or growth) were so widespread that I couldn’t fathom how my husband could be sitting upright in a chair and not writhing in agony.  Anyway, we were at a loss for words and just got through the rest of the appointment.  In retrospect I wonder if we should have discussed the timing and type of the chemotherapy my husband had just received.  I don’t know that the radiologist was aware of this aspect of my husband’s treatment, I would hope so, but I have learned never to assume anything.

As a result of our meeting with the Radiologist my husband was advised to have some radiation to address the pain in his shoulder/neck area and a subsequent appointment was made for today.  However, we cancelled the appointment based on our concern about the veracity of the Bone Scan as well the risks identified with the selected radiation spots.  We also have learned that Paget’s Disease runs in the family. We plan on waiting until Monday when we can have a meeting with our GP to discuss all of our concerns before we decide on any more radiation.  We also need to ensure all information is conveyed to our Oncology team (including the Radiologist) so they are making the best and most informed decisions for my husband with respect to his treatment.

That’s where we are at.  It’s confusing and frustrating because we just don’t know what to do next.  Now my sister-in-law is another story, again complications and frustrations all around.  She deserves a full blog on her issues – which I will work on getting out today.

Getting the News

It’s been months since we first received the news that my husband had cancer.  Up until now it was just too hard to relive those initial days but for the benefit of those who don’t know how it happened – here is our story.

It was Wednesday, June 25, 2014 when I took my husband to Emergency.  He’d been complaining of a sore back since the May long weekend.  He’d dug up my garden that weekend, using the good old fashioned shovel instead of borrowing his buddy’s rototiller.  He thought at the time that he may have pulled a muscle and by the beginning of June he had visited the family doctor who prescribed rest as the answer.  Through this time he continued to ride his bicycle to work, play tennis with his buddies and do all the normal things one does. However, on the evening of the 25th of June he was in significant pain, not only with his back, but he had started to experience a pain in his chest.  Although he didn’t want to go to Emergency, he knew something was wrong and allowed me to take him over.

Due to the fact that he was experiencing some pain in his chest we were processed through quite quickly.  They did some blood work and hooked him up to an ECG to monitor him.  After a couple of hours the ECG was removed and his numbers appeared to be okay.  The Emergency Room doctor was not satisfied with any of the results that had come back, he felt that there was definitely something at play here and asked my husband to stay overnight so he could arrange for a CT scan for first thing in the morning.  That settled, I left for the evening advising my husband that I would go to work in the morning and then swing by to pick him up around noon – if he needed me sooner to call me at work.

When I arrived at Emergency at noon on Thursday the Triage Nurse took me right back to my husband and asked me to wait for the doctor.  A little odd, but okay.  I asked my husband if he knew what was up and he stated he had no idea.  The doctor came in, this was a different doctor from the one who had admitted and dealt with my husband the night before.  He started off by telling us he had some difficult news for us.  He had the results of the CT scan and it showed that my husband’s pain in his back was attributed to his T10 and T11 which were deteriorating as a result of bone cancer.  There was also a lesion at T6, as well as some deterioration to his sternum.  After he told us this, the doctor paused.  In that brief lapse of time I remember my husband just looking at me.  We were shocked beyond words.  Finally he said to the doctor, “Well I didn’t see that coming.” A brief and flat statement.  However, that was not the end of the doctor patient conversation.

The doctor stated that unfortunately the CT scan also showed widespread lung cancer, both lungs.  The main tumour appeared to be located adjacent to my husband’s heart.  He stated that his observations were very preliminary that we needed to speak to our family doctor as well as an Oncologist.  The doctor stated that it appeared to be at least Stage 3 cancer.  Although the ER physician chatted through a few other things at this time we were no longer listening.  We were together but apart, both of us lost in our own thoughts.  When we left the hospital we went home and sat outside on the deck.  There were a few people to call, but first we had to do some strategizing.  We needed to figure out how much we could share with our family and friendsWe needed to see our family doctor to talk this thing throughWe needed to find out how cancer could get to stage 3 (although it turned out to be stage 4) without any real indicators.  We needed to find out what happens next.

