What came first, the cold or the cruise?

So much to write about, but where to start?  Let’s start with the flu shot.  I had a cruise booked from November 12 to 19. Out of Miami, and miraculously none of the four ports we were scheduled to stop at had been decimated by hurricanes, typhoons or other acts of God.  What a lovely thought, kicking off winter going some place warm, but I had to get there first.  That meant exposure, germs, coughing, sneezing, slimey little bacteria lurking to nab an innocent victim.

It was a bit early for the flu shot, but I tracked it down – available at a local clinic.  The clinic was open for seniors and immune compromised individuals.  I spoke to my doctor to get in and get the shot, explaining my travel plans.  Fortunately she agreed with me, I needed the flu shot, my history indicated that I don’t travel well.  Three weeks before my cruise I was in and vaccinated.  Take that, evil germs!

I got the shot on a Friday after work, by that night I was feeling awful.  My shoulder really hurt.  The next morning, full of aches and pains I decided maybe I was one of the unlucky ones to experience a more severe reaction.  Oh, well better the suffering before the cruise than on the cruise.  By the next Monday, I was okay, felt a little under the weather but got through the week.  By the next weekend I felt awful again, body aches and pains, a headache, those normal seasonal things that working in a large office exposes one to.  By the end of the week heading into the cruise I was pumped, felt great.  Ready to go, confident that I had dealt with all the stuff that I now associated with that flu shot.  It was worth it to ensure I was in optimal shape for travelling.

Itinerary:  Friday – drive to Toronto and stay overnight at the airport, Saturday – depart Toronto to Miami where we’d overnight and on Sunday pick up the cruise.  A nice leisurely, stress free, relaxed approach to getting from point A to point B.  Not without risk of germs though, flying has always been the most likely place for me to pick up something.

I was travelling with my sisters – one was healthy, one was germy, also a significant risk for obvious reasons. No fear, I had my flu shot.  I was taking immune boosters, I was going into this trip feeling good, I had this.  Nope.  By Sunday night, the first night of the cruise I started to feel awful. By Tuesday I’d lost my sense of taste and couldn’t breathe.  By Thursday, I had my taste back but had started coughing.  By the time it got to the weekend I was dreaming, or was it hallucinating, about my brass bed and my bathtub. I just wanted to be home.

I always bring some supplies with me when I travel, but nothing touched this.  The ship’s store had no supplies to speak of, and the ports we stopped in had all sorts of available medication – but I didn’t know what I needed.  I had a friend on the same cruise with me.  Thank God!  Not only did she bring stuff, but she brought essential oils to use.  Unfortunately the cough, cold, flu whatever had gripped me too fast but at least I could knock myself out with sinus medication.

So here I sit, at home just writing about this now.  Why, because it didn’t end there.  I managed to go into work the Tuesday after I got back and squeaked out the week.  By last Friday I was in the throes of a high fever, aches and pains, extreme fatigue and nausea.  I decided to stay home Monday and heal, nope got worse.  Yesterday I visit the doctor.  A miracle really, because her office was actually closed, she was doing paperwork, but they squeezed a few people in, and I was one of the lucky ones.  The result – “No point in swabbing you now,” says the doctor, “You’ve had this for a bit.  It sounds like the flu, it’s here in the community, but something else is going on there.  Sinus infection.  And to be safe let’s get a chest X-ray while you’re here.  Yes, you’re contagious until the fever goes away and the cough stops.  Bed rest, I’ll call you when I get the x-ray back.”

Today, she called me about the x-ray.  Pneumonia.  Why not?

Blood Work

Another week looms and another test.  On Tuesday I take my husband for a CT Scan and some blood work to get a sense of where things are at. There is no doubt that he is at risk with a depressed immune system.  His hemoglobin remains quite low, but without the blood work we don’t know if it has improved at all.  The blood transfusion didn’t seem to make a significant impact on his level of health at all.  Physically he uses his walker to move around the house and is quite wobbly without it.  Cognitively, he has a delay in processing, when you ask a question there is a definite lapse before it registers and he responds.

His appetite has been a challenge.  This is saying something since he has been an awesome patient from the get go.  Prior to this, when I put a meal in front of him, despite it tasting too sweet or too salty, he usually managed to get it down.  Not for the past week.  His appetite had completely gone which put me into full blown crisis mode.  I don’t usually try to guilt him into anything but this last week I did.  Amazingly on Saturday he finally started to eat again.  Now comes the task of building him back up again.  When this journey started I found a recipe for geared towards building up cancer patients called Magic Mineral Soup, and today the house smelled of  simmering veggies as I made a large pot of broth.  Hope springs eternal.

