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?

It’s Tiring Sometimes

Shadows, Cats, Paintings 039The last couple of weeks have been exhausting from a physical and emotional standpoint.  There is a lot going on and quite frankly, it drains one.  Sometimes there is no energy left for reasoning, analyzing, sorting, rationalizing, you name it, if it requires logical thought progression it can be a challenge.  Emotions, especially powerful ones like fear, despair, anger, frustration, can take away the ability to think things through clearly.  That’s kind of where we have been and are – it’s mostly the emotions of fear and despair that colour our world right now and so I have hesitated to write too much of anything.  Not because there’s nothing to write, just because what I would write about would reflect a fleeting state of mind and be based on feelings not on fact.

In the interim, we continue down the path of chemotherapy and have just finished the second treatment with Docetaxel.  So far so good, no major concern about nausea or vomiting so far – it’s only been about six hours though.  We continue to pump the fluids and I am staying ahead of the nausea by giving my hubby an anti-nausea medication on a regular four hour basis.  I will do this for today and again tomorrow and then we will reassess on Saturday.  It’s been a tough couple of days though.  He spent yesterday in Emergency for chest pains.  Luckily it wasn’t his heart, but unluckily it was the bone in his sternum – which he has already had radiated once for his bone cancer.  The sternum is too thin for any more treatment, but we will visit the radiologist next week to see what solutions she may come up with.  The last round of radiation was physically brutal as it was accompanied by significant pain, nausea and vomiting, however, in the long run it did work wonders in pain management after everything settled down.  If he elects to have more radiation, my husband will be well prepared for what he will experience.

More Tests

Last week was a fairly eventful week on all fronts.  My husband, his sister and his niece all went for their chemo sessions.

For my husband the chemotherapy was significantly different from his first round with Cisplatin and he has not had the same severe nausea and vomiting (so far!). Not feeling great, the fatigue is significant, but it is not the nasty vomiting and consequently he has not needed hydration.  His biggest issue has been the persistent pain in his shoulder/neck area – this is what has knocked him down this time.  During his pre-treatment discussion with the Oncologist he identified this problem and the Oncologist reviewed his CT scan and shoulder x-ray stating that nothing really popped out to indicate an issue.  However, he scheduled my husband for a bone scan which set for this coming Tuesday; hopefully we will find out what is happening in his shoulder and neck.  The pain has become unbearable and he has had to increase his pain meds to the point where he is sleeping most of the day.  His mind, when he is awake, is whirring away wondering if this is the cancer back and spreading.  His one greatest fear is that it will spread to his brain.  So Tuesday is the bone scan and by Wednesday or Thursday we will find out what is going on, if the pain is related to spread of the bone cancer, if it is neural in nature, if it is arthritis, whatever, he just needs to know.

My sister-in-law had her treatment on Wednesday.  It seemed to go well, once they addressed her allergic reaction.  She’d had her treatment in the chemo suite and had gone downstairs to wait for her ride home.  While she was sitting in the lobby she noticed that her hands had gone quite red.  A few minutes later a nurse, one that actually worked for her Oncologist, saw her sitting in the lobby and asked her how the first chemo went.  My sister-in-law stated good, except I can’t believe how fast I developed the hand and foot syndrome associated with this chemo.  The nurse looked at her hands, actually saw that my sister-in-law’s neck was turning bright red, and hustled her upstairs to address the allergic reaction she was having.  After they pumped her full of meds and were satisfied she was okay, she left the hospital.  She was still hooked up to her “baby bottle”, which kept the treatment going for another 48 hours.  We saw her that evening and she was in good spirits, probably a little buzzed out by the meds to treat the reaction, but quite mobile and upbeat.  Her son was coming up to stay overnight with her and all seemed well.  The next day she was okay, had a bit of a headache and the baby bottle didn’t seem to be infusing the meds. There had been a kink in the line and once straightened out the meds started flowing.  The fatigue hit by Friday as well as high blood pressure.  She still is dealing with high blood pressure but looking forward to feeling better as the week progresses.

