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.
Our little wonder pill – wonder what he will say today!
Since October 24 my husband has been taking prednisone to assist with clearing up his lungs and getting him back on track. His initial dosage was 60 mg (12 tablets) with the dosage reducing by 2 tablets every 5 days until he was weaned off the drug. When he was prescribed the prednisone friends of ours called it a wonder drug and that it would likely make a significant improvement in his breathing. However, these same friends, who have had first hand experience with this medication for over 20 years, stated there are a few side effects to watch for. I usually do research on the drugs my husband is prescribed but asked what else I should know since I had the benefit of an actual user advising me.
This is one of the consequences that our friends had warned about and probably is the most problematic for me. My husband has never been at a loss for words, especially if he doesn’t agree with something or thinks that it could be done a better way. He has always had an intolerance for stupidity. One of the lines I have heard over and over throughout our marriage is ‘stupidity is more prevalent than carbon’ (loosely based on a Frank Zappa quote). Since taking the prednisone it appears to have lowered his filters. Doesn’t matter If feelings get hurt, he says what he wants to – regardless of who it is to, however, it is usually me. It’s not that he doesn’t care, it appears to be that he can’t stop himself. Afterwards he will say that he didn’t know why he said it but it just came out. It doesn’t happen all the time, but it seems to happen at the worst of times.
Right now I am stretched between my husband and my sister-in-law and there’s not a lot left. If I am tired or preoccupied I may drop things (actually I’ve always dropped things!), might not find the right word when explaining things, may not jump right on specific requests; I am just generally processing slower. This new “directness,” when it presents, really challenges my restraint, and there is not a darn thing that anyone can do about it – me or him or anyone else. He is sorry as soon as he has said something, truly regretful and I know it, and I know he wouldn’t hurt me deliberately for the world. This is just a new twist at a time when we don’t need it. So we balance the good prednisone does with the temporary challenges that come with taking the drug and I look at the calendar and cross off the days. Funny how a simple act like that can make things a little bit more tolerable.
Today started off well with a positive update on my sister-in-law. Yesterday they had stopped the blood pressure medication and my sister-in-law appears to be holding her own in that area. Her temperature was normal and the antibiotics appear to be working. The nurse stated that the night had been good, and that things were on track. The doctor, during his rounds this morning, stated he is pleased with what he is seeing by way of response. He did advise however, that they had discovered a second bacteria in her lungs and are awaiting its identification; hopefully the present cocktail of antibiotics will be effective to address this new bacteria.
For the immediate future the intent is to get her breathing on her own, consequently the medical staff advised that they will remove the support provided by the respirator in the next few days. They do not want to keep her on it for more than 14 days and she is nearing that mark. If she is unable to breathe on her own, then they will perform a tracheostomy. Although this sounds dire, the hope is that she will improve sufficiently in the next couple of days and pleasantly surprise all of us by regaining her capacity in this area and this procedure will not be required.
Certainly during my visit yesterday I noticed visibly encouraging signs. I don’t know if she was registering that I was there but there was a physical response using finger movements to certain statements made. She is still sedated, but the level of sedation has been reduced – I can’t help but think that she is making her way back to us.
I won’t call these updates “surgery” anymore because we are way past that. My sister-in-law’s condition continues to be troubling. She HAS developed pneumonia and is now dealing with this new problem. She is still septic in her abdomen and is not responding well to the antibiotics she is on. She is on blood thinners, we have been assured, since the risk of a blood clot is a reality.
Today when I visited she had just been fully reviewed by the attending physician, who has ordered another CT for tomorrow morning. The nursing staff had washed her hair and given her a sponge bath and consequently she looked better than she had in days. They had also changed all her tubing and replaced all her lines. She remains swollen from the fluids. The level of mechanical support has been increased for both sedation and respiration. Despite this, her son, who was there (as always) was a bit more optimistic than he has been in recent days. The stress is definitely wearing on him but today he seemed to be cautiously optimistic, exhausted but hopeful. It could be that he felt an affinity with the Charge Nurse on today – Pam, her name is Pam, and she was impressive in her approach, kindness and outlook. We’ve met quite a few of the nurses throughout this ordeal, and they all leave an impression.
One stark reality of today’s healthcare is that most of the staff are part timers – that way the hospital doesn’t have to pay them benefits, it’s a cost savings. It speaks to the potential for lack of continuity in care since the only history the incoming nurse is going to look at is likely the last 24 to 48 hours. For my sister-in-law if we had our way we’d have a dedicated cadre of four nurses looking after her (night/day/weekend); developing a relationship with the family and with her – personalizing this experience. I know some will not agree with this but it’s how I feel. I believe that in some areas of the hospital it should be mandatory that the hospital staff areas with full time members to ensure knowledge transfer, awareness and consistency in approach to care – the ICU is one of these. Use your part time staff in Emergency – where the patients come and go within 24 hours, or even on the Wards; for palliative care, again, use full time staff – it provides a familiar face as well as stability and continuity for patients facing an uncertain and, in some instances, a short future.