Stage IV Snapshot: the pill box

Today I had to fill my pill boxes for the week. I count out all the right pills for the right time of day. The little blue set I keep beside the bed. I take those pills as soon as I wake up. They are mostly pain pills, long and short acting, to get me going. I usually awaken very stiff and sore, particularly in my lower back and hips. I also take some stomach pills then. They work best if taken a little while before eating. The other pills pull out of the big case one day at a time. If I will be going out of the house, I transfer them to a smaller daily case that has room for extra short acting pain narcotics to deal with breakthrough pain. I have pulled something in my back or ribs. I am pretty certain it isn't a fracture, so I didn't get an x-Ray, but the pain requires frequent top-ups of my Dilaudid. The daily pills are taken with breakfast, lunch and supper, and finally at bedtime. So, best case, I take a handful of pills five times a day. In reality, because of the breakthrough pain, it is much more often than that.

Here is what I take on a good day. The breakthrough Dilaudid aren't there. See, I told you. Handfuls of pills.

If you were wondering about that little white pill in the middle. That is Tamoxifen. That is the ONE pill I take that fights cancer. One pill. I take it with supper, my biggest meal, because it is very hard on the stomach. Due to the Tamoxifen, I also take two Prevacid and four Maxerand a day to quell the nausea. It usually works. This afternoon I will go to the cancer centre for my treatment. No longer on chemo, I am still getting Herceptin by IV to stop the cancer. I get it every three weeks. I will also get Pamidronate today to help my bones rebuild, I get it every nine weeks, if my creatinine level doesn't creep too high. Pamidronate is hard on the kidneys and my kidneys are showing the strain. Herceptin can damage the heart. Thank God that hasn't happened yet. I get an echocardiogram every three months to check my ticker. So far, so good,

Most of my pills are for pain. Four Naproxen, a NSAID also known as Aleve. Three hydromorphone contin, a long acting narcotic said to be stronger than morphine. Then there are three Lyrica for nerve pain. I also get the occasional epidural to help with nerve pain. Oh, and because all the narcotics make me sleepy, I now take Ritalin in the morning and at noon. Ritalin is a stimulant. It works paradoxically in people with ADD to calm them down. It generally wakes me up. I don't take it every day, so it's not in the picture. I took it yesterday at noon and nevertheless I was groggy by one o'clock. It doesn't work perfectly. And then at night I take an Ativan. It is an anti-anxiety drug that I take to be able to sleep through the night, I think I am hooked on it now, I don't like that much, but I am very cranky when I don't sleep, so I keep taking it

A picture tells a thousand words. That is why I use my Stage IV Snapshot blog posts to give you a picture of my life with advanced breast cancer. I don't believe that the millions that are spent on breast cancer awareness have done much real good. In addition to taking attention away from other cancers unfairly, breast cancer awareness hasn't spread awareness of key facts, like how many of us are at risk of breast cancer. One in nine women will get it. Men get it too. And did you know that nearly a third of patients treated for early stage breast cancer will have it return outside the breast as Stage IV cancer. They thought they were cured, but there is no cure for breast cancer.

I try to raise awareness of life with Stage IV breast cancer, whether it is the emotional side, or like today the pharmaceutical side. I hope I can make a difference. Let me know.

A Guest post from Geoff on my Hospital Stay

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.

From today's Geoff Takes On (links added Nov 24):

Kate's Ongoing Health Adventures

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.