So it has come and gone again. The anniversary of Kevin’s death. Year two in the books. Not easier at all. I don’t know if it was harder, but I do know it wasn’t easier. This year Easter fell similar to the year he died. Kevin died on the Sunday before Easter. I pushed to have the funeral on the Thursday before Good Friday. Deliberately so it wouldn’t wreck anyone’s long weekend plans. It likely/probably did, but at least they didn’t have to go to a funeral on one of their days off.
This year, just the way it fell, I found it hard going into the weekend. And it wasn’t just me, his sister, my kids, we all felt it. The memories sit in your heart and hurt with each beat. But more than ever I realize that this is it, what I have now is on me, and I need to appreciate what I have. This is what Kevin fought for, why he went through chemo, what he was so desperately trying to hold on to. Life: to watch his grandkids grow up, to enjoy his family and friends, to explore, create, attempt new things. To see and to be; to wring every bit of enjoyment out of every single day. It’s all right there for anyone who wants it.
So, I just have to figure out how to want it. So far I am not applying myself very well.
The Travellers aren’t going anywhere too fast. The snow just keeps coming!
A few things have happened in the last week that have had some impact on our circumstances. First and foremost, my sister-in-law has been taken off of her chemotherapy treatment. She has had a series of issues with her ileostomy that appear to be aggravated by the chemo she was on. As a result, at her last meeting with the Oncologist, he made the decision to stop her chemotherapy until her stoma has had a chance to heal. She had her picc line removed as well, since the Oncologist believes that it is unlikely that she will be able to commence this type of treatment again. There are other options for her, but until her stoma heals he is reluctant to put her through anything more. It’s somewhat bittersweet – there’s relief that the chemo has stopped, but it is likely short-lived and, as well, there is the ongoing fear of the potential for the disease to return. So although it was nice for her to not have to endure the physical pain and associated issues with her treatment, there is still a need for treatment and this reprieve is likely a short one. At present it is a “wait-and-see” approach. She’s still tired and has limited energy but at least now she can focus her energies on healing.
As for my husband, his cervical spine has been very painful and is draining all his physical energy. He hates taking pain killers because they make him feel dopey but it is better than being in agony. Sleep tends to evade him since finding a comfortable position is a challenge. As a result of his discomfort we spoke with the Radiologist to explore what his options were. Out of that conversation an MRI was scheduled at the hospital to look at his spine to get an accurate assessment of what is going on. So today was MRI day – it was a long scan taking about one hour to complete. We meet with the radiologist next week to get her recommendation on treatment.
We are entering the final days of waiting for our third grandchild to be born, our daughter’s first child. She is having a little boy who already has been nicknamed Chip. She’s had a good pregnancy, but in the last couple of weeks developed a cough and subsequently dislocated a rib. That was about two weeks ago and things had started to heal and then yesterday doesn’t she pop it again – poor kid, she’s in a fair bit of pain and knows that the rib could be an issue at delivery time. This baby has been one of the most key motivators for my husband in staving off his cancer and we are almost there!
The weather here continues to be cold, cold, cold. We have had some serious snowfall and now we are entering a deep freeze. So cold that my outdoors cats will only sniff the air when I open the door to let them out – they sniff and then run back in the house. My little dog lasts about a minute outside, I’ve never seen her be more efficient at doing her business. There are a few more days of this weather and then hopefully it will break. When it gets to minus 20 or minus 30 Celsius the air literally can take your breath away. So no walks for us at the present.
Oblio – the mighty hunter. Every night we have a mouseacre in our backyard!
Yesterday was blood work and consultation with the Oncologist prior to chemotherapy scheduled for today. This would be the fourth and final session in this treatment cycle. We attended the clinic and had the blood work drawn and then waited to meet with the Oncologist. Previously, after the third session of chemo, the Oncologist had reviewed a CT scan taken at that time and had given my husband very positive feedback but had identified a potential infection in his lungs. Since that time, my husband had been for repeat CT scan to see if the pleural effusion in his lungs had cleared up as a result of the antibiotics he had been prescribed.
Again, yesterday’s results and discussion with the Oncologist remained quite positive. The pleural effusion has not cleared up completely but has reduced slightly. This led the Oncologist to believe that perhaps what was happening in my husband’s lungs was actually a reaction to the chemotherapy. Based on that, and on the fact that my husband’s physical response after three sessions of chemo was likely to be optimal, we considered whether a fourth session would provide any benefit, or if in fact, it could present risk.
We were presented with two options. First, my husband could have his fourth session of chemo as scheduled (today), after which they would enrol him in a maintenance program where he would get a small infusion of chemotherapy every three weeks. The second option was that he could stand down from his chemo treatment, with no oncology treatments for two months. At the end of this period he would have a CT scan and blood work to determine the status of the cancer in his lungs/bones, and an appointment with Oncology. With the first option he would remain immune-compromised, however, Oncology would have close scrutiny of the status of his disease. With the second option he would be required to self-monitor and advise Oncology if anything was presenting that could show the disease was back in action prior to his two month appointment. Needless to say, he elected to go with option two, and consequently he was able to have his picc line removed.
For us this is a slight reprieve. We have an opportunity to make serious modifications to lifestyle and diet. We have two months to continue to work towards improving my husband’s health. My goal has always been to make him “that guy.” The one the Oncologist will reference at the discussion table when considering what the optimal outcome is. The guy that beats the odds or pushes the boundary just that much further. Whether he will be that guy or not remains to be seen, however, we will explore all options and research thoroughly what is available.
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.
This day is almost in the books and we move on to tomorrow. There is an ominous feeling that just doesn’t want to go away. My husband reminded me that the last time he had a CT scan he got the worst news of his life. Consequently, having this second CT scan does not generate a feel good sensation. He’s quiet and preoccupied. For him he views it almost as a lose-lose. His reasoning: if it is working then he has to have more chemotherapy which knocks him out and makes him feel awful; if it isn’t working then he’s spent three months feeling lousy for nothing. It’s hard to reach him and futile anyway. This is his own private hell. Nothing I say has any weight – because we don’t have the answer yet.
I truly do believe that the chemo has helped. I also think that if he gets a good or at least decent report as a result of the CT scan his spirits will lift considerably. Today is just a point in time and tomorrow will bring a whole new perspective. We’ve had a large number of communications via phone and text from friends and family today, and I’ve shared every one with him. There is a world of love around him and he knows it, it may not seem like he does, but he definitely knows it.
His sister’s surgery went well and we even had a chance to get a quick visit in with her. She was in good spirits, a little drugged which made it quite funny. It was good to see her and it took a large part of the worry away. So on to our major hurdle for this week – finding out if we gained more quality time with a special guy.