The visiting nurse was in three times last week.  She’s an awesome resource and does a great job in reading my husband’s moods.  She has established a rapport with him and seems to know when to air out concerns that may have been swimming around in his brain without him really even knowing it.  During her visit on Friday she talked to him extensively about anemia and how it can make a person feel.  My husband’s hemoglobin was at 84 when they administered the blood transfusion and the nurse didn’t think he got much benefit from it. Consequently it is likely that he is still severely anemic, but the blood work on Tuesday will determine this conclusively.  However, until then she wanted him to realize how the symptoms and issues he is having align with that of anemia.  This discussion was important since in my husband’s mind the symptoms and issues he is having mean the cancer is spreading and he is, as he stated more than once to me last week, dying.  And really, when you consider the type of cancer he has, which is lung cancer, and the symptoms of anemia there’s no wonder he feels the disease is on the move.  As WebMD states:

Symptoms common to many types of anemia include the following:

  • Easy fatigue and loss of energy
  • Unusually rapid heart beat, particularly with exercise
  • Shortness of breath and headache, particularly with exercise
  • Difficulty concentrating
  • Dizziness
  • Pale skin
  • Leg cramps
  • Insomnia

(Source:  WebMD.com)

For now we wait a couple of days and then go for some tests.  Once we get the results back from that we will decide on next steps.  We have talked about how hard the chemotherapy and radiation together were on him physically.  I doubt that we will consider doing both in the same treatment cycle again.  Indeed, radiation is something that seems to knock him down further than the chemo, so I don’t know about any more radiation.  Again, discussions and decisions will be made after we receive the results of the CT scan and in consultation with our Oncologist and GP.

And Then

So Saturday, Sunday and Monday were fairly eventful for our immediate family.  There was also some incredibly sad news that we were informed of.  On Sunday morning one of my husband’s buddies called to inform us about a good friend and former co-worker of my husband, an incredible man named Tom.  Unfortunately Tom had died of a massive heart attack on Saturday night (Feb 28th).  In order to ensure that the first meeting with the grandchild was not marred by sad news, I decided I’d take my husband over for his visit with “Chip” before he found out about Tom.  This turned out to be a good decision.  When we got back home from the hospital and had settled back his friend came by and told him about Tom.  It was remarkably sad and since he was already low it sent him even lower.

This news likely contributed to the weakness and undermined his already challenged health resulting in our visit to Emergency on Monday.  We live in a small city and most people are well informed about what’s happening and to whom.  It was no surprise when our GP called to say she was stopping by to do a check in on my husband.  She’d heard about Tom and knew he was a good friend and wanted to get a sense of how my husband was handling the news.  She also knew that another of my husband’s friends, Pat, had no more than a week prior to Tom’s death, ended up with a triple bypass as a result of a heart attack.  So the GP arrived on Wednesday morning to do her assessment.  Out of her visit my husband was scheduled to be  fitted with oxygen for the home as well as a blood transfusion.  The GP also spoke with us about consulting further with the oncologist about whether or not to proceed with this week’s chemo.  She provided us with some questions to ask our oncologist to make an informed decision about future treatments.

The visiting nurse, a respiratory technician and a visit to the Blood Transfusion Clinic rounded off our week.  Four out of the five days (we only missed Tuesday) were spent in the delightful company of a medical professional of some sort.  It was a week not to repeat, I hope.

To date, the antibiotics seem to be working on clearing my husband’s lungs, the oxygen definitely helps and we are waiting for the blood transfusion to make a difference in his energy levels.   We have two more appointments to set up in the immediate future, one with a respiratory therapist and one with a physiotherapist.  Hopefully we can get these arranged in the near future.

My husband’s sister continues to come by every day, without fail.  She’s managed to get us all addicted to the Young and Restless soap opera.  To the point where visitors are not welcome when the program is on, and if someone does stop by the program has to be pvr’d.   My sister-in-law is still suffering some of the results from the chemotherapy that she had.  It’s hard for most people to understand that the results of the chemo linger on for a considerable time after treatments have ended.  She’s still very fatigued, her hair continues to thin and she still is experiencing “hand and foot” side effects.  She also in the near future has a decision to make with respect to her ileostomy and this is another issue that is weighing on her mind.  Regardless, my husband’s sister is here every day doing exercises during the commercials for the Y & R, and bringing him little treats to have with coffee while the show is on.  It’s a nice routine and one that he looks forward to immensely.

