I have been a little quiet again. First, I spent a week at my brother's helping out after his wife had major cancer surgery. I came home on the train with nothing worse than swollen ankles. Then all hell broke loose. I will let Geoff tell the story, because I was in no position to. Here is a very scary story do infection gone bad. Surprisingly, this could be the way I go out from cancer, but not yet.
A couple of weeks ago, on a Saturday evening, Kate and her mom returned from a trip. I picked them up at the train station and both were tired, but in good spirits. Sunday morning, Kate started feeling a little under the weather - vomiting, chills and coughing. By Wednesday evening, she was delirious, incoherent and clearly hypoxic with blue-tinged lips and eyelids. She had brought our ten-year-old daughter to bed and fallen asleep beside her. I woke her up and we moved to the adjacent bedroom, where I tried speaking with her. She was make absolutely no sense and was having trouble answering simple arithmetic questions. Then she realized she had taken a double dose of the medication she is taking for issues related to her cancer, including an opiate for pain.
I was very concerned, and Lena was terrified despite Kate's slurred assurances that she would be fine. Finally, Lena and I insisted on taking her to the hospital. When we arrived we went directly to ER nurse's station. I could sense a bit of hostility from the triage nurse and could imagine her thinking "They came to the ER for a cold?". The nurse took Kate's vitals and I could see the concern sweep over her face - her heart was racing, her blood pressure was very low and her oxygen saturation was at a scary 75%. She told us that Kate likely had an infection that had gone septic (entered her bloodstream). Seeing how terrified Lena was, she suggested we stay in the waiting room while Kate was brought back to be hooked up to oxygen and fluids. Once that was done, Kate would look a bit better and hopefully be more lucid. Then I could bring Lena back to see her mom in a better state and that would calm her down. This was the first of many acts of kindness we would experience that night.
Indeed, we brought Lena back and she kissed her mom and had a few words with her and she heard the doctor, Dr. Caytak, tell me that Kate had pneumonia that likely went septic but that she was being treated with powerful antibiotics and fluids and would be fine. Eventually, the nurses and doctors convinced me to take our daughter to my in-laws, which I did.
When I returned to the hospital about an hour later, I walked into Kate's room and she seemed to be sleeping fitfully. A few minutes later, a doctor from Medical Oncology came in wanting to examine her. He tried waking her up, first calling her name, then gently shaking her. She would not awaken. The doctor became more insistent: yelling in her ear, shaking her vigourously, jabbing her sharply in her feet with his pen and pressing very hard on her finger nail with his pen and finally shining his penlight into her eyes. He told me: "This is very concerning" and rushed out to consult with the ER doctor. Dr. Caytak showed up, staying in the doorway looking from Kate to the monitor that was tracking her vital signs. Then all hell broke loose.
The doctor yelled, "She's going into respiratory collapse!" and he called to an orderly to come bring her to the Resuscitation Area. The orderly sauntered toward the room and the doctor yelled "Hurry! Hurry!" The orderly ran in and rushed her down the hall towards resuscitation and every doctor and nurse on the floor exited right behind them.
"Hysterical" isn't a very flattering word to describe someone's state of mind, but that's exactly what I was. In that moment I thought my wife was going to die. I was sobbing and begging for her to live, for the doctors and nurses to save her life. I couldn't get my head around being without her. I couldn't imagine how I would tell our beautiful, sweet little girl, who just an hour earlier heard the doctor say "She'll be fine", that her mommy passed away.
A nurse named Dan came out and started to try to talk me down, explaining that they were getting ready to intubate her and put her on a respirator and that she was surrounded by a very professional team that was well trained and equipped to deal with the situation. He spent maybe five minutes with me, but I'll never forget him and the enormous gratitude I felt for him giving me that faint bit of hope.
Several minutes later, the medical oncologist, Dr. Holmes, I believe, came out to say that as they were preparing to intubate her, Kate awoke from her slumber (wondering, she would later tell me, what the hell was going on and why was everyone standing around her like that) and was talking. I was able to see her, still sobbing, and eventually they returned her to her room.
I don't remember who explained to me what had happened or when they told me, but here's the story: When Dr. Caytak returned with Dr. Holmes to Kate's room and witnessed his failed attempts to arouse her from her sleep he saw that her blood pressure and respiratory rate were dropping - essentially they feared she was about to stop being able to breath on her own. They explained that her septic infection lowered her blood pressure and respiratory rates to an already low level. Then someone realized that among the drugs she had doubled up on in her delirium was a long-lasting opiate called dilauded and when that started kicking in, her vitals started declining even more. Once they realized this, they were able to counteract the effects with an anti-narcotic medication called Narcan and her vital signs stabilized.