My niece has been flattened by the chemotherapy.  Her treatment is aggressive, she knows she will have severe nausea, she knows she will lose her hair, and she thought she was prepared for the fatigue – but she wasn’t.  What she could do previously without thinking about is now out of the question.  Just doing a load of laundry is exhausting. She doesn’t live close by so we haven’t been able to see her.  She’s phoned my sister-in-law on a regular basis and they are comparing their chemo experiences.  Fortunately this often results in a bit of laughter as they try to rationalize what the hell is happening to them.

The road ahead for all of them is quite different but likely the physical trials will be similar.  I have to say from my perspective, sometimes it feels like I am living someone else’s life and not mine, that is how different things have become.

Koyaanisqatsi

Koyaanisqatsi is a Hopi word that loosely translated means “life out of balance.” (Ref – Wikipedia).  This is how I view my life.  It has no balance, it swings from high to low and it is like quicksilver, changing with a fluidity and momentum that defies description.

Today was results day for my husband’s most recent CT scan so went to the hospital to meet the Oncologist.  The results were not great but not the worst either.  In this CT scan the radiologist identified a blood clot in my husband’s lung that apparently had shown up on previous scans but not been mentioned or brought to anyone’s attention until our discussion today.  A little worrisome but hopefully the Fragmin (blood thinner) will continue to allow the body to break the clot down over time. The Oncologist advised that my husband’s cancer has progressed from his last CT scan.  The cancer’s progression has manifested in a couple of nodules and lymph nodes in his lungs.  Not huge increases but significant enough to put my husband back into the chemo grind starting this Thursday.  The original “mass” is still not in evidence, however, another large nodule was identified in his lower right lung.  So the chemo is without a doubt the way to go.  The drug administered, however, has been changed to Docetaxel which has different side effects from the first combination of drugs used. I suspect that the last of his hair will go and the fatigue again will be an issue – I am hoping that the nausea is not.  This remains to be seen.  The chemotherapy sessions are three weeks apart and there will be three.  So the next nine weeks are scripted.

The visit to the hospital today meant I got to meet up with my sister who works there.  She always pops over for a visit, if she can, her schedule permitting we’ll have a coffee or lunch.  Today was a brief chat – just long enough to hear that she had her own issue – the week before she’d had a minor heart attack.  She attributed it to stress, which is likely correct, but how do we remove the stress out of our lives?  Even when we think we have a handle on things oftentimes we still feel stress or strain or frustration or fatigue or concern (and so on) about events occurring within our lives.  The usual response to something like this is a prescription which makes it all seem better but never really addresses the underlying causes.  Needless to say hearing this news from my sister was very upsetting.

My sister-in-law commences her first chemotherapy treatment tomorrow.  She has a cocktail of chemo drugs that include Oxaliplatin, Fluorouracil and Leucovorin.  Her treatments are every two weeks and will continue for approximately six months.  She will have the chemotherapy treatment at the hospital but will leave with a “baby bottle” that continues the treatment and will be removed approximately two days after the initial hospital administered treatment.  Reading up on these drugs it appears that fatigue will likely be a significant factor throughout, but everyone has a different response and we can only hope that for my sister-in-law she has a good response to the treatment.  Her attitude is great going in – just get ‘er done.  Likewise tomorrow my niece (in-law) starts her chemo treatment for breast cancer.  This is the start of a very aggressive program since it is her second go round with breast cancer,  I can’t imagine how she is feeling.

This is the chaos of my life – all around me crazy things are happening – life altering or life threatening things.  It’s out of control – which is the one true thing, the utter lack of control.  This is the reality we all face, we do the best we can but still nasty stuff happens.  Right now it is “koyaanisqatsi” for our family and we seek ways to bring things back into harmony and balance.