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
- Pale skin
- Leg cramps
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.
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.
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.
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.
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.