The next several hours were very stressful: her blood pressure and respiratory rate remained low and here heart rate fast, but they were stable and eventually began to improve. Kate was eventually moved to a part of the hospital called the Acute Monitoring Area, where her vital signs could be monitored continuously. After a day or so there, she was released to the General Medicine ward and was eventually released the Saturday after we first took her to the hospital. Unfortunately, the day after she was released, she was feeling worse and had to be readmitted. Finally, just yesterday, eight days after we rushed her to the hospital, she was again discharged, hopefully for good this time. Though her recovery from the pneumonia will likely be long, she is feeling much better than she did even two days ago.
As an added bonus, now that she's home again, she can work on all the dishes and laundry that have piled up for the last eight days.
So many people to thank. I was really impressed by the care Kate and I got at the hospital. I don't know the name of the triage nurse who saw her first, but she along with the Nurse-in-Charge, Bonnie, got Kate in to see a doctor right away and showed tremendous compassion towards one very scared little girl. I cannot say enough about Drs. Caytak of the ER, Holmes of Medical Oncology, Sun of General Medicine. Kate's nurse that first night in Emergent Care, Anny, was just the type of person who should be in health care: professional, empathetic and very, very kind and just a quality human being. I really can't thank her enough. Also, Dan, who I talk about above, who had to deal with me at what had to be the scariest moment of my life.
Kate had the help of so many doctors, nurses, orderlies, respiratory therapists and physiotherapists over the next several days that I can't possibly mention them all here, but am grateful to everyone in Emergent Care, the Acute Monitoring Area, the General Medicine Ward and the Lung Disease Ward. Also many thanks to all the doctors from Medical Oncology who treated her after she was admitted the second time, notably Dr. Foeschl and Dr. Condan.
Finally, I can't thank enough all the friends and family who visited Kate or called or encouraged her via Facebook and for supporting me and Lena.
Though I complain a lot about suburbia, Kate, Lena and I have among the best neighbours in the world. I especially want to thank Barb, who cooked for Lena and me, who visited Kate in the hospital and who picked Kate up at the hospital and drove her home so she could spend a few hours with her family on her birthday. I also want to thank Pam for, among many other things, looking after the dog so I could spend more time at the hospital with Kate.
I haven't, really. In fact, I have been busy. My daughter and I walked the 5km CIBC Run For The Cure a couple of weeks ago. Between the two of us, we raised nearly $2,000 for the Canadian Breast Cancer Foundation, thanks to the generosity of our family, friends, neighbours and teachers. Much of that money will go to research. In fact, have a look at this video about how the Foundation uses the fund that are raised.
I have also been reading posts by my favourite bloggers. I have even written a guest post for "Telling Knots" which was published today. The timing is apt, as yesterday was the two year anniversary of getting my biopsy results, the day we told our daughter I had in curable breast cancer. Please stop over at "Telling Knots" to read my post and the other guest posts she is publishing this month. Like many bloggers this month she is putting the focus on those of us living with mets (that is, advanced breast cancer).
I managed to catch my dear daughter's cold this week. It came on strong. Within days, all I could do was sleep -- if I could sleep over the noise of my breathing. My voice is frequently a mere squeak. Fortunately, I had an appointment with my GP on Friday. He diagnosed me with virus-induced asthma. I have had "noisy breathing" off and on but never realized what it was. Now I have two puffers that generally keep my breathing silent.
Just a quick update, folks. After much thought, and discussions with nurses and my husband, I have decided not to go ahead with the insertion of the Port-a-Cath on Thursday.
The key factor for me was that my current treatment is oral Tamoxifen daily and infusions of Herceptin and Pamidronate every three weeks . These drugs don't damage the veins like chemo does. So I don't really need the port now. At some point, I should expect that this treatment will fail. Eventually I will have to go back on chemo. At that point, I will need either a port or a PICC. But I will wait until then.
For those of you who are deciding whether to get a PICC or a Port-a-Cath, here are the pros and cons as I see it. Please check with Dr. Google to learn about other aspects that I didn't experience:
Note: as soon as I hit "publish" I thought of more items for the list. They are marked with a "*".
Protects veins from chemo.
Once the incision heals, you can shower and swim normally.
Both inserting and removing the port require minor surgery. Healing from the port insertion feels like you've been kicked by a mule. I was aching and taped awkwardly, which made me walk like Igor from the old horror movies.
*The port site is exactly where your child's head cuddles you. Seat belts and bra straps will also irritate the site.
The port may erode the skin above it. In my case, I had persistent bruising at the port site (not normal) and later an infection.
I could feel where the wire looped up my neck. It was a little painful. Definitely icky.
In Ottawa, an appointment with a nurse is required to use the port for a blood test. If you want to leave the Gripper needle attached between the blood test and treatment, sterile dressing is required. So much for showering normally.
If your port isn't accessed every four weeks, you need a nurse to come to flush it.