Out of the events of last week I was reminded how important it is to remember that the patient or the patient’s caregiver are the primary advocates for patient health.  Chemotherapy can assist in the battle against cancer, but if a patient is too weak, it can also be a contributing factor in patient death.  I doubted my husband’s ability to bounce back from his chemotherapy treatment this week.  We will give it another week or two before we meet with the Oncologist to ask him our two primary questions:

Is he responding to this chemotherapy treatment?

Does this chemotherapy treatment pose any risk to his already vulnerable lungs?

Radiation Update

We continue to battle the effects of the radiation treatment.  The most challenging piece is, as always, the pain management.  This time round, although we were more informed, we ended up not being more prepared.  With my husband’s first round of radiation he was not on chemotherapy;  with this round of radiation he was.  The difference was that he went into the radiation already weakened and with a low hemoglobin which the radiation effectively wiped right out.  So this past week has been rather exhausting from trying to manage the fall out.

On Saturday the 28th of February our daughter had her baby – a healthy baby boy that weighed in at 9 lbs 5 oz.  It was considered a high risk delivery since a routine ultrasound the day before (Friday) determined that my daughter had no amniotic fluid.  This meant that the baby would need to be delivered within the next 24 to 48 hours.  Despite the lack of fluid, all of the baby’s vitals and my daughter’s were fine and consequently the decision was made to induce her and work towards a normal vaginal delivery.  This was not to be.  Unfortunately after 90 minutes of serious pushing the baby had not budged.  It appeared that his head was tilted upwards and his position was slightly off preventing his progress into the world.  A caesarian was required and at just after 8 pm he made his entrance.  Nerve-wracking for me, as I was in the labour room with my daughter watching it all go down, but absolutely devastating for her father who was already an emotional wreck and receiving sporadic and edited updates from me.

Sunday it became apparent that the stress of the day before had created some additional health concerns for my husband, and for his sister who had joined him in waiting for baby’s arrival.  They were both spent physically.  My husband was having difficulty breathing, his colour was off, and his fatigue was overwhelming.  Despite feeling lousy, he still was determined to make a brief visit to the hospital to see mommy and baby and then that was it for the day.  By the next day (Monday) his symptoms had worsened and I made the decision to send him to the hospital by ambulance.  Although he was incredibly annoyed it turned out to be the right decision.  His oxygen level was low at 89, his hemoglobin low at 84 and his chest, after x-ray, appeared to be congested presenting as either pneumonia or spread of the cancer.  The attending respiratory doctor also wanted to talk to us about the implications of continuing on with the chemotherapy treatments advising how any one of these complications could be fatal.  It was exhausting and frustrating and frightening and at the same time our reality.

It was three absolutely exhausting days but the week didn’t let up – nope not at all. I have learned to never ever utter the words “what else could possibly happen” because invariably something else does.

More Radiation Today

This afternoon we head down to the hospital for more radiation on my husband’s spine.  The radiologist identified three spots that she feels will give my husband some relief from his pain, C6, C7 and T4.  There are the spots that will be radiated today.  As always there is risk especially when dealing with the cervical spine.  He will need to be medicated to ensure that he remains completely still on the radiation table.  The potential side effects include some inflammation to the voice box which will pass but may make his voice raspy for a bit, some swelling and tenderness in the areas radiated (this is an understatement, but we know that) and some nausea since T4 is near the stomach.  There are always the other possible side effects of paralysis or death.  Last night was not a restful one for either of us, but balancing the potential pain relief this seems the route to go.

There’s also a bit of a fear about the timing.  There will be disbelievers out there but anecdotally we’ve been told to try and avoid any sort of a procedure on a Monday or a Friday.  The focus of the technicians could be somewhat diminished.  And here we are going in as almost the last appointment on a Friday.  Somehow we will communicate this concern to the technicians carrying out the treatment.  To them it is a job, an important one, but still their work – to him it could be the difference between mobility or death.  Let’s hope we have the ‘A’ Team on this afternoon!

We continue to wait for the birth of our daughter’s first child.  She is due now.  She’s had a very good pregnancy and I certainly anticipate that her delivery will be just as good.  With the actual due date being Saturday, and the fact that she has started to have fairly persistent cramping, I suspect that we will see the wee bairn in the next couple of days.  This was and is one of the most important milestones in my husband’s cancer journey – to meet this grandson.  Barring no absolute disasters on the radiation table he will be doing just that.