This was our world from June 25 – 27, 2014.  Everything turned upside down and we weren’t ready for it.

Picc Line Out

Today was a day where I wept, I literally cried most of the day.  The uncertainty of the future ahead of us is frightening.  I worry that we, and in particular that I, won’t be up to it.  Two days ago I had the confidence to work with my husband in facing his battle against cancer, but that same day we were required to make a decision about his future treatment.  The two options that we discussed with the Oncologist yielded almost the same outcomes when trialled. The statistics offered weren’t compelling enough to justify staying on chemo treatments.  It seemed obvious that with care and diligence we could figure out a way to stave off or at least try to stay ahead of the disease.  When we walked out of the hospital that day, after my husband had his picc line removed – instead of feeling elated we left feeling totally unsettled.  We wondered whether we had done the right thing?  We had the choice to continue on a treatment plan, should we have?

Today we talked about what we are both feeling.  It feels like our support has been pulled out from under us, that we have lost the big machine (the hospital and its supports) and that we are now entirely on our own.  We will make all the decisions, there is no medical team meeting to discuss how to proceed.  It’s just us.  Who are we?  What do we know?  The anxiety is frightening in its intensity.  It’s all well and good to say we’ve got a plan – but is it the right plan?  There is a life in the balance here.  As the primary caregiver am I up to the job?  The sense of responsibility is almost too immense.  What if I miss something, some symptom or indicators?  Obviously I fell short in this area before, I mean he was Stage 4 before he was even diagnosed. I know that it’s not my fault but should I have seen something?  Friends and family will react to my questions, but they’re honest ones and it is how I feel.  I will do the best that I possibly can, but what if it is not enough?  This is not a “poor me” blog, it is a reflection of my state of mind.  I feel a tremendous responsibility. I take nothing for granted anymore, I can’t afford to.  But I am afraid.  I know that fear is destructive but to deny that fear is foolish.

My saving grace today was a site I found on line that made me remarkably normal, although it’s small comfort to know that experiencing this range of emotions makes me “normal” when I feel like I am broken.  It is, however, a great resource which I will continue to reference when in doubt.  There are answers and there are suggestions, but there are no one size fits all solutions.  http://www.cancer.gov/cancertopics/coping/life-after-treatment

November

Beautiful Ontario

Beautiful Ontario

The months have flown by since my husband’s diagnosis.  Everything has changed and yet nothing has changed.  Unfortunately with cancer you tend to live in the world of unknowns which can spin your mind whether you want it to or not.

When he was first diagnosed with cancer, my husband was given some options.  He was offered radiation to stop the spread of the cancer in his bones – which he agreed to.  At our intake meeting we were told that with radiation there is always the option to do more if it is required.  In our case five sessions were fine.  My husband was offered the option to try chemotherapy.  The Oncologist discussed how the treatments would work and, based on my husband’s condition at intake, what it should provide.  If effective, the chemo should provide enhanced quality of life for a slightly (a matter of months) prolonged period.  To date he has had three rounds of chemotherapy and received some excellent results.  Last night I asked my husband about his choices and why and what his present state of mind was.  I know he has been preoccupied because of his sister, but I also wanted to know how he was feeling about himself.

First and foremost he does not regret any of the choices he has made to date.  He finds the chemo tough, no doubt about it, but it’s those first two or three days after that are the toughest.  There are side effects, like the change of taste, that bother him but the further away from the treatment he gets the better things are.  He had other side effects that were likely associated with his pre-chemo level of health (i.e. diabetic type 2, stroke survivor) that were likely the most discouraging.  His advice to our children – make lifestyle changes now. Secondly he believes that cancer is still elusive to the medical profession.  They don’t understand it completely and consequently can’t predict how an individual will respond to treatment.  The medical professionals can give you statistically based information but they don’t know the spirit of an individual.  When he was given his first prognosis of 3 – 6 months without treatment, 8 – 14 with treatment, and even before he started chemo, he looked at me and said “I’ll easily double that.”