The incisions (there are two of them) and the port site could form keloid scars. At the suggestion of my dermatologist, my doctors injected Kenalog (a type of cortisone) at the incision site to reduce the chance of keloids forming. It worked, so far.
Protects veins from chemo.
Painless accessing of the PICC for blood tests and IV medication.
Removing the PICC is easy. They slowly pull it out. I watched; it was cool.
You walk around with a bit of tubing sticking out of your arm the whole time. This is covered with sterile dressing. It is annoying in the summer. I had a weird tan that year.
A nurse must come weekly to change the sterile dressing and flush the PICC line.
You can't swim.
To shower you have to wear a plastic sleeve to keep the dressing dry. Your arm never gets a good scrubbing.
In Ottawa, an appointment with a nurse is required to use the port for a blood test.
If you are sensitive to adhesive, like I am, you may need to use Mepore (paper dressing) to avoid irritation. I later changed to IV3000. My skin was fine while I had the PICC, but I had some scabs form after the PICC was removed and the dressing taken off for good.
No PICC or Port
No holes in your body.
You can swim and shower normally.
You can walk in for blood tests either at the hospital or a local blood lab. No appointment necessary.
Chemo can damage your veins.
Blood tests and treatment will require a poke in the arm. If your veins are hard to find, as mine sometimes are, maybe two pokes. You may bruise at the site of the poke.
That is all I can think of. I hope these pros and cons will be helpful to someone that's just starting out with cancer treatment. I know I will come back to the list when I have to start chemo again.
Please add a comment with your experience with PICC lines and ports.
Well, so much for that Port-A-Cath. After only ten months, my Port-A-Cath abscessed and had to be removed. Apparently this usually happens in patients with little extra fat. I guess I just got lucky, not thin. The removal surgery, two weeks ago, was fairly straightforward. It was done with local anaesthetic and dissolvable sutures. I needed to be careful not to lift too much, which is hard with a new puppy who isn't confident on the stairs. Afterwards, I had to have my Herceptin and Pamidronate by IV, which went well. Next Thursday, I am scheduled to have a new port inserted on the right side, just in time for my next treatment. But I am having second thoughts. I have been off chemo nearly a year. The Tamoxifen is keeping my tumours stable. I get Herceptin and Pamidronate every three weeks. If I understand right, they aren't as hard on the veins as chemo is. I don't know if I have mentioned it before but I form keloid scars -- scary scars that keep growing for years, long after an injury has healed. Did my skin's nature play a role in my port's abscess and erosion? I could really use some advice. Do I really need to get a new port put in? Should I just wait until the day when I need chemo again? Or should I be protecting my veins from the Herceptin? What do you guys think?
None of us wants to go to the Emergency Room, but Tuesday night I was pretty sure I should. A sore erupted on the edge of my Port-a-Cath. That's not just unsightly. The catheter could take the infection straight into my bloodstream. I've been septic before and don`t want to risk it again. (Can you guess I spent some time with Dr. Google while waiting for a home care nurse to return my call?)
I have had persistent bruising at my port site, particularly to one side. It just wouldn't disappear between treatments, which are every three weeks. In fact, at my last treatment, I'd discussed it with my chemo nurse. She didn't have any advice for me. Earlier this week, I noticed that there seemed to be a small sore over the bruised area. I showed it to my Sweetie and we both said "hmm?" We were on our way to Montreal for a short visit and thought nothing more of it. Then when we returned to Ottawa I took a closer look at it after getting out of the shower. It was now clearly infected. The home care nurse wasn't sure what to make of it and wouldn't be able to see me until midnight or later. I called my family doctor's after-hours service and that nurse was more definitive: I should have a doctor examine it within the next four hours. Great.
We asked my daughter to hastily repack her backpack for a spur of the moment sleepover at my mom's and off we went to the hospital. Four hours later, the ER doctor assured me that I had no signs of sepsis, but certainly needed antibiotics, starting with an immediate double dose. He also suggested I give the Cancer Centre a look at it the following day. The nurse dressed the wound with antibiotic cream and gave me enough Cloxacillin that we didn't have to stop at the pharmacy on the way home. Instead we were allowed a few hours of sleep.
The next day, my Patient Designated Nurse put me in touch with Sheryl of the hospital's Port Team. She was able to meet with my when I came early for an unrelated specialist appointment (verdict of that after three months and two hours of waiting: no hip surgery). Sheryl has arranged for daily nursing to change the wound dressing. And she broke the news that my Port-a-Cath probably needs to come out. I now have an appointment next Tuesday to have it examined. It sounds like the infection needs to have subsided before they will risk the surgery. Whether they will put a new port in at the same time, I don't know. All I can tell you is that I`ve learned a few things in my ten months with my Port-a-Cath: