It’s been a long time since I posted and a lot has happened. I thought I’d update in bullet points and then later fill in some gaps in more detail.
Hospice has been great. Once I got on hospice many of my logistic and organizational problems where taken care of. I see a hospice nurse & social worker weekly — they are wonderful. I get all pain medications and physical items like oxygen, hospital bed, etc through hospice.
I now have a Home Health Aide I private pay to come 3 days a week who helps with day-to-day things. I only shower or wash my hair when she is here, using a shower stool. As things progress I will have more around the clock care.
- It Takes a Village:
It takes a village to raise a child and it takes a village to help someone live well while dying. I have been incredibly blessed with friends and church family who have come alongside and made this journey so much easier. Earlier this year, since I do not have a primary caregiver to help on a daily or weekly basis, I was worried my needs would not be met and I would be alone trying to figure this all out. God has shown me I am never alone and he has provided a huge family of loving, kind, patient, helpful, people that together are a collective primary caregiver meeting all my needs from coordinating care, and doctor’s appointments, traveling with me to appointments & blood transfusions, organizing & coordinating things I’m too overwhelmed to see to, making multitudinous phone calls, doing my laundry, bringing food, cleaning, shopping, doing dishes, maintaining the air filter/humidifier, cleaning the oxygen tank filter, bringing in the mail, checking up to see what I need each day, holding my hand, letting me cry and making me laugh. I am oh so grateful to you all.
- Blood Transfusions:
I’m now living from blood transfusion to blood transfusion, like a vampire living on other people’s blood. Because of extensive cancer in bones the bone marrow is no longer able to make red blood cells, which carry oxygen to every part of the body/brain and also carry carbon dioxide out to the lungs where the toxin is exhaled from the body. Without the new blood I’m getting through transfusions I get weaker and weaker, and have more inflammation. The first transfusion I had in May was miraculous in the result and even allowed me to travel to Florida to see my 92 year old Mother who I thought I’d never see again.
You can get blood transfusions while on hospice as long as they are helpful, the benefit usually lasts a few weeks, however they do not stop progression of disease and get less and less effective. The last one I had on July 16 did not help as much. Also, you can only get a transfusion if your hemoglobin (HGB) is under 7.1g/d. Normal hemoglobin for women is 12-16g/d. Mine was 6.3 the first time I got a transfusion. So I have to wait until I feel really awful before I can get a transfusion.
- Progression of Disease:
The last blood transfusion did not help much and I am not able to stand for more than a few minutes without feeling dizzy. I cannot sit up for very long without needing to lie down. When I’m lying down I feel pretty good and do not have shortness of breath. However, I am using the oxygen more and more for longer periods of time.
The disease is now in my brain, which I’ve suspected for sometime as I’ve been having headaches on the left side of my head for months that have been getting worse. Anyone with cancer gets worried when they have headaches because with many cancers, including metastatic breast cancer, the brain is one of the primary soft tissue places for metastasis, as are the lungs and liver (I have extensive liver involvement as well.) I was hoping the headaches were due to Ibuprofen rebound headaches but no painkillers could get rid of them and that was because they were caused by the disease pressing on a nerve/nerves in my head. The left side of my face has been constantly numb and that is also due to pressure on the nerve/nerves.
- Pain Control:
I feel like writing an article called “The Myth of Pain Control in Advanced Cancer”. Everyone I know that had advanced cancer struggled with pain control and that’s why people at funerals say “Well, at least they are out of pain now.” I did pretty well on Vicodin for a while but that damages your liver so I was told to take oxycodone or hydromorphon. I’ve never really been able to get control of my pain until this week when I was put on Morphine, Gabapentin for nerve pain, and a steroid to reduce swelling in the brain, Dexamethasome. If you have nerve pain no other painkiller will help except one that specifically targets nerve pain. I am so relieved that for now I can control the head pain and the morphine also works on my back and other areas of pain. Before this week I’ve been covering my head and back with ice packs while taking oxycodone or hydromorphon — both make me sick to my stomach even with the antinausea pills. I was worried any opiate derivative would make me nauseas but Thank God the morphine does not make me sick. (How do people get past the nausea (not to mention sever constipation) to even get addicted to opiate drugs?!?)
I am grateful to be living at a time and in a place where painkillers exist and so much help is available. It humbles me when I think about how most of the world suffers. Even as my disease limits my life it has given me a much more comprehensive perspective.
“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day… So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” —2 Corinthians 4:16-18
posted 08 Aug 2016: http://hopeandcourage.com