With respect to his current state of mind, this continues to be a difficult journey because of the unknowns.  At the outset of all treatment plans he was told he was terminal and all care was palliative, that he would never go into remission.  He has however, had some very good results with the chemotherapy related to his lungs.  We continue to await the results of a CT scan taken on Sunday to get a current assessment on his lungs.  If the cancer has effectively gone from his lungs – then where is he?  If he’s not in remission, what state is he in?  What does this mean for the future and what can we expect?  What does this mean for his original prognosis from a time perspective?

I believe that we have an appointment with Oncology next week, no one has called but I suspect that’s coming.  Likely the doctor will review the results of the CT scan as well as a pulmonary function test that my husband will have this Friday.  I don’t think I will wait until next week to get the results of the scan, I will call them this morning.  The psychology of cancer is the most challenging, takes you back to when you were a small child afraid of the bogeyman – you couldn’t see anything but the fear was real.

Now What?

DSC_6429

Yesterday was definitely a high point in our journey to date.  It was unfortunate that my husband was so ill while we were at the hospital for this appointment.  He definitely had an adverse reaction to the CT preparation that he’d had to drink the day before.  When we had met with the nurse prior to our appointment to go over vitals, etc., the nurse and I talked about how terribly he had reacted to the CT scan while he sat there clutching his little puke bag.  It’s not unknown for patients undergoing chemotherapy to have a different reaction versus their pre-chemo CT scan experience. Apparently it’s not uncommon to experience severe abdominal cramps, diarrhea or vomiting.  I wish we had of known, it would have eased some of the tension associated with our visit.  The night before our visit my husband had felt like the cancer was winning and it was a real challenge to get him to his appointment.  Oh well, that’s past history now and we move to the present.

Presently, he’s still not feeling great.  Today he had wanted to wake up and feel so different, but unfortunately it was more of the same.  Yes he had great news, and psychologically it was a real boost, but it didn’t change his existing physical challenges.  He’s rather beat up right now.  He still has his blood clot, although the leg is coming down quite nicely now.  The area of his leg that remains swollen is from the tips of his toes to his knee – previously it had been all the way up to his groin.  He has the purpura and petechiae, although this too seems to be lessening; he was given a prescription for antibiotics that should help.  He has the new concern of pleural effusion in his lungs to contend with.  His sense of taste is still off which makes him miserable.  His fingers and toes are exceptionally sensitive to hot, cold and touch. Perhaps most significant – he still has the fatigue associated with chemotherapy.  Next week we will meet with the Oncologist who will have had a chance to review the CT scan with his peers.  We are mindful that this group of experts may identify issues or concerns that may not be so good.  At this meeting we will find out his future treatment plan – most likely including more chemotherapy, scans, tests, blood work, appointments, etc.  Although we do have reason to be more hopeful about his prognosis, we recognize that we still have a lot of hard work, education, treatment and unknowns ahead of us.

We did get over to see his sister at the hospital.  She came through the surgery well, however, she is experiencing considerable pain and discomfort.  She has developed swelling in both of her legs.  The nurses are pressing her to walk but she isn’t feeling too steady or solid on her feet.  She did have a chance to meet with the surgeon who encouraged her to keep mobile but not at the cost of significant physical pain.  During our visit she appeared quite wan and exhausted which is a little worrisome.  While we were there she had a few other visitors so we didn’t stay long.  She had originally told us that she thought that she would be released on Thursday but I just don’t see it happening; another day or two would give peace of mind since she is not bouncing back quickly.

For me, I sit here and wonder now what?  Two siblings on a similar path – both of them travelling down it at the same time.  Kinda like having twins – I just wasn’t ready for it.