My son, Seth Oltchick, was diagnosed with Stage 4 Leiomyosarcoma in December 2017. He died March 15, 2020.
Living with us during this whole time period I had a firsthand opportunity to participate in his care and observe his treatments. In looking back over the course of these 2 plus years, I thought the following insights might be helpful to other patients and care givers who have to contend with their own struggle for survival.
- Do everything you can as early as you can to give yourself the best chance of long term survival. For example, change your eating habits to make your body and healthy as possible. Start doing ‘positive’ things so you feel that you have some control over you illness.
- Surround yourself with family and friends who will steadily give you the support you need to emotionally deal with physical difficulties this illness and your treatments will cause.
- Establish a physical conditioning regimen and maintain it as much as possible, even if you have to adjust as the disease progresses.
- Early on, think about an activity or trip that the patient would like to do. Incorporate the timing for this doing activity into a near term schedule. As treatments progress, these schedules, together with the physical impact of side effects, will make it difficult to do or enjoy these activities.
- Educate yourself on the disease, the potential treatments, the doctors and the facilities that offer treatments. It is recommended to seek treatment at a Sarcoma Center instead of facility that treats a wide range of cancers. Delve further into which ones are specializing in treating your particular type of sarcoma.
- Use a facility that offers a team approach to treating your cancer. One in which this team meets regularly to discuss and agree on a course of treatment. It’s likely that as the disease progresses several other specialties will be involved in your care. You want a holistic approach to be applied which initiates from the beginning and doesn’t require you seeking the participation of other specialists later in your treatment.
- Understand implications of the method used for you to contact your doctor and what is the typical response time.
- Do not be reticent about probing and asking questions about proposed treatments. Take every opportunity to discuss in detail what you are feeling, any new pains that arise or side effects that occur.
- Someone within the patient care group needs to become a research specialist on cancer, on the resources’ web sites, on new drug treatments, and particularly on clinical trials. Continually discuss new acquired information with your doctor as they are not always aware of the latest information. Raise the possibility of these treatments in your discussions with your doctor.
- At least one of your care givers needs to be a strong-voice advocate, who is not intimidated by doctors and medical staff.
- It will be very helpful to find an ‘outside’ source that has the experience of a cancer care giver. Someone who can offer advice or suggestions as you encounter all that is new in providing care to a cancer patient.
- Be prepared to switch doctors or facility if you’re not completely satisfied with the attention, treatment, care, services, etc.
- Plan ahead for handicap accommodations, movements, access, where the patient will live in the house, etc.. Anticipate what changes may be necessary and do not delay in implementing them.
- Divide up responsibilities among patient and care giver(s), so no one person is trying to do everything and it becomes a team effort.
- Understand that there may be a tradeoff between accepting standard treatments and participating in a clinical trial. Recognize that you may get to the point where you physically do not meet the criteria for a trial or have taken a drug that excludes you from a trial.
- Have a local primary physician who keeps up on your treatments and health condition or a local oncologist so you have someone who is nearby and can respond to immediate changes.
- If you need a surgical procedure, don’t just accept one doctor’s proposed procedure without getting a second opinion or checking into all the details; e.g. in-patient vs out-patient, drugs being used, possible subsequent effect on treatment.
- If radiation treatment is proposed, understand the different types that can be used and why a particular one is being applied for your procedure. Recognized that radiation will damage good cells and how this may affect you.
- Early on have a biopsy and ensure there is enough material preserved to do possible multiple analyses. Have pathology/DNA analysis early in your treatment and have it analyzed by a nationally recognized facility. Understand the insurance constraints and requirements for this type of analysis. Confirm ahead of time you have the right authorizations.
- While we all know that there is no guarantee about our lives, most of us think that death is something that will happen in the distant future. However, for those diagnosed with Stage 4 cancer that timeline is quite a bit shorter. So discuss with you loved one how he or she wants to live the rest of their life; what do they want to do with the time he or she has, recognizing that as the cancer progresses there will be less opportunity to do and enjoy what one wants to do.
- There is a balance to be achieved between taking care of a loved one and maintaining a livelihood routine both for yourself and your loved one. It’s possible, though, that maintaining a routine may obscure or shield the reality of the slowly deteriorating health of your loved one. Be attentive to this deterioration and really listen to what your loved one is saying, so you timely adjust the routine to be more ‘there’ for your loved one.
- Understand that, when your doctor says that it is likely the patient has only 3 to 6 months to live, this is an educated, experience based judgment. While you will continue to hope that it’s not true, live every day as if it may be the last so there are no regrets later on.
- Don’t put off having the ‘hard’ discussions about end-of-life. Do it early, before it’s a specter casting its dark shadow on every interaction with your loved one; before you cannot avoid the reality of what’s going to happen. Prepare the documents that establish the medical agent, power of attorney, funeral preferences, the will, etc.
- Think about what you want to have as memories of your loved one. Make sure you have photos of her/him before the cancer and the cancer treatments erode their physical appearance. Record conversations that will capture the essence of the person and allow you the joy of re-listening to her/his actual voice.